All the wheelchair users were attractive young adults with “come hither” looks.
It worked, though. I read about Permobil and learned they're a top wheelchair company.Ever since, I have associated Permobil users with the cool kids in wheelchair land and wanted to join them.
After many insurance hassles, I have! And let me tell you, it was worth it.
When I went to the Children’s Hospital of Pennsylvania last summer, I didn’t have to do the nine-hole peg test. Silently I cheered as this torture seemed behind me.
Fast forward to last week. I had to do it four times.
Actually I didn’t have to. The woman asked me several times if I wanted to, especially after the first try when I must have taken a minute a peg.
But one of the reasons I go to CHOP is so they can study me. I’d almost anything for them.
Other than that, not much.
The neurologist liked the idea of the standing chair. He said it will help my bones, which in Friedreich's ataxia people are prone to weakness. That part about bone weakness was news to me and would be news too to my insurance doctor who said standing does nothing for FA.
The neuro said the first FA treatment would be out in about a year. The drug essentially takes you back two years FA-wise and keeps you there. Unfortunately, he made the same prediction last year.
Finally, he said it sounds like I had a good year. So yay.
My plan last night was to write about how life shouldn’t be this hard.
That thought was spurred by my inability to flip the waistband on my boxers while I was on the toilet.
I was trying to that so I could pull up may pants so I could get my nephew to help me up. Not that he’d care. He’s relatively unfluster-able. Pulling my shorts up was for me.
The other issue that made me long for an easy life is that when I bent down to try to fix my boxers, my fingers got tangled in the rope tied to the flusher. This resulted in a weak flush that stopped my toilet up.
But I didn’t get to write that blog. Depending on how you view why, it can either be an additional difficulty or it can be interpreted as one of my many blessings.
About a mile or so from home on my return trip on my nightly walk, my battery died.
I turned my chair off and on and lowered my speed. That got me to the street Mom and Dad live on.
As I went up the street, though, I got stuck in the gutter and repeatedly turning my chair off and on didn’t give me enough power to escape the gutter.
That’s when a friend who lives up the street happened by.
She pushed me out of the gutter, then walked in front of me the rest of the way. Then she pushed me up the driveway and ramp.
OK, life is hard, but I am lucky.
I loved my previous personal care physician, but the logistics became too much.
She has a lot of patients, so you often wound up waiting at the office. I didn’t really mind — you wait at doctors offices, right?
But when I was told I’d have to wait 11 months for a physical, I decided to switch.
My sister had been touting her doctor (and my brother-in-law’s and a neighbor), and as much as I hate to admit it, she was right.
He opened the door to see me while my sister was still filling out forms.
And more.
I sent a message on the portal yesterday because some of the bloodwork seemed pretty out of whack. He must have seen it this morning, a Sunday, and he uploaded and commented on the results.
Basically, I’m OK, or as OK as usual.
Wow.
