New Wheels: The 'girls'

The evaluation

No, not those kind of girls.  As I said, the road trip convinced us that it was time to give up the walker and move to a wheelchair*.  Earl and I knew it was coming, and had, in fact, been talking and researching since the beginning of the year.  When we got back from our trip, I scheduled an evaluation with a Physical Therapist who was employed by our healthcare provider.  She and a 'mobility specialist' (whatever that is), assessed and measured me in every possible dimension.  Talk about humiliation bullet!  But they wanted to customize the wheelchair and that was our goal as well.  I got over that issue quickly.  The report generated by the evaluation documented every option, but painted a very bleak view of my progression.  Some things are best to move past.  Anyway, they indicated that it would be awhile until my chair was built and delivered (4–6 weeks).

Wanting to keep our children informed, we told them what we were planning. The next day, before he even crossed the threshold to the front door, grandson Kyle immediately inquired,  "Gigi, I heard you're going to get a wheelchair.  When is it going to be here?  Are you excited?"  I was used to and appreciated childrens' directness, but as usual, wasn't ready with the response he deserved. Adults recognized transitioning to a wheelchair as another milestone and inquired how 'I felt about it'.  I realized my responses to the two question sources (child and grownup) pretty much summed up how I felt about it.  Anxious, excited, sad, resigned, uncertain, determined...  The telltale sign—my world, using a walker, was feeling smaller.

I know ataxia progresses and needing a wheelchair is a predictable step.  I was prepared as I could be. But still, many ataxians hope the disorder will just stop someday.  Fantasy and denial I know, but it was still niggling in the back of my mind.  However, like all my transitions from one assistive device to another, there are more benefits than drawbacks**.  Being in a wheelchair makes me feel less fearful of falling while using a walker.  My legs were still strong, but less stable.  I'm a big advocate of resorting to assistive devices only when there is no other alternative than injury.  Maintaining ambulation and leg strength with various forms of exercise, has always been a combination of self esteem and injury prevention/recovery***.  I could see injury in my future.  If not me, then my unfortunate companion (most likely Earl).  

I am not known for being able to defer gratification.  Once I decide I need something, I want it now.  That's why I love the immediacy of Amazon Prime's free two day shipping.  Still, the Physical Therapist offered to arrange for a temporary conventional wheelchair through a rental company and we would only have to come up with a 20% co-pay.  OK, great.  But the request must have gotten lost in the bureaucracy, because the rental company didn't call. Our family vacation was coming up and I wanted to have a wheelchair to set everyone's mind at ease****.  So what did I do?  I ordered a transport chair from Amazon Prime for roughly a tenth the predicted cost of the customized chair.  Thelma arrived in two days, and while not perfect, she was mine forever.

Thelma

I realized a transport chair was never meant to be a permanent wheelchair.  There are no large rear wheels to aid in propulsion.  You either use your feet or are pushed.  The brakes are low and in the back and the armrests are high.  But it was very small, lightweight, collapsible, and could be handled by someone with minimal upper body strength.  That was important for several reasons. Even the smallest grandchild could easily push me.  The chair and I became the new toy on the block during the family vacation.  My friends could also manage it when we went to breakfast.  Collapsed, it's as maneuverable as the walker, easy to travel with and has a small footprint.  However, if my butt gets the slightest bit bigger, I'm in trouble. 

Louise

Four weeks later, Louise arrived.  By that time, I knew many of Thelma's shortcomings.  The new wheelchair, with conventional rear wheels, was much more maneuverable.  I could use two means of propulsion (arms and legs) and was better able to manage deep carpet and tight spaces.  The armrests are lower and shorter, making transfers easier.  The brakes are high and in front.  If I remember which chair I'm in, they're much easier for me to reach.  Thelma's seat is canvas and Louise has a cushion.  All this cushy comfort comes at a price—weight.
Louise is a lightweight wheelchair, but still probably 10 lbs. heavier than Thelma. Consequently, I'll probably use Louise at home, and Thelma when out.  However, when we have parties, Louise is my new BFF.

The biggest change for me, and this is major, is increased mobility and speed.  I certainly look more disabled (that ship sailed long ago), but I'm OK with that.  I was so fearful of falling with my walker, I moved as little as possible.  If I forgot something at the other end of the house, I would either have to ask someone to get it (my least favorite option), or forget it and do without.  Now, I just scuttle and go fetch it myself.  In a lightweight chair and mostly wood floors throughout, I'm able to move faster than I have in years.  So, my answer to Kyle: The first wheelchair will come in two days and my indoor wheelchair, made just for me, may take a month.  Yes, I am very excited!

The lesson:  Moving to a wheelchair is a difficult step (pardon the pun), but not necessarily the end of the road.  Progression in disability happens*****, and it can also allow for more mobility and independence. You just never know.


*Previous post:  Road Trip With Disabilities: Part 2 of 5
**Previous post:  Staying Ahead
***Previous post:  Dueling walkers
****Previous post:  Family Vacation 2015—Time Happens
*****Previous post:  My Wheels Are Falling Off