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TWO VERY DIFFERENT PD EXPERIENCES

 

 

I saw both sides of the PD care coin today. A caregiver new to Tampa Bay asked my advice on finding a Mobility Disease Specialist for his wife with offices close to their home. Apparently, he got my name from my PDF Research  Advocate business card.

 

He  lives in Sun City Center, midway between Tampa and Sarasota. I was of little help on the specialist, except to refer him for advice to the USF Center for Parkinson’s Disease and Movement Disorders.

 

But I was able to tell him about the extraordinary Parkinson Center 30 minutes down I-75 in Sarasota. I spent time there today. It lives up to its billing. Airy, light, open space. Plenty to read and do. Some type of educational, social, recreational or support activity every day. Colorful, computer-generated prints with a Florida motif on the walls done by 80-something, Center member Joyce Novak. As I wrote earlier, it is the kind of one-stop, continuing care facility that we need in many places but have in very, very few.

 

 

TELL THE FDA ABOUT YOUR SYMPTOMS

 

The FDA wants to hear from PWP and caregivers about their stories. Probably most of you will do so by email. You can participate in the Food and Drug Administration (FDA) Patient-Focused Drug Development Meeting on Parkinson’s disease on September 22, 2015.

 

You may attend the meeting in person at the FDA headquarters in Silver Spring, MD, online via webcast, and by providing the FDA with feedback during a public comment period.

Learn more about the meeting, how you can help let others know about the meeting, and register at http://ParkinsonsAction.org. That’s where you can provide answers to written questions. I did so in fewer than 30 minutes.

 

USEFUL INSIGHTS ABOUT FATIGUE

 

This recent PDF Explainer has excellent information about a symptom that is so troublesome for many of us: fatigue

 

http://blog.pdf.org/2015/08/12/you-asked-were-answering-fatigue-in-pd/

 

DO WE REALLY NEED EIGHT GLASSES OF WATER A DAY?

 

The hardest doctor’s recommendation for me to follow for my PD is drinking eight glasses of water a day. This New York Times piece casts doubt on that guideline. I found it comforting but not convincing enough to win an argument with my MDS Robert Hauser and his strong-minded PA, Kelly Tehan.

 

http://www.nytimes.com/2015/08/25/upshot/no-you-do-not-have-to-drink-8-glasses-of-water-a-day.html?emc=edit_au_20150824&nl=afternoonupdate&nlid=52114048&_r=0&abt=0002&abg=0

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