Yes, I have an ataxia, of some unknown name, and some unknown origin, maybe it’s purely neurological, maybe there’s a little bit of neuromuscular stuff in there as well, maybe it’s neither, but I still have it. Alright, there needs to be a disclaimer here before I go any further, applicable to this post, and this entire site and content within: I am not a medical professional, I am not certified or licensed in any way to provide you with fact regarding anything closely resembling medical stuff. That being said, I will probably come at you on a somewhat regular basis with what is my opinion, and a reflection on my personal experiences, issues, and what I’ve done, or am trying to do myself to help them along.
There’s a lot going on with this topic, for me, so consider this a “Part 1” with continuation coming at a later time (Riding with ataxia, Kipp style: Par 2 is up!).
One of the fun things that I have, is an over abundance of spasticity. That may not be exactly the right word to describe what I’m getting at, consider an intention tremor as well, for fine motor skills, but also bulk muscle movements. Try this for an example, think if there’s been a time where you’ve had too much coffee to drink, maybe like 2 different quad mochas before 9:00 am and then sit down at your computer and try to operate your mouse, editing a picture, or clicking through pinterest, facebook, my site, for instance. You can move that mouse, but there’s no telling just how far past it’s mark it will land. It’s a control thing. In my humble, non-medical understanding of this, your brain is transmitting the signal to go, but the “how much” portion of the message get’s altered, or lost in translation, which can often end up with the muscle carrying out those orders from the brain and nerves, to fire with far more than necessary force, and often having trouble fully letting go of that command, staying rigid, and unable to relax. If you can harness this in some way, you have a lot of power to work with. When I do walk with my forearm crutches, for instance, I think my body tries to adapt, using unquantifiable forces in strong areas to make up for weaker areas. Changing direction instantly with any of that, doesn’t often go as planned, it takes extreme concentration to make that change, if it’s to be done in a more subtle, controlled manner.
I could be far worse off with how much this affects me, there are a lot of people with this thing I’m trying to describe, that are wound up so tight, that performing everyday tasks either requires everything they can throw at it, or they just can’t do mandatory mobility things altogether. How does this affect my riding? Well, my pedaling can be extremely “jumpy” for lack of a better word. The leg and foot push their little hearts out, then they have trouble stopping that when the direction needs to be changed back into a pull on the flip side of the pedal stroke, causing the circular pedal motion to stall, then all the sudden take off again in a jumpy, non-smooth movement.
There have been several things I have identified, and am now trying to work on to help this along. For “Part 1”: I know there is a lot of talk and research out there speaking to how you need to have a complete circular motion, pushing the pedal down, then pulling it back up, repeating, in a fluid motion. Well, I try focusing on the pulling part of this, but it just doesn’t seem to work for me, I get pedal stalls and jumpy movement.
Instead, when I am out riding, and I want to go faster than a leisurely pace, or want to climb a stupid steep hill, I have begun trying to continually concentrate on functioning my two independent feet as a hydraulic, two-piston system, one goes down, the other comes up in turn, the first pushing it’s guts out while the second has a chance to reset from it’s push, then prepare to take over again itself.
In the end, probably the same idea as the circular push/pull, but I find it hard for me to focus on getting my feet to switch gears, going from forward to reverse, pushing then pulling, in any sort of fluid movement. Rather, I think it has been helping my rides when I am fully acknowledging and using that “fire with all it’s got” spasticity, then I try to put my focus on the hand-off between the two feet pushing, one takes over with it’s all out push just long enough for the other to regroup then take over with it’s push, perpetuating the pistons moving up and down.
Make any sense at all? Stay tuned, “Riding with ataxia, Kipp style: Part 2” will try to be written up soon. For now, here’s my ride from today, amazing weather for February, follow me on Strava if you’re interested in seeing my previous rides:
8 Comments
Nice write up. Keep those Pistons pumping!
Kipp,
Seriously, way to utilize the Web and social media for something positive. You did a great job describing what it’s like to perform a simple function that most of us have taken for granted since we’ve been 4 or 5.
I respect you more than I let on, Kipp. I’ve witnessed your courage and positive attitude for almost 10 years now, and you truly are inspiring. Too many of us in our lives play the victim card, and while I’m sure you have your moments, you have battled this life altering ailment with determination and dignity. For that, I thank you, friend. You’re a great example of the man I aspire to be.
I love you man! It’s been too long since we’ve been out on the sand, not sure I can get Greta out there again in a tent after the Memorial Day monsoon we packed out of a couple years ago. Might have to make a day trip sometime, let a little air out of the FJ and make some more memories.
Thanks dood, looking forward to going for a ride with you someday! Thinking about the extreme off-chance of the NorCal @rideataxia ride in Davis, California, May 30. It’s a slim possibility, but would be fun to do considering it’s their closest to me ride planned for this year.
http://www.kintera.org/faf/home/default.asp?ievent=1130902
Thanks dood, looking forward to going for a ride with you someday! Thinking about the extreme off-chance of the NorCal @rideataxia ride in Davis, California, May 30. It’s a slim possibility, but would be fun to do considering it’s their closest to me ride planned for this year.
http://www.kintera.org/faf/home/default.asp?ievent=1130902
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