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Tart Cherry Jam
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Default Sep 05, 2023 at 11:11 PM
  #1
He shared with me one week after the dx when we all had dinner out. He asked that I keep the information private. He wanted to explain what Parkinson's is and I told him that I knew it well, being a carrier of a Parkinson's gene mutation. He is about 20 years my senior and we only met several years ago and he has been extremely loving to me. He told me that this dx explains his frequent falls. He indeed has been hit hard by adversity in the past year. I have visited him in hospitals and rehab centers.

Several years ago, I read an article about how dancing helps slow the progression of Parkinson's. Apparently dancing is the best tool. So I told him that right upon hearing about the dx. I now feel that I might have rushed with a solution whereas he might have been looking for simple compassion, not problem-solving. But I am not sure.

Later, I did a search on Google trying to find that article (I finally found it: https://stanfordmag.org/contents/why-dance-matters) and a local dance class taught by professional dancers and offered through Stanford Healthcare popped up as #1 search result. I sent that information to his wife, my distant cousin. She still has not responded but she has been known to be very slow in replying to email. She herself is well and energetic, knock on wood. He does not have an email address as far as I know. He texts but I sent all the links to her because it is more convenient to send links, and I gather to read them, too, via email. I do not text much in general, only when absolutely necessary; I prefer email. He does not use Facebook, either, and probably does not use Messenger. Another reason I sent the links to her was because she seems to be the one organizing everything in their family.

What can I do to let him know that I care about him and have been thinking about him? How many more days should I wait for his wife's response to my emails about dancing before I text him to let him know that I emailed her all those links? I do not want to send the links to him via text because this would make it appear that I distrust his wife.

I want to express concern that I genuinely feel and show support but not to overcommit myself because I know that I am busy and won't be able to, say, phone him regularly even though I know that he would prefer it.

I also know from his wife and from him that he has mental illness, probably depression but I am not sure, and I know that Parkinson's can independently cause depression even in patients without prior history of it and I am worried that innate mental illness plus Parkinson's can make him very depressed down the line.

Should I share with him that I now believe that I might have rushed towards solutioning when I heard about the dx instead of expressing pure compassion or is it OK?

I also want to connect him with the research on Parkinson's that I am part of as a carrier.

I just want to make sure I do it in a way that underscores compassion and dial back my tendency to problem solve.
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Default Sep 06, 2023 at 01:32 AM
  #2
Yes, message him that you feel you rushed into offering a solution and feel bad about it but that it was, of course, well intentioned. Let him know that he can get the links from you anytime he needs them or just hit you up for a chat, whenever. He's not thinking about your response as much as you are.
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Default Sep 06, 2023 at 02:27 AM
  #3
I think you were kind thinking about what would help, I never knew that about dancing btw.

At the moment they’re likely processing this devastating diagnosis, I would personally say “Here if you need me” and then give space, but check in every so often (few weeks?). In my experience many people rush in after a diagnosis or illness but tail off further along the line.

It’s a tough progressive illness and I’m sure emotional support would be welcome.
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Default Sep 06, 2023 at 05:47 AM
  #4
When the time is right, I also suggest you send him this link, which is a motorized exercise bike SPECIFICALLY DESIGNED to help ease AND improve Parkinson's symptoms. This was a client of mine a few years back, and people with Parkinson's swear by this bike. It IS expensive and IS an investment. Parkinson's patients say that it takes dedicated exercise to experience relief. Physical therapists and neurologists support the efficacy of this bike. High repetition exercise helps to develop new neurological pathways that help heal and restore the body's physical functioning. Read the testimonials. The investment is worthwhile.. Parkinson's patients state that they feel they don't have a disability after buying and using this bike. It's very effective therapy.

Here's the bike:

Buy The Best Exercise Bike for Parkinson's Patients | Theracycle

Here's an article about how repetitive exercise, and especially high repetition exercises that this bike offers, helps the brain to heal and improve motor functioning:

Exercise Program for Neurological Disorders | Theracycle

Here's several video customer testimonials:

Parkinson's Video Customer Reviews | Theracycle

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Default Sep 06, 2023 at 10:38 AM
  #5
I will definitely read about high repetition exercise and this bike. I had no idea.
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Default Sep 06, 2023 at 01:12 PM
  #6
I didn’t realise the exercise benefits either, thanks for sharing.
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Default Sep 06, 2023 at 08:53 PM
  #7
It just occurred to me: I should also tell him that I am honored that he trusted me with sharing the devastating dx. It is clear that he doesn't go around saying he has Parkinson's to everyone and their brother.
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Default Sep 08, 2023 at 11:08 PM
  #8
I wrote to him, stating some of the things discussed in this short thread. It turned out that he and his wife are going to a dance class TONIGHT based on the recommendations I emailed several days ago. He is very appreciative, thinks that I am compassionate, and in no way was hurt. I wrote that I would further research repetitive exercise and then write to him again. I am so glad that I posted and his way learned about the repetitive exercise and the bike.
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Default Dec 29, 2023 at 10:05 PM
  #9
I just want to update the thread: we are doing fine, my relatives are coming for dinner soon, and I have asked my neurologist whom I visited to discuss my own risks of Alzheimer's and Parkinson's for recommendations for my cousin's husband and he recommended a personal trainer who specializes in Parkinson's and a group fitness class, also with this specialization. My cousin's husband was thankful to receive the recommendations and is about to start both personal training and group fitness regimen in 2024.

And I was really happy to see that there are now local resources for people diagnosed with Parkinson's.

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