Parkinson's

[dystonicrunner]

Thank you. I saw reference to this previously and couldn't find anything online (lots of other acronyms for PRI) but figured it was some kind of PT work and therefore not something I would want to pursue. It's interesting that she attributed her cure to that, I really think alot of PT cures are "sidestepping" their way to TMS methods by assuring the patient they're well, nothing's wrong, and creating safety around the activity in question. Those are pretty big, and important steps in a recovery - though the patient is still clueless as to the actual cause and therefore totally susceptible to a relapse or a symptom imperative situation.

yes Postural Restoration Institute which is the organization behind Postural Restoration Therapy. I fully admit I looked into it for a while because I can see where I am all asymmetrical in my body, which was already a thing before the dystonia, but I have had so long of not having my normal flow of walking I felt even more so my hips were more truss and my left ribs flare and this shoulder is higher than the other. But is it a problem, or even if it is, will it all even out when I start to loose those tense areas in my body and start to feel like I flow better. Probably.

And yes, I think there is something to that sidestepping.

 

[Mr Hip Guy]

Interesting, thanks. As soon as I saw "postural" though my hackles raised up to "IGNORE! IGNORE!" - I have grown to despise all those posture-related cures for RSI etc after going down that path before I learned about TMS.

On a different note, I think I am going to stop participating in this thread. I started it when I had a concern (unfounded) about possible Parkinson's, but it has since transformed into this Dystonia talk. I'm a little concerned someone will click on this with a Parkinson's concern and get misled as a result.

Maybe I'll start a new thread for this subject, I dunno. What that thread will be I'm not sure, frankly I don't even think what I'm experiencing is actual "dystonia" anyway - certainly not in the extreme sense of some of the videos I've seen (or that poor lady that has to run backwards!) Mine seems to be a strong "resistance" to running at the offset - that first 10-20min I keep harping on - before I smooth out and am able to run normal. I'm sure there is something there to mine the depths of why there might be "resistance" at all. We'll see, I'll give it some thought.

 

[dystonicrunner]

(or that poor lady that has to run backwards!) /QUOTE]

I agree, stop the thread.

Justine Galloway should be commended for her Guiness World Record for running backwards for a half marathon, but she kills me. I know she could run forwards. TBH when I first had my onset, it still happened to me when I walked backwards, and I was like wow must be nice to not have it with every single thing you do. I think it perpetuates the false claim that it is task specific and only happens when you run forward and not anything else. It happened for me with everything, except maybe walking up stairs. Bike, elliptical, walking, running, walking backwards, etc. I know people with Runner's Dystonia who can run but not walk. I legit have a friend who can run, do hardcore martial arts, and many other activities, she is fit looking as hell, yet she can't walk AT ALL and needs to use a mobility scooter. It's insane. That can't be a legit problem with your brain you can do all this fancy foot work and run yet cannot walk to the degree you are on a scooter.

Remember I was extreme. I could not walk to my mailbox even in a full calf boot. My ankle even turned with that. You will be just fine, I know it.

 

[dystonicrunner]

ok I dunno how that was all a quote but hopefully you get my message!

 

[jhc1013]

My father had a mild case of Parkinson's before he passed away 3.5 years ago. Also some dementia and low-grade alzheimer's.

It's always been a fear of mine to lose yourself to something like this which causes you to either lose the ability to fight it physically...or worse to lose your mind that you don't even know to fight it. Both are horrifying realities to me and are probably on my personal "top 10 issues with aging."

Recently I watched the Michael J Fox documentary "Still" on Apple TV and I was stunned at how affecting it was on me. To say I was transfixed and horrified would be to put it mildly. Moved to tears a few times even.

Guess what? The last few weeks I have been dealing with some oddball (meaning new to me) TMS symptoms. I don't think the actual symptoms matter all that much, but here they are: "crick" in the neck, rib pain, chest pain, pain upon deep breaths, feeling of restlessness, twitchy hands, feeling a "buzzing" in my hands like energy being restrained.

My normal "bugaboos" (hip & knee pain) have been pretty quiet.

I am pretty sure all of my recent symptoms are triggered TMS responses. I clearly have some obvious deep fear of something like a Parkinson's that was triggered by watching that show, but since I also clearly recognize these as TMS symptoms, m question is what do I do about it? Do I need to get to the bottom of this parkinson's thing? I just acknowledge and move on?

Would appreciate some discussion or suggestions.

I’m a bit late commenting on this post - but as someone who has dealt with Parkinson’s Disease for 18 years now I can tell you one thing….Michael J Fox has done amazing work at his foundation to help with PD research. BUT….he is NOT the poster-child for the disease. Were you to see me sitting close to you in a restaurant today you would not know I have Parkinson’s. MJF has had numerous other health issues on top of his PD. Not all of us have the dyskinesia that he has - his brought about by years on Levodopa AND the numerous other brain insults he had experienced. I exercise 7 days a week and manage my PD issues with as little medication as possible. Mr. Fox, on the other hand, drank heavily after his original diagnosis and has suffered the other issues aforementioned. Having PD is no picnic. But it is still the only chronic, incurable disease I am aware of for which the main prescription is vigorous exercise. It takes a tremendous amount of work but the symptoms can be greatly retarded if one is willing to put in the time and effort. For people new to PD, especially, seeing Mr. Fox scares them to death. I tell people newly-diagnosed to not look at videos of others - especially those who are FAR into their encounter with the disease. I have a friend in a wheelchair for 25 years, paralyzed from the chest down. He would trade situations with me in the blink of an eye. I truly appreciate your fears and was glad to read your post.

 

[Booble]

T

I’m a bit late commenting on this post - but as someone who has dealt with Parkinson’s Disease for 18 years now I can tell you one thing….Michael J Fox has done amazing work at his foundation to help with PD research. BUT….he is NOT the poster-child for the disease. Were you to see me sitting close to you in a restaurant today you would not know I have Parkinson’s. MJF has had numerous other health issues on top of his PD. Not all of us have the dyskinesia that he has - his brought about by years on Levodopa AND the numerous other brain insults he had experienced. I exercise 7 days a week and manage my PD issues with as little medication as possible. Mr. Fox, on the other hand, drank heavily after his original diagnosis and has suffered the other issues aforementioned. Having PD is no picnic. But it is still the only chronic, incurable disease I am aware of for which the main prescription is vigorous exercise. It takes a tremendous amount of work but the symptoms can be greatly retarded if one is willing to put in the time and effort. For people new to PD, especially, seeing Mr. Fox scares them to death. I tell people newly-diagnosed to not look at videos of others - especially those who are FAR into their encounter with the disease. I have a friend in a wheelchair for 25 years, paralyzed from the chest down. He would trade situations with me in the blink of an eye. I truly appreciate your fears and was glad to read your post.

I think my husband might be heading toward Parkinson's. His father and aunt had it. He has some of the early signs. Your post is very helpful.
I would also welcome any advice you have before things go further.

 

[jhc1013]

T


I think my husband might be heading toward Parkinson's. His father and aunt had it. He has some of the early signs. Your post is very helpful.
I would also welcome any advice you have before things go further.

I am so saddened to hear that your husband may be heading down the PD road - and thank you for making contact. There seem to be two types of PD sufferer's; 1) Those who become so frightened that they freeze and become reclusive and, 2; those who get great help from the outset from positive people, YouTube Channels and websites that truly offer help. I was fortunate enough to get into group #2. I am uncertain if I can give an email here for you to contact me offline, but I shall try. [redacted by mod] at gmail .com

 

[Booble]

I am so saddened to hear that your husband may be heading down the PD road - and thank you for making contact. There seem to be two types of PD sufferer's; 1) Those who become so frightened that they freeze and become reclusive and, 2; those who get great help from the outset from positive people, YouTube Channels and websites that truly offer help. I was fortunate enough to get into group #2. I am uncertain if I can give an email here for you to contact me offline, but I shall try. tumaloproductions at gmail .com

Thank you, I will send you an email. Much appreciated.

 

[Cactusflower]

My father had Parkinsons. There are a variety of forms, he had the most severe form however we altered life to accommodate and he had many wonderful and memorable years after his diagnoses. His dyskonesia was mild, but the muscle weakness was progressive, again, we just kept adapting everything as long as we could. Dad never complained. He was pleased he could do as much as he could despite the diagnoses.

 

[Booble]

My father had Parkinsons. There are a variety of forms, he had the most severe form however we altered life to accommodate and he had many wonderful and memorable years after his diagnoses. His dyskonesia was mild, but the muscle weakness was progressive, again, we just kept adapting everything as long as we could. Dad never complained. He was pleased he could do as much as he could despite the diagnoses.

You had a very special Dad, Cactus.

 

[JanAtheCPA]

am uncertain if I can give an email here for you to contact me offline, but I shall try. [redacted by mod]

Indeed, this is not safe (bots are always on the alert and they are programmed to recognize the tricks) but that's why all forums have some form of DMs (direct messages). Our software calls it Private Conversation. The option shows up by clicking on any avatar.

 

[Cactusflower]

You had a very special Dad, Cactus.

I did, and that was such a long time ago There are so many new treatments now. Dad also survived on 1/4 of a lung (none of the other) with no issues and was missing half a rack of his ribs (TB). It really is a great lesson on how amazing the human body can be!

 

[Booble]

I did, and that was such a long time ago There are so many new treatments now. Dad also survived on 1/4 of a lung (none of the other) with no issues and was missing half a rack of his ribs (TB). It really is a great lesson on how amazing the human body can be!

Remarkable!
I think you have more of his survival grit than you know.