SCA3 is often described purely in terms of its physical consequences and specifically balance impairment (which is slightly off-the-mark, as the root problem is coordination impairment), but my #1 and #2 issues for the last eight years of eleven years of symptoms have been vision degradation and mental exhaustion. These are outwardly invisible issues, and the skepticism of others that anything is wrong with me is palpable. My #3 issue has been general coordination degradation.
I think my vision degradation causes a direct and obvious link to having minimal stamina for doing anything that involves input to my eyes, which is almost everything except sleeping. Reading, studying to learn something new, playing the piano, writing at the computer, etc.—all these things are ridiculously exhausting. I half-jokingly refer to this as extreme attention deficit disorder. Sadly, everything that requires concentration is no longer enjoyable through this cloud of poor vision and mental exhaustion.
Over the years, I’ve compounded this exhaustion issue by finding I was able to hide from others a lot of the effects of my coordination degradation using mental energy—i.e., focusing and trying harder—at the cost of even more mental exhaustion. My coordination degradation is finally now more of an insurmountable issue that can’t be overcome by trying harder.
And “trying harder” is code for “trying to make it look like to others that nothing is wrong with me,” which is a weird instinct that kicks in possibly related to pride and shame. I might examine this more in the future.
Double trouble
In 2009 at age 41 (SARA = 2), a neurologist asked me if I had double vision, and I unhesitatingly said no. At the time, the term double vision meant nothing to me. Years later, in retrospect, I could say that beginning in 2006 at age 39, I already had what I was supposed to refer to as double vision.
In 2006 at age 39, it began taking large amounts of effort to focus my eyes and eliminate blurriness, yet I did what it took and was successful. I didn’t think of referring to this effort as having or being prone to double vision. It wasn’t until 2013 at age 45, sitting in an ophthalmologist’s office, that I first referred to my problem to an eye doctor as double vision.
Let me clarify that. I used to expend extra effort to focus my eyes if my head was turned. If I didn’t expend the extra effort, the result was what I called blurriness but not what I called double vision. Now, if I turn my head, then I see blurriness that I have learned to identify and refer to as double vision. No matter how hard I try, I cannot focus my eyes with my head turned. (Note: I stopped driving in 2012 at age 45 because of this.)
See here for more on the topic of double vision.
Running on empty
The consequences of using effort and concentration to overcome coordination degradation is low mental stamina and mental exhaustion. Since 2010, I’ve been describing the percentage of my mental energy it takes for me to compensate for coordination degradation as follows. This is of course totally nonscientific:
| Compensation effort |
||
| 2010, age 43 | 80% | In 2010, I described myself as spending about 80% of my mental energy to compensate for coordination degradation. I now spend quite nearly all of my mental energy trying to compensate, and yet I am not successful. |
| 2011, age 44 | 90% | |
| 2012, age 45 | 99% | |
| 2013, age 46 | 99.9% | |
| 2014, age 47 | 99.99% |
The vast unknown
What I describe as mental exhaustion caused by dealing with physical symptoms could be a form of cognitive impairment due to my degenerating cerebellum.
This gets into the three components of neurodegenerative diseases, namely the physical, cognitive, and emotional. Parkinson’s disease is readily acknowledged to involve these three components, but SCA isn’t. Is this perhaps because more people with Parkinson’s disease have been studied?
I consider this more in my next article.
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