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
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.
Congratulations both of you!! I have PD for 14 years and I learned to laugh to most of my symptoms and ask for help, sometimes people think I had a stroke because I can't open my right hand and I say smiling oh no thanks God is just Parkinson!! Accept the things you can't change that was my first step, then try to do as much as I can with what is left of my previous life, good attitude and optimism. I pray a lot that a cure can be found, also to be strong enough and gratitude helps a lot. I don't want to see my family and friends sad because of my illness.
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.
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.💔
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.
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.
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/
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.
Thank you l have so much to be grateful for but at the same time I am afraid. You are so right about what people don’t see and sometimes we don’t understand ourselves. I am so afraid of making an idiot of myself. Thank you for clarifying so much for me ❤️
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...
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!
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.
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.
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!
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/
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!
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
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.
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.
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
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.
Thank you so very much for your candidness and your willingness to share your experiences! I am always blessed to hear from you both!
Congratulations both of you!! I have PD for 14 years and I learned to laugh to most of my symptoms and ask for help, sometimes people think I had a stroke because I can't open my right hand and I say smiling oh no thanks God is just Parkinson!! Accept the things you can't change that was my first step, then try to do as much as I can with what is left of my previous life, good attitude and optimism. I pray a lot that a cure can be found, also to be strong enough and gratitude helps a lot. I don't want to see my family and friends sad because of my illness.
Two wonderful people, loved to hear your conversation. Thank you so much both you dear people😊
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.
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.💔
Thank you for this candor and courage in detailing your victories. Very useful
Two outstanding people, so happy to have observed and been inspired by them . Thankyou 😎
זסיסמה
Bless you all! 💕🎶
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.
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.
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/
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.
Thank you l have so much to be grateful for but at the same time I am afraid. You are so right about what people don’t see and sometimes we don’t understand ourselves. I am so afraid of making an idiot of myself. Thank you for clarifying so much for me ❤️
What a great interview! Thanks! 🕺💃🏻🎶
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...
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!
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)
Thanks so much for this video. This has helped me understanding this is real and not in my, head.
Thanks for your comment. We are glad you found this video helpful.
I found that very useful, and reassuring..It’s good to be reminded you are not alone
Love this!
Tory I have found my mood can change at the drop of a hat. Because I can’t explain why it’s embarrassing I seem to be apologising so much.
i was diagnosed 2004, im 43 that time
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.
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.
My friend noticed the musky smell years ago.
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!
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/
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!
Same Peter I get a bit teary, never been like that, always been hard, but still empathetic.
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
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.
Stop saying it is embarrassment,
it is a new reality.
We all will face changes throughout life.
Does anyone notice their temperament changing, not being near as patient?
I can't tell if it's Parkinson's or hormones ha ha
Yes, I definitely don't have as much patience and the fatigue and apathy sure don't help.
@@sharoncribbs7516 Yes Ma'am it sure doesn't 😳☹️🌼🌼
Helpful as a newly diagnosed pwp.
No one should be ashamed about an illness. Please dont go there. Are we supposed to be ostracized for leprosy embarassed by cancer? WHY??
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.