The Embarrassing Side of Parkinson's

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Davis Phinney Foundation for Parkinson's

Күн бұрын

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Kat Hill and Kevin Kwok openly discuss how they've managed feelings of embarrassment and shame surrounding their Parkinson's.
0:00 - Introduction
1:07 - Physical symptoms
3:19 - Communication difficulties
5:40 - Self-worth
6:40 - Focusing on what you’re better at
10:09 - Asking for help
12:15 - Drooling
13:26 - Shame around impulse control symptoms
15:10 - Moving from shame to acceptance
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Пікірлер: 39

@lesliwilliamson42 2 жыл бұрын

Dear Kevin and Kat, I can't thank you enough for being willing to share your Parkinson's struggles. I want nothing more than to know how to understand, support and have compassion for my dear friend with Parkinson's. The world is a much better place with both of you in it. Your bravery and shared embarassment is a huge gift to us all, so keep flipping' us off and laughing all the way! Love you lots. Les

@suziquestionable2845 2 жыл бұрын

Same here!! My best childhood friend has Parkinson's disorder and l've arranged to speak with her over the phone every Sunday. We used to only contact each other on our birthday, once a year. Now more communication is wanted and needed, so l will make a commitment to contact my dear friend, Wendy every week. Life is full of surprises, some not so good.

@StaverMarilyn 6 күн бұрын

What a great interview! Thanks! 🕺💃🏻🎶

@StaverMarilyn 6 күн бұрын

Bless you all! 💕🎶

@wendyneill6689 Жыл бұрын

Two wonderful people, loved to hear your conversation. Thank you so much both you dear people😊

@StaverMarilyn 6 күн бұрын

I had to revisit... I used to have a hard time asking anyone for help. But now I see, by allowing someone to help you gives them a blessing. Just a thought...

@TheOriginalKilamanjaro 2 ай бұрын

Thank you all for your talks. My mind has so much trouble with PD, (rigidity one)I have to think of each step of every chore. The exhaustion from it causes me alot of physical & mental pain. Which then causes my anger issues to exale. Bathroom issues make it nerve wracking to go anywhere. I have a hard time asking for help too.

@davisphinneyfdn 2 ай бұрын

Thanks for sharing your perspective. You point to an under-recognized aspect of Parkinson's: the variety of impacts Parkinson's can have and how this can make it hard to even know where to turn for help. Tracking your experience and planning ahead for visits with your care team to make sure you prioritize the right issues at your visits might help. We have worksheets, checklists, and other tools that aim to make this easier: davisphinneyfoundation.org/every-victory-counts-manual/online-content/worksheets/

@antondelacruz9362 Жыл бұрын

Embarrassing and humiliating. Went from near top of the class with no effort to failing easy classes and being unable to understand new ideas without lots of repetition. Case in point it has taken me 40 minutes to write this cause i couldnt figure the best way to convey my point.

@brittfinley7796 Жыл бұрын

Thank you for this candor and courage in detailing your victories. Very useful

@maryrichter3100 3 ай бұрын

Thanks so much for this video. This has helped me understanding this is real and not in my, head.

@davisphinneyfdn 3 ай бұрын

Thanks for your comment. We are glad you found this video helpful.

@allenjadeching9819 2 жыл бұрын

Thank you for these insights. I was diagnosed with PD 2 years ago and there's a lot that makes me scared, one of it is the embarrassment from the signs and symptoms that I might have "tomorrow". Listening to Kevin and Kat gave me that inner strength saying " I can survive PD". Thank you.

@sharoncribbs7516 Жыл бұрын

Kevin and Kat, Thank you for sharing. I love your positive attitude and humor. Going into my second year after diagnosed. I need to work on those things.

@julianpenny4671 Жыл бұрын

Two outstanding people, so happy to have observed and been inspired by them . Thankyou 😎

@batiaklass3146 Жыл бұрын

זסיסמה

@joannashelton3253 Жыл бұрын

i too take issue with “adult-proof” lids on meds. our magnetic knife rack also holds my needle nosed pliers (to concentrate my waning grip)

@gloriamaryhaywood2217 4 ай бұрын

Both of these people are such well spoken about what they have and are experiencing in dealing with Parkinson's disease!! Lovely human beings who show such respect and support. My brother has Parkinson's. Along with the shaking that is a side-effect of his manic/depressive medication. He shuffles instead of a true walk, and has a mask face and very slowed and slurred speech most times. His movements are also extremely slow. He is also showing signs of dementia.💔

@bethroundell8424 2 ай бұрын

Diagnosis 18 mos ago, confirmed 1 yr ago. My adult children have just moved along with my new limits. Ive had vertigo, dizziness, fear of falling for many years. It was a matter of finding out what else was coming along as added hazards. Adding more funny mishaps to life. So we decided we were going to laugh at the dizzie loopy wobbly grandma. It was our first idea in coping.

@davisphinneyfdn 2 ай бұрын

Finding and embracing humor can be a good strategy. Keep smiling, but be sure to take steps to minimize fall risk, too! Dizziness and balance issues can be especially risky. Having a home visit with an occupational therapist can help decrease fall risks at home.

@mayannjudithmaske6456 3 ай бұрын

i was diagnosed 2004, im 43 that time

@clausdnk5163 2 жыл бұрын

Love this!

@mikehill6743 Жыл бұрын

I am taking the DAT test this week to see what is going on in my brain, but my neurologist thinks that I have Parkinson's and the Carbadopa Levodopta has been helping. Watching you share your experiences has been a great help at this point when I'm trying to figure it all out for myself. Thanks so much!

@timblock3483 Жыл бұрын

My friend noticed the musky smell years ago.

@mayannjudithmaske6456 3 ай бұрын

i work at a convenience store, i have tremor and a customer thought i want to dance, and he said i like that you are dancing while attending to customers, its embarrassing and the more i shake when i know they can see whats happening, someone ask do you want to go to restroom? sometimes they thought im cold

@davisphinneyfdn 3 ай бұрын

Tremor and other symptoms can definitely be embarrassing, and people noticing can just make them worse. Some people tell us that it helped for them to find ways to casually reference that they have Parkinson's, but this is not always feel feasible or safe.

@rexwhite7803 2 жыл бұрын

I found that very useful, and reassuring..It’s good to be reminded you are not alone

@toryberch 2 жыл бұрын

Does anyone notice their temperament changing, not being near as patient? I can't tell if it's Parkinson's or hormones ha ha

@sharoncribbs7516 Жыл бұрын

Yes, I definitely don't have as much patience and the fatigue and apathy sure don't help.

@toryberch Жыл бұрын

@@sharoncribbs7516 Yes Ma'am it sure doesn't 😳☹️🌼🌼

@petermay6332 Жыл бұрын

I get embarrassed at my emotional lability lately, I find myself weeping at the sound of beautiful music for example, or just when describing a meaningful experience. Is this just me getting old and soppy, or is it my PD? Anyone else got the same issue? Great discussion, Kevin and Kat! Thanks!

@davisphinneyfdn Жыл бұрын

Thanks for watching, Peter. I don't think you are alone in that. I will bring it up during our next Living with Parkinson's Meetup on January 19. You can register for that here if you aren't already: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/

@petermay6332 Жыл бұрын

Thanks for the link. I've registered for Webinars and will join you on 19th Jan. I have gone back over the past discussions and they are like gold dust! Really excellent advice and personal anecdotes which resonate strongly with my experience. Well-balanced panel, magic number of ten people, and the mutual support and affection shines through. I'm a DPF convert!

@steve1750 5 ай бұрын

Same Peter I get a bit teary, never been like that, always been hard, but still empathetic.

@luanndavis-jindela3223 2 жыл бұрын

Helpful as a newly diagnosed pwp.

@Bright-It Жыл бұрын

Stop saying it is embarrassment, it is a new reality. We all will face changes throughout life.

@susanferguson8734 12 күн бұрын

No one should be ashamed about an illness. Please dont go there. Are we supposed to be ostracized for leprosy embarassed by cancer? WHY??

@davisphinneyfdn 9 күн бұрын

Thanks for your comment and for encouraging people not to feel embarrassment or shame about a health issue. Many people do still experience embarrassment and shame about cancer, Parkinson's, and other health conditions, regardless of whether they SHOULD. One reason we share this video is to help people see that tif they have these experiences, they aren't alone. Feeling isolated can add another layer to the difficulty of feeling embarrassment and shame.