Parkinson's

[Mr Hip Guy]

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

Bless you and thank you for your post, I appreciate it.

 

[dystonicrunner]

Yes the key is don't worry about it and it works itself out! I will say that other than the very obvious ankle contraction, a symptom is that I can feel like my left leg is almost running through water instead of air (compared to my right, there is like this slight resistance) or its being held back. I have recently though been thinking that that isn't necessarily a symptom of dystonia like my ankle, because it feels and acts different, but might be involved with just general muscle tension (like my thigh is a rock, my ankle is never like that) and some biomechanics patterns I've gotten into with my just compensating for the ankle and foot for so long. I've also always felt my leg "hesitancy" is my body is still afraid of putting my foot down because it was painful for so long and still can be.

 

[Mr Hip Guy]

I'm back in this thread having been shaken by a particularly bad episode of dystonia on a run earlier today. Is it coincidence that I'm also dealing with some other TMS symptoms now as well? (detailed in my Hip Surgery thread) I don't think it's coincidence.

But a google search led me to this woman and her Youtube channel. While she hasn't appeared to have cured her running dystonia the way she describes anxiety around running, particularly around doing races and speedwork, is spot-on for me. I put so much pressure on myself to "measure up" in races and completing workouts (always comparing to my prev times doing the same workouts), that it's crippling. It usually affects my sleep the night before. I used to credit "nerves" as a good thing (before a presentation or before a competition) because it means "you care" - but there is such a thing as caring too much. I thought I was past this but I am clearly not. Back to the basics for me.

Anyway here is the lady's video:

 

[TG957]

I'm back in this thread having been shaken by a particularly bad episode of dystonia on a run earlier today. Is it coincidence that I'm also dealing with some other TMS symptoms now as well? (detailed in my Hip Surgery thread) I don't think it's coincidence.

But a google search led me to this woman and her Youtube channel. While she hasn't appeared to have cured her running dystonia the way she describes anxiety around running, particularly around doing races and speedwork, is spot-on for me. I put so much pressure on myself to "measure up" in races and completing workouts (always comparing to my prev times doing the same workouts), that it's crippling. It usually affects my sleep the night before. I used to credit "nerves" as a good thing (before a presentation or before a competition) because it means "you care" - but there is such a thing as caring too much. I thought I was past this but I am clearly not. Back to the basics for me.

Anyway here is the lady's video:

To all the athletes, overachievers, caretakers of everybody except themselves: read Self-compassion by Kristen Neff and stop killing yourself by way of TMS!

 

[Fal]

I'm back in this thread having been shaken by a particularly bad episode of dystonia on a run earlier today. Is it coincidence that I'm also dealing with some other TMS symptoms now as well? (detailed in my Hip Surgery thread) I don't think it's coincidence.

But a google search led me to this woman and her Youtube channel. While she hasn't appeared to have cured her running dystonia the way she describes anxiety around running, particularly around doing races and speedwork, is spot-on for me. I put so much pressure on myself to "measure up" in races and completing workouts (always comparing to my prev times doing the same workouts), that it's crippling. It usually affects my sleep the night before. I used to credit "nerves" as a good thing (before a presentation or before a competition) because it means "you care" - but there is such a thing as caring too much. I thought I was past this but I am clearly not. Back to the basics for me.

Anyway here is the lady's video:

I know the feeling on wanting to be better but have some self compassion. Does it really matter if you don’t have the best race? No one else is going to care where you finish or how you perform so why should you? Be competitive sure but live in the moment and enjoy without putting pressure on yourself!

 

[dystonicrunner]

Anyway here is the lady's video:

This is my friend Maria. She is great, but I hate the algorithm as you didn't come across my YouTube channel that has like 100 videos on runner's dystonia. Damn it. I hate YouTube. It's Running with Dystonia and my channel handle is dystonicrunner. You think SEO would work but nope it doesn't. Or maybe you saw mine as I'm sure her videos are better than mine as I'm a clear mess in many of them but it's my honest recovery with the up and downs.

She is doing great now. Her videos are from a few years ago and she is virtually cured. There are others like her who are also back to running marathons and full Ironmans.

I am also doing great compared to where I was 2 months ago before I fully embraced TMS. Not cured and I've got a long way to go, but May 1st I could barely walk my dystonia was so bad during a flare and thinking I was about to be back in a mobility scooter. But going full TMS I crawled out of it, and here I am at Disney World with barely any symptoms when I'm walking and running again. The best I've done in a year and a half hands down. Stop thinking about Runner's Dystonia as some awful neurological disorder. It is another manifestation of your TMS I'm 100% sure of it.

 

[Mr Hip Guy]

Thank you all for your responses.

I've been dealing with this now almost 2 years (fall of 2023 is when I first started noticing it) and while I know it is TMS, none of my usual methods for resolving TMS symptoms is having a dent with this.

a few comments on what I see are things that are different about this:

- My experience with TMS symptoms has been pain, chronic pain, and occasional oddball things like tightness (crick in the neck) or aural migraines as well as things like hiccups. For all of those, there is nothing that is impairing movement, no outward physical sign of an issue. With pain and tightness symptoms I could simply ignore them, power through them, and then notice the result of the pain either diminishing or "moving around" - which is an easy "take" that the method is working and TMS is on the run. With the hiccups, once I realized they were TMS they simply vanished. Not so with this Dystonia. I've tried ignoring it now for nearly 2 years, it's done nothing but get worse

- I clearly see dystonia as TMS. I see it in Kara Goucher (who has a history of issues in this area with mental toughness, difficulty in competing - she's a poster child for TMS actually). Any of the clinical descriptions of dystonia (not just running dystonia but of the hands such as a musician would experience) all carry the hallmarks of TMS - practitioners being perfectionists, symptoms coming on suddnely, doctors trying to fix with nerve blockers such as botox injections etc. For myself, I can see this issue as being TMS related clearly as well - I have a classic type A personality, highly competitive, always setting goals such as Boston qualifier or certain time goals, always measuring myself against others, always measuring myself against myself - all of which has developed into alot of anxiety around this activity - clear breeding ground of TMS to step in and satisfy my inner voice to stop all this nonsense by "let's just make it where he CAN'T run." Even the fact it's referred to as a "death sentence for runners" is catnip for my TMS brain which loves this sort of catastrophic thinking and modeling.

So while my brain can see this is TMS, there is something blocking me from getting well. I'll need to try a new approach and experiment - like I said above, maybe I just need to get back to basics. i do like the advice above and appreciate it, diving down a path of self compassion is probably something I should experiment with.

 

[TG957]

One more time: "powering it through" may be exactly the reason why your symptoms do not go away. Read Kristen Neff on self-compassion. The other possibility could be that your athletic pursuits are done to avoid dealing with your emotional issues, and your mindbody rebels against it. Speaking from the personal experience of defeating dystonia.

 

[Mr Hip Guy]

your athletic pursuits are done to avoid dealing with your emotional issues

That's interesting, I'll give that some thought. I know that staying fit, running races, etc is not just for pure enjoyment - there are emotional ties too such as vanity, fear of being fat (i was a fat kid), measuring-up to others, etc.

One more time: "powering it through" may be exactly the reason why your symptoms do not go away

Exactly. That's why I recognize this particular TMS symptom as different from what I have dealt with before, I need a new method of combat.

 

[dystonicrunner]

Thank you all for your responses.
For myself, I can see this issue as being TMS related clearly as well - I have a classic type A personality, highly competitive, always setting goals such as Boston qualifier or certain time goals, always measuring myself against others, always measuring myself against myself - all of which has developed into alot of anxiety around this activity - clear breeding ground of TMS to step in and satisfy my inner voice to stop all this nonsense by "let's just make it where he CAN'T run." Even the fact it's referred to as a "death sentence for runners" is catnip for my TMS brain which loves this sort of catastrophic thinking and modeling.

All of this 100%. People with Runner's Dystonia probably are the most TMSy of TMS people. So much so, we (well not me ;-) ) are so mean to each other and non-compassionate to each other as we are to ourselves. I truly believe that I was so running ragged for years with all of my unconscious rage/fear and stuffing down my feelings/emotions (which is a huge part of my career) while continuing to operate on daily high aerobic activity (every run I did was maximum push because I had other sh*t to do, I never went for a "fun run" or to enjoy a run just for a run or even a mediations as @TG957 describes in her book) with restrictive eating and little sleep and high stress and all the other millions things my body literally said STOP, PLEASE STOP. And if you won't stop, I will stop you, so not only can you not run, you can't even walk. Because that is actually what happened.

 

[Mr Hip Guy]

She is doing great now. Her videos are from a few years ago and she is virtually cured.

So I realize I forgot to ask - what did she do? It just vanished one day?

I've been ignoring this, powering through, laughing at it, just accepting it as a "warmup period" - you name it, and it's pretty much just stuck around. I remain thankful that after a 10-20min it goes away, but it sure is weird that I used to be able to run smoothly right from the get-go at maybe 30-45 sec/mile slower than my usual pace, and now these last 2 years it's more like 2-3min/mile slower. It's just plain weird and my brain doesn't like it.

 

[dystonicrunner]

She didn't keep up with her YouTube.

My other RD friend's have a podcast which she spoke on I think at the end of last year. I spoke on it in February too even if I should have since I was so early in my recovery. She attributes her recovery to PRI which is a type of PT where you work on bodily alignment and functionality with the underlying understanding that human being are not symmetrical, and running every day.

https://runnersdystonia.buzzsprout.com/2370118/episodes (Unstoppable Strides: Navigating Runner's Dystonia)

It is on Apple Podcasts and Spotify.

Bree William's is good too. She is back to doing speedy half marathons. She did a 4 week recovery program in CA which is the only one in the United States and $$$.

None of these people of course know anything about TMS or acknowledge it. When I spoke in February it was before I found it. You will get mostly medical model recovery even though of course there is a lot talk of how stress or a stressful time plays a role. I looks like her most recent one was on the default mode network (maybe we are moving in the right direction) and psychedelics but I haven't listened to that yet.

I hit 5 miles 2 days ago which was the longest I've ran in a year and a half. Like you, the first 10-20 minutes not good. Especially minutes 2-6. Gets better as go for the 3rd mile, plus, at times symptoms are fully gone. I am about a minute or minute and a half slower than I was. But I have not tried consistently as I have in the past month this whole past year plus so I think I can get there. And cardiovascularly I lost it, VO2 max went from 62 to 47 in that time. I'm back at 49... yay!

 

[dystonicrunner]

Lastly, there is this thing where if people from RD recover, we don't talk about RD anymore and we quit the Facebook group and want to distance ourselves from that community. The trauma and negativity and reminders are not good.

 

[TG957]

So I realize I forgot to ask - what did she do? It just vanished one day?

I've been ignoring this, powering through, laughing at it, just accepting it as a "warmup period" - you name it, and it's pretty much just stuck around. I remain thankful that after a 10-20min it goes away, but it sure is weird that I used to be able to run smoothly right from the get-go at maybe 30-45 sec/mile slower than my usual pace, and now these last 2 years it's more like 2-3min/mile slower. It's just plain weird and my brain doesn't like it.

This is consistent with my experience. Every activity I engage in that I internally resent triggers an act of rebellion in my mindbody, either a physical symptom of some kind or anxiety. It usually takes 15-20 minutes of persistence to get through it. In my book, I compare it to the surfers breaking through the turbulence of the surf break, to reach quiet waters.

 

[Mr Hip Guy]

She attributes her recovery to PRI which is a type of PT

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.

 

[Mr Hip Guy]

This is consistent with my experience. Every activity I engage in that I internally resent triggers an act of rebellion in my mindbody, either a physical symptom of some kind or anxiety. It usually takes 15-20 minutes of persistence to get through it. In my book, I compare it to the surfers breaking through the turbulence of the surf break, to reach quiet waters.

Thank you. I have your ebook, I'll need to go back in and revisit those sections. I believe it was a year ago that I read it and my brain isn't great at retention unfortunately.

I do like that surfing visualization though - visualizations work great for me, usually negative ones are what I latch onto but I love finding positive ones.

 

[JanAtheCPA]

You can disregard me.

I'm going to take you up on that invitation for the purposes of this thread, because it's off topic and a bit of a hijack, but I'm going to address your rant elsewhere, @Rusty Red, so stay tuned...

 

[Rusty Red]

I'm going to take you up on that invitation for the purposes of this thread, because it's off topic and a bit of a hijack, but I'm going to address your rant elsewhere, @Rusty Red, so stay tuned...

I removed it. Shouldn't have posted it.

 

[JanAtheCPA]

Shouldn't have posted it.

The "where" is a small quibble, because it's def worth addressing, which we're doing...

 

[dystonicrunner]

[QUOTE="TG957, post: 160124, member: 4263"In my book, I compare it to the surfers breaking through the turbulence of the surf break, to reach quiet waters.[/QUOTE]

I forgot this from your book or did not draw the connection to my own experience of when I first start to run it gets hard but the longer I go it does settle. Great analogy!