Scooter Saga

      It's fascinating what children and their literature can teach a person with disabilities.  Caregiving is a family affair and I wanted to make sure that I was paying attention to the concern s of the grandchildren, as well as my own.  Although Sarah & Kyle, Zoe & Lexi aren't involved in actual care, they still have to make accommodations for my lack of mobility.  I wanted to know how having a relative with ataxia impacted children, so I asked.  My experience with children had been that they were so refreshingly honest.*  Having access to four children of different ages, personalities, and interests seemed like a golden opportunity to get some varying views.  I realized that probing into feelings can be confusing to children, so I was ready for whatever they came out with. From Sarah, age 11: Well, I have a few more chores, but otherwise, it's OK. Seriously Grandma, it's OK. From Kyle, age 8: ...

Before my ataxia was diagnosed, I could effectively multitask–at least I think so.  Anyway, I could have more than one ball in the air, welcome a conversational interruption, and return to my prioritized tasks.  After my diagnosis, I had admit that my brain couldn't do that as well. I dropped balls, jobs, words, to-dos—you name it.  Ataxia means loss of coordination.  That meant it was high risk to do more than one activity, like walking and talking.  A lot of people wrote my behavior off to rudeness rather than focus.  Maintaining focus on the matter at hand became important in a way it never was before. Now, it actually involved (gulp) safety.  I found myself sidetracked by interruptions.  It was so easy to get distracted from the task at hand and then forget what the task was.  Ataxia, aging—who cares?  That was when I realized, like everything else, I was somewhere on the Distraction Spectrum .  Some days I am on the low end a...

I search Spinocerebellar Ataxia (SCA) websites for recommendations, current research, and disability issues, etc.  They often help to distinguish between existing theories, legitimate studies, and opportunistic scams.  There are many people all over the globe like me.  People with ataxia tend to be a positive, but realistic group of information–seekers and givers (not always, but generally) . The periodic venting always stimulates an empathetic discussion that never starts with the words 'At least...' I find the discussion helpful, as well as enlightening.  It's better to be primarily hopeful and not hopeless, but continuous positivity just isn't my style.  I'm happy to have the occasional solitary 'Pity Party'*. Although there are over 40 different types of ataxia, the issues confronting affected persons are similar.  Since ataxia is characterized by a loss of coordination, often people's balance, gait, and speech is most noticeable to the uniniti...