Wednesday, June 18, 2014

Generalized Dystonia with a side of Choreiform Movements and CrossFit

So, just as an aside as most people who only know me from around the gym or socially don't know that I have something called generalized dystonia.  I't's kind of like Parkinson's where its the same area of the brain (basal ganglia) and neurotransmitter (dopamine) except it's not progressive (but can "change over time") and it won't kill you (except in really rare cases, which I don't have).  It's common (third most common neurological disorder and we outnumber ALS and Huntington's Disease diagnoses combined) but not well known or really even well understood.  While I have one of the most debilitating forms of dystonia (generalized means it's from my head to my feet), most days I'm not symptomatic.  I live like I don't have a disability, which is a damn good deal.  But some days, I go from being like everyone else to a hot mess.  But, even then, I'm set up to deal with it pretty well on my own. 

On Monday, I woke up feeling like I hadn't slept at all.   I was exhausted, super grumpy and just feeling plain off.  While driving to work, I started to posture.  Great!  Just what you want at the start of the work week - a bad dystonia day.  

I postured all day long at the office.  By 3:00, I couldn't sit up in my office chair or use my keyboard or my mouse to work.  Finally, I felt my postures lessen by around 5:00 and an hour later I was okay enough that I could slowly make my way to the parking lot and then off to the gym.

Yep, the gym.  I wanted to get some video of me weightlifting while symptomatic.  As you can see, I'm actually pretty good by this point.  I look like a raging dork but, really, I'm only posturing slightly.

40kg snatch (I didn't finish my pull)


60kg clean


Kipping Muscle Up

But, check it out!  I don't display symptoms of my movement disorder when I'm doing movements I'm really familiar with.  How fucking cool is that?!?  Before and after, oh yes.  But not during.  I don't know if I've adapted (neuroplasticity) or muscle memory uses a different area of the brain - whatever it is, I'll take it.

And I'd just like to note some time frames here, too.  I developed dystonia in 2004 (tardive generalized dystonia as a result of an adverse reaction to an antidepressant). I didn't start CrossFit until 2008, and had absolutely no exposure to either weightlifting or gymnastics prior to this.  All of this stuff I learned after I developed dystonia.

My brain, while messed up, is also kind of fucking awesome. 

Wednesday, April 23, 2014

Lifestyle change is more than vegan eggplant lasagna or HIIT

This morning, I was listening to a CBC radio segment by Merelda Fiddler that profiled a woman pre and post bariatric surgery.  The report also included an interview with her surgeon.It’s quite interesting and I’d suggest giving the whole thing a listen.

The part that really got me thinking was the piece on what all goes into a situation where the body’s ability to regulate its energy systems becomes decidedly fuckered (notice I am refusing to make this a weight thing): 

“It’s often seen as a lifestyle disease, I guess, or a lifestyle issue…I think it’s more complicated than that, I guess is the bottom line and I don’t think we have a good handle on it. There is probably a lot of different things that contribute to people’s weight problem and we saw every sort of part of that in our clinic – whether that’s people that have to work two jobs, and they’re single parents or they’ve got a history of abuse in their past…”

How often have you come across statements like “diets don’t work” or something of that sort and then that “it’s a lifestyle change.”  And then whomever has stated this will invariably go on to talk about making a vegan eggplant lasagna from scratch from items in his or her organic garden or the benefits of HIIT or sourcing ethical seafood or whatever? 

Oooookay. 

That’s all very lovely, I am sure.  And perhaps whatever activity just noted can be included in a healthier lifestyle, yes.  But it’s not really the point.  It's not an actual change.  I will not even get into the interweb commenters that suggest one just simply move less and eat more and it’s as easy as that (fuck that interweb guy!). 

I thought I would make a list of everything that goes into it.  Or, at least, everything I’ve noted so far that’s gone into it.
  1. Hormone disregulation.  This include appetite and satiety hormones, insulin (insulin resistance, diabetes) and any thyroid issues.  Basically, how is your body talking to itself and then talking to you.  This can get really messed up.
  2. Other physical fun like chronic, systemic inflammation, gut disbiosis, low stomach acid or low nutrient absorption, undiagnosed food sensitivities or allergies.
  3. Information literacy skills.  Pretty hard to figure out what to do and how to do it if you are challenged to  access information or don't have the ability to read, understand and develop a plan.  All while being able to ignore this festering mess.  
  4. Financial resources to support purchasing higher quality foods, access to physical activities, access to mental health and counseling support, etc.
  5. Ability to cook and/or ability to access information or hands-on learning opportunities to develop basic food preparation skills.  There are also significant value challenges as this takes both money and time (i.e. I am not worthy of my own time and effort.  I am taking away time from family/friends/work to care for myself.).
  6. Ability to physically move (including basic mobility, strength) and the ability to access information and hands-on learning opportunities to develop basic movement patterns to support better mobility, improved strength and improved general fitness.  With this, again because it requires financial and time commitments, you also see value challenges (i.e. I am not worthy of my own time and effort.  I am taking away time from family/friends/work to care for myself.)
  7. Access to and resources available for mental health services.  Dealing with…  Food as drug.  Food as comfort.  Food as friend.  Food as security.   Food often is used as a tool for self-medicating for underlying mental health issues. And mental health issues often go along with fun stuff like insulin resistance and diabetes.  The health of the body impacts the health of the mind.
  8. Family and peer support.  Food and culture.  Food and food traditions.  Food and food connections with family and friends.  Building a support network is no easy feat.  Learning how to create new connections and how to navigate changing value systems with friends and family is so important.
  9. Identity reconfiguration. How we live day to day shapes who we are to ourselves.  Change how you live, and you change WHO you are.  This is then reinforced when physical changes alter how the world interacts with you.  Changing your idea about yourself is a scary, scary prospect but it is also a powerful tool for fundamental change.  I'd argue, fundamental change doesn't happen if you continue to see yourself the same way.
And, the best part is all of this is all interconnected.  Take physical activity.  It’s tied not only to identity reconfiguration, it’s also tied to family and peer support.  It helps to improve mental health and insulin sensitivity.  But, if you have hormone disregulation, your body is also telling you that moving is foolish.  It’s the same for every other thread.  At some point, they all intersect. 

I don’t really think there is a service or support out there that actually addresses all of these, either.  CrossFit came pretty close, for me, and I was able to piecemeal the rest of it together with a lot of trial and error.  All the while, I was cognizant of the advantage being relatively well educated and with a high degree of information literacy as well as (at the time) in a very comfortable dual income situation.  I’m not special.  I had resources.  And, so, I think this is why it’s rare to see individuals make systemic, life-long changes in terms of how they live in a way that allows themselves the ability to heal and see their body return to some degree of functionality.  It’s rare, but it isn't impossible.  I do believe that until there are multifaceted supports in place and accessible to all, it’s going to continue to be rare, however.

I would also argue, too, that it’s very difficult for someone who hasn't lived the experience to truly get exactly what all goes into it.  

Saturday, March 08, 2014

This is just fun









I felt this way about two snatches and one clean.  Thing of beauty.