Sleep and Parkinson's Webinar

Dr. Soania Mathur and Dr. Ronald Postuma discuss sleep and Parkinson's.

[mariayoung]

I learned a great deal about traveling with Parkinson
The show is fun to watch.

[cindyjones]

10:24 just go with it i wish the public and family would understand this

[cindyjones]

Start at 5:25. Ive been having symptoms for 11 years now. Ms and parkinsons have both been mentioned over the years but now Im getting worse, so whatever it is is progressing

[leaveittolefty]

coffee effect has changed for me. i can drink a strong cup of coffee in morn and suddenly fall asleep about an hour later reading the news. never makes me alert or jittery

[waleedismail]

Thank you for the good-time Parkinson’s education

[Dondofemru]

Thank you, very clear and informative.

[ahc]

I’ve been taking the Klozanapan...? Sorry don’t have my bottle near me. I hate sleep time. The GP informed me that this is extremely addictive and he will not repeat it. I sleep very short periods of time and have been doing so for at least 10 years. It was hard to work because I’d fall asleep at the office. I am retired so that helps. I have nightmares, yelling, hitting... I knew there was something wrong for many years. No diagnosis until a partial diagnosis a week ago. Unfortunately since Covid takes over our hospital it is so hard to see a doctor. Now I’m "waiting" for the process of elimination to confirm no other issue is causing the problem. I am so anxious to get these tests completed. I want to get on the road to recover. I always know it is coming on. I do stop immediately and lay down. If I don’t I know i will be knocked out. It has happened on several occasions. I fight depression by being in close contact with friends. I make sure that I go out and walk for about an hour. My limit. Then I get home and finally fall asleep. I stopped coffee after 4PM. I am angry that Covid limits me from professional care. I have 4 pills left. They helped reduce my tremors and my nightmares do not bother me as much. I kick and hit my husband but he will not sleep apart because he is afraid for me. We are getting a lower bed. Cleaning off my night table because I knit and I have possible weapons. It is over whelming when you realize that there is so much to do. That thing you mention about REM Sleep disorder shocks me. It was my most obvious thing. I would love to get on a trial. My grandmother had PD. And my mother much later. I think I have more symptoms and stronger that my mom or grandmother. This is a discouraging video on one hand but so informative, thank you.

[toryberch]

Dr Mathur, if you read this how do you manage your restless leg syndrome medication wise? This is a new onset for me an it's extremely hard to deal with physically and mentally

[cindyjones]

I do lunesta, seroquel, and lorazepam. It took 4 years to find this combo. Tried everything under the sun. You have to be careful when more than 1. For example, i start off with half. I have also tried cbd. Not just 1 medicine works by itself. My brain is like a puzzle. I hope someone else finds this helpful

[joe]

These videos are great - but is there any way there any possibility of a program of short, clear and focussed videos could be developed to help newly diagnosed people - there's a zillion unorganised hour to 90+ minute videos out there. It is hard to know where to start and limited time. A set of 20-minute videos would be great. Happy to share my personal struggles with this.