I needed a little personal help yesterday morning as I teleworked.
Mom was unavailable. Dad would not have been good at what I needed.
So I did what I needed myself.
It didn't make me feel good.
I didn't feel like I had accomplished something special. I was quite unhappy that I needed help to begin with. I'm hopeless.
Wednesday, September 27, 2017
Monday, September 25, 2017
What's stopping me?
I was off work all last week. I told a friend writing was on my list of things to do.
I wrote one blog and a few paragraphs of other stuff.
WHAT IS WRONG WITH ME?
All I did was sleep, watch TV and take walks with Fame. And granted that does sound like a good vacation, but I like to write. What's stopping me?
I have a physical this week. Maybe that will ease my discomfort.
I wrote one blog and a few paragraphs of other stuff.
WHAT IS WRONG WITH ME?
All I did was sleep, watch TV and take walks with Fame. And granted that does sound like a good vacation, but I like to write. What's stopping me?
I have a physical this week. Maybe that will ease my discomfort.
Wednesday, September 20, 2017
This is a job for ...
I am off this week so went for a long walk. It was surprisingly warm in the sun, and the bike trail is all sun, so I was turning on various streets to find the shade. For Fame. I like the sun.
I even used the sidewalks, which was dumb. At one point, I had to edge around a tree that stuck out in the sidewalk. I made it OK, but noticed this truck had stopped and was watching me. I don't know if he was worried I might fall or he might hit me if I fell. Either way, sidewalks stink.
We made it to a local park, but there was a mom pulling a kid in a wagon, and we wouldn't both fit on my city's sidewalks, which, even when they don't have trees or utility poles blocking them, are narrow.
To give her room, I went onto a dirt path and it worked OK until it didn't and I got stuck.
I called Mom and asked her to call the fire department to help me out. She did.
Mom had earlier today texted me and my siblings to say a little procedure she had went fine, so I just told my siblings that I was waiting for the fire department. My little sister says, I'll come.
Next thing I know, Mom is calling saying she is at the park trying to find me. Then my sister came and freed me. Then three firefighters came.
I think the big takeaway, other than that I have an awesome family and I need to make a donation to the fire department, was Fame. She was fine, just lying down until she saw a passerby who she must have thought could help me. Then she started barking loudly and continuously, likely scaring any help off. I think she speaks when she thinks i am in trouble.
I even used the sidewalks, which was dumb. At one point, I had to edge around a tree that stuck out in the sidewalk. I made it OK, but noticed this truck had stopped and was watching me. I don't know if he was worried I might fall or he might hit me if I fell. Either way, sidewalks stink.
We made it to a local park, but there was a mom pulling a kid in a wagon, and we wouldn't both fit on my city's sidewalks, which, even when they don't have trees or utility poles blocking them, are narrow.
To give her room, I went onto a dirt path and it worked OK until it didn't and I got stuck.
I called Mom and asked her to call the fire department to help me out. She did.
Mom had earlier today texted me and my siblings to say a little procedure she had went fine, so I just told my siblings that I was waiting for the fire department. My little sister says, I'll come.
Next thing I know, Mom is calling saying she is at the park trying to find me. Then my sister came and freed me. Then three firefighters came.
I think the big takeaway, other than that I have an awesome family and I need to make a donation to the fire department, was Fame. She was fine, just lying down until she saw a passerby who she must have thought could help me. Then she started barking loudly and continuously, likely scaring any help off. I think she speaks when she thinks i am in trouble.
Thursday, September 14, 2017
Back to (grad) school
I spent this afternoon talking to physical therapy grad students and doing things for their teacher to talk about. It was fun.
My PT is one of the teachers in the class, although she wasn't there. The students who help me are in the class, too, so I feel some allegiance to this school, and as I told the main teacher< the more people who know about Friedreich's ataxia the better for me.
I was there with a friend of the teacher's who had a spinal cord injury. We told our stories, so I gave a real abbreviated history. Then we transferred to mats, and we did stuff -- like roll onto our side or stomach -- or another teacher did stuff -- like moving us.
It was interesting to hear things, and they were pretty spot on. One student mentioned how fast my transfer to the mat was compared to the other guy's methodical pace. ("My chair is faster," the other guy replied, which we had talked about -- his goes 12 mph; mine tops out about 5.) The teacher then suggested that Matt's body is probably not very predictable, so I try to move fast and get back to solid ground. I agreed.
Fame, of course, was the star. She did "foot" and "plate" and a few gets. The only problem was she was showing off/playing when getting my phone. She activated my phone, opened the phone app and called one of my aunts. I hung up as fast as I could.
But they all liked us. And I didn't even have to do the Triple Lindy.
My PT is one of the teachers in the class, although she wasn't there. The students who help me are in the class, too, so I feel some allegiance to this school, and as I told the main teacher< the more people who know about Friedreich's ataxia the better for me.
I was there with a friend of the teacher's who had a spinal cord injury. We told our stories, so I gave a real abbreviated history. Then we transferred to mats, and we did stuff -- like roll onto our side or stomach -- or another teacher did stuff -- like moving us.
It was interesting to hear things, and they were pretty spot on. One student mentioned how fast my transfer to the mat was compared to the other guy's methodical pace. ("My chair is faster," the other guy replied, which we had talked about -- his goes 12 mph; mine tops out about 5.) The teacher then suggested that Matt's body is probably not very predictable, so I try to move fast and get back to solid ground. I agreed.
Fame, of course, was the star. She did "foot" and "plate" and a few gets. The only problem was she was showing off/playing when getting my phone. She activated my phone, opened the phone app and called one of my aunts. I hung up as fast as I could.
But they all liked us. And I didn't even have to do the Triple Lindy.
Wednesday, September 13, 2017
An ecstatic goof
I don't know if Fame senses problems and is so happy when a solution arrives or if she just takes any opportunity to goof off. Probably some of both.
I forgot my pass card to ride to my floor on the elevator yesterday, so as I was texting friends to come help, another co-worker came by. You would have thought Fame and I were dying and he was our lifeline. She was leaping around, licking our savior.
I forgot my pass card to ride to my floor on the elevator yesterday, so as I was texting friends to come help, another co-worker came by. You would have thought Fame and I were dying and he was our lifeline. She was leaping around, licking our savior.
Monday, September 11, 2017
Needing work gloves
"Can you bring a pair of work gloves up and help me?" I called to ask Mom yesterday.
To her credit, all Mom said was, "Mercy," and she came right up.
Then, of course, I had to explain what on earth I was doing in the pricker bush at the end of the yard.
Fame ignores the nice balls I buy, and favors a ratty tennis ball my nephew found and brought home for the house dog.
Unfortunately, this ball is too mushy for the Canine Cannon, so I was using the Chuckit to toss it. It seemed to go too far -- Fame was all "I can't find it; woe is me -- so I was hunting for it and kind of got caught up in the pricker bush.
Mom freed me and pulled out all the pricker splinters we could see. One finger still hurts, so I am not sure if we got them all.
And the ball? I don't know if Fame was just messing with me: She grabbed it once she saw Mom.
To her credit, all Mom said was, "Mercy," and she came right up.
Then, of course, I had to explain what on earth I was doing in the pricker bush at the end of the yard.
Fame ignores the nice balls I buy, and favors a ratty tennis ball my nephew found and brought home for the house dog.
Unfortunately, this ball is too mushy for the Canine Cannon, so I was using the Chuckit to toss it. It seemed to go too far -- Fame was all "I can't find it; woe is me -- so I was hunting for it and kind of got caught up in the pricker bush.
Mom freed me and pulled out all the pricker splinters we could see. One finger still hurts, so I am not sure if we got them all.
And the ball? I don't know if Fame was just messing with me: She grabbed it once she saw Mom.
Saturday, September 9, 2017
Bed
I didn't have Fame sleep in her crate at night for long. There were too many things I needed her to do when I am in bed.
She picks up stuff I drop at night and gets my shoes every morning.
Sleeping next to me was a bonus.
It's a good thing, too, because she has decided she has a better spot to sleep.
She picks up stuff I drop at night and gets my shoes every morning.
Sleeping next to me was a bonus.
It's a good thing, too, because she has decided she has a better spot to sleep.
Wednesday, September 6, 2017
Smarter then I
When did you start using your power chair primarily, my nephew asked last night.
I guessed about 2006. He said OK and left. I knew school had just started and planned to ask his mother why he was asking.
But half an hour later he walks in and says, "I thought you might want to read this," hands me a piece of paper and leaves.
It is a report on innovations and inventions, and it begins by saying, "Wheelchairs are one of the greatest inventions of all time ..." He then explains why -- because they enable opportunities people with disabilities would not otherwise have.
I like to hate my wheelchair, and it is annoying at times and not always super comfy. But my nephew is right.
I guessed about 2006. He said OK and left. I knew school had just started and planned to ask his mother why he was asking.
But half an hour later he walks in and says, "I thought you might want to read this," hands me a piece of paper and leaves.
It is a report on innovations and inventions, and it begins by saying, "Wheelchairs are one of the greatest inventions of all time ..." He then explains why -- because they enable opportunities people with disabilities would not otherwise have.
I like to hate my wheelchair, and it is annoying at times and not always super comfy. But my nephew is right.
Tuesday, September 5, 2017
My service dog
Twice recently, I have called Fame by the name of my first service dog Claren.
When it first happened -- I told Mom to grab me Claren's toothbrush -- Mom suggested it was because it was near t he anniversary of Claren's death. But it happened later, with a friend at work.
In my head, I have been calling Fame Claren since before we graduated. I told one of the trainers that she must be working out well because I am calling her by her predecessor's name. The trainer said that was normal.
I don't get why it is happening now.
When it first happened -- I told Mom to grab me Claren's toothbrush -- Mom suggested it was because it was near t he anniversary of Claren's death. But it happened later, with a friend at work.
In my head, I have been calling Fame Claren since before we graduated. I told one of the trainers that she must be working out well because I am calling her by her predecessor's name. The trainer said that was normal.
I don't get why it is happening now.
Sunday, September 3, 2017
I'll tumble for ya, FA; I have no choice
I fell today.
It wasn't a particularly bad fall -- well, I wasn't hurt.
It wasn't a unique fall by any means. I had just used my urinal and before I could put my seatbelt back on, I fell forward. I tried to balance myself by putting my hand on the floor, but my wheelchair seat was raised so I couldn't really reach the floor. I did manage to keep my head from hitting anything, though, as I sprawled out on the bathroom floor. I also managed to tel "I'm OK" as soon as I heard someone in the other room leap up.
I remember similar falls and trying to balance with my hands. Once or twice, I have succeeded.
It is kind of depressing to find myself running out of falls I have never had before. Granted, there are still new ways I could tumble. But it means I have experienced so much because of Friedreich's ataxia.
It wasn't a particularly bad fall -- well, I wasn't hurt.
It wasn't a unique fall by any means. I had just used my urinal and before I could put my seatbelt back on, I fell forward. I tried to balance myself by putting my hand on the floor, but my wheelchair seat was raised so I couldn't really reach the floor. I did manage to keep my head from hitting anything, though, as I sprawled out on the bathroom floor. I also managed to tel "I'm OK" as soon as I heard someone in the other room leap up.
I remember similar falls and trying to balance with my hands. Once or twice, I have succeeded.
It is kind of depressing to find myself running out of falls I have never had before. Granted, there are still new ways I could tumble. But it means I have experienced so much because of Friedreich's ataxia.
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