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FDA Reaches Out To Learn More On Those With Parkinson’s Disease

Yesterday, I had the honor and privilege of testifying in front of the United States Food and Drug Administration (FDA), about symptoms of Parkinson’s and how they impact daily living. The event brought out at least 20 or more of the FDA’s neurological specialists and decision makers. I watched as they listened to my fellow panelists testify about their struggles with Parkinson’s disease and many took copious notes about what was said.

A good day at the FDA!

A good day at the FDA!

I am confident that they were listening to the plights of those of us facing a variety of issues related to our illness. It is my sincere hope and plea that something positive, like an ongoing dialogue between FDA and patient, or even a rapid push for speedier development of therapies is implemented. It is encouraging and wonderful to see interest from the FDA and the Parkinson’s community. This can be nothing but positive and hopeful!

8 Tips That Could Save A Parkinson’s Disease Patient’s Life (or at least reduce severe injury)

1. Take the elevator and not the escalator! If you have balance issues, a hard dramatic fall is the last thing that you need to deal with–especially if you can avoid it.

2. It can be very easy to forget your meds or even take a double dose if you aren’t vigilant about your dosing. Keep a journal or daily dosing sheet.

3. St. John’s Wort, Kava kava,  and cold medicine products like, Dextromethorphan (contained in many over-the-counter cough medicines), may have severe side-effects. Check your packaging and the Web. This is not a medical website, so go to a medical site like www.webmd.com for the details. Read  your labels –especially on cold medicines.

4. Giving up the car keys is one of the hardest decisions that you will ever have to make! You don’t want to harm yourself but even more, you don’t want to hurt someone else. Be smart about when it is time to seek alternative transportation. It isn’t easy,  but you might just be saving many lives by relinquishing those keys! (See #8)

5. Stay out of the hospital as much as possible. If you have to–well—then you have to–but if you are choosing cosmetic surgery or any kind of surgery that isn’t totally necessary, consider avoiding the risk of the blade and anesthesia. Don’t tax your system more than you have to.

6. Limit your sun exposure, especially if you are on Parkinson’s meds. Eat your organic leafy greens to get your vitamin D and even dairy, but not too much direct sun–or dairy.

7. Monitor your stress, blood pressure, and sleep. They can all be related. Diet may play a factor as well. If you don’t have a home blood pressure monitor, you might consider picking one up on the web or your local drugstore. If you track it a few weeks before your next doctor visit, you can compare yours with the doctor’s reading.

8. In some States, telemedicine (doctor visits by Skype or camera/video programs) is becoming a reality that saves time, money, and travel. Ask your physician, Neurologist, or even local hospital if they have any kind of program that might work for you to be seen without being seen in the office.

Hey–I am Not a doctor (not that the money wouldn’t be nice and boy would my parents be proud). I’m just a guy with PD and a blog. If you like it, please share it with a friend. If you don’t like it, please share it with 2 or more friends.

This is not professional medical advice–it is my opinion from living with PD for over 25 years. Thanks for reading!  Join me on Twitter @asoftvoicepd

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