How does having SCA3 ataxia affect walking, running, and riding a bicycle? I will describe my own experiences.
My primary physical SCA3 issue, reigning above all others, has been vision degradation, due I suppose to my sluggish eye muscles, which in turn has been impairing my vestibulo-ocular reflex, which means my inner ears (vestibules) and my eyes (ocular system) do not work well together.
Then, there’s degradation of my overall coordination, where coordination refers to the complex sequences of muscles firing that result in (e.g.) walking.
How does balance fit in? What is balance, anyway? (Howard Jones sang about a similar question in 1983.) I’ve split off the answer to this question into a separate article.
Here’s a brief look at how things have progressed for me:
2003 (age 35)
I consider age 35 to be my first year with distinct SCA3 symptoms, though my proprioception started noticeably deteriorating at age 33 or so. In 2003, I noticed a distinct sloppiness in my coordination when walking; I lost my ability to walk gracefully. It became difficult to perform small maneuvers, such as walking up to a car door, slowing, stopping, opening the door, taking a few small steps backwards, and so on. Orchestrating such maneuvers felt unnatural and complicated, mistake-prone, and not possible to do on autopilot.
I started jogging in 2005, not because it was easy, but because it was hard. I did it as much for brain exercise as for physical exercise.
Also around this time, I discovered that I could no longer bowl (I landed on my butt every time I released the bowling ball), and I could no long play volleyball (I landed on my butt every time I hit the ball with a forearm bump).
2006 (age 39)
I had stopped riding a bicycle a few years earlier because I thought it was the responsible thing to do—to stay off the road when impaired. Thinking that it was better to keep my brain challenged, and especially at the encouragement of my wife, I started riding regularly again in 2006. I continue to ride in 2014 at age 47 even though my riding ability has been getting steadily worse all these years.
I’ve devoted a separate article to bicycling with SCA3, where I go more into what is means to have an impaired vestibulo-ocular reflex. See here.
2012 (age 45)
At the end of 2012, I stopped jogging. My ability to jog became incrementally worse as the years went by, until I was only able to barely hobble slightly faster than walking. Now in 2014, I feel as if I were to take one running step, I would collapse immediately, as my legs simply wouldn’t respond properly.
2013 (age 46)
When I stopped jogging, I was still able to walk for exercise. I used a walking stick as a balance aid (which I have used since 2011), and I was able to get into a rhythm. By the end of 2013, I could no longer walk for exercise, due to lack of coordination. My legs simply no longer have the coordination to walk efficiently. I can get from point A to point B, but I need to do it slowly and meticulously, and it’s uncomfortable and awkward enough that I cannot use the movement as beneficial exercise. My feeling is that walking is now bad for me.
Here’s a walking stick I’ve been happy with, when traveling and wanting to be able to put it in a backpack:
2014 (now, age 47)
The circular motion of pedaling a bicycle is not affected by my degrading coordination. I’m almost entirely fine when riding a stationary bicycle, which I do for daily exercise instead of walking. And I still ride on the road regularly. Indeed, riding a bicycle is easier than walking!
Again, I will be devoting a separate article to bicycling with SCA3. See here.
Checks and balances
Here are a few more thoughts on becoming symptomatic.
In your dreams, pal
I have had recurring dreams my whole life that I think are similar to a vast number of people’s, in particular dreams where I try to run but can’t, I try to throw a baseball but can’t, and I try to speak but can’t (in different dreams, not all at once!). My experience with ataxia feels exactly like that dream feeling of trying to run but only being able to barely move. That is the feeling of sloppy coordination that I refer to: I know what needs to be done and expect it to happen properly, I just can’t do it—not because of poor balance but poor coordination.
Balance is never an issue in my dreams. Granted, in reality, when my center of mass is off-balance, I suppose it doesn’t matter how it got off-balance—I’m still off-balance. And there are things I can do that give me additional balance problems, such as turning my head while walking. Thus, I do have a fear of falling, with an occasional loss of balance. It may be that in a few years, I will have forgotten my 11+ years of worsening coordination, and all I will have left is my inability to balance, and I will no longer care about being precise.
Here’s trying to focus on you, kid
My vision and vestibular problems—being my primary issues since 2006 at age 39—are much more prominent in me (it seems) than in others with SCA3, and certainly they contribute to difficulties while walking. My vision problems are most prominent when my vestibular system is heavily involved and I’m moving and simultaneously turning my head, and when precision of vision matters, such as while reading. I try to avoid looking around when walking, and I stopped driving in 2012 at age 45.
A few more things
Carrying things used to be easier than walking empty handed. Presumably, this was because it improved my ability to balance my center of mass when I was able to move around some extra mass external to myself, similar to a tightrope walker carrying a pole. Now, carrying things amplifies the sloppiness of my movements and makes walking even more difficult, though it still helps if I’m anchored well and not moving.
A disconcerting aspect of getting around now is that everything has to go just right. If the slightest thing goes wrong, my house of cards comes quickly tumbling down. For example, if I step on a pebble unexpectedly, stub a toe on something, or do anything that disrupts my rhythm by even a fraction of a second, I have to find a way to pause and recover before resuming. There’s a huge amount of mental stress associated with being in that frame of mind, which I get into in another article. See here.
Another disconcerting issue is what I call random denervation in my legs, which is when I set one leg forward and the muscles fail to contract because the nerves don’t fire (that’s my perception of what happens, at least). The few times I have outright fallen have been the result of this. If I’m not extremely attentive and this happens, it causes an immediate tumble on my part; instantly, it’s Black Hawk down. Again, there’s a huge amount of stress associated with trying to be ready for this situation with every step. See here.
Walking up (or down) a single step, such as near a door threshold, seems like it should be easy enough, but it’s not. It doesn’t matter how earnestly I prepare for the situation, I simply don’t have the coordination necessary to keep my center of mass positioned correctly when taking my body through a single upward or downward step. Though I used to be able to compensate and keep things “in check” with extra mental energy, I can no longer do that. Now I must hold on to something, such as the door jamb.