Living with Parkinson's Meetup - Q & A: August 2022

[@mariemorris7680]

Thanks everyone……this forum is priceless .

[@houchinsing4429]

Its good to come out with the experience each other have.

[@lisa8452]

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!

[@lili1740]

Thank you for posting this

[@anjaschwalen8700]

Thank you. This was very uplifting.

[@kaystokes977]

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❣

[@shuvroislam346]

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

[@nosilverbullet4pd998]

many thanks guys

[@loisbutler2729]

I really learn so much from your videos. You have wonderful support group. Thank you.

[@davisphinneyfdn]

Thank you, Lois. We're glad you found us!

[@splashesin8]

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.

[@ninanguyen4002]

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 😊

[@ellenkramer9532]

Voice!! AND all that!

[@iamjustonemom1950]

ALINKER walking trike, foldable & light.

[@charlotteholloway9961]

Drooling

[@cathy5119]

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

[@Shakyvanguy]

My wife and I watched your most recent video Awesome. I take my 2-25/100 pills on average every 4 hours but as you share lots of variables 900 pills for 3 months

[@kaystokes977]

All of the above

[@binascraps2084]

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.

[@margemontgomery3411]

Freezing

[@pattirossiter1065]

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]

This is a great tip! Thanks for sharing! Under-bed lights are available at various places online and at many hardware stores.

[@robbingregson2286]

There is no getting better with Parkinson’s. It will hunt you down !

[@binascraps2084]

Falling is crappy and scary I've fallen so much Ugh

[@andrewlaquer7757]

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

[@SuzanneJenkins-rc6ur]

Falling

[@annekecor1108]

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?

[@jennielopez8191]

I have fallin and now im a fall risk

[@belindaw5849]

Do you find that you catch everything that you come in contact with? I never used to catch everything but I do now. I haven't driven in a long time and I miss it because it seems like no one wants to take me anywhere anymore and it is so lonely. Have you all had to have the DAT test to be diagnosed or were you diagnosed another way?

[@davisphinneyfdn]

Thanks for your comment. The immune system can be impacted by Parkinson's, and some people do report changes in how often they get sick, but it can be tough to distinguish whether this is caused by Parkinson's or some other factor. Many people with Parkinson's have disruptions to their sleep, and poor rest may be a factor in getting sick more often. Some of the panelists have had DaTscans, and others have not. Note, though, that a DaTscan can be helpful in forming a diagnosis, but every Parkinson's diagnosis is based primarily on a care provider's clinical observation of a person's symptoms. A DaTscan is ordered to help when the clinical signs are not especially clear. Here is more about DaTscans, from our blog: davisphinneyfoundation.org/datscan/

[@belindaw5849]

@@davisphinneyfdn thank you for answering my questions. I wasn't sure they would get answered so means a lot.

[@cdp6896]

I would love to communicate with Kat about traveling with PD. We were snowbirds NY to Florida for the last 8 yrs..

[@justincase4254]

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

[@almaford8281]

/how to help. With freezing

[@arturomaya3915]

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

[@arturomaya3915]

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]

Hi 11:22 ❤

[@gregjennings8486]

I would like to meet a nice lady with EOPD. I’m Australian. 64, widowed. Single. Travel food fishing painting.

[@jennielopez8191]

what, can I d0 about distonia i hava parkson and msn

[@Shakyvanguy]

#shakyvanguy

[@angelakindon6061]

Tremors and constipation.

[@rebeccarosenlum1798]

Tremors? When I had DBS in January, the tremors disappeared.