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Parkinson's and kiting

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Rojbrown
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Parkinson's and kiting

Postby Rojbrown » Sat Jan 09, 2021 9:55 pm

Almost 62yo and recently diagnosed....needless to say it has put my world in a tailspin. Had envisioned eventual retirement to a SA beach community to kite year around. Now I wonder what role kiting will have in my future. It is my passion and my physical symptom is primarily a hand tremor. It's the psychological blow that's the gut punch.Last time out on SF my foot switches felt like they were anchored in cement. That was before diagnosis and treatment. My neurologist is optimistic I have years of function ahead. I had started foiling and was working on jibbing on foil. All of which can be viewed as therapy. Indeed powerful therapy for a movement disorder. My question is are there others in this community who kite with Parkinson's? What say you to your experience? I'd be happy mowing the lawn though still want to push the foil skills.I hope this doesn't sound like I'm playing a sympathy violin. Knowing the experience of others might help me navigate the path of acceptance. Feedback appreciated.
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Jamesconn300
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Re: Parkinson's and kiting

Postby Jamesconn300 » Sat Jan 09, 2021 10:07 pm

Rojbrown wrote:
Sat Jan 09, 2021 9:55 pm
Almost 62yo and recently diagnosed....needless to say it has put my world in a tailspin. Had envisioned eventual retirement to a SA beach community to kite year around. Now I wonder what role kiting will have in my future. It is my passion and my physical symptom is primarily a hand tremor. It's the psychological blow that's the gut punch.Last time out on SF my foot switches felt like they were anchored in cement. That was before diagnosis and treatment. My neurologist is optimistic I have years of function ahead. I had started foiling and was working on jibbing on foil. All of which can be viewed as therapy. Indeed powerful therapy for a movement disorder. My question is are there others in this community who kite with Parkinson's? What say you to your experience? I'd be happy mowing the lawn though still want to push the foil skills.I hope this doesn't sound like I'm playing a sympathy violin. Knowing the experience of others might help me navigate the path of acceptance. Feedback appreciated.
stay positive, everybody's wheels fall off eventually - nobody can escape this fact

you are in my thoughts and I'm sure many others here.
please keep us updated on your condition and how it affects your sessions if you are comfortable sharing.
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Rojbrown (Sat Jan 09, 2021 10:19 pm)
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grigorib
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Re: Parkinson's and kiting

Postby grigorib » Sat Jan 09, 2021 10:19 pm

Michael J Fox mentioned that playing guitar temporarily remedies the symptoms, so maybe some level of mental+physical activity is a good thing. I’d check with doctors on that
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Rojbrown (Sat Jan 09, 2021 10:19 pm)
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Havre
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Re: Parkinson's and kiting

Postby Havre » Sat Jan 09, 2021 11:09 pm

Yeah. Music therapy seems to work. Definitely worth checking out.

I don't want to give anyone false hope (or make it sound like I know more about this than I do), but if I remember correctly Elon Musk is extremely optimistic that Neuralink could do wonders for people with Parkinson? Might also be worth checking out - and stay informed about.

The mind is powerful in both "directions". I had a friend who ended up laying in bed for more or less six months straight when he was in his 20s. His body just completely shut down. Always been very healthy. Even used to compete in gymnastics. So I don't think it was anything physical. Now he is back to normal. But you can also trick your mind in a positive direction. I don't believe in "magic", but I am extremely curious as to how what I eat, how I breathe etc. influences my "health". Personally I absolutely love Wim Hof´s breathing technique. Might have 0 effect on you, but if you believe that those kind of things could help - even if it is only making you 0.001% better I would recommend checking that out.

Keep going. And maybe 1-2-3 years from now you are kiting with Neuralink without a care in the world! And while you wait you have been able to keep things at bay in such a way it is just your head blocking you to kite as you have always kited! It's not impossible....
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Rojbrown (Sat Jan 09, 2021 11:15 pm)
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Rojbrown
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Weight: 190lbs
Local Beach: Lake Mojave boat launch
Favorite Beaches: Lake Mohave AZ
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Re: Parkinson's and kiting

Postby Rojbrown » Sat Jan 09, 2021 11:13 pm

stay positive, everybody's wheels fall off eventually - nobody can escape this fact

you are in my thoughts and I'm sure many others here.
please keep us updated on your condition and how it affects your sessions if you are comfortable sharing.


I'll keep this post updated. It may be therapy for me. Winter is a slow kiting time here is AZ. Lake Mohave gets chilly and my cold tolerance has plummeted as well. But I'll keep at it. As for now I'm exercising daily including doing foot switches on a bosu ball while holding a 12lb ball. Engraving what motor pathways i can living land bound

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Re: Parkinson's and kiting

Postby tkachuk » Sun Jan 10, 2021 12:01 am

I understand the right meds and a good neurologist can control symptoms well, so kite on!
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Rojbrown (Sun Jan 10, 2021 1:34 am)
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fluidity
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Re: Parkinson's and kiting

Postby fluidity » Sun Jan 10, 2021 12:56 am

Keep at it Rojbrown. Continue to challenge your body and mind with new things. Like dancing is supposed to be good for altzheimers, maybe look for some other manual dexterity things like rubic's cubes etc.
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Rojbrown (Sun Jan 10, 2021 1:34 am)
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grtlakes
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Re: Parkinson's and kiting

Postby grtlakes » Sun Jan 10, 2021 3:25 am

My brother’s s father inlaw has Parkinson’s. 15 years after diagnosis he has learned to play the guitar and competes locally in ballroom dancing. Not my choice of pastimes but both hobbies require balance, coordination, and dexterity. His hand tremor is slightly more pronounced. Keep moving buddy.
Foiling will keep you young and enjoying life.
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Rojbrown (Sun Jan 10, 2021 4:48 am)
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BenBen
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Re: Parkinson's and kiting

Postby BenBen » Sun Jan 10, 2021 9:05 am

Hey,
My bandmate has the same diagnosis since 9 months. His symptoms were worse. But now after 6 months of therapy and medics he s doing fine and he s able to play guitar and drums again. I bet the right medicine will fight the tremor and keep you kiting for years and years. Good luck !
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Rojbrown (Sun Jan 10, 2021 8:25 pm)
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knyfe
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Re: Parkinson's and kiting

Postby knyfe » Sun Jan 10, 2021 10:19 am

Staying active is the most important non-pharmaceutical part you can do to help yourself. Your current symptoms you got diagnosed on should be controllable with the help you your docs prescriptions. After some initial dose adjustments you should be fine doing anything. Progressing foiling for sure.

No one can predict your long term progression (as with kiting progression - who would have thought that it’s so difficult for the old timers, me included ;-) ) at the moment - time will tell - but staying active is the best you can do. Kiting - dancing - guitar playing (fine motor skills) are all the right things to do.

G

... My wife does Parkinson’s research.
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