Staying Ahead

I've said before that the inherited ataxias do progress neurologically*.  I know that, I've seen that, and I realize progression is both inevitable and unpredictable. I need to be ready to make appropriate accommodations.    But a dramatic transition (there have been many) is always harder to take in stride.  Earl's and my goal is to hit the 'just in time' point in acquiring new devices–neither too early, nor too late.  It's a continual struggle between my 'one day at time' ethos, self-esteem, fear, caution, and anticipation.  I'm still working on the balance.

Transitioning from trekking poles to a walker had its down and upsides.  A walker removed all doubt that I had a disability** and strangers no longer had to wonder if I was drunk or high.  I felt more stable, less frightened, and it didn't impact my ability to venture out.  But, a walker for gawd's sake!  It made me feel so vulnerable—and noticeable.  I thought I had gotten over that, but no.  It was another humiliation bullet to bite.  It went down fast, but it was still there, nonetheless.

Getting a four–point walker for indoor use set our minds more at ease as I trekked to the bathroom in the middle of the night.  Winnie, my three–wheeled rollator was more maneuverable and collapsible, but less stable*** and I still used it outdoors and in restaurants.  It may be time to retire it and use the four–point walker for outdoors as well.

Skeeter packing a walker

Our contractor fabricated a mount on the back of Skeeter so I wouldn't be walker–less on a scoot.  I appreciate the low profile, weight, and stability of the portable walker, but it definitely doesn't move as well as a rollator.  Oh well, everything is a trade–off.  I'm probably sounding like I have or know about every style of walker imaginable.  Not quite, but close.

The consult

Many people with ataxia are wheelchair bound.  I know that will be my reality at some point and I wanted to make the best choice proactively (as opposed to prematurely). I love Skeeter and will continue to use a motorized scooter until I accidentally take something out or something takes me out.  My growing collection of walkers may diminish or be used differently.  Something new may come on the market that I just have to have. You never know.

But was a manual wheelchair a better choice given my needs?  The scooter dealer was managed by a man with a spinal cord injury, who used an ultra–light titanium athletic wheelchair.  I'm no athlete, but still fairly fit and I wanted to preserve my muscle strength.  More importantly, I can use my legs for everything but stability and balance.  For several reasons, he had opted for the ultra–light sport chair. He had me try out the various models, weights, and sizes, searching for the right 'fit'.  Most chairs breakdown for portability, but the lightweight (as opposed to ultra–light) chair was more conducive to the use of legs for propulsion.  He also encouraged me to consult with my healthcare provider's physical therapy department for their input.  I have an advantage in that my need to use a wheelchair is gradual, rather than triggered by a sudden event.  Earl and I have the time to think and plan.

The lesson:  Don't be anxious, crazy, or stubborn, Tam.  Try to stay slightly ahead of the need.


*Previous post: One Day At A Time
**Previous post: The Lighter Side of Progression
***Previous post:  Dueling walkers