Monday, August 29, 2016

My sister and my PT

My sister came home from work at the tail-end of my physical therapist's home visit. I was kind of dreading the meeting.

OK, not really. They are both great. It's just that, well, my PT has sort of a mean streak.

No, that's not right. It's just that like my sisters and many of my female friends, my PT is quite comfortable making fun of me, which I usually deserve.

At my first appointment, she asked me what I needed to be able to do: laundry, cooking, cleaning? I answered no each time, and she finally asked me, What do you do, Matt?

I thought this is what she'd bring up to my sister because at my last appointment I mentioned our dining room table and she replied, Oh, where you eat the meals you don't cook?

Instead, she said something like, Is this your wonderful sister? She then referenced this episode and said she assumed my sister was wonderful because I told her at one point that she sounded like my sister.

At least she didn't call me a princess again. We working on an exercise to grab something with one hand while balancing with the other. I said I'd just have Fame get what I needed. She replied, Oh Matt, you remind me of one of those princesses and with a snooty voice added, Someone else will get it. (I can hear my sisters laughing.)

Maybe this is why I like her so much.

The real question is: Do I tell her about this post?

Saturday, August 27, 2016

Dog danger

When my niece was doing the project on FA ( I can do Friedreich's ataxia!), she grew a bit upset at t he life expectancy. It is based on potential physical symptoms of FA, like heart ailments etc.  

My sister decided that the best way to end my niece's tears was the following, which I am paraphrasing: You know how Uncle Matt is going to die; he is going to fall or choke to death.  In other words, something caused by FA but not directly FA.

I am not sure how this made my niece feel better. It didn't make me feel very good. Also, it didn't mention my service dogs, who have been trying to kill me for years.

Shortly after I got her, Claren knocked me out of my chair, breaking my collar bone. She was the culprit behind many other incidents as well.

Fame is well behind in that regard, but there's time. And she seems up to the task.

For instance, I still have not gotten a handle on Fame's poop schedule. At training, I was lucky to get her to go once a day. Now she goes twice a day  usually, but once is not unheard of. Three is.

On Thursday, she pooped at 10 at night. She then pooped at 7  a.m. Friday. Surely, I thought as I walked her at lunch, she is pooped out. So   I  let her hurry in a sort-of wheelchair-unfriendly area. 

She pooped.

I entered cautiously to pick it up. I bent down and felt my chair tip, so I sat up and backed up OK. Then I went in again, picked up the poop and got  stuck.

And the fun began.

I was in an out-of-the-way spot and hidden by shrubs, so passersby weren't the answer. I called a friend -- not there. Not at his cell either. I tried three others  at work. Nothing. I  called my neighbor who also works with me. Nothing. I saw two co-workers on Facebook, so I texted them. 

Finally, I got the first person,  and he came and got me out.

The kicker: She also pooped on the walk at night.

Tuesday, August 23, 2016

No laughing matter

My sister-in-law who uses a chair tipped over backward when leaving the van on the bight of m birthday dinner. She was OK, and afterward said something about laughing it off because there was nothing else to do.

I can laugh when something befalls me, laugh to keep from crying. But sooner ask me not to breath than tell me not to do anything else.

And so now, on a night after leaving work earlier because of another stupid failure on the part of my body, I am still thinking about it.

I told Mom after she helped me recover that I didn't have the words to explain what I felt, and I still don't.

I'm angry, sad, embarrassed, annoyed, disgusted. It won't get better, either. And laughing is not enosgh.

Sunday, August 21, 2016


I have tried, over the past week or so, tried to blog multiple times. Each time, something has happened to stop me. Once it was computer-related. The other times were all physical slips on my part.

By that, I mean something happened to sap the momentum from me as surely as a pinprick will empty a balloon of air. After I recovered, usually with help, all I wanted to do was crawl into bed or watch TV or both.

I am so tired of how useless my body is and how dependent I am.

Saturday, August 13, 2016

Why get up?

Ever had one of those days when the fates clearly don't think you should have gotten out of bed in the morning?

I like to call those days, well, utterly normal. I rarely have a day that my body isn't sure would be improved by sleeping in.

Specifically, though, Wednesday was one of those days.

I was in bed Tuesday night watching Dr. Who when an old mosquito bite on my left ankle started bothering me.

I tried cortisone first. That didn't work, and the itchiness started causing my leg to jump.

Then I took Advil. No luck, its either the itchiness or the jumpy leg.

Then I tried Olympics highlights. Nothing. The Unbreakable Kimmy Schmidt. Still nothing.
At 12:45, I called my sister and asked her to bring me a wet washcloth. I used it to wipe off the layer of cortisone, then just draped it over my ankle. That worked. I fell asleep just after 1.
The next jab by the Fates came through Fame. She is not a “hurrier.” I had to take her for walks at training to persuade her to go to the bathroom. At home, during the week, Dad takes her out. This morning, she decided not to be excused. Not a big deal, except I knew she had to go and I didn't really want a poop time bomb under my desk at work.
We went for a short walk when we got to work, and she pooped fine. All was good until a piece fell out of the bag and onto my wheelchair arm. I picked it off OK but had to go into the office to clean it off, so I had to wheel back with my arm in an odd place.

The rest of the morning was normal — busy but OK.
The Fates seemed to have relented … until I went to the bathroom right before lunch.

With the lights on, I went into the stall. I parked, undid my seatbelt and the lights went out. I didn't fall but could not redo my seatbelt because it was too dark to see. I made it out of the stall, redid my belt and then someone came in and flipped a switch to turn on the lights. I don't know for sure, but that seems to suggest that someone popped in and turned the lights off on me. ??

The next time I went to the bathroom, I undid my belt and leaned forward to grab the grab-bar.

I missed.
For some reason, I did not fall. I was just bent over at the waist, holding on.

I managed to put my head on the toilet paper holder, which freed up one hand, which I then used to sit up.
Why did I get up?

Monday, August 8, 2016

All done

One of the episodes of The Office that I watched recently with my nephew and niece involved the guys hanging out in the women’s bathroom because it was so spacious and nice. I couldn’t help think of this when I went into the wheelchair stall today.

By no means is there a sofa in the stall, but it is pretty awesome. And it does have its own sink with automatic soap and paper towel dispensers.

Best of all, I fit!

Wednesday, August 3, 2016

Say what?

I returned my hearing aids last week, and while the experience has not soured me on heart aids, it did convince me I am just not very quick-witted.

I don’t remember the actual words the audiologist used when I told her the hearing aids weren't working and I needed to return them but here’s the gist: OK, yeah, I didn't think those would work, but they're what your last audiologist recommended so I figured you must know something.


She went on: let me show you what I suggest, and she wanted me to then buy new aids from her. The new ones, which she emphasized that she thought would work, were significantly less expensive than the ones she originally sold me, which she had assured me would work with my kind of hearing loss.

I pointed out that I thought my hearing required a team approach, which she tried her hardest to deny. She then told me that I would forfeit the $250 restocking fee if I did not order new aids that day.

That is not an insignificant amount of money to me, but I did not want to go through her again, even if the new aids were perfect.

She even pulled out the “you’ll be helping the next person I see with this disease.”

To add insult to costing me $250 and wasting my time with aids she said she did not think would work, when I was checking out, she said: So when do you want to make an appointment to get the new aids? I said I’d call because I didn't know. She replied: I’ll just make it for the first week in October.

I’ll cancel by email; I'm better by email.

Monday, August 1, 2016

No choice

I am starting my 46th year, and my birthday was fun. Party at work, wonderful Facebook greetings and a relaxing dinner. For me, though, birthdays lend themselves to retrospection (as if I really needed an excuse).

I have likely lived more than I will still be alive, and what an unexpected life. I mean I still like The Lord of the Rings and Star Wars and Errol Flynn movies, but Friedreich’s ataxia? Who anticipated that? And even when I knew I had FA, who could have anticipated what that would mean?

I know that I am pretty blessed, and I wouldn't trade the important stuff, like family and friends. I also realize that everyone, even Spider-Man, has “path not traveled” questions. But it is not as if I had a choice. Too often, it feels chosen for me or at least certain choices are grayed out.

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