Living with Parkinson's Meetup: Ableism, Enables, and Audience Q & A: September 2022

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In this Living with Parkinson's Meetup, panelists discuss ableism and enableism, that is feeling capable and "able" to continue living as independently as possible, but also accepting and asking for help when it is needed. Other topics include, how to get past the fear of letting your symptoms show, dealing with anger and sadness when you're unable to do something, and more. See specific chapters below.
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0:00 - Introduction
14:45 - Ableism and Enableism
25:00 - Being afraid to let your symptoms show
33:00 - How do you handle anger and sadness?
43:33 - Finger Dystonia
45:02 - Dyskinesia at the dentist
46:02 - Cushions to make sleeping more comfortable
46:55 - When to stop driving
49:50 - Racing mind & getting to sleep
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Find the transcript, show notes, and more for this Meetup here: davisphinneyfoundation.org/web...
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Want to sign up for our Living with Parkinson's Meetup? Click this link! davisphinneyfoundation.org/ev...
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Visit www.dpf.org for additional resources, live events, and to find one of our many ambassadors all around the country who are there to talk to you

[@petersellmer9492]

It has taken me a long time to find this site and i am so glad to find you guys today. Thank you so much for lots of information. Im Dianne and i was diagnosed 4 to 5 years ago. Neurologist last spring said i'm in stage 3. I plan to increase exercise from now on.

[@davisphinneyfdn]

That's great, Dianne!

[@splashesin8]

There were so many good things to just feel the moral support on here in today's upload. The ableism and when things are just overwhelming. I was grabbing a giant ball of yarn when my hands would do that spasticity thing, for relief but then I heard Victor Wooten talking about using a face towel or wash cloth, just sort of wadding it up in his hand to get quick relief. My feet were interfering with sleep last night and my legs. The compartment syndrome feeling in my legs like muscles are trying to implode the bones, and I wall and furniture walked trying to drink milk which helps a little and a cod liver oil gel cap and magnesium and B12. It happened again a few hours later with my toes going full on Babinski excruciatingly. Again, stood up with my chair that I use as a walker trying to drink more water. I can't help but think of the Babushka Kate Bush song, and went into the rhythm of it which quelled the foot and hands spasticity again. Woke up about six times dealing with that, but at least my torso remained relaxed and did not do the rigidity thing. I had hiked out for milk because of the compartment spasticity happening the night before as well. I had been completely out and it's an emergency item for controlling that syndrome. There had been one lone bottle of gatorade to get me through the previous night. Ironically on my quest to get milk before the store closed I just didn't think to eat and took just some water in the empty gatorade bottle for the hike. I had used Earth Wind and Fire to get dressed and out the door! I realize I should've probably downed some of the milk as soon as I got outside the store before pushing the chair home. I just thought I would be home sooner and have it at home and eat something. I did remember to grab the emergency salty item before checking out. The cognition factor still got me a little.

[@sherrymargolis2922]

I dd get 😮😮😮😮😮😮😮😮😮😮😮 Egxcersises for Parkinson's postural D S

[@splashesin8]

Omigoodness finally I'm hearing a person talking about hives! Every 36 hours, or every time I take my socks and shoes off, or am drying off after a shower. I don't like taking antihistamine but just have to when anaphylactic shock is rapidly coming on. I keep cleaning even vertical surfaces wondering if I'm transferring stuff from outside onto cabinets I'm leaning against, or what! I've tried changing the laundry soap, I've noticed it seems to coincide with when our water department switches lakes to the one with the stronger smell. Both our tap water sources have a lot of algae bloom, and way extra manganese and fluoride. However one lake seems harder to take. I started wondering if it's a water treatment gone a little too far. I am more allergic to sulphur than I used to be, but this hive thing happens when I'm not smelling sulphur, and they are clearly using chlorine, and charcoal. However I don't come out of the pool wildly itching, like I do after coming out of the shower. It's driving me nuts. I have started wondering if it's just another neural weird thing that can pop up. So, it's a relief to hear Robin mention the hives situation.

[@racheltevaseu6508]

YOPD SINCE 2012...greatest joy,feeling a lot better and healthier after diet and exercise , challenge:still finding DBS SWEET SPOT....

[@johnshellsykes8765]

What happen when you get sickness and diarrhea

[@binascraps2084]

It great 😊

[@marycain5668]

Well I'm in denial about this PD. The primary neurologist I went to see refuse to even discuss my diagnosis with me! Never gave me a clue! Just to let you know I only found out through my doctor because the notes for her visit were directly sent to my doctor but not to me directly! That was my introduction to this wonderful movement that you so call PD. And that same neurologist failed when I was in her office to get me directly to the ER when my pulse was 40 so I don't believe a word she said that's where my premise comes from. This is a good resource for me to see how responsive Davis Finney is because this site has been up for a month and no one has even answered any of the comments down below! Someone is not doing something. My theory is that while exercise is a phenomenal piece and it's been proven to help improve your life, my personal feeling is not to be involved in the Parkinson's groups at all live your life as everybody else is living it and not to include yourself in that simply because you hear all the complaints and the difficulties and the challenges and you're attracting more of them to you. I did go to one meeting and it was eye-opening 👁️👁️ And not in a good way. So good luck to everyone I hope you get the answers you're looking for.

[@davisphinneyfdn]

Hi Mary - I'm sorry you have had a bad experience. That sounds like an awful way to learn of your diagnosis. Everyone does experience Parkinson's differently. Some love being part of the community and make many friends from being involved. Others choose not to engage at all. There's no one way for sure. I hope you are able to get the best care possible.

[@PrincessMimi214]

I'm 38 years old with PD. I want to be a part of this panel

[@rajgupta3601]

How could i hook up with Davis phiney foundation group

[@poonamagarwal6213]

Is there test available i have been suffering from Parkinson since 2007

[@davisphinneyfdn]

Hi! Further information about the driving test discussed in the video is available here: davisphinneyfoundation.org/how-long-can-i-keep-driving-if-i-have-parkinsons/

[@cdp6896]

Tom, how do I find recumbent riders?

[@florencedavies5359]

Hi my name is Florence. I am three months post DBS surgery. Is any of you familiar with life after DBS. What to expect

[@sherrymargolis2922]

R😮😮 I will see you 😊😊 😢

[@sherrymargolis2922]

🎉🎉p🎉

[@welshmountainsoap9474]

No helpnìñ uķ