Below is the abstract from the paper.

Cerebral Venous Infarction: A Potentially Avoidable Complication of Deep Brain Stimulation Surgery.

The book has been translated into more than 20 language versions.

Wheels up.   That phrase has meant good times and has been followed by many fun and challenging experiences that were the source of many good columns.  This time the wheels left the ground just after 7:00 a.m., on May 24.  Our destination was Burlington and the Vermont City Marathon.  My hope was to qualify for the 2014 Boston Marathon; a goal set only after this year’s explosions on Boylston Street.  To succeed, I needed cool temperatures.  That meant either waiting for late summer (but no later than early September) or compressing the training schedule and targeting a late spring race.  I decided on a late spring opportunity and join running friend Felton Wright in Vermont.

My qualifying time for Boston is now 3:40, but it will probably take something closer to 3:30 to be sure I get in.   While I once would have been very confident in my ability to get under that time; age, injuries and some health twists have made the task much more challenging.  And while the predicted temperature (41) is good for a clear calm day, the prediction for race day is 15 plus miles per hour wind and a 70% chance of rain making for a really miserable morning.  It hasn’t stopped raining since we arrived

There is another twist to the journey that led me to Burlington.   After undergoing surgery to repair a hamstring, I rebuilt some of my fitness and was feeling pretty good about the results.  We never seem to get back to the levels of pre-injury days, but the hamstring healed fully and I was moving in the right direction.   At some point though it began to seem as if I was running into a glass wall.   What seemed relatively easy one day, seemed hard the next day.  Speed work was erratic.  It seemed to get worse in the spring of 2012.  All my health checks including blood work were good though. So, I struggled between believing something was really wrong and thinking I had just lost my ability to be tough.

Runs through the summer kept getting harder. I was falling more during runs.  I had developed what I assumed was a nervous tremble in my right thumb.  There were other strange things going on, but nothing I could say meant anything for sure.  Then I noticed a little tenderness in my left hamstring – the one I had never had a serious problem with.  I had a run where it seemed my right arm was going numb.  I waited for a heart attack. It never came of course, but every effort made the hamstring worse until it completely sidelined me.

And then there was The Coaches Run 5K on September 8, a race that honors Mike Schneider, a legendary coach and mentor for middle school runners. Coach Mike died not too long after being diagnosed with Parkinson’s.  The race had a small turnout, but I didn’t want people to forget what a wonderful contribution he had made.  I wasn’t sure how to spell Parkinson’s though and so I searched on Google and found a very informative website.  I noted the correct spelling and then my eyes were drawn to the symptoms listed on the page.  I don’t remember exactly, but there were something like 9 symptoms and I could check 7 of them off and the trembling in one thumb now showed up in the other and in my entire arm.   I froze in terror and then recoiled in fear when I started reading more about the impact of the disease.

But quickly some good fortune came my way.   My primary care doctor referred me to the  Center for Movement Disorders at Shands and I became a patient of Dr. Michael Okun.   He very well might be the best in the nation at treating the disease.  The first thing he said was if you have to have this disease, “This is the kind you want.” The second thing he said was treatments have improved dramatically.  The most important thing he said was “You have to keep exercising.”  “Yes, throw him into that briar patch,” Mary Jean said.

The road back has not always been easy.  Meds take a lot of time for adjusting.  It took a lot of intense rehab and time to get the hamstring well, but things have turned around for my running and I believe a lot more improvement is coming.  Still, no matter how well things go tomorrow it will be my slowest marathon ever.

Sunday morning still looks wet, windy and cold. The good news is, I will be on the starting line.  I hope to raise my fist when I cross the finish line and say: “One day I may not be able to qualify for Boston, but today is not that day. ”

And if I miss it, I will start planning for that late summer effort.

David Yon ran a 3 hour and 24 minute time and qualified for the Boston Marathon in 2014.  He is an inspiration to Parkinson’s disease patients around the United States.

Drs. Okun and Malaty are speaking as well as Joyce Oberdorf, the NPF’s president, and Dr. Peter Schmidt, NPF’s Chief Information Officer.  The full speaking agenda and topics are at the link below.   This is entirely FREE but you must RSVP as space is limited and they are providing a lunch.  The event will start at 9:30 and go until 1:00pm.

Please go online: http://www.parkinson.org/townhall ; go to the bottom of the page and click the “Gainesville, FL” link. The RSVP here button is at the bottom of the next page.

Or you can call: 1-800-473-4636

See the full interview with Michael J. Fox about the secret to his improvement in his Parkinson’s Disease.

Another recent TED talk on deep brain stimulation also shows video footage of dystonia from the University of Florida Center for Movement Disorders and Neurorestoration.

“Parkinson’s Treatment: 10 Secrets to a Happier Life” has been translated into more than twenty languages, including: Arabic, Spanish, German, French, Korean, Japanese, Chinese, Italian, and Portuguese.

See the news release …

“Almost nothing is available to patients about basic lifestyle things in any language but English. Even in the most educated patients, who have access to everything, there are still lots of very simple things they aren’t doing. There are lots of things you can do to improve your quality of life.” – Michael Okun, MD

The new book discusses topics including medications, depression, hospitalization, exercise and more.

Read the Gainesville Sun article about the book . . .

Read the UF & Shands News article about the book . . .

Visit the website that accompanies the book . . .

Copies of the new paper are available at:

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0058665

The battery estimator is at:

http://mdc.mbi.ufl.edu/surgery/dbs-battery-estimator

The Symposium will again be held at the Alachua County Senior Recreational Center at 5701 NW 34th Street, Gainesville FL. There will be two tracks for part of the Symposium allowing experienced people with Parkinson’s to attend different talks than people relatively new to Parkinson’s. The talks will be videotaped and posted later for people who cannot attend.

You can pre-register by emailing Amanda Eilers (amanda.eilers@neurology.ufl.edu).

Last year’s Parkinson Symposium

Directions:

From South of Gainesville on I-75:

Take Exit 390 which is 39^th avenue. Turn right onto that street. Continue for 4.4 miles.

On NW 34^th Street, you will turn Left and continue for 2.0 miles. The Senior Recreational Center is on the right (east)hand side of the street across from the new SuperWalmart. There will be signs at the entrance and balloons on the morning of the event.

From the UF Movement Disorders clinic:

Head north 5.5 miles

The Senior Recreational Center is on the right (east)hand side of the street across from the new SuperWalmart. There will be signs at the entrance and balloons on the morning of the event.

Agenda:

The Robert B. Stockdale Movement Disorder Lecture Fund was established in 2010 to support movement disorder research at the UF College of Medicine. Donations to this fund, supporting this annual Symposium and other educational PD events can be made by contacting Stephen Figueroa at 352-273-5882 or sfig@ufl.edu.

Friday, April 19, 2013
8:00 AM – 12:30 PM
McKnight Brain Institute
DeWeese Auditorium, LG-101

Sponsored by the UF Center for Movement Disorders & Neurorestoration

For more information contact Dr. Nikolaus McFarland: nikolaus.mcfarland@neurology.ufl.edu

Flyer download

She has run the educational day center coordinating educational talks about Parkinson disease for patients newly confronting the condition and has offered compassionate and skilled care on a daily basis. We are so proud to have Janet as part of our team!

Thank you from the team!

1. Deep Breathing Strategies
   1. Diaphragmatic Breathing
      1. When breathing in through your nose, make sure you fill your diaphragm with air (stomach should move outwards).  When releasing the air, make sure your diaphragm releases the air (stomach collapses inward)
   2. Box Breathing
      1. Breathe in for 4 seconds (to full capacity), hold for 4 seconds, breathe out for 4 seconds (releasing full amount of air) and then hold for 4 seconds.  Repeat for up to 4 minutes
   3. Meditation, Yoga, Tai Chi

2. Environmental Changes

1. Explore aromatherapy
   1. Calming scents include lavender, vanilla, etc.
2. Decrease lighting in the room (Important to only do when seated, not when walking or moving about)
3. Listen to soft, slow, rhythmic music

3. Follow up with your physician, psychiatrists, psychologists or rehab therapists for further stress management if necessary

Read more Parkinson Treatment Tips … 

Contact us about clinical trials at UF…

Learn more about the ADvance study…

“We don’t dumb it down. We teach a solid dance class,” said Sonke, also a professional dancer. Sonke added that students have learned swing, tango and folk dance in addition to plies at the barre.

…

Last spring, the Parkinson’s Research Foundation awarded the UF Center for the Arts in Medicine a grant to conduct research on the effect of dance on patients. It is part of an ongoing larger study on the effects of aerobic activity in patients that is sponsored by the National Institute of Aging being carried out by the Center for Movement Disorders.

…

“The goal of the project is to really get some sort of measures to help demonstrate the benefit, or tease out what it’s improving: is it motor function, mood, cognition?” said Dr. Irene Malaty.

WCJB Interview

GTN Interview

He threw himself into his work, scouting dozens of games in Orlando and beyond and spending week after week with colleagues in New York. Gabriel would take a cocktail of medicines, including Sinemet three times a day, and he would attend seminars featuring Michael J. Fox and keep appointments with Irene Malaty, his doctor at the Center for Movement Disorders & Neurorestoration at the University of Florida’s Shands Hospital.

…

Gabriel finds himself being more careful on the stairs, and he feels more at ease standing than sitting. Malaty said Parkinson’s can cause fatigue and loss of energy, leaving the stricken with cramps, a slower and stiffer gait, and unpredictable mood swings. Gabriel tries to manage the vile effects of the disease through exercise, rest and work. Sometimes he has good days, and sometimes he doesn’t.

You can read the rest of John Gabriel’s story on ESPN.com

Read the Gainesville Sun article here…

Contact us for information on our clinical trials…

Event 2 Boys 13&U 15000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
Finals
1 blalock, donovan 12 Unattached 1:12:32.10
Event 2 Women 14-19 15000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Banner, Brooke 15 Unattached 1:18:33.90
2 Allen, Janai 19 Unattached 1:52:58.10
Event 2 Women 20-29 15000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Pieters, Rebecca 29 Unattached 1:12:14.70
2 Noah, Claudia 20 Unattached 1:13:55.70
3 James, Colleen 23 Unattached 1:15:07.80
4 Brandimore, Alexandra 25 Unattached 1:18:40.70
5 Whitely, Jessica 28 Unattached 1:21:44.70
6 Richardson, Brooke 25 Unattached 1:22:06.60
7 Dorrance, Emily 26 Unattached 1:22:21.10
8 Barton, Amber 28 Unattached 1:22:43.60
9 Logan, Natalie 20 Unattached 1:25:07.10
10 Sheer, Amy 27 Unattached 1:30:35.00
11 Norman, Jennifer 28 Unattached 1:36:33.70
12 Lima, Diana 28 Unattached 1:38:05.50
13 Massie, Coralee 27 Unattached 1:42:54.20
14 Edde, Kathleen 25 Unattached 1:43:43.90
Event 2 Men 20-29 15000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Allen, Kyle 25 Unattached 58:39.60
2 Patterson, Russ 24 Unattached 1:02:24.90
3 Singleton, Eric 21 Unattached 1:09:19.90
4 Purcell, Michael 28 Unattached 1:22:38.10
5 Tate, Mark 24 Unattached 1:34:51.70
Event 2 Women 30-39 15000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Costello, Allison 31 Unattached 1:05:27.60
2 Morey, Jessica 31 Unattached 1:08:58.30
3 Skorupski, Kristen 31 Unattached 1:13:40.00
4 Gresley, Jaime 30 Unattached 1:16:44.50
5 Rooney, Kelly 33 Unattached 1:17:13.90
6 Stuart, Jennifer 30 Unattached 1:17:16.50
7 Flowers, Kelly 35 Unattached 1:22:01.50
8 Dunbar, Erin 38 Unattached 1:23:09.40
9 Sangmin, Shin 32 Unattached 1:27:08.70
10 schoellkopf, laura 32 Unattached 1:28:35.70
11 Banner, Tina 38 Unattached 1:29:52.10
12 Winget, Christine 35 Unattached 1:35:08.40
13 Moore, Brenda 35 Unattached 1:36:30.00
14 Smithson, Lisa 36 Unattached 1:36:54.90
15 Angry, Rose 39 Unattached 1:37:50.40
16 Vineyard, Kelly 35 Unattached 1:40:37.30
17 Lentz, Kristen 33 Unattached 1:43:52.90
18 Williams, Rebecca 33 Unattached 1:47:30.80
19 Santare, Carrie 34 Unattached 1:48:21.40
20 Larosa, Jennifer 36 Unattached 1:55:51.90
Event 2 Men 30-39 15000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Souza, Thiago 34 Unattached 1:07:37.40
2 Bost, Craig 36 Unattached 1:09:29.60
3 Wendling, Adam 36 Unattached 1:09:40.50
4 Mays, Jonathan 38 Unattached 1:10:17.10
5 Chance, Dean 35 Unattached 1:12:47.40
6 Germain, Thomas 33 Unattached 1:13:17.50
7 Parr, Jeffrey 36 Unattached 1:13:41.40
8 Delcambre, Jeremy 33 Unattached 1:15:47.30
9 Dunbar, Mark 38 Unattached 1:18:10.00
10 Palmer, Aaron 34 Unattached 1:19:36.10
11 Conlon, Thomas 38 Unattached 1:23:19.90
12 Yawkins, Thomas 32 Unattached 1:24:41.90
13 Raymond, Jason 34 Unattached 1:29:30.20
14 harrison, justin 34 Unattached 1:36:19.30
15 Pendleton, Matt 30 Unattached 1:36:53.00
16 Linebarger, Kurt 38 Unattached 1:41:56.10
Event 2 Women 40-49 15000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Gelfand, Jennifer 41 Unattached 1:11:59.90
2 Waller, Judith 45 Unattached 1:23:50.30
3 Miller, Beth 47 Unattached 1:24:31.10
4 Schwartz, Shari 47 Unattached 1:31:04.30
5 Cupoli, Kara 40 Unattached 1:32:50.20
6 Eng, Beth 43 Unattached 1:35:01.80
7 blalock, jennifer 44 Unattached 1:35:08.30
8 Allen, Lisa 46 Unattached 1:36:57.80
9 Ramey, Karen 47 Unattached 1:42:57.30
10 West, Jennifer 42 Unattached 2:01:57.40
Event 2 Men 40-49 15000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 liesenfeld, bernd 42 Unattached 1:04:37.20
2 Gasper, Joe 44 Unattached 1:13:11.40
3 White, Rob 41 Unattached 1:16:39.00
4 Inferi, Vince 41 Unattached 1:28:00.70
5 Smita, Kyle 42 Unattached 1:29:10.50
6 Cupoli, Chris 40 Unattached 1:32:50.50
7 Staab, Rick 44 Unattached 1:36:31.10
Event 2 Women 50-59 15000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Conner, eleanor 50 Unattached 1:32:33.70
2 Skorupski, Diane 57 Unattached 1:35:32.80
3 Edde, Joanne 51 Unattached 1:40:23.50
Event 2 Men 50-59 15000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Roper, Steven 53 Unattached 1:07:26.10
2 Fraunhoffer, No Name 50 Unattached 1:11:52.50
3 Szymanski, Mark 51 Unattached 1:13:03.40
4 Emanuel-Edwards, Antoine 50 Unattached 1:16:50.80
5 Presnick, Tom 54 Unattached 1:18:42.90
6 Oppenheimer, David 52 Unattached 1:21:47.30
7 Greene, Alexander 51 Unattached 1:22:12.70
8 Greene, David 51 Unattached 1:22:13.00
9 Rose, Roger 53 Unattached 1:23:46.80
10 farrell, john 52 Unattached 1:32:12.40
11 Skorupski, Joseph 58 Unattached 1:36:52.20
12 Grebe, Paul 59 Unattached 1:40:48.60
Event 2 Women 60-107 15000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 hope, vicki 66 Unattached 1:50:34.80
Event 2 Men 60-107 15000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Darden, Richard 66 Unattached 1:33:16.80
Event 2 Women 108+ 15000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Vale-Grogon, Anacielo 108 Unattached 1:53:56.70

Event 1 Girls 8&U 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
Finals
1 Smith, Katie 8 Unattached 36:51.30 10
2 Fox, Olivia 8 Unattached 39:40.30 8
3 Pratt, Abigail 5 Unattached 47:43.20 6
4 Balbis, Katie 7 Unattached 52:20.20 5
Event 1 Boys 8&U 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Ben-David, Ethan 8 Unattached 27:07.70 10
2 Staab, Luke 8 Unattached 30:58.30 8
3 Nicholson, William 7 Unattached 31:56.90 6
4 Larkin, Jacob 8 Unattached 35:38.30 5
5 Troedsson, Sean 7 Unattached 49:32.60 4
Event 1 Girls 9-14 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Shelton, Emma 11 Unattached 29:43.00 10
2 Stephens, Hope 13 Unattached 33:28.10 8
3 Pratt, Isabel 9 Unattached 36:27.10 6
4 Heidi Rose, Salmon 9 Unattached 36:49.40 5
5 Marken, Jada 14 Unattached 40:05.20 4
Event 1 Boys 9-14 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Seubert, Sebastian 14 Unattached 19:54.60 10
2 Matchev, Anton 9 Unattached 20:34.90 8
3 akey, austin 13 Unattached 22:04.60 6
4 Shelton, Ben 10 Unattached 22:28.30 5
5 Kinsell, Connor 10 Unattached 22:54.20 4
6 Donovan, Trell 13 Unattached 26:46.20 3
7 Williams, Connor 9 Unattached 27:18.20 2
8 Purvis, Cole 11 Unattached 27:52.90 1
9 Godwin, Trevor 9 Unattached 28:42.20
10 Howard, Cole 11 Unattached 29:04.00
11 Akey, Michael 13 Unattached 30:10.90
11 Dawson, Danny 11 Unattached 30:10.90
13 Crews, Justen 10 Unattached 30:36.60
14 Nicholson, Jeremiah 9 Unattached 32:20.70
15 Sims, Sean 9 Unattached 33:49.20
16 O’Dell, Casey 10 Unattached 34:05.10
17 Galasso, Isaac 11 Unattached 35:42.70
18 Galasso, Nathan 13 Unattached 35:52.20
19 Stephens, Cole 9 Unattached 36:15.40
20 Keeter, Noah 11 Unattached 38:43.80
Event 1 Women 15-19 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Sugrue, Rebecca 18 Unattached 23:34.50 10
2 Wray, Emily 19 Unattached 23:43.40 8
3 Gross, Paige 19 Unattached 27:00.10 6
4 Consolazio, Molly 17 Unattached 30:37.60 5
5 Donovan, Tiffany 15 Unattached 35:35.60 4
6 Roberts, Jillian 19 Unattached 53:20.30 3
Event 1 Men 15-19 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Bowser, Andrew 18 Unattached 19:45.50 10
2 Stinson, Christopher 18 Unattached 23:17.70 8
Event 1 Women 20-29 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Johnson, Laura 27 Unattached 25:14.10 10
2 Krieg, Lindsay 27 Unattached 26:16.00 8
3 Rollo, Rachel 28 Unattached 26:54.00 6
4 McGee, Danielle 29 Unattached 27:24.10 5
5 Snyder, Amy 25 Unattached 27:29.00 4
6 Thompson, Claire 23 Unattached 28:09.40 3
7 Roberts, Emily 21 Unattached 29:22.60 2
8 Palmer, Mandi 28 Unattached 30:15.90 1
9 Berthelot, Nia 21 Unattached 30:58.30
10 Staab, Ashley 26 Unattached 31:06.60
11 Chretien, Marie 26 Unattached 31:23.70
12 Burkert, Emily 24 Unattached 31:55.70
13 Rechtman, R. Paige 28 Unattached 32:52.00
14 Culbreth, Eve 23 Unattached 33:04.90
15 Vazquez, Bianca 24 Unattached 33:05.20
16 Walker, Heather 21 Unattached 36:32.20
17 Barry, Emily 28 Unattached 37:55.00
18 Hubbs, Jenn 28 Unattached 38:45.00
19 Wallace, Mandy 27 Unattached 39:50.70
19 Henry, Gretchen 29 Unattached 39:50.70
21 Simpson, Heather 27 Unattached 39:59.20
22 defranco, meredith 28 Unattached 40:04.00
23 Wilder, Margot 27 Unattached 46:19.10
24 Rechtman, Stefanie 24 Unattached 47:20.10
25 Sanchez, Stephanie 21 Unattached 1:02:03.50
26 Groves, Emily 21 Unattached 1:02:03.90
Event 1 Men 20-29 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Hollander, Russell 23 Unattached 20:41.60 10
2 Decker, Craig 29 Unattached 22:11.40 8
3 Cerf, Nicolas 20 Unattached 24:32.20 6
4 Spoliansky, Jonathan 26 Unattached 24:51.10 5
5 Norrington, Zachary 23 Unattached 24:53.50 4
6 Johnson, Michael 28 Unattached 25:14.30 3
7 Barry, Brian 27 Unattached 25:57.60 2
8 Pena, Javier 20 Unattached 26:52.40 1
9 Nuvy, Zackery 25 Unattached 27:10.20
10 McGee, Dwight 29 Unattached 27:23.90
11 Gregorio, Mark 26 Unattached 28:49.60
12 Staab, Jordan 27 Unattached 28:49.80
13 Ulman, Michael 23 Unattached 29:59.30
14 Hoogheem, Benjamin 26 Unattached 30:00.50
15 Elrod, Jonathan 24 Unattached 31:52.20
16 DeConna, Nick 29 Unattached 32:39.70
17 Ramachandran, Girish 27 Unattached 33:53.30
18 Jackson, Brian 23 Unattached 40:00.20
19 Hickey, Michael 26 Unattached 43:29.70
20 Griffin, Stephen 23 Unattached 49:35.80
Event 1 Women 30-39 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Stanley, Robyn 37 Unattached 22:40.70 10
2 gilbert, pippin 34 Unattached 24:37.00 8
3 Beery, Melissa 34 Unattached 27:02.00 6
4 Ben-David, Valerie 39 Unattached 27:09.20 5
5 Rodriguez, Jennifer 35 Unattached 28:26.70 4
6 Hesser, Jennifer 37 Unattached 33:00.80 3
7 Cox, Leslie 31 Unattached 33:56.50 2
8 Hovad, Phoebe 39 Unattached 34:11.00 1
9 Mace, Tara 34 Unattached 35:22.70
10 Williams, Jamie 36 Unattached 35:51.20
11 Le-Wendling, Linda 36 Unattached 35:58.00
12 Johnson, Jennifer 36 Unattached 37:03.40
13 Bell, Amelia 30 Unattached 38:42.00
14 Bryan, Julie 36 Unattached 40:20.50
15 Beck, Sarah 34 Unattached 40:44.50
16 Malaty, Irene 35 Unattached 41:14.20
17 Fayad, Sarah 31 Unattached 41:48.20
18 Smith, Cindy 38 Unattached 46:56.20
19 Drowiland, Jessica 32 Unattached 48:49.60
20 zukowski, robin 32 Unattached 49:50.30
21 Kear, Brianna 33 Unattached 50:45.20
22 Fairchild, Holly 33 Unattached 51:25.50
23 Chowdhay, Puneet 36 Unattached 51:25.80
24 Wilcox, Lauren 38 Unattached 52:00.90
25 Larkin, Brittany 33 Unattached 54:48.00
Event 1 Men 30-39 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Bryan, Glenn 38 Unattached 22:25.20 10
2 Kinsell, Miles 37 Unattached 22:57.30 8
3 Shielele, Asliutosh 39 Unattached 23:11.80 6
4 Davis, Richard 38 Unattached 25:04.30 5
5 Lowry, Joseph 33 Unattached 26:27.30 4
6 Guthrie, Gregory 33 Unattached 27:28.80 3
7 Hass, Chris 39 Unattached 27:58.10 2
8 Moore, William 35 Unattached 28:24.50 1
9 Riley, Timothy 30 Unattached 31:23.80
10 Giuliani, Tim 31 Unattached 31:33.70
11 Pratt, Douglas 38 Unattached 32:19.50
12 Hesser, Ken 37 Unattached 33:00.50
13 Doty, Garrett 39 Unattached 33:55.40
14 Larkin, Scott 37 Unattached 35:37.10
15 Galasso, Dan 35 Unattached 35:53.40
16 Smith, Cole 37 Unattached 36:51.60
17 Banis, Patrick 32 Unattached 38:17.90
18 Alsbrook, James 31 Unattached 40:00.80
19 Malaty, John 36 Unattached 41:14.40
20 Kear, Bradley 32 Unattached 48:14.50
21 Herndon, Kyle 34 Unattached 48:15.20
22 Zukowski, John 32 Unattached 51:42.20
23 Balbis, Macon 35 Unattached 52:20.30
Event 1 Women 40-49 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 akey, melissa 44 Unattached 24:55.50 10
2 Wolcott, Lisa 47 Unattached 27:19.10 8
3 Keeter, Elizabeth 45 Unattached 27:56.60 6
4 Descant, Gwen 49 Unattached 29:05.90 5
5 Callard, Cannelle 44 Unattached 30:01.70 4
6 Diehl, Elizabeth 47 Unattached 30:55.20 3
7 Pettie, Christina 45 Unattached 32:52.70 2
8 Bass, Cindy 47 Unattached 34:05.20 1
9 Doty, Suzanne 45 Unattached 34:41.20
10 Shelton, Lisa 46 Unattached 35:48.60
11 Doerr, Marysue 43 Unattached 36:49.40
12 Foote, Angela 46 Unattached 40:39.20
13 Consolazio, Lori 49 Unattached 44:08.00
14 Barnett, Tracey 40 Unattached 47:43.10
15 Griffin, April 48 Unattached 49:35.60
16 Karrh, Margaret 48 Unattached 49:37.40
17 Salmon, Heidi 44 Unattached 51:48.00
18 O’Dell, Liesl 42 Unattached 51:48.10
19 White, Jennifer 40 Unattached 52:00.60
20 Pricher, Amy 41 Unattached 55:52.20
21 Dawson, Kara 43 Unattached 1:05:21.40
Event 1 Men 40-49 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Consolazio, Gary 46 Unattached 23:32.90 10
2 Seubert, Christoph 49 Unattached 24:23.00 8
3 Yi, Yuqing 49 Unattached 24:33.70 6
4 Dewolf, Ludd 48 Unattached 24:36.10 5
5 Ackey, Michael 45 Unattached 26:33.30 4
6 Matchev, Konstantin 45 Unattached 26:48.80 3
7 Shelton, Bryan 46 Unattached 29:43.80 2
8 Foote, Kelly 46 Unattached 31:58.50 1
9 Yourgules, Jose 46 Unattached 32:00.10
10 Pettie, Robert 42 Unattached 32:52.70
11 Smith, Kris 42 Unattached 33:52.50
12 Sims, Greg 40 Unattached 33:55.20
13 Fox, David 45 Unattached 39:40.10
14 Griffin, Kevin 49 Unattached 40:18.00
Event 1 Women 50-59 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Roper, Regina 52 Unattached 23:53.60 10
2 McCausland, Lucy 58 Unattached 24:35.00 8
3 Woodward, Suzanne 53 Unattached 25:42.20 6
4 Killian, Lynn 52 Unattached 31:59.70 5
5 Melton, Suzanne 51 Unattached 33:02.30 4
6 Gordon, Patti 55 Unattached 35:32.90 3
7 Sroka, Karen 57 Unattached 36:00.70 2
8 Alcantara, Carolyn 52 Unattached 40:16.00 1
9 Askew, Donna 50 Unattached 46:18.50
10 Talton, Tonya 53 Unattached 49:50.20
11 Tucker, Patricia 54 Unattached 51:46.70
12 Jackson, Stefanie 55 Unattached 55:16.80
13 Juvenal, Rebecca 53 Unattached 56:03.00
14 Holbrook, Pam 56 Unattached 56:03.10
Event 1 Men 50-59 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Nyquist, David 59 Unattached 22:07.70 10
2 Donovan, Art 57 Unattached 29:57.10 8
3 Wilde, Dan 53 Unattached 32:34.10 6
4 bland, dana 56 Unattached 36:16.00 5
5 Howard, Chip 52 Unattached 38:53.60 4
6 Keeter, Robert 57 Unattached 39:57.30 3
7 Marken, Doug 57 Unattached 40:05.10 2
8 Green, James 58 Unattached 44:29.50 1
Event 1 Women 60-69 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Folkerth, Leslie 60 Unattached 40:36.40 10
2 gillette, phyllis 61 Unattached 49:33.80 8
3 Fuchs, Jeanne 62 Unattached 51:42.20 6
Event 1 Men 60-69 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Ashizawa, Tetsuo 64 Unattached 23:26.60 10
2 Ebling, Jim 65 Unattached 32:47.50 8
3 walters, frank 68 Unattached 33:38.60 6
4 Sroka, Edward 65 Unattached 36:02.10 5
5 Hulbert, James 65 Unattached 40:00.80 4
6 Carpenter, Jim 65 Unattached 45:59.90 3
7 Jackson, Erwin 62 Unattached 55:16.00 2
Event 1 Women 70-107 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Dawson, Maureen 77 Unattached 1:05:25.30 10
Event 1 Men 108+ 5000 Meter Run
=======================================================================
Name Age Team Finals Points
=======================================================================
1 Purvis, Zach -4 Unattached 20:52.80 10

USA Today interviewed Dr. Michael Okun, Medical Director for NPF and also the Co-Director of the UF Center for Movement Disorders & Neurorestoration, and Joyce Oberdorf, the president of NPF, about this result.

“Nearly everyone thinks of the disease as a mobility disorder but the No. 1 problem turns out to be depression,” says Joyce Oberdorf, president of the National Parkinson’s Foundation. (USA Today)

The Report

The National Parkinson Foundation’s Quality Improvement Initiative (NPF QII) started in 2009 and 20 Centers of Excellence have participated. The University of Florida has gathered data since day one and we continue to add new patients and follow-up annually with patients who participate. Dr. Irene Malaty and Amanda Eilers direct the project here at UF. Dr. Samuel Wu, our biostatistician, has been instrumental in managing the data.

Trying to pinpoint which treatments enable some Parkinson’s patients to thrive while others decline led the foundation to launch the research three years ago. There is no cure.

“Some patients stay active and can live at home rather than go to a nursing home,” says physician Michael Okun, co-director of the Center for Movement Disorders and Neurorestoration at the University of Florida. “There’s a wide disparity of treatments. We wanted to know what treatments were improving quality of life and to set guidelines for good outcomes.” (USA Today)

Depression

The NPF QII Report outlines the major findings so far in the study as reported in several papers published using the study data. Most concerning among them is the under-treatment of depression for Parkinson patients, even from expert physicians.

The Report notes:

At least 50 percent of people with Parkinson’s experience depression, and anxiety is also frequently reported. Depression can be disabling, resulting in difficulty with work or engaging in activities like exercise that can help manage symptoms. Yet physicians often have trouble recognizing anxiety and depression, or their roles in hampering efforts to treat Parkinson’s.  (NPF QII report, page 12)

Mobility

The second concern in the report is the continued importance of mobility issues. Bradykinesia (slow movement) in particular stands out as a universal issue for Parkinson patients. Mobility issues can affect every day tasks or prevent you from getting out and doing what you want to do. The report recommends:

The best way to protect your motor function is to use it regularly. A well-designed exercise plan can significantly improve almost everything about your health, including stabilizing your walking, calming tremor, improving mood, and possibly even slowing progression of the disease. Regular exercise is typically associated with a lower care burden, as well. Even as motor symptoms progress, many respond well to medical and surgical treatment. But staying active remains absolutely critical. (NPF QII report, page 12)

These movement issues are linked with the mood component which has been getting more of a spotlight recently. Therefore, honest dialog with your Parkinson physician is recommended:

Your symptoms are connected. Better mobility reduces depression, treating constipation helps with mobility, and so on. Talk to your doctor about whatever is bothering you. (NPF QII report, page 13)

Lastly, the NPF QII report recommends customized care for each patient. The progression of the disease can be different amongst patients or the symptoms they find most troubling can be different.

This is only the beginning and we at UF are excited to be a part of this groundbreaking research. As Joyce Oberdorf told USA Today:

The early findings about effective treatments are “just the tip of the iceberg” . . . “We’re committed to following this for a very long time.”

Links:

• Depression is biggest hurdle for Parkinson’s patients, USA Today, 11/28/2012
• Depression Takes a Toll on Parkinson’s Patients, WebMD, 11/28/2012
• National Parkinson Foundation Quality Improvement Initiative Report
• What are the issues facing Parkinson’s disease patients at ten years of disease and beyond?: Data from the NPF-QII study. Hassan A, Wu SS, Schmidt P, Malaty IA, Dai YF, Miyasaki JM, Okun MS.
• Risk Factors For ER And Hospitalization In Parkinson’s Disease: An NPF Quality Improvement Initiative (NPF-QII) Study. Hassan,  A., Wu,  S., Schmidt,  P., Malaty,  I.A., Okun,  M.S.
• Parkinson Treatment Tips Blog

This program is available for both children and adults.

CBIT has been shown to reduce tic severity in numerous research studies.  The focus of this treatment is to enable people with Tics and Tourette’s to better manage their tics based on a carefully planned and studied program.

“CBIT has three important components:

1. Training the patient to be more aware of tics
2. Training the patients to do a competing behavior when they feel the urge to tic
3. Making changes to day to day activities in ways that can be helpful in reducing tics” *

Attached in the link is a pamphlet for CBIT with further information:

http://www.tsa-usa.org/aMedical/images/CBIT_TSA_Brochure.pdf

Currently, we have a CBIT trained Occupational Therapist on staff who is gearing up this new treatment if recommended by your physician.  We are excited to offer this treatment in hopes to increase quality of life and satisfaction for our patients with Tourette’s/Tics.

Please contact us with any questions about the treatment and inquiries on starting the program.

References:

*  Comprehensive Behavioral Interventions for Tics. Bayside, NY; Tourette Syndrome Association, inc. 2010. Print

In-Hand Manipulation

• Rotate items in you palm such as Chinese medicine balls, golf balls, small tape measurer, etc. (make sure you rotate both clockwise and counterclockwise)
• Keeping your hand flat and still, use just your fingers to bring a small item from your palm to your fingertips and then back to your palm

Finger Isolation

• Place your hand and fingers flat on the table and lift one finger off of the table at a time
• Make an “O” by touching the thumb to fingertips one at a time
• Keeping your hand and fingers flat on the table, move each finger individually “right to left” or “in and out”
• Place a towel or pillow sheet on the table and place a flat palm on top. Then, one finger at a time, crumple the towel into a ball
• Playing paper football or marbles
• Playing the piano, keyboard or any string instrument

Dynamic Movements

• Sewing, knitting and cross stitching
• Jewelry making or stringing beads
•  Manipulating small nuts and bolts
• Picking up small items off of a table (such as buttons, coins, etc.) by lifting off of the table versus pulling off of the table
• Use clothespins to pick up small items or put on an edge of a coffee can

Be sure to ask your local Occupational Therapist for more coordination activities or with any questions.

The award aims to praise the achievement of Honorary Professor, Yoshikuni Mizuno, and was established in 2008. This award will be given to a young neurologist (under 40 years of age) who makes a great contribution. Dr. Oyama is currently on faculty at the Dept of Neurology, Juntendo University, Tokyo, Japan.

The most recent update, Malaty added, changed the criteria to treat Parkinson’s disease caused by Agent Orange from “inadequate or insufficient evidence” to “limited or suggested evidence.”

“In other words, it’s not 100 percent,” she said. “But there is some suggested evidence that would be related.”

With the department’s decision to make Parkinson’s disease presumptive, if someone was exposed to Agent Orange, he or she could create a type of connection, Malaty said.

Treatment is available for patients looking for help, she added.

Read or listen to Part 1 and Part 2.

This article and the use of DBS to treat other disorders were discussed in the Gainesville Sun this week as well. Drs. Okun & Foote were interviewed:

“When we started in 2002, there were only a handful of places in the U.S. that did it. There was a lot of skepticism about the operation from internists and neurologists,” said Dr. Michael Okun, a neurologist at UF. “Now it has gone from crazy to cool to completely accepted.”

…

Foote described one OCD patient in his 30s who was obsessed with perfection. “Questions would paralyze him. His mother used to leave him, and he’d be in the same place six hours later,” Foote explained. “People thought he was psychotic or catatonic.”

After deep-brain stimulation, Foote continued, the patient smiled for the first time. “He was unfrozen. He was a prisoner in his own brain.”

Learn more about Deep Brain Stimulation …

Am I a candidate for Deep Brain Stimulation?

Emotion and ocular responses in Parkinson’s disease.

Respiratory strength training: concept and intervention outcomes

Abstract

Respiratory muscle strength training (RMST) focuses on increasing the force-generating capacity of the inspiratory and expiratory muscles. The choice of respiratory muscles that are targeted using RMST depends on the outcome desired. For example, if an individual has reduced inspiratory muscle strength due to a neurogenic injury and is unable to ventilate the lungs, then inspiratory muscle strength training may be the chosen rehabilitation target. On the other hand, if a professional voice user is complaining of difficulty generating adequate vocal loudness during song production and is suffering from laryngeal dysfunction, then an expiratory muscle strength training paradigm may be the chosen rehabilitation target. Our most recent work with RMST has focused on increasing expiratory muscle force generation for those with Parkinson’s disease who have difficulty with breathing, swallowing, and cough production. This difficulty typically worsens as the disease progresses. Highlights of these outcomes are summarized in this article.

PubMed link

Effect of Training Frequency on Maximum Expiratory Pressure.

Abstract

Objective

The purpose of the current study was to determine the effects of expiratory muscle strength training ‘frequency’ on maximum expiratory pressure (MEP).

Methods

Twelve healthy participants were randomly assigned to two groups of training frequency (3 days per week and 5 days per week). They completed a four week training program on an EMST trainer (Aspire Products, LLC). Maximum expiratory pressure (MEP) was the primary outcome measure to determine the effect of training frequency.

RESULTS

Participants who trained at three days per week produced equivalent amounts of improvement in MEP as compared to participants who trained at five days per week training frequency. An overall improvement in MEP over the four week training period indicated a 33% increase when the data was collapsed across the two training groups.

Discussion

The effects occurring with respiratory muscle strength training in healthy young adults are likely to be different from those occurring in patient populations. Therefore, the results of the present study suggest exploring the variable of ‘training frequency’ in patient populations. Such knowledge will be informative for designing clinical protocols that are effective and may result in improved treatment compliance for those suffering from expiratory muscle weakness.

Pubmed Link

We are excited to share this patient story of successful deep brain stimulation to treat dystonia. Thank you to the Streitmatter family for letting us share it.

Showing off his battery implants to head Gator Basketball Coach Billy Donovan

Just a small part of the team that makes up the UF Parkinson Disease Center of Excellence who were on hand when Dr. Schmidt presented the plaque.

Excerpts from the UF&Shands News Article:

“It’s an honor to be recognized by the National Parkinson Foundation as a Center of Excellence, and it also reignites the challenge to keep working as a team and looking for new ways to serve our patients,” said director Irene Malaty, M.D., an assistant professor of neurology in the UF College of Medicine.

“The multidisciplinary care is, I think, the thing that’s most special about this center,” said Kelly Foote, M.D., co-director of the Center for Movement Disorders and Neurorestoration and an associate professor of neurosurgery. “Here, various specialists work side by side in a single facility so patients don’t have to travel all over campus to get the care they need. It’s just a better way to deliver specialized health care.”

National Parkinson Foundation Centers of Excellence are considered leaders in Parkinson’s research and care, and they receive financial support from the foundation.

“We look for places where we can really be pleased to send patients and this center is at the top of that list,” said Peter Schmidt, Ph.D., National Parkinson Foundation chief information officer and vice president of programs, who visited UF to officially mark the designation.

A summary of the research is below:

Parkinson’s disease, multiple system atrophy, progressive supranuclear palsy, and essential tremor affect over 10 million people in the United States. These debilitating movement disorders can be very difficult to distinguish from each other, have different prognoses, and can respond very differently to available therapies. The purpose of this grant is to identify structural and functional changes in the brain using non-invasive neuroimaging techniques to develop sensitive and specific markers for each of these diseases, and then to track how these markers change as each disease progresses.

Learn more about movement disorder research at UF…

A summary of the Research is Below:

Older adults are at increased risk for experiencing acute and long-term cognitive after major non-cardiac surgery such as total knee replacement. Other than the effect of age alone, there are no known mechanisms for this risk. This is alarming, for post operative cognitive dysfunction represents a form of un-necessary cognitive decline that may accelerate neurodegenerative processes. Our team will use sophisticated methodological approaches to assess hypotheses regarding the predictive value of presurgery neuroimaging biomarkers on type of post-operative cognitive decline after total knee replacement. Patients (n=80) and non-surgery peers (n=80) will be assessed in a longitudinal study examining neuroimaging predictors of change at three-weeks, three-months, and one-year post surgery/post baseline. The long-term goals of our team are to 1) identify preoperative variables that increase risk for acute and irreversible cognitive decline after surgery and 2) use this information to design peri-operative interventions for patients with specific neuronal risk profiles.

For more details:  http://www.tylershope.org/

The meeting will also bring awareness to PSP (progressive supra nuclear palsy) through a program in the center run by Dr. Hass and McFarland, and through the generous support of the Allen family.  All attendees will carry bags with a PSP awareness message!

Visit http://hhp.ufl.edu/apk/ces/ASB2012/

On Friday August 17th, the TSA and Centers for Disease Control are co-hosting the Tourette Syndrome (TS) Education Retreat for Medical Professionals from 8 AM – 3pm at the McKnight Brain Institute. Presenters include:

Donald Gilbert, MD, MS- Professor , Dept. of Pediatric Neurology, Dir. of Movement Disorders  & TS Clinics at Cincinnati Children’s Hospital Medical Center

Tanya Murphy, MD, MS- Professor, Depts. Of Pediatrics & Psychiatry, Director of Rothman Center for Pediatric Neuropsychiatry at Children’s Health Center at the University of South Florida All Children’s Hospital

Michael Okun, MD- Professor, Dept. of Neurology,  Co-Director of the Center for Movement Disorders at UF, Co-chair Medical Advisory Board for Tourette Syndrome Association

Irene Malaty, MD- Assistant Professor, Dept. of Neurology, Director of Tourette Syndrome Clinic at UF

Learn about the UF Tourette Syndrome and Tic Clinic.

Modulating Microglia Activity with PPAR-γ Agonists: A Promising Therapy for Parkinson’s Disease?

Learn more about our Occupational Therapy clinic for movement disorders.

Jenna received a plaque as well as a $1000 cash award which will help to offset the direct expenses of her doctoral dissertation work. She joins 3 other exceptional UF neuropsychology students who previously received this honor from the APA. Congratulations!

Read more about her research work.

1. Prevent overstimulation
   1. Keep the environment simple and quiet
   2. Ensure that background noises are kept at a minimal level (TVs, talking, dishwasher, etc.)
   3. Keep frequently used rooms free of clutter and with minimal distracting photos
   4. Use simple words-do not over speak

2.  Don’t encourage speed

1. Allow for increased time to process simple tasks
2. Provide only one step directions

i.      Example: Say, “Sit down” versus “sit down and take off your socks and shoes”

3.  Explore the use of visuals to help with simple tasks

4.  Continue to allow for participation and initiation of daily activities.  It is important for persons with Parkinson’s and dementia to continue to participate in their desired leisure and functional tasks to sustain motivation. If someone is not able to complete the whole task desired, allow them to participate in part of the process.

A.   Example: Instead of completing all parts of dressing, allow them to put on socks or shoes if they are able

5.    Encourage a routine to ensure familiarity

July 4th of this year not only marked the nation’s birthday, but also a victory in the continued battle we are fighting against Parkinson ’s disease. James Hulbert, an accomplished writer, is a patient of our clinic who was diagnosed with Parkinson’s disease in 2008. I first met Jim back in December 2011 for a physical therapy “tune up”. At the time, Jim’s main forms of exercise were qigong and walking. Earlier in his lifetime, he was an avid runner. As Parkinson’s slowly settled in, his running faded. My initial impression of Jim led me to believe that Parkinson’s had robbed a portion of his confidence in his physical abilities. My gut told me that this man was a fighter and would flourish with a bit of encouragement and would not back down from a great deal of physical activity.

Jim soared through a few weeks of physical therapy at Shands Magnolia Parke. He then agreed to participate in an intense exercise study working with Dr. Chris Hass’ biomechanics lab in the Department of Applied Physiology and Kinesiology at the University of Florida. In only 16 weeks of the exercise study, Jim was fully back to an exercise fiend. He joined a gym and now works out nearly 7 days per week.

During one of our monthly follow-up visits, Jim asked me, “Do you think I could run again?” At this point I truly felt there was nothing that would stop this man from achieving any goal he had in mind. I quickly responded, “Let’s go outside and try running.” He tentatively headed down a long breezeway behind the clinic. From the therapy perspective, he is a natural runner. With his form, he appears to glide down the street rather than pound the pavement. We were both surprised how well those pivotal five minutes went. He then shared his ultimate goal of running the Florida Track Club’s “Melon Run 3 miler” on July 4th, which was only a few months away. Coincidentally, I have helped organize this race for the past two years. It was fate, and we both knew it in that moment.

Over the next few months we created a plan that would help increase his cardiovascular endurance and tolerance for running, while avoiding injury. I sent him over to visit my friend Mike Carrillo at Gainesville Running and Walking to get him into some new running shoes.

With some flashy new Nike’s, Jim hit the ground running…literally! Over the next few months Jim added a half mile every two weeks, building up to a 3 mile run. July 4th morning came upon us quickly and Jim was more than ready to face the race. The Melon Run is so named because instead of earning a trophy or a medal as a prize, runners are awarded with locally grown watermelons. The race draws runners of all types, from elites to first time racers. There is no better way to start a holiday celebrating our nation’s birthday, than by coming together as a community to run. As the clock ticked toward 8am, Jim gathered in the sea of nearly 500 runners at the start.

We sang the national anthem as a group and a siren cued the start of the race…the runners were off… and the rest is history. The following pictures and huge smile on Jim’s face depict the success that occurred over the next 39:04 minutes.

Thank you Jim for letting me share your story and our CMDNR team for making days like July 4th 2012 possible. This year’s Melon Run marked another great victory against Parkinson’s.

What’s next for Jim? He will continue beating Parkinson’s with one foot in front of the other. His next therapy goal will include running a race with his therapist!

Learn more about how Shands Physical Therapists help movement disorder patients.

Learn more about Parkinson Disease.

Story by: Meredith DeFranco, DPT, physical therapist at the Center for Movement Disorders and Neurorestoration and Shands Magnolia Parke

Photos by: Jim Carpenter

Michael S. Okun, M.D.

Read Dr. Okun’s What’s Hot in Parkinson’s disease blog each month at www.parkinson.org

A huge question facing Parkinson’s disease patients and clinicians has been, what is the best target for deep brain stimulation (DBS)?  Over the years two main brain regions have emerged as possibilities; the subthalamic nucleus (STN) and the globus pallidus interus (GPi).  Though each target has had defenders, most centers have gravitated toward utilizing only STN DBS.  A series of recent trials however, will likely change this simple practice pattern into a more complex and tailored approach.  In this month’s, What’s Hot in Parkinson’s disease, we will explore this issue, and present the latest data.

Weaver and colleagues published the long awaited three year data that was derived from the VA-NINDS STN vs. GPi DBS for Parkinson’s disease trial. Patients were randomly assigned to a GPi or a STN brain target, and though the original trial had more subjects, this long-term follow-up cohort was relatively large for a surgical trial (GPi n=89 and STN n=70). The primary outcome was “motor function on stimulation/off medication using the Unified Parkinson’s Disease Rating motor subscale,” and patients were followed for a total of 36 months.  Motor function, as in the original trial, improved similarly in both groups.  The surprise was that the Mattis Dementia Rating Scale and other neurocognitive/thinking measure scores such as the Hopkins memory test “declined faster for STN than GPi patients.”  Overall, quality of life was improved in both groups, though it was overall diminished from the previously reported 24 month follow-up.  This worsening of quality of life was thought to be due to disease progression.

The recent VA-NINDS Cooperative study focusing on STN vs. GPi DBS validated previous reports by Anderson, and also by the NIH COMPARE DBS randomized trial.  All of these STN vs. GPi DBS studies have collectively demonstrated similar motor efficacy when using either brain target when applied to patients with advanced fluctuating Parkinson’s disease.  Though many neurologists and neurosurgeons may have prematurely rushed to adopting STN over GPi DBS, accumulating evidence has underscored a critical importance of carefully and thoughtfully studying DBS targets through the application of appropriate clinical trials.

The results of the current study were largely forecasted by a 2005 editorial, which provided an illustrated cartoon entitled “the rematch.”  The editorial compared a very popular STN DBS target against the less utilized GPi.  The cartoon even went so far as to place boxing gloves on each target. There was speculation that the GPi target would “make a return,” and that in the future, DBS targets would be chosen on a symptom specific basis.  If we fast-forward to the present, it seems that this projected scenario is quickly becoming a reality.

The current VA study by Weaver and colleagues revealed specific advantages of the GPi DBS target.  The most important reported finding was the worsening of cognitive/thinking function in the STN group.  This finding has practical implications for patients. If you are considering a DBS and you seem to have cognitive or thinking issues, you and your team should consider implantation into the GPi target.  Additionally, sometimes detailed cognitive testing will uncover previously unknown but potentially important symptoms. Another important take home message is that although medication reduction occurs more commonly with the STN brain target, there seems to be more flexibility in adjusting medications if you choose the GPi target.  The ability to have enhanced flexibility when making medication adjustments will likely be important as DBS patients experience natural disease progression and worsening of symptoms.

The data from the Weaver study also revealed that in STN, there was a gradual loss of the “additive effect of medication to stimulation.”  This point led the accompanying editorial to question whether, “GPi stimulation would be more compatible with long-term medical therapy?”  Additionally the post-operative off medication scores remained remarkably stable in the GPi target.  It is unknown whether this finding represented a failure of stimulation washout, a micro-lesional effect, or a disease modifying benefit.

The results from the study strongly suggest that clinician’s weighing the possibility of DBS for their patients should not consider STN as the sole option.  All of the recently available data, inclusive of this new study, supports the notion that the future of DBS patient and target selection will require a more tailored and symptom specific approach, and that both STN and GPi are viable options.  All DBS patients should be sure that they are evaluated by an interdisciplinary team (neurologist, neurosurgeon, neuropsychologist, psychiatrist, PT, OT, and speech therapist), and that the team has met and discussed the best approach (unilateral versus bilateral), the best target (STN vs. GPi) and the overall risk-benefit ratio.  These types of pre-operative evaluations will facilitate the best chance to enhance the overall outcomes of DBS surgery.**

Learn more about Deep Brain Stimulation

Selected References

Okun MS, Fernandez HH, Wu SS, Kirsch-Darrow L, Bowers D, Bova F, Suelter M, Jacobson CE 4th, Wang X, Gordon CW Jr, Zeilman P, Romrell J, Martin P, Ward H, Rodriguez RL, Foote KD. Cognition and mood in Parkinson’s disease in subthalamic nucleus versus globus pallidus interna deep brain stimulation: the COMPARE trial. Ann Neurol. 2009 May;65(5):586-95. PubMed PMID: 19288469; PubMed Central PMCID: PMC2692580.

Okun MS, Foote KD. Subthalamic nucleus vs globus pallidus interna deep brain stimulation, the rematch: will pallidal deep brain stimulation make a triumphant return? Arch Neurol. 2005 Apr;62(4):533-6. PubMed PMID: 15824249.

Follett KA, Weaver FM, Stern M, Hur K, Harris CL, Luo P, Marks WJ Jr, Rothlind J, Sagher O, Moy C, Pahwa R, Burchiel K, Hogarth P, Lai EC, Duda JE, Holloway K, Samii A, Horn S, Bronstein JM, Stoner G, Starr PA, Simpson R, Baltuch G, De Salles A, Huang GD, Reda DJ; CSP 468 Study Group. Pallidal versus subthalamic deep-brain stimulation for Parkinson’s disease. N Engl J Med. 2010 Jun 3;362(22):2077-91. PubMed PMID: 20519680.

Okun MS. Deep Brain Stimulation: Time to Change Practice.  Journal Watch. June 26, 2012.  **Excerpts from this short review are utilized in the above current review.

Some recommendations include:

1)      Modify your bathroom

     a.  Use a shower seat. There are many options for a shower seat.  You can get a tub transfer bench that starts on the outside of the tub and ends in the tub so that you do not have to step over a side of the tub or a simple standard seat to fit inside of the shower/tub.  Ask your Occupational or Physical Therapist for recommendations.

     b.  Install grab bars. Place grab bars strategically around the bathroom to assist with transfers. Do not rely on towel racks or door handles for those can easily pull out of the wall or the vertical surface.

     c.  Place non-skid strips or mats at the base of the shower/tub to increase stability of slippery surface.

     d.  Explore use of a shower wand when sitting.

2)      Sit on the shower seat/tub bench during moments when balance is a concern.  For example-when having eyes closed to wash hair, to wash feet and during bending motions when dizziness occurs.

3)      Make slow, purposeful movements.  Avoid rushing when showering.

4)      Ensure proper lighting in the bathroom.

5)      Make sure that your feet are completely dry before stepping out of the shower/tub.

6)      Decrease clutter around the tub.

7)      Ask for help.

Brain Res. 2012 Apr 27. [Epub ahead of print]
Neurogenic potential of progenitor cells isolated from postmortem human Parkinsonian brains.
Wang S, Okun MS, Suslov O, Zheng T, McFarland NR, Vedam-Mai V, Foote KD, Roper SN, Yachnis AT, Siebzehnrubl FA, Steindler DA.
Source
Department of Neurosurgery, The University of Florida, Center for Movement Disorders and Neurorestoration, College of Medicine, USA.

Abstract
The success of cellular therapies for Parkinson’s disease (PD) will depend not only on a conducive growth environment in vivo, but also on the ex vivo amplification and targeted neural differentiation of stem/progenitor cells. Here, we demonstrate the in vitro proliferative and differentiation potential of stem/progenitor cells, adult human neural progenitor cells (“AHNPs”) isolated from idiopathic PD postmortem tissue samples and, to a lesser extent, discarded deep brain stimulation electrodes. We demonstrate that these AHNPs can be isolated from numerous structures (e.g. substantia nigra, “SN”) and are able to differentiate into both glia and neurons, but only under particular growth conditions including co-culturing with embryonic stem cell-derived neural precursors (“ESNPs”); this suggests that PD multipotent neural stem/progenitor cells do reside within the SN and other areas, but by themselves appear to lack key factors required for neuronal differentiation. AHNPs engraft following ex vivo expansion and transplantation into the rodent brain, demonstrating their regenerative potential. Our data demonstrate the presence and capacity of endogenous stem/progenitor cells in the PD brain.

Copyright © 2012 Elsevier B.V. All rights reserved.

Listen here: Your Health Matters interview with Dr. Okun

Learn more about the Your Health Matters podcast.

                There are a variety of factors that can lead to an increase in fatigue with Parkinson’s, including: stress, muscle stiffness, impaired sleep, depression and even certain medications.  Parkinson’s symptoms create a decrease in efficiency of the body to move and function during regular activities making the body work harder than it would normally.

Ways to conserve energy:

1)      Schedule your day:

a. Plan out scheduled rest breaks

b. Plan your daily activities around important daily activities

i.      Ex- if you have a long day filled with doctors’ appointments, sit down during dressing and bathing in the morning to save your energy

2)      Sit when able:

a. Sit to groom

b. Sit to dress

c. Sit to bathe

d. Sit to complete simple meal preparation

3)      Use adaptive equipment:

a. Reachers to grab items too low or too high

b. Kitchen carts to decrease the amount you have to carry

c. Dressing aides: Button hooks, sock aids, elastic shoe laces and dressing sticks

d. Bathing: Long-handled sponge, shower chair and hand held shower head

e. Household work: use long-handled cleaning supplies (such as Swiffers or dust brushes)

4)      Ask for help and divide up household responsibilities to others that can help

Important Reminders: With implementation of energy conservation strategies, you can be safer and more productive with your daily activities.  Ask your Occupational Therapist for explanations or further suggestions of energy conservation strategies.

Read more Parkinson Treatment Tips …

There are now over a dozen published studies in the Parkinson’s disease literature and all point to an increased risk of osteopenia (thin bones), and to an increased risk of osteoporosis (brittle and fragile bones). A sobering issue recently raised by Daniel et. al. is that men with Parkinson’s disease are also at risk for having thin bones.  Our thinking on bone loss has been evolving and we now believe that the degenerative process in Parkinson’s disease affects the signals that trigger bone growth, thereby putting both genders at risk.  We now recommend that both men and women have regular bone health checkups.  Having thin bones sets up an increased risk for fractures, and because Parkinson’s patients are at risk for falling it is critically important to keep healthy bones.  There are several factors that can help to strengthen your bones including exercise, calcium supplementation, and vitamin D.  In more severe cases osteoporosis drugs can also be prescribed.  Additionally, some mild exposure to sunlight can be helpful, however remember to wear sunscreen, as Parkinson’s disease patients are at a higher risk for melanoma.

Selected References:

1: Levin RM, Tucci JR.Parkinson’s Disease and Metabolic Bone Disorders: A Common Connection That Needs More Attention. Endocr Pract. 2012 May 1:1-9. [Epub ahead of print] PubMed PMID: 22548948.

2: Daniel SK, Lansang MC, Okun MS. Bone mineral density (BMD) in male patients with Parkinson’s disease. Int J Neurosci. 2012 Apr 18. [Epub ahead of print] PubMed PMID: 22510054.

A great place to start is within your home and/or current living situation. Modifications to your environment can prevent falls with a few simple changes including:

• Installing nightlights to illuminate your path to the restroom at night
• Installing grab bars in your bathroom, in the shower and next to your toilet
• Remove throw rugs throughout your home
• Use NON-skid mats only in the kitchen and bathroom
• Apply NON-skid tape or mats inside of your shower or tub
• DO NOT wear slippery soled shoes, wear shoes with tread instead
• Remove clutter from the ground including magazines and electrical cords
• Rearrange the furniture to provide larger and wider walking paths
• Be sure to lock your walker or assistive device before and during transfers
• Keep your walker or cane parked near your bed if you use one to be available in the morning and at night
• Sit to dress instead of standing and trying to balance on one leg when applying your pants or shorts
• Stay well hydrated to decrease the incidence of postural hypotension
• Take your medications as prescribed by your doctor
• Place frequently used items in the kitchen on shelves that are within arms reach such as on the counter top vs. on a high shelf
• Avoid climbing on ladders or step stools
• Plan your errands and strenuous daily activities to occur when you feel best (earlier in the day vs. later in the day)
• Avoid multi-tasking and do ONE thing at a time such as attending to where your body is in space
• Ask for help!

For additional information regarding fall prevention and balance training, contact Shands at the University of Florida Center for Movement Disorder and Neurorestoration @ 352-294-5385.

In February, the Parkinson’s Action Network hosted its inaugural Postdoctoral Investigator Poster Session inWashington,DC, at which 17 researchers presented their work in the field of Parkinson’s research.  After the poster session, Dr. Stegemoller stayed in Washington for PAN’s Leadership Forum where she listened to panel discussions on Parkinson’s-related issues, and joined grassroots advocates from the state of Florida in meetings with Members of Congress.   PAN made a feature video of the event listed below.

The Parkinson’s Community:  Science & Advocacy Working Together Toward a Cure

http://www.youtube.com/watch?v=DgsGqBILZX4

Int J Neurosci. 2012 Apr 18. [Epub ahead of print]
Bone mineral density (BMD) in male patients with Parkinson’s disease.
Daniel SK, Lansang MC, Okun MS.
University of Florida, College of Liberal Arts and Sciences, Gainesville, FL.

Abstract

Patients with Parkinson’s disease (PD) are at risk for osteoporosis. We aimed to compare male PD subjects with short disease duration (less than 5 years) to those with longer disease duration (5 to 10 years) in bone health characteristics, and in bone mineral density (BMD). This current case series included male idiopathic PD patients ages 18-90 at an outpatient academic center. Outcome measures were bone mineral density and the Unified Parkinson Disease Rating Scale Motor Section (UPDRS III). Thirty-six PD patients received DEXA scans. Seventy-two percent had osteopenia or osteoporosis in at least one bone site. Reduced BMD was observed in 58.8% of the 0-5 years PD group, and in 84.2% of the 5-10 years PD group. There was no difference in the spine BMD between the 0 to 5 years and the 5 to 10 years PD groups, and no difference in femoral neck BMD between PD disease duration groups. There were no differences in UPDRS Part III scores between 0 to 5 years and the 5 to 10 years groups. Prevalence of osteoporosis and osteopenia was high in male PD subjects regardless of disease duration. Bone-health promoting/ screening behaviors were found to be low. As PD patients are prone to falls, fractures, and associated co-morbidities, more research should be performed to determine if a screening regimen is appropriate.

PMID: 22510054 [PubMed - as supplied by publisher]

NPF’s Landmark Quality Improvement Initiative
Enrolls 5,000 Parkinson’s Patients

New Findings Presented at the American Academy of Neurology’s 64th Annual Meeting in New Orleans

The National Parkinson Foundation (NPF) announced today that there are now 5,000 people with Parkinson’s enrolled in its Quality Improvement Initiative (QII), the largest-ever study of clinical care and outcomes in Parkinson’s. The QII builds on a model proven to dramatically increase longevity in cardiovascular surgery and cystic fibrosis. The goal of NPF’s QII is to improve care of people with Parkinson’s by identifying and implementing best practices across NPF centers and beyond. At present, 20 NPF Centers of Excellence participate in the study.

“By measuring treatments and their outcomes of this comprehensive cohort, we can improve care outcomes for all patients with Parkinson’s,” said Eugene Nelson, DSc, MPH, Director, Population Health Measurement Program, Dartmouth Institute for Health Policy and Clinical Practice. “Thus far, QII has shown us that care practices vary at expert centers and that these differences affect people’s quality of life. Using the data collected, we plan to create evidence-based recommendations for Parkinson’s care that we hope will provide greater relief for patients and their families.”

NPF’s QII is being used across NPF Centers of Excellence to inform this guideline development. Analysis of the QII data has already identified important findings which could influence the quality of care across NPF Centers and beyond. Two studies will be presented at the American Academy of Neurology’s (AAN) 64th Annual Meeting in New Orleans, April 21 to April 28, 2012.

The QII builds on a model proven to dramatically increase longevity in cardiovascular surgery and cystic fibrosis. The goal of NPF’s QII is to improve care of people with Parkinson’s by identifying and implementing best practices across NPF centers and beyond. At present, 20 NPF Centers of Excellence participate in the study.

“By measuring treatments and their outcomes of this comprehensive cohort, we can improve care outcomes for all patients with Parkinson’s,” said Eugene Nelson, DSc, MPH, Director, Population Health Measurement Program, Dartmouth Institute for Health Policy and Clinical Practice. “Thus far, QII has shown us that care practices vary at expert centers and that these differences affect people’s quality of life. Using the data collected, we plan to create evidence-based recommendations for Parkinson’s care that we hope will provide greater relief for patients and their families.”

NPF’s QII is being used across NPF Centers of Excellence to inform this guideline development. Analysis of the QII data has already identified important findings which could influence the quality of care across NPF Centers and beyond. Two studies will be presented at the American Academy of Neurology’s (AAN) 64th Annual Meeting in New Orleans, April 21 to April 28, 2012.

Read more about how QII can result in better care for people with Parkinson’s >>>

Press Release

Amantadine: The journey from fighting flu to treating Parkinson disease.

Below is the abstract from her study:

The effects of subthalamic and pallidal deep brain stimulation on postural responses in patients with Parkinson disease.

Alachua County Senior Recreational Center
5701 NW 34th St
Gainesville, FL 32653

Doors open at 8 and speakers start at 9.

Please RSVP with Amanda Eilers at 352-294-5434

The Robert B. Stockdale Movement Disorder Lecture Fund was established in 2010 to support movement disorder research at the UF College of Medicine. Donations to this fund, supporting this annual Symposium and other educational PD events can be made by contacting Stephen Figueroa at 352-273-5882 or sfig@ufl.edu.

http://www.youtube.com/watch?v=7udZ5ux0dYE

Learn more about Deep Brain Stimulation…

The human brain is a supercomputer with networks that control the various functions that make us who we are, and allow us to do what we do.  When brain circuits malfunction, debilitating motor and behavioral symptoms may emerge. Direct electrical modulation of malfunctioning brain circuits has tremendous potential to alleviate human suffering in dramatic and sometimes surprising ways.

Dr. Michael S. Okun has an undergraduate degree in History.  He is a surgical neurologist who has spent the last decade mapping the human brain for over 700 deep brain stimulation surgeries.  He is one of the world’s leading movement disorders and neuropsychiatry researchers, and he serves as the National Medical Director for the National Parkinson Foundation. Dr. Kelly D. Foote has an undergraduate degree in materials science and engineering.  He is a functional neurosurgeon who has performed over 700 deep brain stimulator implantations for various applications. He is one of the world’s leading researchers in stereotactic neurosurgery and neuromodulation. Dr. Okun and Dr. Foote together co-founded the University of Florida Center for Movement Disorders and Neurorestoration, which is a completely patient centric interdisciplinary facility that helps patients from around the world who are suffering from movement and neuropsychiatric disorders.

Discussions ranged from recognition and diagnosis of Parkinsonisms and PSP to pathology and genetics, and then to imaging biomarkers and comprehensive gait evaluation. In neurology and among movement disorders specialists PSP, though relatively rare, is a widely recognized condition but it is clear that the condition can easily be misdiagnosed and may be under-recognized by other physicians. Many of the features, including gait difficulty, falls, slowing, lack of facial expression, and speech difficulty overlap with those seen in Parkinson disease. Furthermore, we are increasingly becoming aware that PSP is a heterogeneous disorder with a sometimes varied presentation. These PSP “variants” were highlighted at the symposium and pathological distinction discussed.

Future efforts clearly will include further characterization and identification of these variants. Current efforts are already underway and involve both genetics (see recent article on genome-wide association study, GWAS, on PSP in Nature Genetics; http://www.nature.com/ng/journal/v43/n7/full/ng.859.html) and biomarkers (molecular markers found in blood or other tissues). Here at UF, we also have ongoing efforts to better understand the pathology and distinguish patients with PSP from classic Parkinson disease with studies that look at brain imaging biomarkers (Vaillancourt lab), utilizing functional MRI and diffusion tensor imaging (DTI), as well as quantitative gait and balance assessments at the UF Applied Neuromechanics Laboratory (Hass lab). A major outcome of this PSP symposium/think-tank was the generation of new ideas and strengthening of collaborative efforts among physicians and researchers.

We again thank all the participants, and in particular the Allen family for their generous support and continued encouragement in the fight against this devastating disorder.

http://news.medinfo.ufl.edu/articles/faculty-recognition/tylers-hope-raises-100000-for-uf-movement-disorders-research/

For the first talk, everyone will be together in the main room. After a short break the attendees will split into two groups. The “Parkinson’s 101″ group will stay in the main ballroom and the “Experinced Patients with Parkinson’s” will move to the Green Room. Talks in the two rooms will be tailored to those groups. The schedule of talks is getting finalized and we will post it ASAP. Stay tuned!

We hope this information helps you!

Some people, if they are lucky, will never have to spend a day of their life in the hospital. Most patients, however, will need to be hospitalized for one reason or another. This is true of patients with Parkinson’s disease (PD). Common reasons for hospital admissions from the emergency room can include infections of the urinary tract or lung (such as pneumonia), chest pain, heart failure, falls, and psychiatric issues. Common reasons for non-emergent hospitalizations include elective surgeries such as knee and hip replacements.

Hospitalization can be stressful for PD patients and their caregivers for a number of important reasons. For example, the neurologist who takes care of you and manages your PD medications may not have privileges at the hospital where you are admitted, and the physicians who are responsible for your care in the hospital may not know a lot about PD. Furthermore, the nursing staff may not have much experience with PD patients, and for various reasons including nursing shortages and/or cuts in staffing—will likely have little time to invest in learning. Finally, if you need to undergo surgery or other invasive medical procedures, you may not be able to take any medications—including your PD meds until the surgery or procedure is complete.

It is important for the patient and the caregiver to plan and to anticipate what is likely to happen. The combination of education and planning can alleviate many of the problems encountered in the hospital. This article will answer five of the most frequently asked questions that PD patients have about hospitalization.

1) When I am in the hospital, why don’t I always get my medications on time?

Many of the problems that PD patients encounter in the hospital involve medications. A common problem is timing. It is important to realize that hospitals and hospital pharmacies have their own dosing schedules. For example, if a medication is written for “QID (four times a day),” the standard hospital schedule may be 8 AM – 1 PM – 6 PM – 11 PM or some similar variation. A medication written for “TID (three times a day)” may be given at 7 AM – 3 PM – 11 PM or some other standard 8-hour interval schedule. Furthermore, many hospitals may have a policy where the nurses have a window for administering medications (generally, one hour before the scheduled time to one hour after the scheduled time). This window is provided as a practical compromise because nursing staffs are busy, and each nurse is is involved in the care of multiple patients. Such a policy provides the nurse time to complete his/her scheduled duties, and provides flexibility in case of emergency on the ward. As a result, PD patients will in most cases receive their medications at seemingly random times.

How can such a situation be remedied? First, make sure that the drug schedule, with specific times, is written into the doctor’s orders. For example, if carbidopa/levodopa (Sinemet) is given four times a day, but at 6 AM – 10 AM – 2 PM – 6 PM, make sure that the physician taking care of you knows that it should be given at those specific times.

Also make sure that you bring with you the complete list of your medications and that the dose of each medication is correct. Carbidopa/levodopa can come as a 10/100, 25/100 or 25/250 tablet for the standard form, while the long-acting form (Sinemet CR®) comes in two strengths, 25/100 and 50/200. Other common medications, such as pramipexole (Mirapex) and ropinirole (Requip), also come in multiple strengths. Finally, when you first arrive in your room, talk with your nurse about the importance of receiving your medications on time. Explain that without the medications you can be immobile or uncomfortable, and that the medications allow you to move around independently. You may know more than the doctor and the staff about PD, and it will therefore become your job to help them understand your situation. While you will still need to be somewhat flexible (there are many other important duties that may occupy a nurse’s time), sharing your knowledge with the staff can alleviate many problems. All hospital staffs want their patients to be well cared for during their stay.

Pearl: Not everyone in the hospital is familiar with PD patients, so you should be ready to share your knowledge about PD and help them understand why you need to take your medications at specific times.

2) Why can’t I take my own medications in the hospital? Why do they substitute some medications for me?

While you are hospitalized, the nursing staff must have control of your medications. This is a safety issue, and is standard hospital policy. It is not a reflection of what the staff thinks of you, so don’t take it personally. If you let the staff know what medication is supposed to be given and how it is to be administered, there should not be any significant problems.

In some cases, patients may be taking medications that are not stocked in the hospital pharmacy. In such situations, the physician taking care of you in the hospital may have to prescribe substitute medications. If you want to take your own medications while in the hospital, you need to bring them from home in their original bottles and give them to the nursing staff, who will then dispense your own medications—without need for substitution while you are hospitalized. If you are enrolled in an experimental drug protocol, it is even more important that you follow this practice. In some hospitals and outpatient surgical facilities, the doctor can write an order to allow patients to take their own medicines; however, the doses and times must be written in the chart, and the pill ingestion must be supervised and documented.

Pearl: Find out what the hospital rule is for taking your own medication. Always bring your medications in the original bottles when hospitalized, and bring a list of the medications, doses, and times of administration.

3) My mother has PD and was recently hospitalized. However, she seems to be moving much worse in the hospital than she was at home. Why is that?

Several explanations are possible. When PD patients have an infection of some kind, whether it is the common cold, pneumonia, or a urinary tract infection, they often feel like their symptoms worsen. Increased tremor or more difficulty walking may be noted.When the infection is treated and resolves, the Parkinson’s symptoms generally return to baseline. Another symptom that may worsen when PD patients have an infection is swallowing. When swallowing is impaired and patients are weak, the food may go down into the lungs, causing an “aspiration pneumonia,” which in turn, may further impair swallowing ability. In these situations, a speech pathology consultation can be useful to formally assess swallowing and to make dietary recommendations. In addition, a respiratory therapist consultation for “chest PT” may be helpful. Chest PT consists of several minutes of chest clapping to help mobilize the sputum and make it easier to cough.Another possibility is that a new medication was started in the hospital and that medication resulted in worsening of the PD symptoms. Common offenders include antipsychotic drugs or anti-nausea drugs. Haloperidol (Haldol) is a common antipsychotic drug that is used in hospital settings and is a favorite of many doctors because it comes in an injectable form. This drug blocks dopamine receptors and worsens PD. Other commonly used antipsychotics include risperidone (Risperdal),olanzapine (Zyprexa), and aripiprazole (Abilify). The only antipsychotics that can be used safely in PD patients are clozapine (Clozaril) and quetiapine (Seroquel). Common anti-nausea medications that can worsen PD include prochlorperazine (Compazine), promethazine (Phenergan), and metoclopramide (Reglan). These medications have similar structures to the antipsychotics and should not be used. The anti-nausea drugs Trimethobenzamide (Tigan) and ondansetron (Zofran) are suitable alternatives that can be used without fear of worsening PD. Regardless of the cause, all PD patients should be as active as possible while in the hospital. Moving around not only tones muscle, it allows faster recovery and prevents decomposition of the skin, which can happen when staying in one position for too long. Depending upon your condition, however, you may not have a choice, as your doctor may order bedrest. In that case, physical therapy should be ordered as soon as possible.Some patients may also need rehabilitation at a rehabilitation hospital or a nursing facility before being discharged to home.

Pearl: There are multiple explanations for worsening of PD while in the hospital. Infections should be sought and treated. Drugs that block dopamine, like haloperidol and certain anti-nausea drugs, should be avoided. Chest PT, speech pathology, and physical therapy may all be useful in the recovery process.

4) My husband has PD and became confused in the hospital last time he was there. How can I prevent this?

Confusion can be a major problem for hospitalized patients, particularly in the elderly. This occurrence is unfortunately common and does not mean that your loved one had a stroke or another major setback. Many things happen in the hospital that can contribute to confusion. Any infection in a PD patient can be enough to tip a patient “over the edge” mentally. Similarly, infections can adversely affect motor function, as we discussed above. The introduction of new medications frequently results in disorientation and memory problems, especially with the introduction of pain medications. Lack of sleep while in the hospital can also contribute to a confusional state. Continuous alarms from IV machines and hallway lights can result in frequent awakening. Nurses also may regularly enter the room overnight to take vital signs, to give medications, or to check on a patient. In some patients, especially in elderly people who have intermittent confusion at home, just the fact that they are placed in a different and unfamiliar environment may tip them into a delirious state. Finally, confusion is commonly seen following a surgical procedure. This is due to the combined effects of anesthesia and medications to treat the pain of surgical incision.

Confusion will often disappear once the underlying cause is treated, whether by addressing the infection or withdrawing the offending medications. Diagnostic testing is rarely necessary. Frequent reassurance, support and comfort may be all that is needed to assist the patient through this period. However, sometimes confusion can lead to behavioral problems, such as aggression, refusal to take pills, and even hallucinations or delusions. In these cases, physical restraints are sometimes necessary to prevent self injury. Some hospitals have bed or wheelchair alarms to alert nurses when patients attempt to wander, while other hospitals may recommend a private duty sitter to help promote patients’ safety. If a patient has psychotic symptoms, such as visual hallucinations, antipsychotics may be used. Remember, in nearly all cases, clozapine (Clozaril) and quetiapine (Seroquel) are the only antipsychotics that should be used for someone with PD. Occasionally, lorazepam (Ativan) or diazepam (Valium) can be helpful. These drugs, by themselves, may worsen confusion, but they also can calm the patient. These medications are only temporary and may be discontinued when the confusion resolves.

In very severe cases of confusion with hallucinations and behavioral changes, it may be necessary to temporarily discontinue dopamine agonists, MAO inhibitors, amantadine, benzodiazepines, and pain medications if possible. Treatment in these cases with carbidopa/levodopa and either clozapine or quetiapine will usually result in improvement. Later, once patients are stable, they may be slowly titrated back onto previous doses, if tolerated.

Pearl: Infection and medications are common causes of confusion during hospitalization, When the underlying cause is addressed, the confusion usually improves dramatically.

5) I had deep brain stimulators (DBS) placed for PD two years ago. I now need to have knee replacement surgery. Will the doctors know how to take care of me?

While thousands of patients worldwide have had deep brain stimulation treatment for PD and other movement disorders, many medical professionals and hospitals may still not be familiar with this treatment. Many patients with DBS undergo knee replacement surgery, and other procedures, without difficulty. However, there are a few points you and your doctors should be aware of. First of all, if you have had DBS surgery, you can only get a brain MRI, and it must be done with something called a head-receive coil. You cannot get a MRI of any other part of the body. This situation exists because, during MRI, the DBS device can become heated and can damage the brain tissue. There are also certain precautions that the radiologists must be aware of while performing a brain MRI. These are available from the FDA. Furthermore, the voltage on your stimulator should be turned down to 0 prior to having an MRI performed. Only an experienced programmer should supervise the procedure. If there is not an experienced member of the DBS team available. in the hospital where you are being treated, and/or if the institution is not familiar with performing MRIs in DBS patients, it is probably best not to have the MRI, or to wait and have it at an experienced center.

The stimulators can sometimes interfere with the ability to obtain an electrocardiogram (EKG). This test may be important if you happen to have cardiac problems before, during, or after surgery. Therefore, you should bring your portable Medtronic Access Device or Access Review Device (or a magnet that comes with the device) to turn off your stimulator in the hospital. Make sure you know how to turn your stimulators on and off before going to the hospital, and before having any type of surgery. (Again, do not assume that the medical staff will be able to turn them off for you.) Similarly, if you need a brain wave test called an electroencephalogram (EEG), or will simply be monitored during an inpatient or outpatient procedure, you will need to know how to turn your device off.

If you are undergoing surgery and you have DBS, most anesthetics are safe. However, some precautions need to be taken when using electrocautery. Electrocautery stops bleeding during surgery and could potentially reset your stimulator to its factory settings. As a precaution, only bipolar electrocautery is recommended (with grounding placed below the level of the device). If your neurologist is on staff at the hospital where you are having surgery, he/she should confirm that your stimulator is on and that the correct settings are reset following surgery. If your neurologist is not at the hospital where you are being operated, you should schedule a follow-up appointment to recheck your settings soon after you are discharged from the hospital.

Pearl: Be aware of what procedures can be done safely with DBS, and be ready to assume primary responsibility for turning it on and off for procedures.

CONCLUSION The above tips and scenarios will hopefully aid in minimizing problems for PD patients who are hospitalized. Be aware that for unclear reasons some PD patients worsen following general or local anaesthesia, and some even feel as if they never return to their baseline. In general, local anasethesia is thought to be safer than general anaesthesia. If you have problems with thinking and memory, these issues should be evaluated prior to surgery as they may also worsen following surgery. Finally, it is important for you to have discussions with close family members about what you would like to have done in case of a life-threatening emergency. They and the medical staff should be aware of your medical wishes. You should choose an advocate who can ask questions and act as your spokesperson. If you have a living will or a durable health care power of attorney, these documents should be brought to the hospital and placed in your medical chart.

By Kelvin L. Chou, MD, Michael S. Okun, MD, Hubert H. Fernandez, MD., Diane Breslow, MSW, LCSW, Joseph H. Friedman, MD for National Parkinson Foundation

How can poor posture affect you?

• Difficulty speaking clearly and loudly
• Difficulty with moving your neck and upper extremities
• Change your perception of your body’s position in space
• Can alter balance and lead to falls from having your weight shifted forward
• Decrease strength of postural muscles
• Headaches and TMJ pain
• Difficulty swallowing

How to help correct you posture!

-          Stretching:  The forward flexed posture associated with Parkinson’s disease decreases the flexibility of the muscles on the anterior side of the body including areas of the chest, shoulders, and neck.  Stretches that focus on opening of the chest, neck, and upper back will promote correction of the forward flexed posture.

-          Strengthening:  Due to the fact that the anterior body muscles decrease in flexibility, the opposing back muscles are unable to perform their jobs maintaining a straight back and tend to become overstretched. This in turn leads to weakness.  Improving the strength of your back musculature will help keep you upright for a longer period of time.

Here are some exercises that you can do at home to help correct your posture…

Chin Tuck

Chin Tuck  -  The goal of a chin tuck is to decrease forward head posture. To perform a chin tuck, sit up as straight as possible. Next move your head and neck up and back, trying to bring your ears into alignment over your shoulders. Tuck your chin in towards your body. **This tends to make the unpleasant “double chin” but also means you have successfully performed a chin tuck!** Repeat 10-20 times daily.

Scapular Retraction

Scapular Retraction – The goal of the scapular retraction is to decrease rounding of the shoulders. To perform scapular retraction, again, sit up as straight as possible. Bend your elbows at your side. Pull your elbows back behind your body as if you are rowing back. Keep your shoulders down away from your ears. As the arms move back, try to pinch your shoulder blades together. Repeat 10-20 times daily.

Thoracic extension

Thoracic Extension – The goal of thoracic extension is to decrease rounding of the upper back known as “increased kyphosis”. To perform this exercise, sit in a chair that has a low back that will act as a hinge point for your spine. Clasp your hands behind your head and open your elbows out wide. Lean up and back over the chair. Lastly tilt your head up towards the ceiling. Take a deep breath in! Exhale and repeat 5-10 times daily.

Learn more about Physical Therapy for Movement Disorders…

For more information, please contact Shands Rehabilitation at the Center for Movement Disorders and Neurorestoration @: 352-294-5385

Resources:

Schenkman M. Reply: A randomized controlled trial of Movement strategies compared with exercise for people with Parkinson’s disease. Mov Disord. 2010;25(4):524.

Vaugoyeau M, Viallet F, Aurenty R, et al. Axial rotation in Parkinson’s disease. J Neurol Neurosugr Psychiatry. 2006;77:815-21.

Schenkman M et al. Spinal flexibility and balance control among community-dwelling adults with and without parkinson’s disease. J Gerontol Biol Sci Med Sci. 2000;55(8):M441-5

Schenkman M, Cutson TM, Kuchibhatla M, et al. Exercise to improve spinal flexibility and function for people with Parkinson’s disease: a randomized, controlled trial. J Am Geriatr Soc.1998;46(10):1207-16.

Vaugoveau M, Hakam H, Azulay JP. Proprioceptive impairment and postural orientation control in parkinson’s disease. Hum Mov Sci. 2011;30(2);405-14

Special Thanks to Tulsi Patel, SPT for blog research & writing and the MDC Parkinson’s exercise group Allstars!

• an action plan to prepare for a hospital visit;
• a Parkinson’s ID bracelet to wear at all times in case of an emergency;
• a form to list medications and dosages for important, time-sensitive PD medications;
• a fact sheet; reminder slips for hospital staff that list vital information about PD care.

Dr. Michael Okun, Medical Director for the NPF and also Co-Director of our UF Center for Movement Disorders & Neurorestoration said ”Our research scientists have unearthed important factors which can lower the risk of illness, serious complications and even death of hospitalized Parkinson’s patients. For my patients, and for the up to one million people suffering from Parkinson’s in the U.S., Aware in Care will improve the type of attention and treatment they get in hospitals.”

Learn more on the Aware In Care website.

Physicians, researchers, fellows and students are encouraged to attend!

Download the the flyer with the schedule and contact Dr. McFarland for more information.

In a press release, the Tourette Syndrome Association said:

Our hearts go out to the teens and their families. We at the TSA understand all too well how upseting it is for children and families when abnormal movements present without obvious cause.  The TSA stands ready to help in any way we can and is prepared to help with referrals to one of many movement disorder experts from within our large network of providers network . . .

. . . It is important to note that Tourette syndrome is a childhood-onset condition (average age of diagnosis is 7 years) which is characterized by motor and vocal tics.  The prevlance among children and teens is slightly less than 1%, occurs sporadically in communities and is not contagious in any way.

Read the full press release…

Watch a clip of the Dr. Drew show with Dr. Okun…

Altering the way you stand improves your ability to start walking.

Positive emotions improve your ability to start walking.

Only 10% to 15% of Parkinson’s patients are good candidates for DBS, says Michael Okun, medical director of the National Parkinson Foundation. It’s most useful for people experiencing tremor, stiffness and other movement problems but not other cognitive problems or health issues. DBS isn’t a cure for Parkinson’s; the disease still progresses. And as with other surgeries, there is a risk of infection, stroke or other complications. Some patients find their speech slurred after the surgery, and others report falling issues.

Read the full article on the Wall St. Journal site.

Dr. Okun, Co-Director of the UF Center for Movement Disorders & Neurorestoration and first author on the paper, said in a UF Health News article about the research:

“I think it is safe to say since dopamine treatment emerged in the 1960s, DBS has been the single biggest symptomatic breakthrough for Parkinson patients who have experienced the fluctuations associated with levodopa therapy,” said Michael S. Okun, M.D., first author of the study, administrative director of the UF College of Medicine’s Center for Movement Disorders and Neurorestoration, and the National Medical Director for the National Parkinson Foundation. “This study validates the use of mild electrical currents delivered to specific brain structures in order to improve Parkinson’s disease in select patients with advanced symptoms, and additionally, it explored a new stimulation paradigm. Future improvements in devices and the delivery systems for DBS will hopefully provide exciting new opportunities for Parkinson’s sufferers.”

In the Gainesville Sun:

“It’s a very good device and it works well,” Okun said of the brain stimulator’s results on Parkinson’s patients. “But I think this study is the marker for the evolving state of technology. We’re going to see more and more improvements.”

Below is a video about the study results:

Read the abstract of the paper (and if you are a subscriber to Lancet Neurology, download the paper).

The group discusses how to

• Detect and manage non-motor symptoms of PD
• Identify and assess caregiver strain
• Discuss advanced care planning with patients and caregivers

Read the results of their discussion. Read about more PD topics from other roundtables.

Mood and motor trajectories in Parkinson’s disease: Multivariate latent growth curve modeling.

Physical Therapist Meredith DeFranco celebrates with Samantha Staab

Runners and walkers start

UF Center for Movement Disorders & Neurorestoration Season of Hope Runner’s Time Results:

5K Times:

Half-Mile Timing – Contractor License            HY-TEK’s Meet Manager

Season of Hope Run – 12/10/2011
15K and 5K
Hawthorne Trail: Gainesville, Fl

Last Completed Event

Event 1  Mixed 100 & Under 5k Run RR

=======================================================================
Name                     Age Team                    Finals  Points
=======================================================================

Overall Results Women 5000 Run

1 #566 Sugrue, Rebecca     W17 Unattached            23:35.70
2 #637 Rubeis, Rochelle    W26 Unattached            23:42.00
3 #504 Perry, Caroline     W13 Unattached            24:24.50

Overall Results Men 5000 Run

1 #614 Webb, Tom           M24 Unattached            17:13.90
2 #307 Anderson, Jeffery   M18 Unattached            17:25.00
3 #498 Panicotto, Michael  M28 Unattached            17:35.60

100 & Under Results – Women 5000 Run

1 #592 Whitely, Jessica    W27 Unattached            24:31.10
2 #449 Luca, Erin          W25 Unattached            25:14.70
3 #647 Wagner, Kelly       W39 Unattached            25:43.80
4 #432 Kinsell, Kim        W36 Unattached            25:51.60
5 #550 Smith, Brande1      W36 Unattached            26:07.40
6 #619 Deshon, Karen       W25 Unattached            26:28.50
7 #354 Davies, Katherine   W26 Unattached            27:16.90
8 #408 Hassan, Anhar       W34 Unattached            27:34.90
9 #475 Moody, Meagan       W37 Unattached            27:35.00
10 #615 lewaudowski, Kristy W28 Unattached            27:44.40
11 #497 Pagan, Victoria     W46 Unattached            27:50.50
12 #492 Obarowski, Sarah    W22 Unattached            27:53.60
13 #337 Cerf, Celina        W20 Unattached            27:53.80
14 #510 Politowicz, Robin   W50 Unattached            28:01.70
15 #595 Wlasuk, Patricia    W46 Unattached            28:29.90
16 #477 Morel, Laurence     W51 Unattached            28:39.40
17 #536 Schaffer, Brooke    W13 Unattached            28:40.00
18 #406 Handy, Christine    W32 Unattached            28:53.80
19 #308 Armengol, Laura     W26 Unattached            28:56.60
20 #517 Ranum, Laura        W51 Unattached            29:00.90
21 #581 Vettel, Jennifer    W22 Unattached            29:02.30
22 #314 Beck, Heather       W31 Unattached            29:08.20
23 #532 Schafer, Amy        W33 Unattached            29:15.90
24 #575 Troche, Michelle    W30 Unattached            29:29.20
25 #519 Reichardt, Jane     W24 Unattached            29:31.20
26 #387 Gaw, Deborah        W56 Unattached            29:57.00
27 #627 Callard, Cannelle   W43 Unattached            30:03.50
28 #338 Chang, Jennifer     W27 Unattached            30:22.20
29 #302 Aina, Titi          W28 Unattached            30:22.30
30 #426 Karas, Casey        W36 Unattached            30:24.30
31 #365 Diehl, Elizabeth    W46 Unattached            30:29.30
32 #386 Gardner-Smith, Port W53 Unattached            30:35.00
33 #306 Anderson, Lori      W55 Unattached            30:40.10
34 #318 Berthelot, Nia      W20 Unattached            30:48.70
35 #596 Wolcott, Lisa       W46 Unattached            30:52.20
36 #442 Le-Wendling, linda  W35 Unattached            30:59.80
37 #366 Disesa, Rachel      W37 Unattached            31:32.00
38 #535 Schaffer, Savannah  W15 Unattached            31:32.90
39 #555 Speer, Marjorie     W42 Unattached            31:38.30
40 #483 Nestle, Carolyn     W27 Unattached            31:49.70
41 #457 Martineau, Gail     W59 Unattached            31:52.20
42 #334 Burkert, Emily      W23 Unattached            32:03.70
43 #522 Rhodes, Tiffany     W28 Unattached            32:07.80
44 #607 Doty, Suzanne       W45 Unattached            32:14.90
45 #533 Schaffer, Angel     W40 Unattached            32:17.90
46 #311 Barton, Amy         W32 Unattached            32:20.20
47 #371 Donovan, Tiffany    W14 Unattached            32:21.60
48 #586 Warren, Lisa        W47 Unattached            32:30.80
49 #509 Poling, Taylor      W25 Unattached            32:50.50
50 #446 Logan, Joy          W36 Unattached            33:01.00
51 #351 Crews, Emily        W23 Unattached            33:04.10
52 #634 Odim, Merci         W28 Unattached            33:04.30
53 #552 Smith, Fallan       W22 Unattached            33:04.50
54 #369 Donovan, Amanda     W17 Unattached            33:09.50
55 #598 Woodward, Suzanne   W52 Unattached            33:16.10
56 #554 Soeder, Anne        W49 Unattached            33:25.50
57 #591 West, Kay           W66 Unattached            34:47.20
58 #329 Braswell, Staci     W30 Unattached            34:51.00
59 #345 Consolazio, Molly   W16 Unattached            35:02.00
60 #392 Gordon, Patti       W54 Unattached            35:12.80
61 #503 Perry, Christan     W14 Unattached            35:34.80
62 #417 Holbrook, Bailey    W24 Unattached            35:45.80
63 #513 Powell, Anne        W27 Unattached            35:46.40
64 #451 Madorsky, Irina     W44 Unattached            36:02.90
65 #464 McGee, Danielle     W28 Unattached            36:54.50
66 #549 Smith, Sarah        W16 Unattached            37:25.40
67 #582 Walker, Heather     W20 Unattached            37:34.50
68 #384 Fox, Sonia          W41 Unattached            38:01.40
69 #604 Rose, Dorian        W49 Unattached            38:33.00
70 #441 Lentz, McKenzie     W20 Unattached            38:39.40
71 #427 Kay, Janene         W29 Unattached            39:14.30
72 #373 Dyal, Debra         W48 Unattached            39:43.00
73 #593 Wilder, Margot      W26 Unattached            39:52.20
74 #335 Butcher, Emily      W21 Unattached            40:22.50
75 #385 Fox, Olivia          W7 Unattached            40:25.90
76 #454 Marken, Jada        W13 Unattached            40:36.40
77 #620 Foote, Angela       W45 Unattached            40:37.40
78 #508 Pietri, Frances     W23 Unattached            41:03.70
79 #468 McKinney, Jane      W60 Unattached            41:25.20
80 #360 DeLoach, Julia      W32 Unattached            41:44.40
81 #646 Prial, Cherrie      W25 Unattached            41:44.50
82 #632 Meaut, Debra Ann    W51 Unattached            42:23.70
83 #622 Sage, Ella           W6 Unattached            43:34.00
84 #447 Lowry, Lacy         W32 Unattached            44:01.00
85 #524 Rodriguez, Sophia   W10 Unattached            45:46.40
86 #494 Osburn, Cindy       W48 Unattached            45:57.50
87 #636 Winhnyk, Patricia   W59 Unattached            46:35.20
88 #346 Consolazio, Lori    W48 Unattached            49:36.10
89 #374 Eilers, Amanda      W30 Unattached            50:18.60
90 #631 Craine, Melinda     W56 Unattached            51:54.30
91 #640 Maxwell, Laura      W34 Unattached            51:54.40
92 #528 Sahara, Tomoko      W46 Unattached            52:14.00
93 #412 Herring, Mandy      W25 Unattached            52:14.60
94 #331 Brockman, Kristina  W29 Unattached            52:57.20
95 #429 Kilcoyne, Kaitlyn   W20 Unattached            52:57.90
96 #546 Siubutt, Carrie     W36 Unattached            56:10.00
97 #639 Munson, Sarah       W41 Unattached            56:28.00
98 #344 Conrad, Darlene     W59 Unattached            59:01.00
99 #418 Holbrook, Pam       W56 Unattached            59:45.50
100 #423 Juvenal, Rebecca    W52 Unattached            59:47.10
101 #649 Ross, Peyton        W14 Unattached          1:01:59.70
102 #486 Newmon, Linda       W61 Unattached          1:02:03.60
103 #398 Griffin, April      W47 Unattached          1:02:04.00
104 #485 Newell, Brooke      W25 Unattached          1:02:04.80
105 #394 Green, Jim          W57 Unattached          1:02:08.80
106 #439 Larkin, Brittany    W32 Unattached          1:02:10.40
107 #568 Swathwood, Sharen   W56 Unattached          1:02:13.50
108 #545 Siu Butt, Suzie     W33 Unattached          1:05:04.20
109 #319 Beyer, Lawanna      W50 Unattached          1:05:04.40
110 #320 Beyer, Melissa      W16 Unattached          1:05:04.50
111 #567 Swartz, Cami        W43 Unattached          1:07:58.90
112 #325 bland, pam          W62 Unattached          1:07:59.10
113 #558 staab, michelle     W41 Unattached          1:09:01.10
114 #301 Staab, Samantha     W10 Unattached          1:09:01.20

100 & Under Results – Men 5000 Run

1 #612 Blair, Albert       M50 Unattached            20:48.70
2 #534 Schaffer, daniel    M41 Unattached            20:56.90
3 #633 Bowser, Andrew      M17 Unattached            21:11.20
4 #537 Schaffer, Grant     M13 Unattached            21:42.20
5 #610 Seymour, Tyler      M19 Unattached            22:27.10
6 #491 nyquist, david      M58 Unattached            22:40.50
7 #600 Zumberg, Jacob      M13 Unattached            23:16.80
8 #621 Troy, Ryan          M22 Unattached            23:18.80
9 #602 Zumberg, Benjamin    M7 Unattached            24:30.60
10 #347 Consolazio, Gary    M45 Unattached            24:38.00
11 #348 Consolazio, Michael M19 Unattached            24:39.20
12 #363 DeWolf, Ludo        M47 Unattached            24:41.70
13 #358 DeFranco, Logan     M17 Unattached            24:46.60
14 #551 Smith, Jackson       M9 Unattached            24:47.50
15 #648 Wagner, Phil        M45 Unattached            25:07.90
16 #589 wendling, adam      M35 Unattached            25:10.10
17 #399 Griffin, Stephen    M22 Unattached            25:14.60
18 #531 Schafer, Chad       M33 Unattached            25:33.00
19 #490 Norrington, Zachary M22 Unattached            25:36.10
20 #431 Kinsell, Miles      M36 Unattached            25:52.70
21 #400 Griffin, Andrew     M17 Unattached            25:58.40
22 #518 Ranum, Robert       M53 Unattached            26:12.50
23 #476 Moody, Tim          M41 Unattached            27:17.80
24 #577 Turner, Stephen     M29 Unattached            27:23.60
25 #376 Elrod, Jonathan     M23 Unattached            27:24.60
26 #505 Peters, Stephen     M14 Unattached            27:26.20
27 #463 McFarland, Nikolaus M42 Unattached            28:16.90
28 #349 Covert, Orrie       M41 Unattached            28:20.00
29 #313 Bauer, Andrew       M24 Unattached            28:41.70
30 #628 Bennett, Billy      M40 Unattached            28:42.70
31 #304 Alsbrook, James     M30 Unattached            29:05.60
32 #372 Donovan, Trell      M13 Unattached            29:14.80
33 #579 Vaner Meer, Robert  M69 Unattached            29:25.00
34 #465 McGee, Dwight       M28 Unattached            29:58.50
35 #341 Clark, Aiden         M9 Unattached            30:04.90
36 #342 Clark, Isaac         M9 Unattached            30:04.90
37 #425 Karas, Brandon      M37 Unattached            30:26.40
38 #401 Griffin, Thomas     M20 Unattached            30:46.20
39 #760 Runner 1, Unknown    M1 Unattached            31:25.10
40 #500 Peck, Caleb         M31 Unattached            31:25.10
41 #576 Troche, Joshua      M24 Unattached            31:30.60
42 #332 Brodell, David      M24 Unattached            31:34.00
43 #529 Salamone, Martin    M39 Unattached            31:39.90
44 #514 Ramachandran, Giris M26 Unattached            31:53.30
45 #542 Sims, Greg          M39 Unattached            32:15.00
46 #413 Herring, Jordan     M31 Unattached            33:17.00
47 #559 Staab, Luke          M7 Unattached            33:19.20
48 #379 Foote, Kelly        M45 Unattached            33:19.40
49 #557 Staab, Richard      M43 Unattached            33:19.80
50 #405 Hamilton, Wade      M41 Unattached            33:20.20
51 #506 Pettie, Robert      M41 Unattached            33:28.60
52 #368 Donovan, Art        M56 Unattached            33:39.30
53 #629 Elmalke, Mohammed   M35 Unattached            33:57.40
54 #590 West, Nick          M68 Unattached            34:47.60
55 #452 Madorsky, Alexander M44 Unattached            35:28.10
56 #415 Hesser, Ken         M36 Unattached            37:00.80
57 #512 Pounds, Jameson     M22 Unattached            37:33.60
58 #501 Pena, Javier        M19 Unattached            40:22.70
59 #383 Fox, David          M44 Unattached            40:26.20
60 #469 McKinney, Stephen   M60 Unattached            41:25.00
61 #438 Larkin, Scott       M36 Unattached            41:52.70
62 #440 Larkin, Jacob        M7 Unattached            41:52.80
63 #448 Lowry Jr, Joseph    M32 Unattached            42:16.30
64 #453 Marken, Doug        M56 Unattached            43:33.50
65 #525 Rodriguez, Ramon    M37 Unattached            45:47.70
66 #312 Bauer, Russell      M58 Unattached            45:49.10
67 #635 Wihnyk, Henry       M57 Unattached            46:36.50
68 #397 Griffin, Kevin      M48 Unattached            48:56.10
69 #377 Fessenden, Ryan     M29 Unattached            50:18.60
70 #330 Brockman, Jayme     M29 Unattached            53:44.00
71 #370 Donovan, Sean       M14 Unattached            53:53.10
72 #544 Siu Butt, Frederick M69 Unattached          1:05:04.30
73 #324 bland, dana         M55 Unattached          1:07:59.20

15K Times:

Half-Mile Timing – Contractor License            HY-TEK’s Meet Manager

Season of Hope Run – 12/10/2011
15K and 5K
Hawthorne Trail: Gainesville, Fl

Last Completed Event

Event 2  Mixed 100 & Under 15k Run RR

=======================================================================
Name                     Age Team                    Finals  Points
=======================================================================

Overall Results Women 15000 Run

1 #357 defranco, meredith  W27 Unattached          1:01:29.40
2 #352 Dahlke, Sheena      W28 Unattached          1:02:04.40
3 #580 Vertes, Eva         W26 Unattached          1:05:56.50

Overall Results Men 15000 Run

1 #340 Clark, Daniel       M39 Unattached            52:46.80
2 #416 Hiers, Travis       M29 Unattached          1:01:22.90
3 #444 Logan, Jake         M33 Unattached          1:03:27.20

100 & Under Results – Women 15000 Run

1 #443 Livingston, Wendy   W24 Unattached          1:07:26.30
2 #478 Morey, Jessica      W30 Unattached          1:08:39.10
3 #594 Williams, Stephanie W25 Unattached          1:12:26.40
4 #609 Tumbleson, Karen    W42 Unattached          1:13:12.80
5 #553 Smith, Claudia      W54 Unattached          1:17:33.70
6 #471 Miller, Diane       W60 Unattached          1:18:06.20
7 #428 Kebbel, Mallory     W27 Unattached          1:19:36.10
8 #624 Johnston, Alex      W24 Unattached          1:20:05.00
9 #317 Berkelhammer, Shell W43 Unattached          1:21:33.00
10 #496 Oxer, Christina     W39 Unattached          1:22:52.10
11 #599 Zitt, Michelle      W26 Unattached          1:22:53.60
12 #336 Cain, Christy       W40 Unattached          1:22:59.30
13 #455 Maroon, Blair       W30 Unattached          1:23:50.90
14 #560 Stanley, Robyn      W37 Unattached          1:23:51.10
15 #459 maynard, Lauren     W26 Unattached          1:23:53.00
16 #569 Talham, Karen       W46 Unattached          1:24:04.70
17 #616 Shultz, Janice      W46 Unattached          1:24:05.00
18 #564 Stuart, Jennifer    W29 Unattached          1:24:13.50
19 #356 Davis, Joy          W33 Unattached          1:24:23.30
20 #526 Roper, Jaimie       W25 Unattached          1:26:53.40
21 #381 Fowler, Robin       W38 Unattached          1:27:17.10
22 #547 Slater, Erin        W31 Unattached          1:27:49.50
23 #578 van Montfrans, Vero W28 Unattached          1:27:56.40
24 #643 Cane, Brittany      W32 Unattached          1:28:13.00
25 #343 conner, eleanor     W49 Unattached          1:29:57.40
26 #583 Waller, Judith      W44 Unattached          1:30:19.40
27 #393 Graepel, Jenna      W21 Unattached          1:30:27.40
28 #315 Behn, Lacey         W21 Unattached          1:30:27.70
29 #515 Ramey, Karen        W46 Unattached          1:31:18.10
30 #303 Allen, Lisa         W45 Unattached          1:31:57.40
31 #570 Taylor, Maggie      W50 Unattached          1:35:24.20
32 #573 Tilley, Katharine   W59 Unattached          1:36:04.10
33 #467 McKerlie, Kelly     W43 Unattached          1:36:37.60
34 #328 Bowman, Kelly       W28 Unattached          1:37:18.10
35 #456 Martin, Christine   W27 Unattached          1:37:18.30
36 #523 Roditi, Daniela     W25 Unattached          1:37:29.10
37 #375 ElMallah, Mai       W33 Unattached          1:39:32.10
38 #353 Davendonis-Todd, De W27 Unattached          1:39:43.90
39 #601 Zumberg, Rachel     W10 Unattached          1:40:55.70
40 #543 Singleton, Angela   W34 Unattached          1:42:36.40
41 #422 Jolley, Sarah       W35 Unattached          1:44:58.90
42 #645 Burkhardt, Megen    W18 Unattached          1:46:05.00
43 #644 Burkhardt, Barbara  W51 Unattached          1:46:05.40
44 #367 dobbins, angela     W28 Unattached          1:46:16.10
45 #540 Shaw, Karen         W45 Unattached          1:47:06.30
46 #719 Hope, Vicki         W65 Unattached          1:47:40.00
47 #322 blalock, jennifer   W43 Unattached          1:49:28.40
48 #430 Kingsley, Jennifer  W36 Unattached          1:49:41.50
49 #361 Dennis, Marie       W32 Unattached          1:58:21.00
50 #411 Henry, Nancy        W49 Unattached          1:59:38.40

100 & Under Results – Men 15000 Run

1 #495 Ou, Mark            M41 Unattached          1:04:33.50
2 #516 Randles, Theodore   M27 Unattached          1:07:09.80
3 #316 Benjamin, Allan     M56 Unattached          1:07:32.80
4 #410 Hay, Duncan         M53 Unattached          1:07:57.00
5 #539 Scott, Michael      M45 Unattached          1:08:12.40
6 #630 Cochran, Mark       M55 Unattached          1:08:16.00
7 #458 Masoodi, Nasseer    M40 Unattached          1:08:56.10
8 #390 Gillette, Austin    M17 Unattached          1:09:30.80
9 #309 Armstrong, Anthony  M20 Unattached          1:09:41.90
10 #623 Johnston, John      M57 Unattached          1:09:47.40
11 #382 Fowler, Michael     M38 Unattached          1:11:27.10
12 #445 Logan, Max          M14 Unattached          1:12:23.20
13 #584 Waller, Benjamin    M15 Unattached          1:13:04.60
14 #611 Reeves, Westley     M58 Unattached          1:13:13.80
15 #613 Detweiler, Steven   M64 Unattached          1:13:52.70
16 #403 Gylys, Julius       M48 Unattached          1:14:11.50
17 #310 Ashizawa, Tetsuo    M63 Unattached          1:14:28.80
18 #359 Delcambre, Jeremy   M32 Unattached          1:14:57.80
19 #470 Mendez Gomez, Hecto M29 Unattached          1:16:36.70
20 #618 Paige, Richard      M42 Unattached          1:18:05.80
21 #389 Gillette, Gary      M40 Unattached          1:18:36.80
22 #561 Stevens, Matt       M34 Unattached          1:19:06.40
23 #396 Greene, Alexander   M20 Unattached          1:21:25.60
24 #395 Greene, David       M50 Unattached          1:21:31.70
25 #323 blalock, donovan    M11 Unattached          1:22:49.90
26 #402 Guthrie, Gregory    M32 Unattached          1:22:53.20
27 #650 Li, Yuqing          M48 Unattached          1:23:35.50
28 #355 Davis, Christopher  M38 Unattached          1:24:24.00
29 #433 kniseley, david     M53 Unattached          1:25:04.60
30 #641 Lane, Seth          M30 Unattached          1:28:13.30
31 #548 Slater, Harry       M30 Unattached          1:28:21.50
32 #507 philips, jimmy      M63 Unattached          1:29:29.30
33 #617 Bosarge, David      M42 Unattached          1:29:45.50
34 #638 Munson, Adam        M100 Unattached          1:30:41.90
35 #530 schackow, robert    M64 Unattached          1:32:16.60
36 #642 Grebe, Paul         M58 Unattached          1:34:58.50
37 #350 Covert, OT          M14 Unattached          1:35:55.50
38 #407 Hartman, Eric       M32 Unattached          1:36:50.90
39 #574 Todd, Sean          M30 Unattached          1:38:46.00
40 #484 Newell, Steven      M24 Unattached          1:42:41.10
41 #420 Hsu, Derek Hsen Dai M26 Unattached          1:45:30.80

The University of Florida Center for Movement Disorders & Neurorestoration and Tyler’s Hope: World leaders in Parkinson’s disease, dystonia, and movement disorders.

Come join Tyler’s Hope and The UF Center for Movement Disorders and Neurorestoration for our 2nd annual Season of Hope Run on the beautiful Gainesville Hawthorne Trail. Certification of the 15K has been approved by the USATF (FL11088EBM). Perfect for Qualifying for a race! Wonderful race for the person who just wants to run a 5K on a majestic trail where wildlife is abundant! Shirts are available for first 300 participants and prizes for the top 3 M/F 5k and 15K runners.

Race is at 8:30 am December 10th. Register here…

At the University of Florida Center for Movement Disorders and Neurorestoration a patient can partake in a physical therapy evaluation that includes an analysis of your gait. Freezing of gait occurs in Parkinson’s disease and can contribute to loss of balance and subsequent falls. Our physical therapist will work with you to determine the triggers that contribute to freezing and then provide compensatory strategies to help decrease freezing.

Common triggers of freezing include:

• Crowded environments
• Turning corners
• Tight enclosed spaces (such as a saturated closet in your home)
• Changes in flooring such as when walking from a room with wood flooring to a room with tile flooring
• Crossing over thresholds, **particularly from outside to inside or from inside to outside
• Turning around in a circle
• Divided attention or distractions

What can be done to “thaw” one out when freezing occurs?

There are various cues and/or tricks that can be tried with your physical therapist to determine which cue will work best for you. Examples of such cues include:

• Visual cues: Provide feedback to through your eyes and visual system to provide you with a location to place your foot when stepping. Visual cues include: lasers on canes and U-step walkers, placing lines of tape on the floor, placing X’s of tape in a semi-circle in tight spaces, and stepping over the foot of the therapist while gait training.
• Auditory cues: We rely on feedback through our ears to establish a rhythm “step to the beat”. These cues come in the form of music, counting out loud “1,2, 3..”, or using a metronome. There are also applications for smart phones that can provide sounds like a metronome that your therapist can demonstrate for you!

Not every cue works for every patient! But it is important to consult with your PT to find which one will help you.

For more information, please consult with your Neurologist or contact Shands Rehabilitation at the Center for Movement Disorders and Neurorestoration @: 352-294-5385

Learn more about our Physical Therapy program.

References:
Lohnes CA, Earhart GM. The impact of attentional, auditory, and combined cues on walking during single and cognitive dual tasks in Parkinson disease. Gait and Posture 33 (2011) 478-483.

Plotnik M, Giladi N, Balash Y, Peretz C, Hausdorff J. Is freezing of gait in Parkinson’s Disease Related to Asymmetric Motor Function? Annals of Neurology. Vol 57 No 5, May 2005

Stem cell pathologies and neurological disease.

By Irene Malaty M.D.

1.)            My doctor says I have tics.  Does that mean I have Tourette syndrome (TS)?

Not everyone that has tics has Tourette syndrome.

Tics are sudden recurrent non-rhythmic stereotypical movements or vocalizations that a person makes.  Most typically, a person experiences an urge or sensory discomfort that leads to performing the tic, and there may be a temporary sense of relief upon completion of the tic.  At times, however, a person may feel that the tics are completely involuntary.   Common tics include blinking, head jerking, sniffing, or grunting.  Less commonly, tics can be extremely disruptive and even cause self-injury.

“Tourette syndrome” is the condition of having both motor and vocal tics at some point, with tics lasting over one year and not remitting for more than three months.  Tics typically change in presentation (location, type, and/or severity) over time.  TS describes a condition that is not caused by another illness.  The onset of symptoms is typically before 18 years of age.

2.)             Is there a test my doctor can do to tell if I have Tourette syndrome?

Tourette syndrome is diagnosed clinically, meaning that a clinician typically makes the diagnosis based on a person’s symptoms and clinical examination.  Sometimes home videos can be helpful as tics may be suppressed while in the doctor’s office.  There is not a specific blood test or diagnostic test that confirms the diagnosis.  A physician may do lab testing or imaging studies to rule out other conditions that can mimic Tourette syndrome, however.

3.)            Can people with tics control them if they want to? 

People with tics can often hold them in for a very brief period, but doing so may result in a build-up of the need to perform the tic(s) and a subsequent outburst.

4.)            Does everyone say bad words?

No.  In fact, the phenomena called “coprolalia” meaning swearing or saying socially inappropriate or derogatory words or phrases, and “copropraxia” meaning performing socially inappropriate gestures, are seen in only a small minority of people with Tourette syndrome.   The media and entertainment industry have popularized the perception that these are critical components to the Tourette syndrome.

5.)            What is the cause of Tourette syndrome?

Although the cause is not completely understood, there seems to be a genetic component that contributes.  Some specific genetic associations have been discovered, such as the rare causes of mutations in the SLITRK1 gene or the HDC genes which have been found in a small percentage of people with TS.  Research is ongoing to further work out the genes behind this syndrome.   The genetic contribution does not fully explain the variation in symptoms within a family or the fact that some individuals have no family history, and not all sets of twins will both express the TS if one of the twins does.  Currently, overactivity of some brain circuits that relate to the neurotransmitter dopamine seems to be at the heart of the condition.  Theories relating to an immune mechanism, hormonal influences, and changes in early brain development have all been considered.

6.)            What is the prognosis? 

People with TS can live full, productive lives.  The majority of people with classical TS will have improvement or even full remission of symptoms in late adolescence or early adulthood.  The symptoms may persist, however, in some people. 

7.)            Is there a cure? 

At this point in time, there is no cure, but there are many treatments that help control the symptoms that cause some people disability.  These include oral medications to help control the tics and also the common “co-morbidities” known to occur in a large number of people with TS (see below).

8.)            Do I have to take medicine? 

Of course not.  Some people with TS do not require any treatment at all, and others decide to take medication or use other therapeutic strategies to control symptoms that are bothersome.  Habit reversal training is a non-pharmacologic therapeutic strategy with some evidence of benefit in tic reduction.  This behavioral therapy requires working with a practitioner trained in the technique, and learning strategies to have alternative responses to the internal urge to perform tics.

9.)            I have tics, but they are not my worst problem.  Is it common to have other difficulties (co-morbidities) with TS?

Yes.  Children and adults with TS have increased risk of attention deficit disorder (which may or may not involve hyperactivity) and also obsessive compulsive disorder.  Depression, anxiety, and impulse control disorders are also more likely to occur in people with TS than in the general population.  Sometimes these co-morbidities can be more troublesome than the tics themselves.

10.)         What kind of research is taking place? 

Research is ongoing to find the cause for TS as well as finding treatments and ultimately cures.  One example is a large project called a genome wide association scan, which means that blood is being collected from people with TS to find what genetic component they may have in common.  This has potential to help determine the cause and eventually treatments or cures.  Medications and also surgical treatments (deep brain stimulation) are under investigation as well.

Great resources for learning the latest about Tourette can come from speaking with your physician and from the following websites:

Tourette Syndrome Association:  www.tsa-usa.org

ClinicalTrials.gov: http://www.clinicaltrials.gov/ct2/results?term=tourette

WORLDWIDE EDUCATION AND AWARENESS FOR MOVEMENT DISORDERS: www.wemove.org

Addiction-like Manifestations and Parkinson’s Disease: A Large Single Center Nine Year Experience.

The students are displaying the "balls" used for Halloween themed tennis exercise

The UF Occupational Therapy students have been given a special opportunity to host our weekly group exercise class for Parkinson’s patients. Last week the students prepared Halloween themed games and exercises. Spooky fun was had by all! Thank you students for a great job!

~Lisa Warren and Meredith DeFranco

**Join us every Thursday night at 5:15pm to partake in the fun!

There are significant problems with stem cells as a potential savior therapy for Parkinson’s disease.  First, when you take a cell and make it divide you must be able to turn it on and off.  If you cannot control growth of the cells, then they have the potential to form cancers.  This limitation of stem cell therapy is an area that has drawn increasing attention from researchers and funding organizations, and pairing stem cell therapy with gene therapy for example may help to alleviate this issue.  The other major issue with stem cell therapy is that it fails to address the complexity of Parkinson’s disease.  Parkinson’s disease was long thought to be a simple loss of dopaminergic cells in an area of the midbrain called the substantia nigra.  We are now aware that there is a much greater level of complexity to this disease and that multiple motor and non-motor circuits and regions (Alexander, DeLong et al. 1986; Alexander, Crutcher et al. 1990) throughout the brain area affected.  Additionally, Parkinson’s disease may actually be multiple diseases with similar manifestations.  This issue of multiple regions as well as the issue of addressing multiple motor and non-motor symptoms may prove limiting for stem cells or for any transplantation strategy.  An important area of research therefore, will need to be investigation into “how to encourage stem cells” to repopulate and repair multiple brain circuits in many brain regions (Arias-Carrion, Freundlieb et al. 2007; Steindler 2007; Trzaska and Rameshwar 2007; Wang, Chen et al. 2007; Deuschl 2008; Svendsen 2008; Wijeyekoon and Barker 2008; Xi and Zhang 2008).

University of Florida Parkinson’s Treatment Tips blog written by Michael S. Okun, M.D., You can also read Dr. Okun’s book Ask the Doctor about Parkinson’s Disease (Demos Publishing).

On Saturday, December 10, 2011 @ 8:30AM, our Dystonia and Parkinson’s communities will  once again race this  5K/15K route at Hawthorne Trail to raise funds to benefit research.   For registration info:-Season of Hope 2011 REGISTER

BAG & CHIP pick-up: December 9, 5:30-7:30

at Morgan Stanley Smith Barney on NW 8^th Avenue (for info, please call 352-332-9300) or pick up on day day of race on the trail between 715& 815AM

Race and Walk will occur on December 10th, 8:30 AM at

Hawthorne Trail in Gainesville’s Paines Prairie; 3300 SE 15th Street; Gainesville, FL 32602 at Boulware Springs City Park

Dyskinesias are abnormal, involuntary movements that occur in response to repeated dopamine-replacement therapy (Brotchie 2005; Olanow 2001). Sometimes, they can be debilitating. These motor complications are typically “choreiform”. Chorea comes from the Greek word meaning “to dance”, so the dyskinesias looks similar to dance-like, constant writhing or wriggling movements of the arms, legs, trunk, and sometimes even facial muscles. However, dyskinesias can also be dystonic (prolonged twisting of body parts), or myoclonic (rapid and random twitching of isolated muscle groups) or other movement disorders, and can become progressively more severe with increasing duration of treatment (Brotchie 2005; Olanow 2001). Sometimes, with advancing disease, it becomes increasingly difficult to find a dose of levodopa that provides symptom relief while avoiding dyskinesia.

Treatment Tips

If you have severe dyskinesia(s) here are a few treatment tips we have found valuable over the years:

1. Go to a Parkinson’s specialist who has a lot of experience dealing with this issue, and remember it may take multiple visits to resolve the issue.
2. Remember that dyskinesia is usually driven by the dose of levodopa (sinemet) and/or agonist.  Reducing the dose, and possibly taking smaller doses more frequently may be an option.
3. Remember that drugs like Entacapone (Comtan) (which is also a component of Stalevo) can make dyskinesia worse.
4. In severe cases, holding a dose or two of sinemet can be helpful to gain control of the situation.  Remember stopping sinemet for a day or two can be dangerous so always consult your doctor for prolonged drug holidays (which are not recommended).
5. In severe prolonged and disabling dyskinesia many experts will eliminate dopamine agonists, MAO-B drugs, Comtan (or Stalevo), and may switch to a sinemet only regimen.  They will search for a low dose of sinemet that will allow the patient to feel “on” with minimal to no dyskinesia.  They will then give this low dose frequently enough to keep them “on” for as many hours in the day as possible.
6. Occasionally, patients with severe dyskinesia can be switched to liquid sinemet, although for most patients this is not a long-term viable strategy.
7. Amantadine can be added to a regimen to suppress dyskinesia– for some sufferers.
8. The most severe and medication resistant cases may be considered to be screened for deep brain stimulation or a duodopa pump.

Parkinson’s Treatment Tips is a blog brought to you by Dr. Michael S. Okun of the University of Florida Center for Movement Disorders and Neurorestoration

Learn more about Parkinson’s Disease.

Also, you can read more in Dr. Okun’s book, Ask the Expert about Parkinson’s Disease, Demos Publishing.

There is no reliable blood test to diagnose Parkinson’s disease.  The best way to make a diagnosis is to have a neurological examination by someone experienced in the care of Parkinson’s disease patients.  There are diagnostic criteria for the diagnosis of Parkinson’s disease (UK Brain Bank Criteria), which usually include:

I: Is Bradykinesia (slowness of movement present?

II: Are two of the below present?

___ Rigidity (Stiffness in arms, leg, or neck)

___ 4-6 Hertz resting tremor

___ Postural instability not caused by primary visual, vestibular, cerebellar, proprioceptive dysfunction

III: Are at least 3 of the below present?

___ Unilateral onset

___ Rest tremor present

___ Progressive disorder

___ Persistent asymmetry affecting side of onset most

___ Excellent response (70-100%) to levodopa

___ Severe levodopa induced dyskinesia

___ Levodopa response for 5 years or more

___ Clinical course of 5 years or more

Very rarely, there exists confusion about the diagnosis, and in these cases other tests such as Positron Emission Tomography, and Beta SPECT scanning (DAT) may be useful. (Hughes, Ben-Shlomo et al. 1992; Hughes, Daniel et al. 1992; Hughes, Daniel et al. 1993; Jankovic 2008; Jankovic and Aguilar 2008).  DAT Scans have recently been approved by the FDA to differentiate Parkinson’s disease from essential tremor.

Parkinson’s Treatment Tips Blog is brought to you by the University of Florida Center for Movement Disorders & Neurorestoration http://mdc.mbi.ufl.edu

Read more Parkinson’s Treatment Tips in Dr. Okun’s book.

1. How do I know if I have PSP and not just Parkinson disease or “Parkinsonism?”

   Parkinsonism actually is not a diagnosis, but rather what we doctors use to describe the classic symptoms of Parkinson disease. These include 1) tremor—usually resting, 2) stiffness or rigidity, 3) slowed movement (bradykinesia), and 4) gait and postural instability. There are many causes of Parkinsonism, such as drugs, stroke, or hydrocephalus. However, the most common cause is Parkinson disease, which is a progressive neurodegenerative disorder characterized mainly by loss of dopamine cells in the brain. Closely related neurodegenerative disorders that cause Parkinsonism include PSP (and others, such as Lewy body dementia, multiple system atrophy, and corticobasal degeneration). PSP shares many features with Parkinson disease, but patients classically present with early onset gait instability and frequent falls in the first year or two of disease. Additional symptoms include decline in voluntary eye movements and facial expression (often leading to a stare-like look), slowing of movements, speech and swallow difficulty, and change in cognitive function and even emotion. In contrast to Parkinson disease, PSP symptoms have a limited response to typical Parkinson medications such as carbidopa/levodopa and can progress more rapidly. To be sure of your diagnosis, seek a neurologist familiar with Parkinsons and ask for specialist with movement disorders training, such as you will find here at the UF Center for Movement Disorders & Neurorestoration.

2. Are there any treatments for PSP? What’s on the horizon?

   Unfortunately there is still no one pill that currently effectively treats or can “cure” PSP symptoms. Sinemet (carbidopa/levodopa) may be tried for the Parkinsonism and in some patients helps, but often the response is limited and higher doses only cause side effects. If stiffness/rigidity is severe, muscle relaxants sometimes are helpful. Other medications are used based on specific symptoms, such as scopolamine for drooling, antidepressants for mood, and sometimes drugs for cognitive dysfunction.  The mainstay of treatment, however, is primarily supportive and involves multiple disciplines, including physical, occupational, and speech therapists. There is hope around the corner though, with active research and several ongoing clinical trials (see http://www.clinicaltrials.gov/ct2/results?term=progressive+supranuclear+palsy) such as the Davunetide drug trial.

3. I am falling frequently. What should I do?

   Falls are one of the leading causes of injury, disability, and even death in the elderly. Evaluation early on by a trained physical therapist, knowledgeable in Parkinsonism, is critical to help with gait, balance, and prevent falls. Assistive devices such as a walker may be prescribed early on and exercises to help with balance and walking. It is imperative to be followed and assessed routinely as disease symptoms to progress and needs will change. In addition, consider a home safety evaluation to help look for things like loose rugs and stairs which may be sources of falls.

4. When should we consider placement of a G-tube for feeding?

   Swallow difficulty can be a significant problem for patients with PSP. Routine formal swallow evaluation is critical and should be performed about every 6 months or more often as needed. There are special swallow techiques that can be learned, as well ways to modify one’s diet to prevent choking. The main concern is aspiration, or swallowing something down the wind-pipe, which can cause a reactive (and even infectious) pneumonia. Pneumonias of course are a leading cause of death in patients. At some point late in the disease, swallowing may become very difficult and the risk of aspiration too high. It is vitally important that before that happens you should discuss with your doctor your wishes regarding a feeding tube. The choice is personal and there are several factors to consider. A feeding tube (gastric or G-tube) is placed though a simple surgical procedure. It can provide access for supplemental feeding, nutrition, liquids and medications. Eating for pleasure may still be possible as long as the risk is low. A feeding tube thus can potentially prolong life and health. However, a feeding tube will not stop disease progression in PSP, and the risk of aspiration is still there due to potential reflux (which can be reduced by sitting or keeping the head of bed up or raised by about 45 degrees).

5. Ups and downs, “roller coaster” emotions

   In PSP emotional lability, or pseudobulbar affect, may occur and is characterized by sudden or inappropriate laughter or inconsolable crying. Other mood disturbance may occur including depression and apathy, but these “mood swings” can be quite disconcerting both for family members and the patient. Treatment often initially includes antidepressants. Additional therapy may include a dextromethorphan (a common medication in cough suppressants) and quinine which have been shown to be effective.

6. Where do I get support for my family member with PSP?

   Start with your doctor. It is important that you always communicate your needs and concerns. We here at the UF Center for Movement Disorders & Neurorestoration are an excellent resource for patients with PSP, both clinically and for research, as well as for information and support. We have an interdisciplinary group interested in helping you and your family member with PSP. Increasingly, we also now have a network of patients and family members who are open to discussing their experiences with caring for someone with PSP. In addition, the CurePSP organization (www.psp.org) is a wonderful source of information online and includes an active internet support group. There are also other local PSP support groups that we may be able to refer you to for further information.

Please feel free to contact me, Dr. Nikolaus McFarland, University of Florida Center for Movement Disorders and Neurorestoration http://mdc.mbi.ufl.edu, nikolaus.mcfarland@neurology.ufl.edu for further information.

1. Check for a urinary tract infection or pneumonia
2. Consider the medication list and consider that medications may be the underlying cause, or contributing to the cause especially pain medications, muscle relaxants, and benzodiazepines (valium, ativan, clonazepam)
3. Consider under the guidance of your doctor a temporary reduction in Parkinson’s treatment medications
4. In some severe cases experts may consider temporarily stopping anticholinergics (trihexyphenidyl, artane, beztropine, benadryl), amantadine, MAO-B inhibitors (selegiline, rasagiline, zelapar, others), entacapone, and even dopamine agonists
5. In some severe case small doses of sinemet or madopar are used to try to gain control of the hallucinations/psychosis, but one must be aware this strategy could worsen Parkinson’s disease symptoms
6. Experts will frequently use dopamine blocking medications such as seroquel or clozaril, but almost never will use other dopamine blockers such as haldol, resperidal, and olanzapine– which all may worsen Parkinson’s symptoms.
7. Call your neurologist immediately if you experience hallucinations or psychosis.

How commonly do Parkinson’s disease patients develop psychosis?

Psychosis in Parkinson’s disease generally comes in two forms: hallucinations (when patients see or hear or feel things that aren’t really there) or delusions (which are fixed false beliefs). When hallucinations occur, they are mostly visual  (usually these are non-threatening, and patients mostly see small people or animals, or  loved ones who have already died, not interacting with them but doing their own thing) (Zahodne and Fernandez 2008a; Zahodne and Fernandez 2008b; Fernandez 2008; Fernandez et al 2008; Friedman and Fernandez 2000). Sometimes, they can be threatening, but this is less common. Auditory hallucinations (more commonly seen in schizophrenia) are rare in Parkinson’s disease and if they do occur, they are usually accompanied by visual hallucinations.

Delusions are usually of a common theme, typically of spousal infidelity. Other themes are often paranoid in nature (such as thinking that people are out to steal from one’s belongings, or to harm or place poison on their food, or substitute their Parkinson medications, etc.) Because they are paranoid in nature, they can be more threatening and more immediate action is often necessary, compared to visual hallucinations (Zahodne and Fernandez 2008a; Zahodne and Fernandez 2008b; Fernandez 2008; Fernandez et al 2008; Friedman and Fernandez 2000). It is not uncommon that patients actually call 9-1-1 or the police to report a burglary or a plot to hurt them.

Unfortunately, psychosis occurs in up to 40% of Parkinson’s disease patients (Fenelon et al 2000). In the early stage of Parkinson’s disease psychosis, the patient often still has a clear understanding and retains their insight, but this tends to worsen over time and insight may eventually be lost. At later stages, patients may be confused and have impaired reality testing; that is, they are unable to distinguish personal, subjective experiences from the reality of the external world. Psychosis in Parkinson’s disease patients frequently occurs initially in the evening, then later on spills into the rest of the day.

What triggers psychosis in Parkinson’s disease?

Psychosis in Parkinson’s disease is believed to be due to long term use of parkinsonian medications especially dopaminergic and anticholinergic drugs (Fenelon 2008; Zahodne and Fernandez 2008a; Zahodne and Fernandez 2008b; Fernandez 2008; Fernandez et al 2008; Friedman and Fernandez 2000). However, significant medication exposure is no longer a pre-requisite in Parkinson’s disease psychosis (Ravina, Marder, Fernandez, et al 2007). The “continuum hypothesis” states that medication-induced psychiatric symptoms in Parkinson’s disease starts with sleep disturbances accompanied by vivid dreams, and then develops into hallucinations and delusions, and ends in delirium. However this theory is now being challenged (Goetz 1998).

How is psychosis managed?

The urgency of treatment will depend on the type and characteristics of psychosis. Sometimes, when the hallucinations are mild and benign, and insight is retained, it is best that the Parkinson regimen be kept as is. However, when a patient is experiencing more threatening paranoid delusions, then more aggressive treatment is warranted (Zahodne and Fernandez 2008a; Zahodne and Fernandez 2008b; Fernandez 2008; Fernandez et al 2008; Friedman and Fernandez 2000).

The management of psychosis includes:

1. Ruling out the possible reversible causes (such as infections, metabolic and electrolyte imbalances, sleep disorders)
2. Decreasing or discontinuing adjunctive antiparkinsonian drugs (with cautious monitoring of motor function). Typically, when a patient is on several anti-parkinsonian medications, we “peel off” one drug at a time, until the psychosis resolves or further ‘peeling’ is no longer practical because of worsening of Parkinson motor symptoms. We usually eliminate drugs in the following order: anticholinergic drugs , amantadine, selegiline or rasagiline, dopamine agonists, catechol O-methyltransferase (COMT) inhibitors, and finally levodopa
3. Simplifying the Parkinson’s disease medication regimen
4. Adding a new or second generation antipsychotic (be careful: some antipsychotics can be harmful to Parkinson’s disease patients!)
5. If psychosis occurs in a Parkinson’s disease patient with cognitive impairment or dementia, a cholinesterase inhibitor (such donepezil, rivastigmine) may be considered

Read more about Parkinson’s Treatment Tips in the recent book: Ask the Doctor about Parkinson’s Disease

What are the worst drugs for Parkinson’s disease patients?  Couldn’t a simple list be assembled and disseminated to the Parkinson community?  Recently Ed Steinmetz, an experienced neurologist in Ft. Meyers, FL pointed out to me, a list approach published in the Public Citizen Newsletter (www.worstpills.org).  The approach was to list every drug associated with a single confirmed or unconfirmed symptom of Parkinson’s disease or parkinsonism.  Parkinson’s disease is defined as a neurodegenerative syndrome (common symptoms include tremor, stiffness, slowness, posture and gait issues), whereas parkinsonism encompasses a wider net of drug induced and other potential causes. In parkinsonism symptoms are similar to Parkinson’s disease, but patients do not have Parkinson’s disease.  Patients and family members confronted with a simple “drug list” approach may falsely conclude that most medicines are bad for Parkinson’s disease, and that any medicine may cause parkinsonism.  This concept is in general, incorrect.  Although the approach is well-meaning, it is in need of a major revision, as Parkinson’s disease and parkinsonism are too complex to summarize by simple lists. In this month’s column I will try to summarize the key information that patients and family members need to know about the “worst pills,” for Parkinson’s disease and parkinsonism.

It is well known that drugs that block dopamine worsen Parkinson’s disease and also worsen parkinsonism, whereas dopamine replacement therapy (Carbidopa/Levodopa, Sinemet) may improve symptoms.  One of the big issues facing many Parkinson’s disease patients is psychosis (hallucinations, illusions, and behavioral changes such as paranoia).  How does one concomitantly administer dopamine replacement therapy, which may in some cases induce psychosis, and at the same time administer dopamine blocker drugs aimed at alleviating psychosis?  Will the drugs cancel each other out?  There are two dopamine blockers that will not cancel out dopamine replacement, and therefore not appreciably worsen Parkinson’s disease.  One is Quetiapine (Seroquel), and the other is Clozapine (Clozaril).  Clozapine is the more powerful of the two drugs, but it requires weekly blood monitoring.  Other classical dopamine blocking drugs, also referred to as neuroleptics (e.g. Haldol), worsen Parkinson’s disease and parkinsonism.

Patients may not be aware that some common drugs used for conditions such as headache or gastrointestinal dysmotility may also block dopamine, and concomitantly worsen Parkinson’s disease, or alternatively result in parkinsonism.  These drugs include Prochlorperazine (Compazine), Promethazine (Phenergan), and Metoclopramide (Reglan).  They should be avoided.  Also, drugs that deplete dopamine such as reserpine and tetrabenazine may worsen Parkinson’s disease and parkinsonism and should be avoided in most cases.  Substitute drugs that do not result in worsening of parkinsonism can be utilized, and these include Ondansetron (Zofran) for nausea, and erythromycin for gastrointestinal motility.

Antidepressants, anxiolytics, mood stabilizers, thyroid replacement drugs, and antihypertensives are in general safe, and do not worsen Parkinson’s disease and parkinsonism.  They appear commonly on lists such as that provided by the Public Citizen, but these lists are misleading.  There may be rare reactions that lead to worsening of Parkinson’s disease or parkinsonism with these drugs, but these are very rare occurrences.   The bigger issue is drug-drug interactions.  The most commonly encountered in Parkinson’s disease is mixing a MAO-B Inhibitor (Selegline, Rasagiline, Azilect, Zelapar, Selegiline Hydrochloride Dissolvable) with a pain medicine such as Meperidine (Demerol).  Also, MAO-A Inhibitors (e.g. Pirlindole) should not be taken with antidepressants.  And finally it should be kept in mind that in rare instances mixing an antidepressant with another class of drugs can in select cases result in a serotonin syndrome.  Finally, remember, there are very common “other” side effects of antidepressants, anxiolytic drugs, mood stabilizers, thyroid replacement drugs, and antihypertensives.

In summary, the list approach to the worst pills in Parkinson’s disease and parkinsonism needs a critical reappraisal.  A more refined approach would take into consideration the complexities of Parkinson’s disease and parkinsonism, and would appreciate that with physician guidance, and with few exceptions, most drugs can be safely and effectively administered in Parkinson’s disease and parkinsonism.

*Portions of this post have previously appeared on Dr. Okun NPF What’s Hot in Parkinson’s Treatment blog.

A Florida Parkinson’s Treatment Blog by Michael S. Okun, M.D.

UF Center for Movement Disorders & Neurorestoration, Gainesville FL

Over the years we have noticed that Parkinson’s disease patients commonly present with constipation.  We always recommend as much daily vigorous exercise as is possible, and drinking 6-8 glasses of water a day.  If that doesn’t work, we have over the last ten years handed people this formula, which has been a secret that has been refined by Janet Romrell, P.A.-C in our practice.

Constipation Treatment Tricks

Constipation is an alteration in stool frequency, consistency, and/or passage of stool. The normal pattern of bowel movements can and will vary by 1 to 3 days. A stool-voiding pattern of every day or every other day is encouraged.

Causes

• Change in diet or activity
  • Lowered activity – Exercise and increased activity will assist in establishing regular bowel patterns.
  • Diet – Be sure to include fiber-rich foods:  bran, whole-grain breads – oat, rye, fruits, vegetables (leave peel on), whole-grain cereals, oatmeal, pasta, nuts, popcorn and brown rice.
• Medical Reasons -  cancer, pregnancy, hemorrhoids, neurological disorder, muscular disorder, intestinal inflammation.
• Medications -  narcotics, sedatives, antacids, antispasmodics, iron supplements
• Not drinking enough fluids – Drink at least 6 to 8, 8 ounce glasses of fluids per day. This is all inclusive (everything you drink like water, tea, coffee, juice, colas, etc.), but water is best, and we encourage you to drink primarily water. Bladder patients should reduce fluid intake after the evening meal.

Note that the daily recommended fiber intake:  20 – 30 grams

A Natural Recipe

Miller’s (unprocessed wheat) Bran*        1 cup

Applesauce                                      ½ cup

Prune Juice                                      ½ cup

Mix these ingredients together and refrigerate. Replace the mixture each week. Take 1 – 2 Tablespoons daily for one week for desired results. If needed, you may increase dose by 1 Tablespoon each week. Stool frequency and gas may increase the first few weeks but will usually adjust after one month.

*Miller’s Bran is unprocessed wheat bran. This may be purchased at most large grocery stores and is found with either the hot cereals or flours and baking goods. The most commonly found brand name is Hodgson Mill and it comes in a brown 14 oz. box. Miller’s Bran may also be purchased in bulk at health food stores.

You can also sprinkle bran on food to supplement your fiber intake.

Bowel Clean Out

The bowel clean out should be done before starting on the bowel program that is outlined for you by your physician. This should be done on a day when you will be at home all day to minimize the risk of accidentally soiling your clothes. The bowel clean out is a two-part procedure:

In the morning take 2 oz. of Milk of Magnesia and follow that with a hot drink. This could be hot coffee, hot tea or even hot broth. This helps to stimulate the bowel and enhance the effects of the Milk of Magnesia.

That evening, after dinner, give yourself a Fleet enema. This helps to make sure the rectum is empty. You should be able to rest the night without worry or discomfort.

This procedure may be repeated the next day if needed.

Medications

• Bulk producing:  Metamucil, Fibercom or Citrucel. Mix 1-2 Tablespoons in juice or water and take by mouth 1 to 2 times daily. This adds consistency or bulk to the stool and facilitates water retention in stool – must take adequate fluids by mouth to avoid causing constipation.
• Stool Softeners:  Colace. Softens stool by facilitating the admixture of fat and water (detergent activity). Do not use with mineral oil. Take 1 tablet by mouth 1 to 2 times daily.
• Combinations:  Pericolace. Mild stool softener and laxative combined. Take by mouth 1 to 2 times daily.
• Irritant/Stimulant:  Products containing Senna. Laxative with direct action on the intestinal mucosa and the nervous plexus of the bowel.
• Suppositories:  Glycerin, Dulcolax. Inserted rectally every other day or when needed. Stimulates the rectum and assists with evacuation.

Dr. Janis Miyasaki at the University of Toronto, recently shared her experiences in treating constipation in PD patients over many years, and I have found her approach particularly helpful (here is a blurb from her):

I learned in practice never to ask patients, “do you have a problem with constipation?” Most People With Parkinson’s don’t have a problem with constipation – they’ve been living with it for years. Now, I ask, “how often do you have a bowel movement?” Most people – even with Parkinson disease – can have a bowel movement every day. Constipation is present in more than 60% of patients and may occur even before motor symptoms like tremor and stiffness start.

Constipation is a problem because stomach emptying is also slow. As a result, your pills don’t get delivered to the part of the bowels where they can be absorbed. Your pills may be less effective. You will feel bloated and uncomfortable. Your appetite may reduce. There is evidence that constipation increases your risk for bowel cancer. In extreme cases, bowel obstruction may occur. This means that your bowels can not move because all of the stool (poop) in your gut. This is a problem because the blood supply to the gut is also blocked and your bowels can have a “stroke”. Then you will need to have surgery and possibly an ostomy bag (the gut is attached to your abdominal wall and a bag collects your stool and must be emptied at least daily).

Prevention is the key! Exercise, proper diet and enough water to help your bowels work are essential (generally eight glasses of water a day or more if you are sweating – this is more than your body needs to keep hydrated, but enough to keep your stool soft). Changing the diet to include more whole grains, avoiding white bread, pasta and rice will also help.

Your body wants to have a bowel movement in the morning. Help it by taking hot oatmeal in the morning with a hot strong cup of coffee. You can add dried figs or dates.

Avoid Metamucil or other forms of psyllium since in the slow gut, this tends to become hard and make constipation worse in Parkinson disease.

Polyethylene glycol 1350 or Miralex (available in drug stores over the counter) is also effective in Parkinson disease. The dose used in a study was 7.3 grams of macrogol dissolved in 1 cup of water twice a day.

If this doesn’t work, ask your Primary Care Physician, neurologist or movement disorders specialist for prescribed medications.

Get more Parkinson’s Treatment Tips…

References:

Ramjit AL, Sediq L, Leibner J, Wu ss, Dai Y, Okun MS< Rodriguez RL, Malaty IA, Fernandez HH. The relationship between anosmia, constipation and orthostasis and Parkinson’s disease duration: results of a pilot study. Int J Neurosci 2010 Jan;120(1):67-70.

Zesiewicz TA, Sullivan KL, Arnulf I, Chaudhuri KR, Morgan JC, Gronseth GS, Miyasaki J, Iverson DJ, Weiner WJ. Practice parameter: treatment of nonmotor symptoms of Parkinson disease: report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2010;74(11):924-31.

A Florida Blog by Michael S. Okun, M.D.

UF Center for Movement Disorders & Neurorestoration, Gainesville FL

Turning up the brain » Florida Physician – University of Florida College of Medicine.

*All are welcome, we ask that you consult with your physician for medical clearance.

Contact us for more information!

Find the online CME course here.

Rasheda Ali, author of "I'll Hold Your Hand So You Won't Fall: A Child's Guide To Parkinson's Disease"

Rasheda was inspired to write her book, by watching the interaction between her children and her father, the legendary boxer Muhammad Ali. She travels the globe as an author and advocate for Parkinson’s care and research.

Please join us at 7PM on May 25 at the UF Hilton & Conference Center. Light hors d’oeuvres and refreshments will be served, Ali’s lecture begins at 8pm, and attendees will receive a signed copy of her book. Tickets are $100 per person and all proceeds from the event will benefit patient care and research in Parkinson’s disease, Dystonia, Tourette’s and other movement disorders.

Register now for this event!

We wish to thank our sponsors for the Night of Champions:

Benefactor Sponsor:

Anonymous
Infinite Energy

Supporting Sponsors:

Tom and Joyce Valdes
The B.E. Greene Family
Gator Custom Mobility

Jack and Mary Alice Hickey
Mr. and Mrs. James Callier, Jr.
The Robinson and Carolyn Henderson Fund
St Jude Medical

Founding Sponsors:

James and Margaret Zehnder Foundation
Anonymous
Lundbeck, Inc.
Barnes Healthcare Services

Principal Sponsors:

Mr. and Mrs. Gene Simonsen
Beth and Bayard Miller
Jonelle Toothman
Medtronic

In kind sponsors:

Rasheda Ali
UF Hilton and Conference Center
Scientia Solutions Group
UF Orthopaedics and Sports Medicine Institute
Shands HealthCare
Carl Sandberg
Pepsi Beverages Company

The Auto Valet

Floral Expressions Florist

Dorn’s Liquors and Wine Warehouse

Gosia & Ali

Manny Alonso
Anna Alonso Olcese/Competira

Chef Brothers Custom Catering

Swank Audio Visuals

The annual meeting continues through this week with more than 2,000 educational and research presentations on prevention and treatment of brain disorders. Upon return from AAN, Dr. Okun, along with co-director Dr. Foote and the rest of the Movement Disorders team will be celebrating the grand opening of the new UF Center for Movement Disorders & Neurorestoration on the 4th floor of the UF Orthopaedics & Sports Medicine Institute.

The center will occupy the fourth floor of the UF Orthopaedics and Sports Medicine Institute at 3450 Hull Road, within easy reach of the UF Hilton Conference Center Hotel and the Butterfly Rainforest at the Florida Museum of Natural History.

The event will feature a welcome by Center Co-directors Michael S. Okun, and Kelly D. Foote, M.D., and remarks by Dean Michael Good, M.D., and Maggy Hurchalla, an advocate in the fight against Parkinson’s disease and sister to former U.S. Attorney General Janet Reno, who will be an honorary guest at the opening.

The UF Movement Disorders team in front of the Orthopaedics and Sports Medicine Institute

With faculty from more than 10 colleges throughout the UF campus, the Center will offer true patient-centered care combined with interdisciplinary research in one location. Faculty and staff are urged to attend. After the opening ceremony, tours will be offered from noon to 3 p.m.

We will begin seeing patients at the new center on April 19th, 2011.
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April 30th, 2011 from 9AM-1PM, TRINITY UNITED METHODIST CHURCH, 4000 NW 53rd Avenue in Gainesville. Registration is requested, as lunch is provided to all who attend.

This educational seminar is FREE and OPEN to all Parkinson patients, family members, caregivers, and healthcare professionals. Please contact Amanda Eilers at 362-265-0111 x87388 to register or email Amanda at amanda.eilers@neurology.ufl.edu

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Rick Staab discusses the reasons for founding the new dystonia center

On February 21st, Tyler’s Hope for a Dystonia Cure and the University of Florida held a news conference to announce a new dystonia research center being formed at UF with a $1 million gift.

Along with clinical researchers at the existing Tyler’s Hope Center for Dystonia Care at UF’s Center for Movement Disorders and Neurorestoration, Dr. Yuqing Li will investigate causes and potential treatments for a malady that is not well-known outside of the dystonia community, even though it is the third most common movement disorder behind Parkinson’s disease and tremor.

Read the full UF Health Science Center article.

Read the Gainesville Sun article.

Okun’s presentation at 9 a.m. Friday will deal with the growing opportunity to provide relief through deep brain stimulation surgery to patients suffering from devastating psychiatric disorders, while being mindful of the earlier shortcomings of psychosurgery and the lessons from treating movement disorders.

He joined Drs. Delong, Greenberg, Mayberg, & Fins (also experts on deep brain stimulation from Emory, Brown & New York Presbyterian) to discuss “Scientific and Ethical Issues for the Surgical Treatment of Psychiatric Disorders”.

For more information on the whole UF contingent, read this article.

More information on Deep Brain Stimulation research at UF.

The introduction to the treatment of dystonia and spasticity with botulinum toxin is expected to be a successful symposium, providing guidelines for the diagnosis and management of dystonia and spasticity in the clinical practice.

 This program is specifically designed for physical therapists, occupational therapists, nurse practitioners, nurses, physician assistants, pharmacists and other healthcare professionals interested in the management of dystonia and spasticity.

A special thank you to Allergan for their generous support of this course.

Saturday, January 15, 2011       7AM – 3PM

  Hilton University of Florida Conference Center

Please visit www.cme.hsc.usf.edu  for full information and registration

Timing Results

Drs. Okun & Malaty

Start!

A lot of people from the Brain Institute ran

The Season of Hope Run will be held on December 11, 2010 and will benefit care, research, education and awareness for children and for adults with dystonia and Parkinson’s disease.

December 11, 2010  8-11AM   Hawthorne Trail in Gainesville

Register at http://www.bit.ly/dec11race

If you are interested in sponsorship or contributing research funds please read the below letter.

Season of Hope PDF Letter

Team Hope Walk- Gainesville, FL

November 20, 2010
Westside Park/Albert Ray Masse Park
1001 NW 34th Street
Gainesville, FL 32605

Pre- Registration: 8:30AM
Day of event registration: 9:30AM
Pre-Registration fee: $15
Day of Registration fee: $20

Dogs & kids are welcome

We encourage participants to come early. We will have breakfast (bagels & fruit) for participants.

For more information please contact:

Alex Roque

212-242-1968

Aroque@hdsa.org

or
Veena Shrestha
vshrestha@walkforhd.org

One was written by a student that works here at the UFMDC, Andrew Resnick, and specifically discusses emergency room encounters for patients with deep brain stimulators. The newest one, written by Dr. Swati Patel, from the University of Colorado – Denver, discusses PD patient needs when they are going to have surgery and be hospitalized. It is a pretty easy read compared to the typical academic article which is helpful when the author wants to express the information to a broader audience. Physicians are given specific advice regarding issues PD patients may have in the motor, pulmonary, gastrointestinal, cardiovascular, genitourinary, or cognitive areas and also with medication management. You can read it directly on the “The Hospitalist” website.

For more information on Tyler’s Hope or DYT-1 dystonia visit their website http://tylershope.org/.

for Patients, Caregivers, and Healthcare Providers

Sponsored by the University of Florida Parkinson’s Disease and Movement Disorders NPF Center of Excellence

Saturday, April 24th (8:30 AM – 2:00 PM)

The event is FREE and OPEN to all PD patients and their families, caregivers, health professionals or any other interested guests. Lunch will be provided.

Registration is requested but not required and can be done through Rachelle Stephen by calling 352-273-5566 or emailing rachelle.stephen@neurology.ufl.edu

The symposium will be held at:

Abiding Savior Lutheran Church (in the Fellowship Hall, Building 3)
9700 West Newberry Road
Gainesville, FL 32606-5545

(Note: you can enter the building using either a wheelchair ramp or stairs)

We plan to stream the video of the Symposium live (be aware there may be technical difficulties). The stream will appear on the UFMDC website on Saturday. If there are any technical difficulties we will aim to get the video posted to the site as quickly as possible after the symposium.

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We also hope to stream the talks live and record them for later posting. We are still working out the details on this however, so please stay tuned.

Katherine Castle, an Art for Life volunteer who also has Parkinson’s disease, said she doesn’t want to be defined by her disorder.

“I don’t want to be the artist with Parkinson’s disease — I just want to be the artist” she said. “Parkinson’s is part of me, but it’s not all of me.”

Int J Neurosci. 2009;119(12):2196-205.

Quetiapine improves visual hallucinations in Parkinson disease but not through normalization of sleep architecture: results from a double-blind clinical-polysomnography study.

Fernandez HH, Okun MS, Rodriguez RL, Malaty IA, Romrell J, Sun A, Wu SS, Pillarisetty S, Nyathappa A, Eisenschenk S.

Department of Neurology, College of Medicine, University of Florida, FL, USA.

Make a film telling us your story, or the story of a loved one, affected by a brain disorder. Help us make the case for why more brain research is needed to find cures.

Check the rules and contribute! The deadline is February 16th, 2010.

EDIT: We now have a page about our interdisciplinary Tourette’s treatment clinic

The UF Movement Disorders Center is excited to welcome, belated though it may be, Tetsuo Ashizawa, MD and S.H. Subramony, MD to the Movement Disorders team. They bring an expertise in ataxia and in Huntington’s disease to the table and are holding special clinics for these disorders. In addition to their work with the Movement Disorders Center, Dr. Ashizawa chairs the Department of Neurology while Dr. Subramony directs the Neuromuscular division.

If you have either ataxia or Huntington’s and would like an appointment or if you would like to refer a patient with these disorders please feel free to contact us via our web form or by phone (352-273-5550).

Int J Neurosci. 2009;119(11):2118-23.
Tracing the origin of L-2-hydroxyglutaric aciduria in a family.
Sass JO, Romrell JS, Vinson SY, Fernandez HH, Fischer J, Rodriguez RL, Okun MS.

Labor für Klinische Biochemie und Stoffwechsel, Zentrum für Kinder- und Jugendmedizin, Universitätsklinikum Freiburg, Mathildenstr. 1, 79106, Freiburg, Germany.

For more information, please contact Rachelle Stephen at rachelle.stephen@neurology.ufl.edu.

J Neurol. 2009 Oct 8. [Epub ahead of print]

The number and nature of emergency department encounters in patients with deep brain stimulators.

Resnick AS, Foote KD, Rodriguez RL, Malaty IA, Moll JL, Carden DL, Krock NE, Medley MM, Burdick A, Haq IU, Okun MS.
Department of Neurology, University of Florida, Gainesville, USA

Deep brain stimulation (DBS) has become an increasingly common modality for control of several neurological disorders such as Parkinson’s disease, dystonia, essential tremor (ET), and others. Our experience has demonstrated the need for emergency physicians to familiarize themselves with the potential complications of the DBS device as well as the device itself. Therefore, our aim in this paper was to elucidate the number and nature of DBS and non-DBS presentations to the emergency department (ED) and to educate and familiarize ED physicians about DBS devices and their potential complications. We also aimed to devise a simple protocol for DBS management so that all ED physicians would have access to the knowledge or referral capabilities when managing a DBS patient. The objective of the present study was to review the number and nature of ED encounters in patients with deep brain stimulation (DBS) devices implanted for movement and neuropsychiatric disorders. Methods: The series of encounters reviewed included 215 unique patients with DBS implantation who were identified using an IRB approved database and a paper chart review. Patients in the study included those implanted at University of Florida (UF), as well as those implanted at outside institutions, so long as they were followed at UF. The cohort included n = 215 DBS patients. 25.6% of all 215 patients presented to the ED at least once, with the most common presentation occurring as a result of a decline in mental status when taking into account all visits (6%). Reasons for presentation to the ED included neurological (54.6%), infections/hardware issues (27.9%), orthopedic/focal problems (10.5%), and medical issues (7%). In total, 29 patients arrived at the ED for DBS related issues (23.2%). Of those who presented to the ED (n = 55), the average age was 53.1 (range 10-80 years). Headache was the most common complaint within the neurological category (22.1%), followed by change in mental status (15.1%), and syncope (9.3%). When examining the data by ED diagnosis, change in mental status occurred most commonly in Parkinson’s disease (19.6%). Falls were most common in essential tremor (27.2%), and headache occurred most commonly in the dystonia group (52.1%). Across all diseases, mental status change was the most common indication for an ED encounter (6%). Parkinson disease patients most commonly presented with altered mental status (8%), essential tremor patients revealed a high preponderance of falls (6.5%), and dystonia patients tended to present with headache (7.1%). It was concluded that a large number of patients with DBS will present to the ED for many reasons, the majority of which will not be direct complications of their DBS device. Neurological issues were the most common chief complaint, with individual differences depending on the underlying disease. It is important for ED physicians to consider non-DBS related complaints in the presentation of these unique patients since these issues comprise the majority of the ED visits. However, when properly evaluating these patients, management of their DBS device, or referrals to neurosurgery and neurology, if necessary, are imperative. In addition to device management, regular ED standards of care should apply to this special cohort of patients.

The foundation demands that scientists share results and tools, and it closely monitors their work. But it also encourages them to take risks, devoting roughly $2-million a year to a rapid-response fund that gets money quickly into the hands of scientists who come up with new ideas.

In less than six weeks, a scientist can have the seed money to test out a hypothesis and see if it is worth pursuing. Most of the time, it doesn’t pan out, which is why government funding agencies prefer to support research that will lead to steady but incremental advances.

Read the whole interview here…

The new pages detail what is available at our Dystonia Center including information on becoming a patient, treatment options and details about our Dystonia team.

Check out the site here…

Together, the findings suggest that gene therapy to enable the brain to retain its ability to produce dopamine, a neurotransmitter that falls in critically short supply in Parkinson’s patients, could be safely attempted during earlier stages of the disease with an added likelihood of success.

…

“We have worked every day for 10 years to design a construct to the gene delivery vector that enhances the safety profile of gene transfer for Parkinson’s disease,” said Ronald Mandel, a professor of neuroscience at UF’s McKnight Brain Institute and the Powell Gene Therapy Center. “With that added measure of safety, we believe we can intervene with gene transfer in patients at earlier stages of the disease. We strongly believe that trials to save dopamine-producing connections in patients with Parkinson’s disease have failed because the therapy went into patients who were in the late stages of the disease and who had too few remaining dopamine-producing connections.”

…

“With this technique, you could adjust the therapy in the patient,” said Fredric P. Manfredsson, a postdoctoral associate in UF’s department of neuroscience. “That would be extremely helpful because no one is really certain yet what dosage is required for a protective effect in humans. The process is also much more sensitive than we had imagined it would be. GDNF production can be shut down completely with a dose of doxycycline that is much smaller than what is commonly prescribed.”

At our center, Dr. Sherrilene Classen and her team can advise patients and caregivers on what to consider.

We decided that participating in this event was important especially since a significant portion of our patients have different types of dystonia. Also, the general public and medical community needs to be more informed about it.

Through our account @UFMDC, we posted about 40 messages tagged with #dystonia. Together with the other tweeters #dystonia reached the number 38 position of most tweeted terms (or “trending topics”) for the whole day and it was #26 at around 4pm eastern. Dystonia sufferers posted their experiences while all of us posted educational links or news stories on dystonia. Many people learned about dystonia that day and dystonia patients made connections with each other.

The only organizations to participate were the DMRF, Tyler’s Hope and the UFMDC. We look forward to trying this again at some point and hopefully we can inform even more people about this disorder.

One mother’s walking miracle – By Rachel Sauer – Sunday, May 13, 2007

Excerpt:

“Please,” Viviana remembers pleading. “Please. We can’t do this anymore.”

Sharma called Dr. Michael Okun, a neurologist at Shands Hospital at the University of Florida in Gainesville, medical director of the National Parkinson Foundation and valedictorian of the Palm Beach Lakes High School class of 1989.

He agreed to see Chris.

“In most cases, the dystonia presents as the turning of a foot, say, and progresses very slowly over many years,” Okun explains. “But for unexplainable reasons, we have patients like Christopher who progress very fast.”

Axial images of subcortical structures in the A) T1-w 3D MP-RAGE, B) T2-w 3D FLAIR, C) T1-w FGATIR, and a Sagittal image D) T1-w FGATIR with deformable atlas contours overlaid. The contour colors for the deformable atlas are (from most anterior to most posterior): striatum (blue), GPe (green), anterior commissure (black), GPi (red), optic tract (yellow), thalamus (green), various VL thalamic nuclei (green), STN (red), and SNr (black).

Learn more about Deep Brain Stimulation surgery.

A growth factor used in clinical experiments to rescue dying brain cells in Parkinson patients may cause unwanted weight loss if delivered to specific areas of the brain, according to University of Florida researchers in the March online edition of Molecular Therapy.

The discovery is a cautionary warning for experimental treatments to treat Parkinson’s disease that use GDNF, short for glial line-derived neurotrophic growth factor.

In addition, the finding broadens understanding of the brain’s role in the regulation of metabolism and body weight, suggesting that gene therapy techniques in the brain potentially could control obesity.

Read the whole article here.

Doctors may be able to tailor a specialized form of brain surgery to more closely match the needs of Parkinson patients, according to results from the first large-scale effort to compare the two current target areas of deep brain stimulation surgery, or DBS.

Called the COMPARE Trial, the National Institutes of Health-funded study conducted at the University of Florida evaluated 45 patients for mood and cognitive changes related to DBS. UF investigators found that DBS in either brain target effectively treated motor symptoms such as tremors, stiffness and slowness. However, DBS also produced unique effects depending on the target location, especially in patients’ moods and mental sharpness.

For more information please check out the complete article.