Parkinson's

[learningmore]

The book "Recovery From Parkinsons" by Janice Hadlock covers this very well.

The book is free, btw.

She has written multiple books on Parkinsons and Asian medicine. According to her, Parkinsons is caused by qi flowing incorrectly. Now hold on, don't worry about that. The descriptions in the book of Parkinsons personalities PREVIOUS to developing the disease are very captivating. She describes my pop, who has Parkinsons, and the description is spot on. Inflexible, punctual. etc.

The theory is basically that extremely strict upbringings and being unable to express your opinions, thoughts, and emotions, causes Parkinsons. There are data to back this in the book, too.

 

[Cactusflower]

Interesting. My Dad had Parkinsons. He did not have a strict up bringing at all, and was mostly pretty flexible, creative, no-controlling, encouraging, and loving. Dad was a WILD CHILD who was constantly (and deservedly) in trouble a lot, but even that was pretty lenient because he was the apple of his mother eye. His Dad tried to be more strict, but without any luck. Dad did start work very young, at the age of 10 (I started at the age of 12...we just liked to have our own money), but it wasn't uncommon when he was a kid to work that young.

 

[JanAtheCPA]

I started to watch the Michael J. Fox documentary... ...but I had to turn it off because it was too graphic and potentially triggering

I bookmarked this recent and really interesting interview with MJF - it might be easier on your nervous system, @BloodMoon:
https://www.theguardian.com/film/2024/feb/02/i-hate-it-it-sucks-but-it-didnt-defeat-me-michael-j-fox-on-pity-parkinsons-and-a-potential-cure (‘I hate it. It sucks. But it didn’t defeat me’: Michael J Fox on pity, Parkinson’s – and a potential cure)

 

[TG957]

The book "Recovery From Parkinsons" by Janice Hadlock covers this very well.

The book is free, btw.

She has written multiple books on Parkinsons and Asian medicine. According to her, Parkinsons is caused by qi flowing incorrectly. Now hold on, don't worry about that. The descriptions in the book of Parkinsons personalities PREVIOUS to developing the disease are very captivating. She describes my pop, who has Parkinsons, and the description is spot on. Inflexible, punctual. etc.

The theory is basically that extremely strict upbringings and being unable to express your opinions, thoughts, and emotions, causes Parkinsons. There are data to back this in the book, too.

In Chinese medicine, every illness is associated with blockage of Qi. Depending on where in the system of meridians (the channels in which Qi flows) the blockage occurs, symptoms may appear anywhere in the body and manifest themselves differently. And yes, Chinese medicine has a concept of five elements that ties those blockages to the personality types. In a way, Chinese and Western medicines are two parallel conceptual systems describing the same imbalances in body and mind in their own ways.

 

[Mr Hip Guy]

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.

Yes it is quite hard to watch and very disturbing.

Like I said in my original post, I don't think it's coincidence that I've gone down this path of worry about this (and dystonia) since watching that doc.

Btw, on Michael J Fox, you can look back and see how "twitchy" he was even when he was a young man. My understanding of Parkinson's is that it doesn't manifest until...well, until it manifests. You don't exhibit symptoms like MJF did before you officially come down with. But the guy simply could not stand still. That lends some credence to an idea it could be mind/body and just a part of his personality.

 

[Booble]

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.

OMG Brian's Song and Love Story. Same here.

My mother had a very old medical dictionary on the bookshelf when I was growing up in the 1970s. I would read through that thing and nearly every condition had: Prognosis: Death.

I still have to abort mission when reading a book and suddenly a character has terminal illness.
Why would anyone want to read about that???

 

[Fal]

I seem to recall reading that MJF believes his Parkinson’s began due to his alcohol and drug abuse in his 20s, although he can’t evidence this he believes this definitely contributed to it.

 

[JanAtheCPA]

I seem to recall reading that MJF believes his Parkinson’s began due to his alcohol and drug abuse in his 20s, although he can’t evidence this he believes this definitely contributed to it.

Ah, there you go. Substance abuse goes hand in hand with emotional distress and repression ... So what we have is not direct causation - after all, plenty of people with Parkinson’s did not abuse drugs or alcohol. But the substance abuse builds the case for an emotional/mindbody cause by association.

Didn't Dr Mate include Parkinson’s in When the Body Says No?

 

[Fal]

A few snippets aswell from where it may have began for him…


Parkinson's disease
In 2002, an investigation was launched into Leo and Me after an unusual cluster of Parkinson's diseasecases was noted among former cast and crew members of the show. Fox and director Don Williams were among the four with the disease, along with a writer and a cameraman.

When asked about the cluster by Howard Stern in a September 25, 2013, interview on The Howard Stern Show, Michael J. Fox stated, "Believe it or not, from a scientific point of view, that's not significant."Donald Calne, a Vancouver neurologist, said the incidence of Parkinson's in society is about 1 in 300, but that four of the 125 people on the Vancouver set of Leo and Me developed the disease. Calne said, "It could be coincidence. But it's intriguing, it might be something they were exposed to."

Also what he said to the guardian…

He told Hadley Freeman of The Guardian in late 2020: "I can think of a thousand possible scenarios: I used to go fishing in a river near paper mills and eat the salmon I caught; I've been to a lot of farms; I smoked a lot of pot in high school when the government was poisoning the crops. But you can drive yourself crazy trying to figure it out."

 

[Mr Hip Guy]

Wow, isn't that interesting how they seek all kinds of answers (poisoning by external chemicals) instead of considering the possibility of the "cluster" of them on that movie set were also exposed to each other's neuroses/personalities.

Stern doing the interview makes me wonder if he saw the possibility of TMS there too.

 

[Fal]

He was also filming day and night during the 80s, family ties during the day and back to the future so coupled with little sleep, alcohol/drug abuse it’s probably been a major factor.

A naturopath once did say to me that there’s increasing evidence of poor gut health leading to it, but that springs to mind, TMS can cause digestion problems like it did for me so it is plausible.

 

[jhc1013]

I’m late to these posts, but was mesmerized by all this information. I lost my sense of smell (and most taste) five years prior to being diagnosed with Parkinson’s Disease (2019) I can look at all known PD symptoms and, if I go strictly by western medical info it would be reasonable to determine that I likely had PD for at least 5 years prior to loss of smell. Anosmia (loss of smell) is one of the very first symptoms BEFORE people get a firm diagnosis. I also had tremor in my right hand, constipation, anxiety, insomnia and apathy. Finally getting a PD diagnosis was such a relief…or so I thought. It was wonderful to have a medical reason for all that I was suffering. Now, in summer 2024 I have weaned myself off ALL 7 medications that had been prescribed, I have changed my diet to eliminate most carbs and sugar, and I exercise so much that my neighbor thinks I’m training for Ironman. I should note that I’m 70 and not overweight. I am 100% certain that I have TMS and have been reading Alan Gordon’s book and everything Sarno has written. My tremors have nearly ceased and my biggest complaint now is left leg/piriformis/calf pain that i am certain is TMS. Moral of this story - I have been afraid of every ailment and more so as I have aged. I have reset my mind, and my body, and I no longer go to a physician unless I must. (had pacemaker implanted recently and didn’t think it wise to do that in my garage). I stopped all “PD support groups and would never watch the MJ Fox Documentary. Some research showed me that he is NOT the poster child for Parkinson’s as he has MANY issues unrelated to that. Once again I’ve written War and Peace.

 

[learningmore]

Interesting. My Dad had Parkinsons. He did not have a strict up bringing at all, and was mostly pretty flexible, creative, no-controlling, encouraging, and loving. Dad was a WILD CHILD who was constantly (and deservedly) in trouble a lot, but even that was pretty lenient because he was the apple of his mother eye. His Dad tried to be more strict, but without any luck. Dad did start work very young, at the age of 10 (I started at the age of 12...we just liked to have our own money), but it wasn't uncommon when he was a kid to work that young.

They didn't say only not being allowed to express yourself produces this.

Technically, in the book, there were 4 causes of Parkinsons. One is foot injury (this is related to qi, the body doesn't realize that the foot is injured and never allows it to heal, and once the foot heals, things get better). At any rate, it's not simply a difficult childhood that can cause it, but any sense of not feeling like you can be yourself. Maybe feeling like he NEEDED to start working at 10 did it? Who knows? I'm not sure if it's nothing or any of those. That book changed my consideration of Parkinsons, though. Certain things in the book were like someone was stating my most private thoughts. Like I'm the only person who actually thinks this crazy stuff. It actually horrified me that I might get Parkinsons. Some of the things it talked about were behaving from the perspective of giving yourself commands rather than moving naturally. The way I perceive the world in my crazy, self-diminishing way, was essentially spelled out in that book. The likelihood of someone randomly forming those thoughts, and publishing them in a book, and having them match the way I think seems rather low. I can quite literally see my dad doing that, and as I watch him every day, I feel like lots of what he does, as he is the most kind person I have ever met, is done from the point of NECESSITATING doing it, or being a goodist.

I'm sorry your dad experienced this.

 

[learningmore]

I’m late to these posts, but was mesmerized by all this information. I lost my sense of smell (and most taste) five years prior to being diagnosed with Parkinson’s Disease (2019) I can look at all known PD symptoms and, if I go strictly by western medical info it would be reasonable to determine that I likely had PD for at least 5 years prior to loss of smell. Anosmia (loss of smell) is one of the very first symptoms BEFORE people get a firm diagnosis. I also had tremor in my right hand, constipation, anxiety, insomnia and apathy. Finally getting a PD diagnosis was such a relief…or so I thought. It was wonderful to have a medical reason for all that I was suffering. Now, in summer 2024 I have weaned myself off ALL 7 medications that had been prescribed, I have changed my diet to eliminate most carbs and sugar, and I exercise so much that my neighbor thinks I’m training for Ironman. I should note that I’m 70 and not overweight. I am 100% certain that I have TMS and have been reading Alan Gordon’s book and everything Sarno has written. My tremors have nearly ceased and my biggest complaint now is left leg/piriformis/calf pain that i am certain is TMS. Moral of this story - I have been afraid of every ailment and more so as I have aged. I have reset my mind, and my body, and I no longer go to a physician unless I must. (had pacemaker implanted recently and didn’t think it wise to do that in my garage). I stopped all “PD support groups and would never watch the MJ Fox Documentary. Some research showed me that he is NOT the poster child for Parkinson’s as he has MANY issues unrelated to that. Once again I’ve written War and Peace.

You came off parkinsons medications?

 

[jhc1013]

You came off parkinsons medications?

I am very close to being off all medication. I am currently taking one, 25-100 Carbidopa/Levodopa per day. I had been taking 6 tablets per day. The medication all has side effects and it becomes very difficult to distinguish those from PD symptoms. Many of the people with PD whom I know just don’t want to (or are unable to) do the strenuous and constant exercise needed to deal with the motor and non-motor symptoms. I don’t blame them. This obviously doesn’t work for everyone. But I got tired of being turned into an unemotional zombie by physicians.

 

[learningmore]

When you say constant exercise, do you mean programs guided by doctors? My dad has PD and is doing exercise basically endlessly, Speak Out in the morning and evening, lung capacity, other exercise programs, etc.

He's on a low dose of C/L twice a day.

 

[Mr Hip Guy]

’m late to these posts, but was mesmerized by all this information. I lost my sense of smell (and most taste) five years prior to being diagnosed with Parkinson’s Disease (2019) I can look at all known PD symptoms and, if I go strictly by western medical info it would be reasonable to determine that I likely had PD for at least 5 years prior to loss of smell. Anosmia (loss of smell) is one of the very first symptoms BEFORE people get a firm diagnosis. I also had tremor in my right hand, constipation, anxiety, insomnia and apathy. Finally getting a PD diagnosis was such a relief…or so I thought. It was wonderful to have a medical reason for all that I was suffering. Now, in summer 2024 I have weaned myself off ALL 7 medications that had been prescribed, I have changed my diet to eliminate most carbs and sugar, and I exercise so much that my neighbor thinks I’m training for Ironman. I should note that I’m 70 and not overweight. I am 100% certain that I have TMS and have been reading Alan Gordon’s book and everything Sarno has written. My tremors have nearly ceased and my biggest complaint now is left leg/piriformis/calf pain that i am certain is TMS. Moral of this story - I have been afraid of every ailment and more so as I have aged. I have reset my mind, and my body, and I no longer go to a physician unless I must. (had pacemaker implanted recently and didn’t think it wise to do that in my garage). I stopped all “PD support groups and would never watch the MJ Fox Documentary. Some research showed me that he is NOT the poster child for Parkinson’s as he has MANY issues unrelated to that. Once again I’ve written War and Peace.

Thank you for this, I read every word.

Since starting this thread about 6 months ago, I've pretty much dropped all of my suspected PD symptoms to the point it occurred to me just the other day that they were all gone. PD symptoms, like so many other TMS-derived ailments, was hopefully just a ship passing through the sea of my mind, hoping to find a harbor to drop anchor. I'll continue to low-level worry about it, but hopefully I can keep it in its TMS-place.

Anyway, thanks again for posting and very happy to hear you've managed to wrest control of this for yourself.

 

[dystonicrunner]

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?

I could have written many of these things, especially the "Idea of not being in control of my body particularly frightens me" and the value running has to me. I always identified my biggest fear in life is being paralyzed. And it came true when I ended up in a mobility scooter and couldn't care for my family or dog. That is my core fear of "it happening again."

My onset was also sudden (overnight and worsened progressively over a week) but looking back I had an "episode" of dystonia where it only occurred on the treadmill, not every run, for a period of about a month. This was at the very beginning of COVID in 20200, where I was changing jobs, had a 1 year old, and our life was disrupted as we had been planning on moving states and everything was not clear what was going to happen. I also had spend about 15 months doing mostly treadmill running because I had had a baby and that was the only way for me to get my run in. I do think that I also learned some bad gait patterns and it aggravated my "metatarsalgia" which I didn't know at the time was arthritis, because of how my foot strike is different on the treadmill and I take many more steps per mile. I also look at it now that maybe my brain was trying to avoid the pain of that by changing how I ran, or even stop me from running as I'd have to stop and walk. Once I had changed jobs and was working from home, I stopped running on the treadmill and poof the dystonia didn't come back until 4 years later when my foot surgery was the trigger.

Like, you, I also experienced then and now with both my walking and running, that I always get better the more time I go. For instance, if I walk a 5k, I might have the most symptoms when I first start out and then I get smoother and faster as I go on. So my 1st mile may be 15 minutes a mile, then the 2nd is 14 minutes a mile, and then the 3rd is 13 minutes a mile. The times I have tried running, I always notice I'm okay for the first 2 minutes, and then all of a sudden I start to have my ankle turning. All of a sudden my mind is like "OH WAIT, we can't do that anymore, remember you had this painful arthritis and that surgery and you had me in a calf boot for weeks?" But if I stick with it through about minute 6 (just slow down and be careful or take a short walk break) then it gets better. Maybe my body is like oh okay, we have survived, maybe we can do this. If I stick for longer (10-15 minutes) it gets even better.

I had zero idea who Kara Goucher or what RD was was until after I was diagnosed and then I read her story and I was like well, I'm ****'ed. If an Olympian with all of the resources and connections in the world cannot recover, how can I? That was not a good day and ingrained the fear.

 

[Mr Hip Guy]

I hear ya. The bad news is I still haven't managed to beat this particular TMS symptom. I still have issues beginning a run where my legs seem to want to go this way and that, and are stiff and weird feeling - it really feels like I am somehow holding back and resisting the running motion.

The good news is it still goes away in less than a mile and doesn't affect any of my walking or other exercise. Once I get through that initial 10min or so I can still run fast and smooth. But I clearly have some kind of mental block with running that I have yet to overcome.

For now I just try not to worry about it anymore and accept that the price I pay for participating in this activity is a 10min period of wonkiness. Heck, most people recommend 10min of warmup for most physical activity anyway.

 

[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.

Mr. Hip Guy…first, as someone who has been dealing with Parkinson’s for 15 years now, you need to know that Michael J Fox is NOT the poster child for this disease. He jas had alcohol issues, traumatic brain injury and other issues. And the wild swings of his head and arms is called dyskinesia and is caused by being on Levodopa for so many years. Next, you need to know that in my 15-plus years with the disease I have never experienced any of the symptoms you mentioned. Also, there is no published evidence that PD is hereditary. I do have TMS issues to this day, but I am able to separate that issue from my chronic disease. If you met me for the first time today you wouldn’t know I have a chronic disease. So take heart and put this particular worry behind you. If you one day permanently lose your sense of smell and taste, then go see a neurologist. That was my first non-motor symptom and occurred years before a formal diagnosis. Be well and live life to the fullest. Jim