A new set of wheels

Posted by Karen - May 5th, 2018

Nope, not the wheelchair van – it’s the wheelchair itself, baby! FINALLY, at long last…

It’s been a really involved and complex process to get all the funding lined up for my daughter Miranda’s super duper expensive, high tech power wheelchair, not to mention getting the chair ordered, delivered, adjusted, customized, and programmed. That odyssey, however, is now finished, and the power chair was delivered to our house this week.

The first chance Miranda had to take the chair out and put it seriously through its paces was Friday night. [Explanatory point – Miranda can still walk short distances like around our house and her school classroom, so a wheelchair isn’t needed 24/7 at this point.] We loaded the chair up into our vehicle, and headed off to the mall.

Note also de rigeur Star Wars shirt - May the Fourth be with you.

Note also de rigeur Star Wars shirt – May the Fourth be with you.

I am a fan of bullet points, so in no particular order, here’s my bulleted list of what we learned and appreciated about Miranda’s Permobil chair yesterday evening…

– The power chair is mega adjustable in terms of tilt, height of seat, height of foot rest, angle of foot rest, and so much more. In fact, and this is a big thing, Miranda can micro-fine tune all of this stuff herself with the various functions on a tablet attached to the chair. This is ever so much better than when using the manual chair, where adjustment basically requires an adult to help her out of the chair and then back in again.

– If you are a pedestrian standing near the chair, you do not want to get your toes accidentally run over by this mega-heavy bad boy. Trust me on that one.

– A teenager with fibrodysplasia ossificans progressiva is quite a bit safer sitting encased in a power chair than when walking with a cane. In fact, said teenager can even take off to explore stores without a parent present (GASP). Very much minimized is the fear that someone will bump into teenager and knock her down, thus potentially resulting in an FOP flare-up.

– Unexpected, but kind of obvious point – parent accompanying teenager in a power chair gets to have their hands free. No need to push the wheelchair! This part was awesome; I felt like not only did Miranda have a lot more freedom, but so did I.

– Weirdly enough, if you want to move the power chair back and to the right, you have to direct the wheels to the left, and vice versa. This is because of front wheel drive. It’s definitely counter-intuitive, but I’m sure it will come more naturally to both Miranda and me in time (I say me, because you can switch between “seated person mode” and “attendant mode” and the person accompanying the wheelchair can control the chair in the latter instance. I have to do this to get the chair in and out of our house.)

– Even if you have to park at the far end of the parking lot – which we did last night – this is no problem, because the power chair can cross the distance like nobody’s business.

– Some stores in our local mall are surprisingly accessible for someone in a power wheelchair, while others are pretty much not navigable.

The trip to the mall was a good first outing with the power chair. We are onward and upward from there… Today we followed up with a visit to a garden store, and while I looked at raspberry bushes and tried to estimate how many I had room for in the corner of my yard, Miranda zoomed around looking at all kinds of other stuff. We reunited later, Miss M with assorted house plants on her lap which she decided she HAD to have in order to create a planter in her bedroom (having never before shown any interest in plants before, naturally).

I think this motorized wheelchair is going to be pretty great for Miranda. And, with summer just around the corner, it couldn’t be better timed.


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