Saturday, January 31, 2015

Powered up

I rarely turn off my power chair when bending over or standing up.

Usually I am fine.

Sure, maybe 10% of the time there is an issue, but issue is my middle name, and most of issues are not because my chair is on. In fact, it is helpful when I fall if my chair is on. Then I can move it right away.

Of course, things like this morning's incident happen.

I stood up using the pole at my bedside to pull up my pants after my shower. But I hooked my joystick with the pants I was grabbing. It slowly turned away from me, leaving me standing with nowhere to go. But my pants were pulled up.

Heroically, I managed to sit on the bed, then maneuver the chair back into place and transfer to it without calling for help.


Thursday, January 29, 2015

It's not always nice to be nice

I went to the bathroom today only to find the wheelchair stall occupied again.

For some reason, I was quite surprised.

Normally, I see the occupant under the stall door, but this time, I went right up and pulled on the door before  realized the stall was in use.

To keep my mind of my biological needs, I went to chat with a friend.

I am not ever going to resort to workplace violence, I began. That got her attention.

After emphasizing the "not" a few times, I continued: But if I did, it would be because a non-wheelchair user is in the wheelchair stall.

She suggested that violence is not the way to go. But she also said I am too nice. Guilt, she added, would be more effective than violence.

She said I should knock and politely say: hi, this is the only stall I can use, and I have to use it. She also had some lovely passive-agressive ideas, too, and awesome sign wording that included Mr. T saying "I pity the fool ...

I don't think I'll take advantage of these tips, though. A tiny part of me thinks maybe, just maybe, the person in there needs the bars to sit and stand. I guess it is possible, even if no guy uses a cane or has a discernible limp and the ones I have seen use the stall are just big guys.

So I'll be patient and nice, even as my bladder argues.

Wednesday, January 28, 2015

What were Mom and Dad thinking?

My nephew was a silversmith at his school's colonial days and it has created a bit of a controversy.

You see, I loaned him a little crucible (or stove and melting ladle, as I call them) that I used to make lead soldiers when I was young.

This renewed the debate: What were Mom and Dad thinking? Who lets little kids play with molten lead?

The first issue is how young was I. I thought around 12, but then I remembered making my oldest sister a knight I painted in the colors of Dayton University, her alma mater.

That would have put me at 11 or 12, and I am sure that wasn't the first knight I made. That would make me nine or 10. Yikes.

My little sister thinks it's proof Mom and Dad wanted me dead. She uses that thinking to explain a lot of my childhood, like climbing on roofs, staying out late ...

I'd like to think it is proof I was amazingly cool and mature, and Mom and Dad simply trusted me.

My oldest sister, a font of wisdom and curse words, points out that the Friedreich's ataxia had not set in yet, so better then than now.

Monday, January 26, 2015

Krup you! *

No doubt after reading the last few posts ... oh, who am I kidding ... No doubt after reading more than one post, you're thinking, "he needs an analyst's care."

I agree. It's hard to find a good one, though.

The one I saw a few months back was not good, at least not for me.

I knew that two minutes into our first meeting. I went back once -- I'd like to say it was because I wanted to give it try. Really, I just didn't want to say no when she asked, Do you want to come back?

The second appointment convinced me. She was encouraging me to do things online -- gaming, a book group -- that I have little interest in.

But I knew right away. Her first question to me was: Why are you here? Reasonable. I told her I was OK but want to be better than that. She seemed a bit confused by that request and started telling me that everyone has highs and lows and that OK is good.

Not for me.

* If confused

Thursday, January 22, 2015

More abnormality

I took my power chair in for service last week. I left it there Wednesday night and they brought it at back late Friday. I had six issues. Any guesses how many were successfully resolved?

Here are the problems that needed fixing:

  • The controller arm was twisted,
  • There was a screw I am holding in with duct tape,
  • The joystick knob needs to be put on securely,
  • A fender needed to be reattached,
  • A footrest needed straightening,
  • The foam armrest needed replacing.
How things are today:
  • The controller arm did get straightened. It also get raised so it no longer fits under the sink at work. With the joystick knob reattached, it no longer fit under the sink at home, but that's OK because the knob popped off within an hour.
  • The duct tape is still there, so I suspect the screw wasn't fixed.
  • The fender was reattached.
  • I need a new footrest, but they straightened it while they order one. Of course, it is almost unmovable now.
  • The armrest was replaced.
  • They also noticed the back was misaligned and straightened it.
I like the people at this chair shop. Their service is poor. I think about leaving, but no one is particularly good. So I stick with them.

Wednesday, January 21, 2015

The only thing I have to fear is everything out of the normal

I'm scared.

Now, I know you all are saying to yourselves, "Matt, scared? Is that even possible?"

I'm afraid it is.

I was in bed last night and I tried to move my legs. Notice the word tried. I really had to struggle just to unbend my right leg. It was so weak.

So exercise, you say.

And I will.

But, as I have written before: If everything is perfect, I am usually OK.

If I sleep poorly, if a non-wheelchair user decides to use the wheelchair stall when I need it, if my insides are just a tiny bit off or if my hip hurts, then all bets are off. And so after I fall (in the figurative sense but also literally), all I want to do is sit or lie still. One can't exercise if one doesn't want to move.

Hence the fear.

Sunday, January 18, 2015

He's a brick

I finally found someone who sleeps more soundly than I, although he wakes up really fast when he wants to.

Kenny the puppy is a bit skittish of well anything when he is awake, but at night he's another dog. He's staying with me this weekend while his family is away at a hockey tournament.

Last night, I woke up and didn't see him on my bed.

It wasn't until I started kicking off the covers and trying to move my legs to use the urinal that I realized he was on the bed. But he barely budged as I moved and kicked at him.

Long story shoer, I had to call Mom to help me after the urinal leaked because I wasn't able to move the covers.

At least he's a cute brick.

Saturday, January 17, 2015

As good as it gets?

I am debating getting  therapist to come over and make some suggestions about how I transfer to the toilet. I want to have one come and see how I could type better.

One thing is stopping me: What if they can't help? What if the way I am now is as good as it gets.

As Mom says, who cares, it's not like the therapists will make you worse.

Thursday, January 15, 2015


I was pretty shaken by Monday's fall and an almost-fall a few hours later. How much can a body stand, I asked Mom physically and emotionally.  I don't hurt myself when I fall, but that can't keep happening. My guardian angel can't keep lucking out.

But I know the answer: How much? More.

I was feeling bad Tuesday when I got home from work, and Claren tried to get on my bed to comfort me. Of course, she can't anymore, so she just stood there with her face on the bed. That made me feel bad about feeling bad.

Then came yesterday.

I went to the wheelchair shop after work and dropped off my chair for repairs. That means I am using my manual chair, which has a fixed footrest -- different from my normal power chair.

I was going to the bathroom before bed, and my foot got caught on the footrest. I fell. My right arm knocked all my bathroom accoutrements to the floor with a loud crash. My left arm went in the dog bowl, which spilled, so I had dog water everywhere, even dripping in my left eye.

My sister helped me up and get into dry clothes.

But how much more?

Monday, January 12, 2015

Naked, wet and on your back

The length from the Super Pole in the bathroom to my bed is maybe 10 feet, not far and not a hard trek ... unless you are naked, wet, on your back and have Friedreich's ataxia. If that's the case, it's like the Bataan Death March.

I slipped this morning getting out of my shower chair. I wasn't hurt, but the slick floor prevented my recovery. So I grabbed my phone to call my sister, that is to say I grabbed the air where my phone should have been.

I didn't remember putting my phone away, so I figured I forgot it on my bed.

So began the sliding.

I am not sure how long I worked to reach my bed. I got up at 6:10, fed Claren, showered, then slid. At the latest, I started about 6:40.

I finally reached my sheet and pulled it off: no phone.

It was about 6:50 then, and Dad was coming over at 7, not that I wanted him to come upon me on the floor. But what could I do? I did cover up my parts with my sheet.

At 6:58, my nephew came down. I called him and he heard.  I asked him to get his parents, which he did. So Dad wasn't greeted by his son laid out but by my brother-in-law helping me into my boxers on the floor.

Oh, and my phone,  I must have knocked it on the floor when I first reached for it because it was on the floor of the bathroom.

Sunday, January 11, 2015

Owning my carotid

I shaved in my dream, with a blade. I don't know if I killed myself in my dream because I woke up halfway through, but when I got up I knew what I had to do: shave!

My high-falutin brother might have popped out to someplace to get a shave, but I wanted to do it myself. One of my nieces had left an unopened Gillette Fusion razor at my parents, so I borrowed it, shaved and survived!

Friday, January 9, 2015

Another dog ... eventually

I sent off my application for a service dog this week. I don't anticipate doing anything about it and I still have several interviews to do, but it feels like I am moving on a successor dog.

I am still trying to find out why Claren was peeing in the house around Christmas. We're waiting to hear about a culture.

Tuesday, January 6, 2015

Putting the fun in funeral

I know I am not the most evil one of my siblings; that would totally be my sister (which one? I'll let them decide.) But I may have laughed and had impure thoughts (not that kind!)  at funeral today.

A woman who was friends with Gram and Mom died, so I am pretty sure I was trying to lighten the mood in my head by thinking mirth-some thoughts. The problem with that is that my mirth-some-ness rarely stays in my head.

My sister noticed two times i laughed at the funeral, which means I was able to cover it with a cough two other times.

The mirth-some thoughts she noticed:

  1. Everyone laughed at this. My problem was I almost lost it. One of the kids doing the reading turned to the wrong page in the lectionary and started to recite the Gospel.
  2. During Peace, the priest came over and laid hands on me, one hand anyway. I immediately imagined me standing up. I'd say in a deep baritone: "THANKS, FATHER. I NEEDED THAT." Then I'd add, :The power of Christ compelled me."
The others:
  1. My hands were freezing, so I had them in my shirt like a fur-lined muff. But then I coughed. I kind of flashed the priests. And I didn't get any beads.
  2. Finally, there were no pallbearers exactly. The whole family walked the casket in. That's cool, but for Mom or Dad we'll have three wheelchairs. Then I thought, What if I rode the casket, like a figurehead.That would be awesome. 
Maybe it is good I don't go to many funerals.

Saturday, January 3, 2015

Doggone it

Claren and I went to the vet this morning. She is drinking even more than usual, and has had several accidents this past week -- including one on the floor of Mom and Dad's living room.

I am worried important inside things are going bad, and I won't know when to stop it. Or alternately, and perhaps worse, I do decide to stop it, but I am acting too earlier and because the extra care she needs is hard.

 The appointment was at 9:30 a.m., and when We got home, I took a nap on the floor. Claren started next to me, but got bored and left.

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