Parkinson's

[Mr Hip Guy]

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.

 

[Andy Bayliss]

Hi Mr. Hip Guy,

I am touched by your experience. I can feel the vulnerability of my life, what might happen in the future, and aging and death of my parents.

Do I need to get to the bottom of this parkinson's thing? I just acknowledge and move on?

I am feeling perhaps both ideas are fruitful for you. There might be some very tender explorations for you in your fear of Parkinsons, your relationship to it, your memories, your future thinking about it. And in a parallel way you have the opportunity to work the more cognitive techniques of understanding the symptoms as TMS, and "what else is new?" To understand and not be afraid.

My response about getting to the bottom is about the feelings you have, not physical diagnosis for Parkinsons. I'm reading again and perhaps that is what you mean, and I would say that you can consider what you would gain or not gain with going down that road, with a physician. That might be very important for you also, to know where you are diagnosis-wise, and also to have evidence perhaps that there is nothing physical.

Good luck.

Andy

 

[Celayne]

I can’t read about symptoms because I take them on. One day I looked at a TMS page on FB where someone asked if “frequent urination” was TMS. That evening I developed this condition - for several hours. I’ve never had such output, and hadn’t consumed more liquid than usual that day. As suddenly as it came on, it stopped after about 5 hours. Weird, huh?

I can’t even list all the times I have heard or read about an ailment and caught my subconscious either wondering if I had the disease, or creating some symptoms that seemed to fit.
For me, acknowledging what is going on has been enough to encourage my brain to move on and let the symptoms go.

Remember, fear is the most basic thing that creates and keeps symptoms going. Knowing that your symptoms are being created by your MindBody is important; working to overcome the fear is, too.
If you can look at a symptom, recognize it for what it is that should help allay sone of your fears.

You might find Alan Gordon’s course on this Wiki helpful. It’s free! Also if you are a Facebook user, he has a page there where he posts good info regularly. His book, The Way Out, is excellent.

 

[Mr Hip Guy]

Thank you both for the wonderfully thoughtful & supportive comments.

@Andy Bayliss - Actually I wasn't thinking of "getting to the bottom" with an actual diagnosis, I was just referring to figuring out why I seem to have such an issue with it. But that's not a bad idea as I know they can do blood tests now to determine genetic markers for the disease etc. Not sure if that's a rabbit-hole I even want to go down though - I tend to make stuff like that a self-fulfilling prophecy.

@Celayne - I absolutely do the same. I recall when I was spiraling down with my "original" TMS manifestation (certainly not my first, but the one that eventually made me discover Sarno), which was hip FAI, torn labrum, etc, I remember reading the below website and most of the chronic pain the author described started to manifest for me, plus insomnia and extreme anxiety etc. I'm definitely too sensitive to reading about symptoms no doubt about that.

https://www.painscience.com/

 

[TG957]

I can’t read about symptoms because I take them on. One day I looked at a TMS page on FB where someone asked if “frequent urination” was TMS. That evening I developed this condition - for several hours. I’ve never had such output, and hadn’t consumed more liquid than usual that day. As suddenly as it came on, it stopped after about 5 hours. Weird, huh?

I can’t even list all the times I have heard or read about an ailment and caught my subconscious either wondering if I had the disease, or creating some symptoms that seemed to fit.

I remember reading a memoir of a physician who practiced at the end of 19th century. With a great deal of humor he described how, as a medical student, he experienced symptoms of every medical condition he studied, including labor contractions, which he, being a male, obviously could never have.

 

[Celayne]

In the 70s Marcus Welty and Medical Center were popular medical dramas on TV. My mom read that after each episode aired, doctors would report increased visits by patients convinced they had the Ailment of the Week.
I never watched the shows. I was already certain I would die soon after reading Love Story and Brian’s Song.

 

[TG957]

And now it would be very appropriate to remember Dr. Sarno's observations about the epidemic of whiplash and carpal tunnel syndrome in the US!

 

[Celayne]

And now it would be very appropriate to remember Dr. Sarno's observations about the epidemic of whiplash and carpal tunnel syndrome in the US!

Yes, it would!
Despite knowing about suggestibility and being very aware of TMS, I developed whiplash symptoms after a car accident. They didn’t appear until about a week later, when friend asked if I’d gotten whiplash. I said no but my sub-conscious heard YES. It was a bit of a rough claw-back to normalcy.

 

[TG957]

Yes, it would!
Despite knowing about suggestibility and being very aware of TMS, I developed whiplash symptoms after a car accident. They didn’t appear until about a week later, when friend asked if I’d gotten whiplash. I said no but my sub-conscious heard YES. It was a bit of a rough claw-back to normalcy.

So fascinating!!! Thank you for sharing this, it may help people to appreciate the immense power of subconscious, which can be both healing and destructive!

 

[Mr Hip Guy]

Adding onto this thread, while I am still low-level concerned about Parkinsons (I've noticed some symptoms that I've had awhile that could point to that), what I am dealing with more now is a condition usually called "Dystonia" and specifically for me "runners dystonia."

Dystonia is usually connected to Parkinsons as either a complimentary symptom or as a precursor for full-blown parkinsons. For me, specifically what I am experiencing is a difficulty in running a normal & smooth gait when I run. My legs/knees/ankles stiffen oddly and cause my gait to be disjointed and awkward in, and this is the key part, in the beginning of a run while I am 'warming up'. Within 20min or 2 miles, things even out and get much better. Now, I am older (50+), and therefore it probably takes longer to 'warm up' for these "old bones" I have but I've tried some pre-run warmup activities and nothing seems to be working. It's an odd feeling not having a smooth running gait and being unable to smooth it out.

Being TMS prone, part of me is freaking out and catastrophizing etc as running is an important part of my life (see my "Recurrence of Hip Pain" thread) but thankfully I'm also an old-hat and somewhat practiced pro with recognizing TMS things as such. Part of my therapy is a) reading this forum and b) writing about it so here I am.

A few reasons I suspect TMS:

- This has come on relatively suddenly (i.e. in the last 12 months when I have been running regularly for 15+ years)
- I am TMS prone, to say the least with my subconscious always "trying new things" to trick me - I could write a symptom imperative list at least 50 symptoms long
- The idea of not being in control of my body particularly frightens me, a ripe area for TMS to target
- Recently (a few years ago) a famous runner (Kara Goucher) publicly announced being "stricken" with Runners Dystonia, hearing that allowed that particular worm to burrow into my subconscious
- More recently, a runner with a blog that I follow also announced "coming down" with this condition (this particular blogger is definitely TMS prone, though she doesn't know it)
- Running (And exercise in general) is important to me as I value exercise and being healthy. My child subconscious HATES this and tries to sabotage this often with all kinds of ailments over the years (stress fractures, plantar fascitis, hip impingement, muscle pulls, tendonitis, runner's knee, etc). This fits right in with the rest.
- In general I think dystonia, which includes "runner dystonia" is TMS as TMS gets (I've read some of the threads here including the one commented in by the esteemed TG957 linked below)

https://www.tmswiki.org/forum/threads/dystonia.14448/ (Dystonia)

But, being TMS prone, I also am prone to doubt and there are a few things that don't make sense about this. The main one being it goes-away after a period of warmup (i.e. about 20min of activity), which would indicate....well, I don't know? maybe that I'm just old and I need longer to warmup? Maybe I need to do more pre-run activities to loosen up?

Anyway, I appreciate your reading this - comments are very welcome. But sometimes it's just helpful writing everything out.

 

[TG957]

But, being TMS prone, I also am prone to doubt and there are a few things that don't make sense about this. The main one being it goes-away after a period of warmup (i.e. about 20min of activity), which would indicate....well, I don't know? maybe that I'm just old and I need longer to warmup? Maybe I need to do more pre-run activities to loosen up?

It may also indicate that after 20 minutes of activity your inner child surrenders to inevitability of the exercise and gives up the sabotage. Both of my subconscious and conscious absolutely HATE, HATE, HATE exercise. I also noticed the 10-20 minute interval that I need to calm my anxiety down and get on with the exercise, whether it is yoga, or running or weight training. If I were your subconscious, I would do exactly what it does - fight until I realize that resistance is futile.

BTW, your "Parkinson's" reminded me of another trendy diagnosis: Stiff Person Syndrome, which became famous when it ended Celine Dion's career. We had a brainstorming session here on the forum and unanimously concluded that Celine Dion most likely has TMS.

 

[Mr Hip Guy]

Thank you for your response. Yes, I definitely consider that "after 20 minutes" period as possibly being my subconscious saying "welp, he's not gonna give up on this, may as well settle down".

Had a nice run this weekend thinking about what I posted above. Had a little bit of issue at the beginning but not like it has been previously, posting my thoughts here often helps (as do the responses).

And I've had the same thoughts about Celine Dion as well!

 

[Mr Hip Guy]

Still having trouble dealing with this, it continues to plague me for about 20min of the run before I "loosen up" and run somewhat normally. Also bothersome is I am slowing down! I attribute this to age (entering my mid 50s) but the inner child in me (the same one that HATES running) also hates aging and any sign of aging. Grrrr.

As I mentioned above, the idea of not being in control of my movements is a key trigger for me, it FRIGHTENS me. This website below is of this poor woman who has also been stricken with "dystonia" (coincidentally after her father passed away from Parkinsons). Seeing her running motion is the stuff of nightmares, I need to get to the bottom of my fear of this.

https://runningrare.com/stories/dystonia-justine-galloway-story/ (Justine Galloway — Running Rare)

Recently I have had a few trigger episodes for some parkinsons symptoms. Each have been shortly after a round of very physical work (splitting firewood, and another when using some heavy gas powered equipment). For awhile after, my hands were not able to stay still, I had a very pronounced tremor. Is there anything more scary than looking down at your shaking hand and not being able to stop it?

I have had a couple of relatives (non-blood related - both were spouses of my cousins) who have dealt with body control diseases like MS, Parkinsons, Guillain-barre etc (I honestly don't know the specific disease - but it doesn't matter to this point). I am sure my experience of knowing them and see what they go/went through is contributing to my easily-suggested mind.

Apologies for this somewhat rambling post, it just helps to get these thoughts down on "paper."

 

[TG957]

Still having trouble dealing with this, it continues to plague me for about 20min of the run before I "loosen up" and run somewhat normally. Also bothersome is I am slowing down! I attribute this to age (entering my mid 50s) but the inner child in me (the same one that HATES running) also hates aging and any sign of aging. Grrrr.

As I mentioned above, the idea of not being in control of my movements is a key trigger for me, it FRIGHTENS me. This website below is of this poor woman who has also been stricken with "dystonia" (coincidentally after her father passed away from Parkinsons). Seeing her running motion is the stuff of nightmares, I need to get to the bottom of my fear of this.

https://runningrare.com/stories/dystonia-justine-galloway-story/ (Justine Galloway — Running Rare)

Recently I have had a few trigger episodes for some parkinsons symptoms. Each have been shortly after a round of very physical work (splitting firewood, and another when using some heavy gas powered equipment). For awhile after, my hands were not able to stay still, I had a very pronounced tremor. Is there anything more scary than looking down at your shaking hand and not being able to stop it?

I have had a couple of relatives (non-blood related - both were spouses of my cousins) who have dealt with body control diseases like MS, Parkinsons, Guillain-barre etc (I honestly don't know the specific disease - but it doesn't matter to this point). I am sure my experience of knowing them and see what they go/went through is contributing to my easily-suggested mind.

Apologies for this somewhat rambling post, it just helps to get these thoughts down on "paper."

Speaking of dystonia, I attribute my (now fully defeated!) dystonia to the subconscious fear of developing the same horrific dystonia my grandaunt had. It could be that I have some unknown yet genetic markers for it, or a total fabrication of the terrified brain.

 

[Mr Hip Guy]

Thank you for your response.

I have gone back and re-read your thread (The one I linked in my initial post here) a few times as it has helped me deal with this issue. Did you ever create a post of what you went through as indicated you might in that thread? I haven't been able to find it if so.

 

[Mr Hip Guy]

Update - I have noticed my running dystonia symptoms are both milder and resolve more quickly when I run with others. I have a normal group I run with early morning and this morning's run I specifically noticed this. While chatting with the group, my issues were much less pronounced than when I am running on my own. That's a clear sign I need to get out of my own head when I'm on my own.

 

[TG957]

Thank you for your response.

I have gone back and re-read your thread (The one I linked in my initial post here) a few times as it has helped me deal with this issue. Did you ever create a post of what you went through as indicated you might in that thread? I haven't been able to find it if so.

It looks like you are asking me, although the reference was not in your initial post but later. I posted extensively on that thread about my experience, but I also wrote a book about it. I dedicated substantial portion of it to dealing with dystonia, as it was the hardest symptom to beat. Incidentally, most of my fears were induced by the experience of my relative who had the official diagnosis of Parkinson's, but I am now convinced it was dystonia. I talk about it in the book as well.
https://www.amazon.com/Defying-Verdict-Defeated-Chronic-Pain-ebook/dp/B0834Q46SM

 

[JanAtheCPA]

but I also wrote a book about it...
https://www.amazon.com/Defying-Verdict-Defeated-Chronic-Pain-ebook/dp/B0834Q46SM

In addition to being an inspiring story of recovery from unbelievably severe symptoms, Tamara's book is also a riveting and damning indictment of the incompetency of the medical-industrial complex. Highly recommended.

 

[TG957]

In addition to being an inspiring story of recovery from unbelievably severe symptoms, Tamara's book is also a riveting and damning indictment of the incompetency of the medical-industrial complex. Highly recommended.

Jan, you are right that medical-industrial complex is often incompetent. But this quite fitting term "medical-industrial complex" in itself points at an inherent problem of any mass production, in this case of healthcare. Our healthcare system by design is supposed to serve as many people as possible at arguably low cost. Low cost obviously doesn't happen, but that's beside the point. Mass production kills individuality of approach, but there's no such thing as standard people, every patient is unique. As a result, mission becomes impossible to achieve in the non-routine cases beyond basic infections or simple injuries, neurological conditions being very non-routine.

 

[BloodMoon]

Hi @Mr Hip Guy,

Actually I wasn't thinking of "getting to the bottom" with an actual diagnosis, I was just referring to figuring out why I seem to have such an issue with it. But that's not a bad idea as I know they can do blood tests now to determine genetic markers for the disease etc. Not sure if that's a rabbit-hole I even want to go down though - I tend to make stuff like that a self-fulfilling prophecy.

I remember that a member of the forum a few years back suspected that they might have Parkinson's. I also remember looking up about Parkinson's at the time and noted that the genetic markers are only a guide and that "the neurologist has no 100% reliable clinical marker for use in clinical practice and still needs to rely on clinical expertise to diagnose PD. This is the most pressing problem on which biomarker researchers need to focus their efforts in the coming years" -- the latter quotation is from this research paper dated 2018 though, so of course there may have been advances since then: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6132920/ (Diagnostic biomarkers for Parkinson’s disease at a glance: where are we?) If the 2018 paper is still correct, however, then it might indeed be rather a tricky and long rabbit-hole to go down if you were to decide that you wanted to go down it. (At one time I thought I might have lupus and that particular rabbit-run took almost two years to complete and for lupus to be ruled out, but then I'm a Brit and things tend to move slowly on our National Health Service.)

I also remember reading (but don't have the references to hand) that there are pros and cons (and differing opinions) concerning starting treatment early in Parkinson's, so if a person does have early Parkinson's it seems that it wouldn't necessarily mean that it'd turn out to be a bad thing in not knowing about it as early as possible. (I mention this because when I make decisions about whether or not to investigate symptoms to see if they are due to an actual physical illness, I tend to determine whether or not I would 'kick myself' for dismissing my symptoms as TMS if they turned out not to be.)

I started to watch the Michael J. Fox documentary -- despite knowing that I can be easily triggered by descriptions of diseases, because I really like him as an actor -- but I had to turn it off because it was too graphic and potentially triggering for my brain.