Greetings from Kent, in the UK. Excellent session Kevin, you're an inspiration! Having lived with my PD diagnosis since 2008 I'm now at the point where I have to decide whether DBS is the right choice for me. In the 15 years' interim I've responded with 'constructive denial' and been fortunate to have achieved amazing results from having a positive mental attitude. Now my medication is progressively less effective and working for a shorter duration I can no longer ignore the reality of my symptoms. It can be a lonely place. Listening to your honest account of meeting the challenges, and rising to overcome them with humility and humour, is uplifting and heartwarming. For which, many thanks!
Thank you for watching, Peter. One of Kevin's gifts is his ability to be honest and real about his situation and how it changes daily. Having a positive mental attitude is important and makes a big difference, but as you said, that will not keep progression at bay. The trick is to find a way to keep that attitude even when the progression feels overwhelming and scary. So much easier said than done. Surrounding yourself with people like Kevin is good medicine.
Kevin: "I was very fortunate to have my care partner in the world." No kidding! I can tell you it's not easy not having one, I'm 75 in 2023, diagnosed 2019, Levodopa dependent June 2021. I haven't bothered to hide my PD; I have told everyone. I'm not ready to cave to "assisted care" (damn expensive, eh?). Pushing to live as long & as normal a senior life as I can. My OFF in the morning is literally a pain, shuffling until 9-10, then it improves so that thankfully I look & walk like many senior folks with ordinary ambulatory issues of our age group.
Thanks for your message. We're glad to hear that you're keeping moving! We have resources for those who live with Parkinson's and do not have a care partner: davisphinneyfoundation.org/resources/living-alone-with-parkinsons/ If you'd like to chat with someone about how they navigate living alone with Parkinson's, consider reaching out to one of our ambassadors listed on the "living alone with Parkinson's" page.
I have read that a dbs could be new adjusted when needed and the sympthomes getting worsed again. Medtronic said a DBS helped for a lifetime on tremor, stifness and rigitity
The Tao seems like how things are going. It's hard to explain to other people, who don't know how I used to push through things. They don't get that I still try to do that, but the end of the reps simply comes faster, and I feel like Wesley towards the end of The Princess Bride. The progressiveness of ways I'm debilitated started really hitting me harder in 2012, but 2009 was the first out of nowhere intense dystonia event. At first I wondered if it was a reaction to some food. It seemed like it could be connected to potatoes or a special seasoning a chain place had for their potatoes. I also thought maybe it was just that I was power walking too much per day. 16 miles. I think maybe those things lent to a little of what was happening but that it was just simultaneously a life long evolving situation. I googled all kinds of physical therapy things to figure out how to knead the muscles in my legs and feet, but it also started happening with my arms and hands. I found a mitigating oral regimen which helps some. I try to preempt some of it, when I know I'm going to be hiking. I can really relate to trying to hide it, like Kevin, initially.
Thanks for your comment. Some medications tend to have more frequent side effects than others, and yes, some of these side effects can be extremely difficult for some people. We hope you and your care team find a regimen that works well for you soon. Two resources that might help: 1.) The American Academy of Neurology released a guide to early Parkinson's treatments for motor symptoms, which is available here: n.neurology.org/content/97/20/942 2.) We also have a medication guide that links to documents that talk about likely side effects. That guide is available here: davisphinneyfoundation.org/medication-guide/#medicationtypes
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The brick house/bamboo philosophy is so helpful.
Thank you Hon. Mr. Kevin, what a powerful story and do enjoy hearing about your progress.
Greetings from Kent, in the UK. Excellent session Kevin, you're an inspiration! Having lived with my PD diagnosis since 2008 I'm now at the point where I have to decide whether DBS is the right choice for me. In the 15 years' interim I've responded with 'constructive denial' and been fortunate to have achieved amazing results from having a positive mental attitude. Now my medication is progressively less effective and working for a shorter duration I can no longer ignore the reality of my symptoms. It can be a lonely place. Listening to your honest account of meeting the challenges, and rising to overcome them with humility and humour, is uplifting and heartwarming. For which, many thanks!
Thank you for watching, Peter. One of Kevin's gifts is his ability to be honest and real about his situation and how it changes daily. Having a positive mental attitude is important and makes a big difference, but as you said, that will not keep progression at bay. The trick is to find a way to keep that attitude even when the progression feels overwhelming and scary. So much easier said than done. Surrounding yourself with people like Kevin is good medicine.
P
😊
Kevin and Polly, :) I wish I had made it in live! I don't know hpw I missed the notification, I might've been cooking. 😅 Catching up now.
Hey Kevin from Puyallup, Washington. Thank you for sharing. I loved hearing your story. You are an inspiration for all of us Parkies.
Nice job Kevin! appreciate all of your insight after dealing with PD for 14 yrs I concur wholeheartedly with your experiences and take. Best, Neil S
Kevin: "I was very fortunate to have my care partner in the world." No kidding! I can tell you it's not easy not having one, I'm 75 in 2023, diagnosed 2019, Levodopa dependent June 2021.
I haven't bothered to hide my PD; I have told everyone. I'm not ready to cave to "assisted care" (damn expensive, eh?). Pushing to live as long & as normal a senior life as I can.
My OFF in the morning is literally a pain, shuffling until 9-10, then it improves so that thankfully I look & walk like many senior folks with ordinary ambulatory issues of our age group.
Thanks for your message. We're glad to hear that you're keeping moving!
We have resources for those who live with Parkinson's and do not have a care partner: davisphinneyfoundation.org/resources/living-alone-with-parkinsons/
If you'd like to chat with someone about how they navigate living alone with Parkinson's, consider reaching out to one of our ambassadors listed on the "living alone with Parkinson's" page.
Thank you for sharing!
I have read that a dbs could be new adjusted when needed and the sympthomes getting worsed again. Medtronic said a DBS helped for a lifetime on tremor, stifness and rigitity
It's true! DBS settings can be adjusted and most people do have regular adjustments from a member of the care team.
Brilliant!
Unbelievable roger
The Tao seems like how things are going. It's hard to explain to other people, who don't know how I used to push through things. They don't get that I still try to do that, but the end of the reps simply comes faster, and I feel like Wesley towards the end of The Princess Bride. The progressiveness of ways I'm debilitated started really hitting me harder in 2012, but 2009 was the first out of nowhere intense dystonia event. At first I wondered if it was a reaction to some food. It seemed like it could be connected to potatoes or a special seasoning a chain place had for their potatoes. I also thought maybe it was just that I was power walking too much per day. 16 miles. I think maybe those things lent to a little of what was happening but that it was just simultaneously a life long evolving situation. I googled all kinds of physical therapy things to figure out how to knead the muscles in my legs and feet, but it also started happening with my arms and hands. I found a mitigating oral regimen which helps some. I try to preempt some of it, when I know I'm going to be hiking. I can really relate to trying to hide it, like Kevin, initially.
I have tried 2 medications. The side effects are barbaric. Newly diagnosed.
Thanks for your comment. Some medications tend to have more frequent side effects than others, and yes, some of these side effects can be extremely difficult for some people. We hope you and your care team find a regimen that works well for you soon.
Two resources that might help:
1.) The American Academy of Neurology released a guide to early Parkinson's treatments for motor symptoms, which is available here: n.neurology.org/content/97/20/942
2.) We also have a medication guide that links to documents that talk about likely side effects. That guide is available here: davisphinneyfoundation.org/medication-guide/#medicationtypes
hi Kevin has the botox helped with the eyelids?
Veterans issued me a mobility scooter
Thanks for your comment. We are glad to hear it!