Parkinson's Disease Tulip


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Old 09-20-2016, 10:35 AM #11
rempatterson rempatterson is offline
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I am at the conference now as I write this. Is there a meeting point and time?
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Old 09-21-2016, 02:38 AM #12
MaryS MaryS is offline
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I am at the conference now as I write this. Is there a meeting point and time?
I was able to make last minute plans to attend the conference and would appreciate the chance to meet anyone else attending from this forum. I don't have the ability yet to access the private message feature to contact anyone, so it would be great to hear on this thread how to get in touch with others from this forum who are there. Thanks!
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Old 09-22-2016, 12:28 AM #13
Parkinson Fit Parkinson Fit is offline
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Really enjoyed your book, Nan. Inspirational, and engaging. It also convinced me to add 3x stationary bike to my routine.

I was going to ask you a question, but there were too many others compelled to use the opportunity to make a statement. I found their stories interesting, and therapeutic, so I guess that's all good.

My question was going to be to ask about your decision to start Sinemet in 2014. Why did you wait so long? And what convinced you it was time?

- Brett
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Old 09-22-2016, 08:54 AM #14
Rachel Dolhun MD Rachel Dolhun MD is offline
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Default MJFF at WPC

The Michael J. Fox Foundation is also at World Parkinson Congress! Come meet our staff and learn about our resources and how you can get involved in research at Booth #407. You can also "Ask the Experts" (me -- Rachel Dolhun, MD, and Katie Kopil, PhD) your questions at our booth today between 12 and 130pm. Hope to see you there!
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Old 09-24-2016, 09:34 AM #15
dan1000 dan1000 is offline
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Just back from WPC2016, my first conference since diagnosis 6 months ago.

I found the conference very useful, particularly the poster sessions where researchers present their latest work. There is interesting work going on in many areas: vaccines, stem cells, regrowing neurons along pathways of currently-dead neurons, and so on.

It was also interesting to speak to so many people with PD, and to observe how they cope with the disease at its various stages.

The most frustrating thing was not being able to get into the roundtable talks I wanted to attend. There were many similarly frustrated people on the waiting lists. Those roundtables need to either be repeated or somehow opened up to larger numbers.

All in all, a great event. I will attend at least one more, and will be much more careful about early sign up to roundtables.

Dan
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Old 09-24-2016, 05:11 PM #16
Tupelo3 Tupelo3 is offline
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Originally Posted by dan1000 View Post
Just back from WPC2016, my first conference since diagnosis 6 months ago.

I found the conference very useful, particularly the poster sessions where researchers present their latest work. There is interesting work going on in many areas: vaccines, stem cells, regrowing neurons along pathways of currently-dead neurons, and so on.

It was also interesting to speak to so many people with PD, and to observe how they cope with the disease at its various stages.

The most frustrating thing was not being able to get into the roundtable talks I wanted to attend. There were many similarly frustrated people on the waiting lists. Those roundtables need to either be repeated or somehow opened up to larger numbers.

All in all, a great event. I will attend at least one more, and will be much more careful about early sign up to roundtables.

Dan
I agree with all of your insights, Dan. It's too bad we have to wait another 3 years for the 5th WPC 2019. Also, it will be in Kyoto, Japan, which will be a somewhat more difficult trip to put together.

Gary
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Old 09-24-2016, 05:17 PM #17
Tupelo3 Tupelo3 is offline
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Default Partners in Parkinson's

On another note, the final Partners in Parkinson's event will be held in NYC on Oct. 1st. Over 2,000 people have registered for the event. Although very different in design than WPC, it is equally as valuable for PWP. If you're in the NYC metropolitan area, try to make it. I will be on the panel for the closing session in the afternoon. If you're there, please come over and say hello!

Gary

Attend an Event | Partners in Parkinson’s
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Old 09-27-2016, 09:21 PM #18
Nan Cyclist Nan Cyclist is offline
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Originally Posted by Parkinson Fit View Post
Really enjoyed your book, Nan. Inspirational, and engaging. It also convinced me to add 3x stationary bike to my routine.

I was going to ask you a question, but there were too many others compelled to use the opportunity to make a statement. I found their stories interesting, and therapeutic, so I guess that's all good.

My question was going to be to ask about your decision to start Sinemet in 2014. Why did you wait so long? And what convinced you it was time?

- Brett
I had heard a lot of information about Sinemet that frightened me, especially that after starting it, you had about five years before developing diskensias. It turns out that's not necessarily true, but I didn't know that. Apparently the thing to be careful about is the amount of Sinemet you take. I'm told that 3,000/day is the magic num ER, but others on this forum are more knowledgable than I. I take 5 25/100 tablets per day, I.e. Only 500 units. I've experienced no dyskinesia. I was doing quite well on Dopamine Agonists for the first several years but then I developed side effects from each of them. I went to Baltimore, JH, and DC., NIH, and both doctors told me it was time for Sinemet. My doctor agreed and so it went and has worked well. This is another great benefit of being in clinical trials.
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