Sunday, February 26, 2017

This is why I was worried about my sister and PT meeting

I cough -- a lot. Air and liquid down the wrong pipe. Anything.

My point is I rarely stop what I am doing because of a cough. If I did, I'd get nothing done.  If I did, I'd get nothing done.

I know most people disagree.

My swimming teacher makes me take an extra cough after I swallow water to make sure my pipes are clear.

Yesterday at physical therapy, I was reclining in my wheelchair when I coughed moderately, nothing awful. So I continued reclining.

My PT was sitting next to me and says, "It's probably not a good idea to recline when you are coughing."

This made me laugh, which caused me to cough all the more, because as I told her, it sounded just like something my sister would say. That's why I was leery of their meeting a while back.

I did sort of lie, though. My sister would say, "It's probably not a good idea to recline when you are choking."

Saturday, February 25, 2017

Boys Night In

Mom and Dad are away at a retreat. My sister and niece are at a hockey tournament in Buffalo. This leaves my brother-in-law and nephew and me.

I needed to shower last night, but my brother-in-law had to coach a hockey game until 10.

Up to the PCA (personal care assistant) plate steps my 11-year-old nephew.

I made it to bed successfully so I got to say he hit a home run. Any issues -- like me not asking him to take my shoes off -- are on me.

I survived. And he only made one comment about my towel slipping off.

Tuesday, February 21, 2017


A little over a year ago, while up in New York getting Fame, I fell. It was the beginning of a several months-long battle with a concussion. 

Trying for a repeat over the weekend,  I fell in Mom and Dad's house and whacked my forehead on a grab-bar.

My head hurt, my neck hurt, I hurt.  But no dizziness! 

Friday, February 17, 2017

Not built for speed

I have touched on this before, I believe, but twice this week  I have been reminded how frustrating it is to be late but unable to do anything.

Both times involved me putting on boxer in the morning. The first time I spent five minutes putting them on because several times I put the wrong leg through the leg hole i started with. The second time was more boring, but the result was the same: I was late.

When I am late, there is nothing I can do. I can't kick it up a notch -- the body doesn't do that. I can't skip  something -- I am already at bare-bones, must-do tasks, like brushing teeth.

My option is lateness, which is frustrating.

Tuesday, February 14, 2017

Nothing good

My nephew would say the parking, but my physical therapist was quite surprised to hear me say "a few things are made better by Friedreich's ataxia."

Like what, she asked.

I had to explain that what I said was "few things are made better by Friedreich's ataxia," meaning nothing is. It totally sucks, to be clear.

We did have a nice little laugh.

Sunday, February 12, 2017

Lighting up Falls Church like a flame

Today is my first anniversary with Fame.

We have not figured out how to fly yet, but she picks up an awful lot pretty easily. The limit really seems to be my imagination.

Lately, I taught her to put down the footplate on my chair. I am still pretty tickled by the ease with which she picked it up and how helpful it is to me.

I haven't figured out how to teach her to put the footplate up. See? Imagination.

No  matter when, she is always up for any command I give (except  speak. She does that if I have treats or if she thinks I really needs it.)

In a year with me, I don't think I have seen her not wag her tail when I ask something of her.

These lines from the song struck me but I am not sure who is who: I got more in me, and you can set it free

Friday, February 10, 2017

My dreams are made of this

I have been sleeping poorly the past week. I called in sick Tuesday because I was up most off the night. My legs weren't bad; I wasn't sick; I just couldn't sleep soundly.

To illustrate my unsound sleep, my plan last night was to detail my insane dream of Tuesday night.

I was not disabled and seemed to live in a penthouse with lots of windows and skylights. It seemed to be in like North Korea or some tight regime where you needed your ID everywhere.  Maybe I have just been watching too much dystopian TV, and it was America taken over by  aliens.

I worked as a journalist, and although you needed an ID to get in, they let my oldest sister in when I told them she was with me. She seemed to know people there, and was telling which of the strange foods in the cafeteria to order.

The regime also had a thing for baseball, and apparently had scoped out my penthouse because I  was told they liked some of my baseball stuff.

And there was a woman with eyes like Lady Gaga at the Super Bowl. It turned out she was wearing glasses that gave her the glitter look. But then she took off the glasses and the glitter was still there.

Anyway, my plan was to detail all this last night.

Instead, as I sat down to dinner, I coughed and sent my dinner into my lap. Then later at dinner, I coughed, slamming my head into the table.

Thus chastened of any such work, I watched TV.

Sunday, February 5, 2017

The tuck rule forgotten

Last night as I was going to bed, I had to use the toilet

I got my pants down but not a requisite body part. As such, I needed to change my pants before  I went to bed. No problem. I wouldn't even need to call anybody. I just got back in my chair with my pants down and grabbed some boxers to put on when I got in bed.

Before I got in bed, I took off my sweatshirt.

Unfortunately, my T-shirt came off, too, and I didn't feel like putting it back on.

Then when I got in bed and took my pants off, I knocked the clean boxers off.

So I went to bed without a stitch of clothes on.

Friday, February 3, 2017

Lights on

My latest concession to Friedreich's ataxia is the bathroom light:  I am leaving it on when I go to bed.'

I just cannot reach my glasses, the light switch and the urinal when I need them. At least not as fast as   needed.

I hate concessions.

My eldest sister once told me everyone makes concessions as they age. This is true. But I have already conceded so much. I feel like I am a concession or two away from lying in bed 24 hours a day, which sounds appealing right now but is probably not that cool.

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