Scooter Saga

When I worked outside the home, I was never a good homemaker–Earl, Heidi, and Jason would be the first ones to agree.  Fortunately, that was never important.  I  wasn't bad, just not skilled.  While the family appreciated order, I couldn't create or maintain it.  I have to confess that while I could gaze enviously at a neat drawer, my house was full of "junk" drawers and closets.   Then I stopped working outside the home due to the progression of my Ataxia.  Trouble was, I was no better able to work inside the home.  They say nothing is more dangerous than a woman at home with time on her hands.  I get it now–scary, to be sure.  I enjoyed being able to focus on one thing at a time–something I never had the time or inclination for pre-retirement.  But when I turned my focus on the house, armed with a computer, I began my transition from a laid-back person to an organizational nazi.  If I couldn't clean, at least I could ( shudder ) clear .  Earl headed for cov

I didn't think I could indulge in one of my favorite past times and scoot too, but I can.  One day, Skeeter and I were out, music from my IPhone blaring, when it came to me.  Since I was an audiobook addict, I could as easily "risten" to a book as well as play music while I scooted.  I could even scoot to a park, sit under a tree and switch from music to a book!  Maybe I'm not the brightest crayon in the box, but things come to me eventually.  As with music, I have to make certain any audible book content meets the appropriate criteria.  It can be like reading out loud, but headphones help, preventing you from disturbing or offending people. Disclaimer:  I never use headphones on a moving Skeeter.  It's nice to be read to, but I need to use all my remaining senses for a safe scoot. My addiction to audiobooks began with the nystagmus (fluttering eyeballs) common in Ataxia.  I don't know if SCA causes me to lose visual focus from optic nerve involvem

Skeeter alerted me to an eyesight problem when I realized there were times when I had to navigate precisely while scooting.  I found myself dealing with my deliberate mono–vision by closing one eye in order to gauge available distance.  How much space was between Earl's car and my car, and between the telephone pole and the edge of the sidewalk?  How much asphalt before the road dropped off into dirt?  It was like my old "contact lens" days when one lens isn't in–blurry around the edge (not exactly double vision) .  Hmm, cataracts (at that time in life) , diminishing acuity (OK,  predictable... ) , Ataxia (a typical symptom for some people) ? Around 1993, I had radial keratotomy (RK) after years of wearing contact lenses or coke bottle glasses for being legally blind.  The surgeons gave me one eye for reading and one for distance (mono–vision) .  It was a good solution for someone in the 40s.  But, as I aged, the difference between the eyes was too significant.

Ada 1918–1996 Mother's Day started me thinking about how this began (to my knowledge) .  I have Spinocerebellar Ataxia, Type 6 (SCA-6).  There are many types that vary in onset, cognitive involvement, and other things that are of no interest to most people.  I now know that I got the autosomal dominant gene from my mother, who unwittingly passed it along to me.  Looking back, I recognize the ataxic signs began in her mid 60's--the gait, the speech, etc.  After my initial diagnosis in 1997, I was angry with her for doing this to me (I didn't care that she never knew) .  "Come on , Ada."  I thought I had just inherited her boobs, skinny legs, and smart mouth.   But she wasn't much of an information-seeker, and consequently, didn't realize she had Ataxia.  Ada just thought...  (actually, I have no idea what she thought) . Although she and I were close, Mom went to great lengths to deny her SCA ataxic signs.  She knew something was wrong, but backed

You'd think, given what Ataxians have to cope with, handwriting wouldn't be such a big deal.  But, like speech, it's often one of the more obvious signs of a SCA (spinocerebellar ataxia) . Even as a southpaw encountering a 3rd grade teacher who thought everyone should be right-handed  (my mother hit the ceiling) , I used to have beautiful penmanship.  I even took a calligraphy class in college.  Although, lettering vertically to maintain the correct angle, did look pretty strange. With my newly gained calligraphy skills, I hand lettered my wedding invitations (all 12 of them) .  Hey, it was the counter culture 70's and the wedding was in my parents' backyard. X marks the spot Now chicken scratch and illegible overwriting is the norm even when I slow down and try hard.  The proverbial  X   (in lieu of a signature) requires more fine motor coordination than I have.  Another issue is the interminal slowness of writing.  No one believes me when I warn them,

“Speak the speech I pray you as I pronounced it to you, trippingly on the tongue.” Hold that thought, Hamlet.  I trip on my tongue a lot! Speech for an Ataxian is a huge issue.  Slurred speech is often the first and most obvious outward symptom of Ataxia.  That's another reason I look forward to spending time on a scooter.  Skeeter doesn’t engage me in conversation, or hear and comment on my slurred speech. She just moves down the road in silence.  I prefer to be around family and friends who know it’s just impaired coordination and not dementia, but Skeeter’s also very understanding. However, I was missing chats with my neighbors and friends when I scooted by. Being able to visit was one of the initial attractions to scooting. My cousin said I sounded like a hearing impaired person; that's probably a good description. I had to realize my problem was reluctance to speak  (more  under my  control)  avoiding embarrassment, as well as the slurring that comes with

Hose?  Washer?  Not a clue why There are times when Skeeter can't bail me out.  She stays in the garage hoping I won't notice her until the current crisis has passed.  She's better at calming than rescuing.  For that, I need an animate friend. My friend Jackie and I have a standing yoga date Tuesday morning at my house.  We're ready to start, when I hear an unfamiliar sound emanate from my washing machine.  I was running a small load before the housekeeper came and expected to hear "washing" sounds in the background.  This was a different, ominous "running" sound.  Jackie went to check for me and, sure enough, water was gushing all over the tile (Thank God) laundry room floor and the hardwood (uh-oh) hallway floor.  The good news is that there were two big towels handy and Jackie threw those down.  The bad news–this disaster required more towels and they were outside in the pool room.  Jackie went out to get them, while I stayed uselessly in t