Scooter Saga

The doc and the doll "Are you still working?"  Earl hears that from colleagues on a regular basis.  His answer is "Yes, three days a week.  Starting February 1, 2015,  I'll move to two days a week." April 1, 2015, he's officially retiring—sort of.  He may occasionally assist on cases, but he's done being the primary surgeon in the operating room.  April 1 is a bit later than his original date of June 2014, but no one believed that anyway*.  A year ago, retirement seemed premature. But it sounds more and more appealing to him as time goes by. One of his co–workers, who loves Halloween, created an 'Earl' doll for the occasion.  It was complete with surgical hat, prominent forehead, vascular loops, lab coat, big heart, and big nose on a lean frame.  That's my guy. I'm a bit apprehensive, but mostly admiring of Earl's gradual transition toward retirement*.   Ending a rewarding career must seem scary initially, but he has so

We were invited to our grandson's first theater performance*.  He had auditioned for a part (Kyle was a gremlin in the chorus) , been rehearsing all week, and was now excited to show off his thespian talents to family.  Being cast in a chorus has the advantage of having no lines to learn, fret about, and then forget on stage.  He had minimal peformance anxiety and was just required to be animated—a personal strength.   Objectively speaking, Kyle was the best gremlin. Kyle's Gremlin gang A traveling drama team comes into town with a pre-written play, the set, two adults, and lots of fundraising 'opportunities'.  In one week, they audition and cast the play, loan the costumes to the cast, rehearse, put on their performance, reclaim the costumes from the cast, and move onto the next venue.  It funds a regional program that promotes participation in the arts and is quite time efficient. The children learn commitment, discipline, and some drama appreciation throug

Michael and Sarah began the decorating process by hanging the over-sized ornaments on the driveway trees.  Our yard crew put up the backyard lights.  The fence and gazebo were festive platforms and didn't require anyone getting on a ladder–my seasonal mandate.  The outside was beginning to look a lot like...oh, never mind.  The focus turned to the house. I'm not the only dictator around here.  Since they were between homes, I was thinking the Tenison family would want something that was just theirs.  To that end, Heidi and Michael had purchased an artificial tree for upstairs. An upstairs tree is nice, but it was the live downstairs tree that Sarah and Kyle focused on. Jill, the Light Elf Niece Jill's task was to put the lights on, hang ornaments on high branches, and leave the lower half for the grandchildren to finish.  On return from school, Sarah and Kyle pointed out that there were decorations in their area.  I was instructed to thank Auntie Jill

Even though I can't do much with limited mobility, I do love the holidays.  I call in every means of assistance possible–family, friends, Sandie–to get the house ready.  I needed to let go of my tendency to direct the size tree, décor placement and timing of EVERYTHING. It was the time of year for my traditional ( big deal– two years) holiday scoot to pick out a Christmas tree.  Since we have young children in the house this year, I vowed to be less of a dictator.  But, I wanted to at least pick out the tree without input*.  I'm known for finding a tree more suitable for the White House but this year, I restrained myself, going for one under ten feet. The Sunday after Thanksgiving dawned beautiful and sunny.  It boded well for a scoot.  Unfortunately, it was also cold and windy.  After donning ten pounds of winter apparel, I left, waving goodbye to Earl, Heidi, Michael, Sarah, and Kyle.  They stayed inside and warm, collectively thinking I was just plain nuts to venture

      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:   OK.  Can I go play Minecraft? 

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 and some days on the higher end. My cognition w

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

"Earl," I asked one day, "do you need your computer?"  I sometimes use his because it has a bigger screen and, being closer to the wi–fi router, it can be a bit faster than mine. "Why–are you going to sell it?" "Ha, Ha.  Very funny." Earl calls me the "Craigslist Queen" (I also have an Ebay account) for a reason.  I'm not very remarkable on my feet, but when there is something to sell on a computer, I'm a whiz.  I'll sell anything that's no longer useful (to me) , rather than store it.  I've discovered, being home a lot, there is stuff here that goes unused, is taking up space, but may be of value to someone else.  I'm not immune, but look at the notion of 'saving things for a rainy day' as a trap just waiting to spring. We bought two scandinavian design youth chairs for our grandchildren.  We wanted them to join us at all indoor and outdoor dining tables, but didn't want a high chair look