Living With Parkinson's Meetup: November 2023 - Q&A
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- čas přidán 14. 07. 2024
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In this month’s meetup, the panelists answered questions from the audience. Topics included driving, home modifications, dopamine agonists, swallowing issues, dystonia and much more. As always, this panel doesn’t hold back, and we’re so fortunate to have them tell the hard truth and share their journeys with all of us.
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0:00 - Introduction
0:52 - What do you look for when finding a new neurologist?
11:33 - How do you navigate medications and dosing, when there are so many options?
15:27 - What is your experience starting a medication as soon as possible or waiting to start?
17:26 - What do you know about dopamine agonists and withdrawal from those medications?
21:55 - How can I increase safety for myself or the person I am caring for?
29:49 - What are good exercises for swallowing?
33:30 - How can playing music and singing help?
35:03 - How do you handle nausea and waking? What do you do to get going in the morning? What do you do about difficulty falling and staying asleep?
43:42 - What do you know about DBS and dystonia?
47:52 - What are your tips for anxiety during OFF time?
51:18 - What is helpful for legs that do not want to move?
54:50 - Conclusion
Ditto!!!!!!
😊
❤ I'm with you Heather too. You all are fabulous ❣
Puck Farkinson's I'm with you. Heather. 80 yrs old PD for 10+ years.
Thanks for your comment! We got a kick out of Heather's shirt, too!
😄
I'm going to get a get a tshirt with Puck Farkinsons on it :)
Diagnosed IN NOVEMBER 2022
Let me know if you want to talk. I am 6 years in 45 and am happy to give you some light
😂😂😂 Heather your so funny. Thank you😊
immediately and i am constantly so groggy I don’t really know when I am on or off but there has been very little time I am not having symptoms!
Thanks for your comment. Poorly managed symptoms can be very frustrating and painful. We hope you can find a treatment regimen with your doctor that improves your ON time. Let us know at blog@dpf.org if we can help.
Kevin, I have been trying to figure out the dystonia for a long time, (fifteen years) turning over several hypotheses. Trying to rule out red herrings. It's still a mystery but green potatoes still is partly stuck in my mind, not completely ruled out, however another think unrelated to potassium, potatoes, copper overload, but a latency in acetylcholinesterase. Something not bridging the gap between my "points & plugs." So instead of the steady release chaser following acetylcholine, something blocks the acetylcholinesterase. Several hours later, its like it releases several blocked hits of it all in rapid succession which creates uncontrollable sleep, with an electrical sensation in my tongue and back and extremities, while all the rigid muscles and recent dystonic muscles at last relax, and I cannot maintain consciousness. I can wake up sooner from it if I don't try to fight it, and put myself in a safe area. If I fight the losing battle to stay awake, it can take hours to wake up sufficiently enough to safely navigate out. If I don't fight it, I only end up being knocked out for 15-30 minutes but it seems like it has been longer than it was. I have also considered fluoride and manganese overload, from the tap water. I try to keep in mind that correlation is not automatically cause. The idea of longstanding Parkinson's just kicking up its progression never entered my mind. As a child it did, when I recognized elderly people who shook like I did, sometimes, and they explained it was Parkinson's. Tremors would come and go with no way to explain. It's the dystonia I find most debilitating and the wrecked sleep.
Dystonia is a big challenge. Thanks for sharing your thoughts and experience with us.