Living with Parkinson's Meetup - Q & A: August 2022
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In this monthly "Living with Parkinson's Meetup" conversation, panelists discuss questions from the live webinar audience addressing topics including: difficulties managing body temperature in hot weather, falling and balance issues, the impact of stress on their symptoms, the loss of friendships after diagnosis, handling the constant question "how are you?" from friends and family, and much more. To jump to a specific question, see the time stamps below.
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0:00 - Introduction
4:58 - Difficulty in hot weather (body temperature dysregulation)
11:32 - Falling and balance issues
21:25 - Stress, anxiety and Parkinson’s symptoms
36:20 - Handling the loss of friendships post diagnosis
46:37 - Handling the question, “how are you?”
Пікірлер: 37
Thanks everyone……this forum is priceless .
@houchinsing4429
Жыл бұрын
Its good to come out with the experience each other have.
Heather you make me laugh. I would love to meet you. Your so Knowledgeable and have answers to my thoughts. Thank you❣ Thank you All❣
Freezing
Few years back I had to attend a friend's father almost everyday at a hospital who had pd and I thought it was only the tremor these patients have. Later I saw the legendary boxer Mohammed Ali on tv as having same kind of tremor. But I had very little knowledge about it except for getting weaker and weaker, that's all. But recently I'm watching your video and learning deeply about it. Its really helping me to understand. Thanks a lot
Thank you. This was very uplifting.
I always ready 2 wet hand towel inside the freezer, anytime i fill heather , i but towel on my back neck and head it help relax keep the temperature down 😊
Thank you for posting this
I fell so hard my heart stopped! I have since moved to a new place.....no carpet and much smaller. The EMT was the one who administered CPR and brought me back to life!
many thanks guys
I really learn so much from your videos. You have wonderful support group. Thank you.
@davisphinneyfdn
Жыл бұрын
Thank you, Lois. We're glad you found us!
I keep writing too much, and then just cutting and pasting the whole thing in notes. 😅😂 I need to choreograph a shower. It now takes me six hours to make myself presentable.
Voice!! AND all that!
Drooling
I have a cooling pillow case by BROOkSTONE. I am more comfortable with my head on a cool pillow case. Bed sheets are available. We need to find a manufacturer to use the material for clothes. Ultraviolet protective clothing and hats are available. I spray my face and body with GEORGE ‘S ALOE SPRAY MISTER. Also, cool packs sold for injuries can be refrigerated and PLACED around YOUR neck THE WAY YOU MIGHT PLACE A SKARF. To minimize struggles when adjusting positions and unnecessary energy experienced when turning over please try a SNOOZLE. A lovely slippery fabric cut and sewn in just the right way to make turning over in bed EASY. YOU WILL MAKE THE MICROMOVEMENTS WHILE SLEEPING ! With cooling thoughts, Cathy
There is no getting better with Parkinson’s. It will hunt you down !
All of the above
Falling
Thank you for the Sharing you do here. It’s like you really care if you really do care if you really do care geez I wish I could get this right my stupid talk to text just doesn’t work right so if you’re seeing this and you read it you thinking I don’t understand this woman what she saying I’m sorry because that’s all this talk to text. Somebody can give me another app that would work better that would be great but yeah for right now I was talk to text. I have to say that you guys are the best I love you guys and you don’t know that because you don’t know me but yes I do love you guys I love all the things that you have helped me with so far other things as you continue to help me with even though you don’t know that you’re doing that but that’s what you’re doing please keep it up.
My husband installed A LED light strip to the bottom board of our bed. It is motion activated. As soon as my legs leave the bed, the light comes on and I have no problem getting to the bathroom. You can adjust the amount of time it stays on.
@davisphinneyfdn
4 ай бұрын
This is a great tip! Thanks for sharing! Under-bed lights are available at various places online and at many hardware stores.
Has anyone run into issues when they apply for a Real ID drivers license renewal in California? In the new application they ask if you have Parkinson's. Then my Neurologist insisted that I was going to "freeze up" and then reports you to the State and they Suspended my drivers license
Falling is crappy and scary I've fallen so much Ugh
What is the easiest way to get in and out of bed???? My husband is having a lot of difficulty because of rigidity. Even the bed rail doesn't seem to be enough. We ordered a small step to hopefully him?
I have fallin and now im a fall risk
I would love to communicate with Kat about traveling with PD. We were snowbirds NY to Florida for the last 8 yrs..
/how to help. With freezing
Do you ever want to say “the hell with it” I’m not suicidal by the way I am concerned about my future quality of life
When I go down I feel in the same with somebody push me and sometimes it's hard to stop when I go down by the same with somebody push me is I feeling
@gordonsafran4023
Жыл бұрын
Hi 11:22 ❤
Hi good morning I have Parkinson I go I go I go down sometimes but I feeling the same with somebody push me and like I can stop and my balance I need my balance I I don't know it's normal the parking shop but I go I go faster the single where I feeling this I go down with the same without somebody push me I can stop and sometimes I take it off the wall in my house anyway
what, can I d0 about distonia i hava parkson and msn
I would like to meet a nice lady with EOPD. I’m Australian. 64, widowed. Single. Travel food fishing painting.
Tremors and constipation.
@rebeccarosenlum1798
Жыл бұрын
Tremors? When I had DBS in January, the tremors disappeared.