Very disabled

 It is fairly easy to forget I am disabled at work. I do a good job and am well thought of by my co-workers and bosses. Years ago one of my boss's said to another one in my presence something like, the problem with Matt is everybody likes him. 

But then something inevitably smacks me square in the face that I am monstrously disabled. 

That inevitable something came the last couple days. I had to get a new computer so I told the IT folks what programs I needed on my computer. They were just four. 

I do not know whether I had to log in myself for anything to be installed, but none of my programs were put on in advance. The operating system not up to date, either. So I spent two and a half hours at the office with an IT person I barely understood and who barely understood me working on my machine. They installed three of the programs allegedly. They told me they could not install the fourth one. So I left with my new machine. 

It got worse. 

When I logged in and started working on the new machine, it quickly became apparent that it was not set up for someone with mobility issues. There is a feature on Windows machines called filter keys that tells the computer to ignore accidental keystrokes. I set this up, but it didn’t not work very well for some reason. So I sent an email to the IT person and copied my boss and her boss explaining the situation. I thought I would get attention because almost every letter was repeated at least once. I also asked them to install to basic programs that they had left off. 

For some reason, when they contacted me, they seemed not to care about the filter keys and instead only worried about installing the  missing programs. 

This was even made worse because their voice was not one I am used to hearing and therefore I had no clue what they were saying often. Making matters even worse, once they were on my machine, they minimized the chat screen that had the captioning that I needed to understand them. 

Then I realized that one of the three needed programs was not  installed.

I finally got a setting of the filter keys that was okay, not wonderful by any means.

I guess I will see what the next day brings to this disabled person. (It mostly brought working filter keys.)

The song

 Once, when we were both closer to college age, my sister told me about a song by a band she liked. 

In the song, the singer, a woman, talks to her brother and says she will help him always. Even when he has lost his strength and he is too tired to go on, she will be there. 

It is a song that even now makes me feel happy and sad, loved and teary all at the same time. 

On Tuesday night, I was having some problems. It started with my realization that except for a Gatorade sports bag when I was in North Carolina at my first job, I have not ever one anything any kind of lottery. 

I did, of course, win, or lose, the genetic lottery by getting Friedreich's ataxia. I was thinking how random it is for me and my brother to have Friedreich's.  I forget my probability studies, but as I understand it each of us had a a one in four chance of getting FA. We both did. No one else in my family has it. 

My feelings kind of devolved from there. On the verge of tears, I decided to listen to that song. It helped, knowing that I am loved as the singer clearly loves her brother. 

The next night, laughing told my sister that I wasn't sure I should tell her what I was listening to the night before. I did, of course. Her response was that I should never listen that song not be allowed to. 

I suspect the brother in the song dies, and that's the reason for her strong stance against me listening to it. 

Despite her thinking, I will still listen to that song when I am sad probably mostly. I am sure that it will make me sad and make me cry. But it will also remind me how much I am loved and that is always worth a few tears.



Stop

On my walk today, I was crossing the street between two trails, in a crosswalk, with other people crossing the other way. There was one car just starting on the road, and there was another car the other way several hundred feet off. But apparently it was not for enough off for one of the joggers going the other way. 

This jogger had on an Army T-shirt and she stopped in the middle of the intersection, put her hands on her hips and just stared at the car. 

Maybe they they had just purchased the T-shirt because it looked cool and not because they were veteran, but regardless I would have stopped. That stare was something else.

I, of course, have no proof that she did it because there was a wheelchair user in the intersection, but at the same time I saw no reason for it except maybe to protect me. 

Dream blog

It happened again, a stranger picked my nose. That is how I decided to start the blog in my dream. 

It was an odd dream, to be sure. 

I went to work with my sister, and after a little while in her room some other adults came in. One was a friend I know. One was an older woman who said to me, “Oh, you have a booger.” She then reached up and plucked it out. It was just weird. 

There was more, too. My sister didn't get me for lunch. Then as I was going home, it started to rain. I have no idea what it all means.

As all this was going on, I was contemplating in my dream how I was going to write the blog about this incident.

Even Lyle agrees

 

 It ought to be easier. 

When I get in bed, I am usually hot. For that reason, I cover myself at most with the sheet. But if I wake up in the middle of the night, as I have been doing this week, I am usually cold. 

That requires me to cover up with the fleece that is next to me want on the bed. 

It sounds simple enough. In practice, it is hard to impossible to get anything over my legs.

 

Last night, for instance, I gave up trying to get anything on my legs beyond the sheet and just covered up my chest with another fleece.

 

Being cold, I guess, is just something I will have to put up with.

At least I have hairy arms

 It's been a little over 26 years since I learned that I have Friedreich's ataxia. I don't think I have ever been as pessimistic and sad about my FA as I have been recently. 

Certainly, the disappointment of the drug trial plays a significant part. But the inability to have any type of temperature regulation is having a real effect. Take any night this week: I cover myself with a sheet then uncover myself and go back and forth numerous time. Similarly, I turn the ceiling fan off and on. I put a fleece over my arm and upper body and then I take it off because I am too hot. Last night, I wound up falling asleep with a wet washcloth on my forehead to try and cool me off.

That doesn't even include the daytime hours spent feeling like my body is drenched in sweat only to realize my skin's bone-dry.

I honestly don't know how I can survive this for any length of time. Although I am not sure there’s another option beyond just deal with it. 

Another issue is a recently completed natural history study about Friedreich's ataxia that I did. It asks if one’s hearing or incoordination or incontinence or whatever had an effect on your lifestyle in the past four weeks. Honestly, it didn't for me — not in the past four weeks, four months, or really four years. That's because these things have been going on for a large part of my life and I've adjusted to them years ago. So no, my fatigue does not inhibit me anymore but that is only because I have learned that I need to take a nap in the afternoon after work. And I know that I need a lot of sleep on the weekend to recover from the week 

So with all that going on, it was nice to hear my cardiologist saying we should do an echo only every other year instead of annually. He feels that things are fairly stable heart-wise. It doesn't really make up for the rest, certainly not when I was told I was unlikely to have heart problems a few years ago. But I suppose I better take what I can get. Although I refuse to consider the older man who complimented me on my hairy arms a positive.

Stupid remote

The remote control is definitely the weak link of my lift system.
It tends to to stop working after about a month with no indication. If you change the batteries, it usually starts right up. But I am not convinced it needs new batteries. It often works if you just remove one battery and put it back. Unfortunately , the batteries are behind a screwed-in back, so they cannot really be easily removed or changed. Certainly not if one is by oneself.
I have had two or three remotes and am now on a beta test of a different type of remote. But it seems to share all the rotten aspects of the other one. For instance, it failed last Monday for no reason that I could see, so we changed the batteries and it worked fine … for a day.
The next day I was on my own in the morning, an I was using lift to get off the toilet. I had just pressed the up button, and it stopped working. Obviously, I knew it was not the batteries.
After thinking about my options, I used my thumbnail to unscrew the back and remove a battery, actually I didn't even remove it, I just rolled the battery around and that worked fine.
When I am getting off the toilet, I usually stand up in the lift, wițh it just under my arms to pull up my pants and empty out my bladder completely or at least more completely. The problem is if I am not careful I can pee on the toilet seat easily.
With my mind on the remote, that is what I did this time.
I did not want to sit back down in pee with my pants pulled up. I had parked my wheelchair just about three feet from the toilet. So I thought to use the lift to walk t my wheelchair rather than sit back down.
It actually worked fine. Until that is, I pushed the pad on my wheelchair all the way back.
I decided this was a bad idea and it would be uncomfortable. So I used the remote to sit down on the floor, put my legs in the left bracket raise back up and then go to the wheelchair and fix the pad.
Once again this worked fine … until I sat back and pushed the pad all the way back again.
At this point, I decided to screw it. A little discomfort was certainly not intolerable. Eventually mom would come over and she could fix the pad. That is what happened.
I blame the pathetic left remote for that morning failures.

300 apps

 On a magnet board on my bookcase by the bathroom is a gift certificate from my nephew promising to download 300 apps on my phone. He gave it to me 10 or 12 years ago and while it has an expiration date of never, I suspect he want ever fulfill it. That's okay, it makes me smile every time I look at it. Even my iPad, which did have games like Fortnite and Brawl-stars, didn’t ever have 300 apps. 

It makes me smile because even now it seems like such a perfect reminder of my nephew. 

First, he is a giver. There are many, many people in my family who help me. My nephew is definitely one. Every time I ask him to do something, he says sure and does it. He always opens the door for me when I come back from walks. He also loves his phone. Finally, it reminds me of one of my favorite pictures from probably the same era as the gift certificate. It's me on my chaise lounge in my room working on my computer. Next to me in my wheelchair is a little person, my nephew, with bare feet over one arm of the wheelchair and his back against the other arm, playing on my phone. 

One time when we were on vacation, another nephew similar in age said something like he thought he would be in a wheelchair when he grew up and that we will live together and roll around and egg people.

I have no idea where he got “egg people” from. I am pretty sensitive to egging because that happened to me one year Halloween.

But mom was apparently quite moved. Despite the eggs. She pointed out that he had no fear of being in a wheelchair because of me. He did not wind up in a chair, and honestly, I am not certain that it is not something to fear.

I think mom meant he did not fear wheelchairs. 

The nephew I live with doesn’t fear chairs either. Whether it's sitting in one while playing on my phone, riding on the back of one, or racing me in an old chair I had … To my nephew, and other family and friends, wheelchairs are just a part of who I am and he doesn't mind. All that from one gift certificate. 

No respect

 I have never been a huge Rodney Dangerfield fan, but after 14 years of living with my sister family, I have great appreciation for the ”I get no respect" line.

it's not just my sister and brother-in-law. I don't expect them to show me any respect. If they did, I'd worry I was dying or something.

But my nephew and niece , they're the worst. For the best, I guess. No respect but much love.

For instance, I was talking to my sister recently and my niece was there. At one point, she started to laugh to herself and said something like I have to tell you something really funny. She then waited for us to finish talking and said you (meaning me) are just at the right height and then she pretending to kick me in the neck..

As someone who can't stand, let alone kick, this struck me as a Jean Claude Van Damme move. She kind of bent over anď raised her leg and then bent her knee and. made it straight pushing it her foot into my neck. If it wasn't so mean I would have been impressed. 

My nephew and niece are back in college , so it is quieter and I don't get kicked in the throat. It's a small price to pay for all the love that it.

It’s always FA

 I audaciously decided recently that a recent physical problem had nothing to do with Friedreich's ataxia. My neurologist finally corrected me. 

I generally assume that everything is related to FA, but this was the problem with the soles of my feet feeling like I had been standing up for hours. It didn't make sense that it would be FA-related. 

I assumed that it was related to my standing in my wheelchair for about 30 minutes a day or maybe because my foot plate was too high or because when I cough my feet move and wind up sitting on the rim of the foot plate, which is higher. 

But mom finally persuaded me to email my neurologist. It could it could be neuropathy due to FA, he quickly wrote back. 

Serves me right for doubting you, FA.

The impossible dream remains just that

For much of the summer, I dared to dream the impossible dream of a life unburdened by Friedreich's ataxia. Last week, the unbeatable foe kicked my ass.

The drug study I was involved in four or five years ago sought to determine if one could replace the protein that the cells of Friedreich's ataxia patients don’t make. I was going to say can’t but who knows, maybe they can and are just being jerks. 

Anyway, this is a drug that I have long waited for. I'm certain that it is more complicated but to me it just makes sense, like a diabetic taking insulin. Early on when discussing this drug, my neurologist said something along the lines of this is not a treatment it's a cure. 

So yeah, I wanted to be involved. 

And in June I was invited to take part in a long-term study of this drug. 

This is what you've been waiting for! a friend excitedly texted me. I was more excited.

The study folks were very clear that there were known no benefits and  there were risks. But because there were no known benefits, I was free to imagine my own: maybe my hearing would improve, or maybe my eyesight, maybe I could stand without a wheelchair to help, maybe I wouldn't be glad when the injection fraction of my heart is low normal, maybe I wouldn’t cough as much … 

But after talking to my neurologist at the screening and then to Mom and my sister, I determined that this study at this time was not for me. 

I know that I made the right decision. That knowledge does not at all keep keep me from being crushed.

I try to avoid hoping or dreaming, especially when it come to Friedreich's ataxia. That way I avoid being disappointed. Like now.

The unreachable star remains out of reach.

A sensible risk

Whenever my sister leaves me alone in the house, she says something like don't be stupid. This means don't take risks.

Now, regardless of whether she's here or not, I kinda use it as a mantra.

For instance, I said it to myself as I was recently preparing to unbuckle my seatbelt to get into the lift. The lift was about five feet away still, so I chose to move the lift closer before I undid my seatbelt.

The problem is, and I know she knows this, when you have Friedreich's ataxia , it is hard not to take risks. If I didn't take risks, I would bed in bed 24 hours a day, which is modestly more than I am now, not a tremendous amount more, especially on the weekend.

What I need is to take sensible risks.

What is a sensible risk?

Makes friends easily?

In kindergarten, we didn't get A's or B's. We got M’s, P’s, and N’s for most of the time, part of the time, and not yet. 

I got M’s consistently, except for one — makes friends easily. That was a part of the time, the bane of my kindergarten existence, which stayed with me through life.

Until I reached college, I would say I maybe had three friends. Sure, there were others I would say hi to and chat with at school, but no one else I’d really call friends. Even the three are kind of a stretch. 

In college and grad school, I got a bit better, but making friends is hard.

Getting a service dog helped, but even then it has not been easy.
This is all to say that making friends is a struggle for me, even without the crap of Friedreich's ataxia.

I went into the office a few weeks ago just for a couple hours to talk to my boss and see some people. It was wonderful. My closest friends at work weren’t there, which was too bad, but it’s hard to dispute how much people, even those with Friedreich's ataxia or perhaps especially them, need connections with people you aren't related to.

A lot of people would telework every day, I have no doubt. And it does have benefits. I get up 20 minutes before a log on and I don't shave every day. Nevertheless, if my body were my own instead of Friedreich's ataxia’s, I would go into the office daily. 

A nice breeze

 I don't really remember either of my grandfathers. They died when I was like 7 and 10. 

I really just have images, which might not even be memories but things  I heard about or photos I saw. 

For instance, I remember getting a little slot machine game from one of my grandfathers for Christmas. My parents had bought it because he didn't shop, and I remember him opening the present himself and being like ‘“let's see what I got you.”

The other one, who died when I was 7, I don't have many memories or even images of him. 

I do see him lying on a chaise  lounge in a jacket, but I have seen pictures of that, so I suspect it's just a memory the photo.

Nevertheless, I have been thinking about that grandfather a lot recently. With my temperature regulation issues, it is more comfortable for me to sit out in the 95-degree, humid-as-all-get-out weather than it is to sit inside. 

I am sure this is not a memory but something I have been told by Mom. Apparently, in the summer he would sit outside, and when someone would ask him if he was hot, he would say a nice breeze was blowing to keep him cool. 

It was obviously much much cooler 40 years ago when he would have been sitting in the sun than it is today. But I feel the same way. 

I suspect he would not be sitting outside on days like today given that he did not have Friedreich's ataxia, but I do like to think he might be out there with me. There really is a nice breeze.

The worst

 It is bad that I have sleep apnea. 

It is worse that the apnea has advanced enough that I need to use a sleep machine. 

It is also rotten that the sleep machine I use was recalled in June  2021. Apparently pieces of the insulation were disintegrating and going down people's throats. I read somewhere that the company knew of this problem for a ticket but did not move to recall the machine or fix the problem until it became well known. If true, this surprises me not at all. I hold companies in general and this company specifically in very low regard. 

Mine was OK. 

In fact, my machine was not replaced until November of 2022. As requested when they sent the new one, I returned the old one using their pre-paid, pre-addressed label. Obviously, I didn’t request any tracking or keep it if I did.
 So this happened like 20 months ago. 

They eventually settled and are supposed pay each person who had a machine at least $100.

If you are like me, however, you might have an issue getting the money, and that is the worst. 

I'd began receiving email that said I needed to return the recalled device to get my money. The first time this happened we called and spoke to someone who gave us a claim number and said everything was OK. But I continued to get the email. And time is running out, so we called this week. 

The upshot was they are not gonna pay me because they say they have no proof it was returned. They want a tracking number from 20 months ago. 

I wonder how many people this huge, multinational company is screwing over.

Not inaccessible but ….

As I rode around town this past week , it was hard not to get a bit depressed.

I was off last week, and it was really nice out -- not too hot but really sunny. The sun made the bike trail out of the question, so I spent a lot of time on the streets and sidewalks and grass. 

It's not that my town is particularly inaccessible. I suspect is as good as anywhere. But what passes for accessibility is kind of a joke. I could get anywhere I wanted, provided I was willing:

• To go around poles and trees in the sidewalks.
• To put up with bumps caused by various covers or sidewalk sections that were inexplicably almost an inch below or above the next section.
• To accept sidewalks that dropped off sharply on the side or curb cuts that were pretty close to 90 degree angles when compared to the sidewalk next to them.
• To accept a bumpy ride to get through the parks because the paths are either packed gravel, packed dirt or nonexistent. Not to mention, my city loves cobblestones.

Mom suggested that I tell the city to help them make things more accessible. I have two thoughts on this. As I said before, I do not think my city is particularly inaccessible. So I imagine they honestly don't care.

In the "they don't care" vein, shortly after I got Fame, a TV reporter did a story on me trying to reached the bike trail from my house. I cannot reach the cross walk button and there is a utility pole in the middle of the sidewalk. They told the reporter they would fix the issue. They didn't.

Saved

 One of my uncles almost never wore shorts. He did work outdoors, but even when he got home, he didn't put on shorts. I never understood this because he had an awesome tattoo on his calf. He died five years ago last week. Still hard to believe.

On my walk today, I went on a repaired sidewalk near the bike trail. The sidewalk was repaired, but the the area next to the sidewalk had not been, meaning there were little gaps on the left and right of the sidewalk.

I accidentally went off on the right, then overcorrected and went farther off the left. They are doing a bunch of work near the place where I was, so I was going to call for a worker or two to come help me. But even before I could say anything, one of the workers started running toward me. He wound up helping me back on the sidewalk no problem.

He looked nothing like my uncle — he was a different ethnicity for one thing — but all I could think of when I saw him running over was my uncle. I have decided that it was because of his long pants. I don't know if he had a cool tattoo though.

No more biff, bam, boom

I canceled my comic book subscription the other day. It's not that it was too expensive. It was an online only subscription so was quite cheap. I just didn't find myself reading comics much. This depresses me. Does it mean I am old? Does it mean I am boring?

Or perhaps most likely, since I was struggling to see the words in the books, It means yet another thing Friedreich's ataxia won't let me do easily.

Too much

 Friedreich's ataxia is really awful, but I have never really considered not being able to suck up what FA throws at me. . . Until this week.

The temperature regulation issue continues. I actually emailed my neurologist to confirm that this is an FA problem. He said probably. 

What I have noticed lately is that I will be uncomfortably hot while I am awake, so I will find it better not to cover myself in a sheet even. Then hopefully I fall asleep. I wake up cold. My feet, of course, are cold always.

But back to Wednesday night. As I always do, I stayed awake until I was really tired. But between my being too hot and the sleep mask I was unable to fall asleep. I did eventually, waking up several times, so it was not a particularly restful night.

I wondered  Thursday whether I can continue to survive what is being thrown at me. I remain uncertain what the alternative is.

A mess but still here

 Years ago, but not enough years ago that I did not know better, I got ridiculously mad that my Moishe action figure from Where the Wild Things Are would not stay in its stand. It was just the straw that broke the camel’s back.

These days I am worrying about the next straw, the next Moishe as it were.

A lot of things just seem to be piling up on me.

Physical things, of course. Things like my sleep or my temperature regulation or my feet hurting or my shoulder bothering me or a recent fall where I slipped out of my chair while using a urinal and wound up on the floor with one hand in Fame’s water bowl and one thigh stretched way more than is comfortable or my hands being unable to press the proper button on my lift. 

Mental, too,  all my worries about everything happening to me.  I am so tired of living with Friedreich's ataxia — not that I have an option — and I don't see how it can get better, only worse.

All the rain doesn't help either.

There is more, of course, but that is enough for now. 

Frankly, I am a mess. I think that is why I have not written in a while. Sometimes writing about what is bothering me helps me feel better about it. Not now. I don't think there is any way things get get better and it's just depressing.

Moishe is still standing in my room. The stand doesn't work well, but he leans against the wall and Bernard, another Wild Thing who stands well. 

Perhaps that is what I need to take away from this story:  That Moishe is still standing with the help of the wall and his loved ones.

How dare I?

 Mom was having phone problems, so she did not call to make appointments for my foot X-rays and circulatory study the other day when she first came over. She planned to do it from home, she said.

She came back a little later with news.The X-rays won't be a problem. In fact , I wouldn't even need an appointment. I just show up.

She called about the circulatory study and was getting ready to make an appointment when she asked what it would involve. At this point, I was sure they were going to say it involved sticking needles in my feet. I've already had that for a neurological test, an EEG, which the Mayo Clinic calls painless. Maybe it has changed, but it was one  of the worst tests I ever had to endure. 

But no, the problem was not needles. 

When they learned that I don't stand or transfer, they said they couldn't do it. They are a hospital testing site, but apparently they qualify as an outpatient site that does not need to fulfill ADA kind of things. 

Disabled people can be so inconvenient sometimes. Needing a medical test. What was I thinking?

It's here!

 I took my first shower in my allegedly much-traveled new shower chair last night. It's pretty cool. 

Delivery took almost a month from when I was told it would be delivered. When they set up yesterday’s delivery they told me that it first went to Oregon and then to a second unnamed location. 

I'm not saying it was worth the wait, but it is very nice. 

It's more comfortable and rolls better than my last chair, which wouldn’t be hard because that chair was probably 15 years old. 

Let's hope this new one lasts as long as the old one, especially because insurance doesn't cover these “luxury” items.

Silly me

 In retrospect, it was pretty stupid, but hammer toes aren't especially unusual in the normal community, meaning the people without  Friedreich's ataxia. So when I was going to the podiatrist Monday to see about my hammer toes, it seemed legitimate to hope for one medical issue that would not involve FA. Keep dreaming, FA said. 

First, the doctor wanted to X-ray my feet. We have an X-ray machine, but you have to be able to stand. You will have to go to the hospital, I was told.

Then the doctor wanted a circulatory study to make sure my feet get enough blood to heal properly. Of course, they don't get. That's why my feet are always cold and have a nice purple tinge to them. Thank you, Friedreich's ataxia.

That wasn't the only issue I was dealing with Monday. 

My shower chair, which was supposed to come three weeks ago, was supposed to be delivered today. That did not happen. I suppose sooner or later I can file a theft lawsuit or something because they took my money.

I also managed to get stuck under my desk.

The Dread Pirate Roberts wouldn’t take this

 As the wait for my misdelivered-to-Oregon shower chair increased, I amused myself by imagining what in the world it could take so long to get from Oregon.

As we neared the two week mark Tuesday, I decided planes, trains and automobiles were out because it wouldn’t take that long to get here from Oregon.

My latest travel fantasy was that they employed a 16th century English merchantmen ship to travel around the bottom of South America and up the East Coast to me. However, they ran into problems on the East Coast of the Spanish Main and were attacked by the Dread Pirate Roberts who stole the shower chair.

But it all came to naught when I got a text from my wheelchair rep telling me that it was coming next Monday. I pointed out that that was a long time for a trip from Oregon and his response was call me.

I asked Mom to call and he apparently told her that the chair was sitting in a warehouse, not on a merchantman. I don't know how long it has been in the warehouse. I don't know whether it was even in Oregon. I do know that I am pretty disgusted.

And that wasn't the only issue with the healthcare industry.

The drug I am taking for Friedreich's ataxia was late this month, so we called, or Mom did. They said that I need a new prescription. That would be more believable if:

• They had not requested a new prescription in January. They said this time that that prescription was just for insurance. I don't know what that means.
• More importantly, it says on my bottle of the medicine that I have six refills left.

Is it any wonder that no one likes the healthcare industry?

Sleeping better??

 After several nights last week when I was unable to wear the sleep mask , I am ready to admit that it helps me sleep better.

I sleep more soundly, I do not wake up as much, and I feel better when I do wake up.

The jury is still out, though, on whether the improved sleep is worth the hassle, especially for someone who has Friedreich's ataxia.

One night last week I was unable to wear the mask because it was too tight on my face. We have had to put tape around the straps so I don't accidentally pull the velcro loose. Thus, I am unable to loosen the straps on purpose.

The other night I couldn't wear it because the air blowing in was too warm. I cannot adjust the air temperature on my own.

There is a device that is implanted in one's throat that opens the air passage that is closed off in sleep apnea.-

I asked my sleep doctor several years ago if I could use this device. He left me a long voicemail telling me why it would not work for me. As I recall, the main reason was that my sleep apnea was neurologic and would not respond to the device. This made sense to me so I didn't push it.

I asked him again in the last year, and his answer was completely different. He said, this time anyway, that I did not reach the threshold for using the device, but if I wanted to spend the night in the sleep lab again, they could see if I now reached the threshold. The sleep lab is located in the hospital where I spent too much time last summer, so I did not want to go there of my own volition. I still don't.

I am also not convinced that my sleep doctor would not take a closer look and say, "oh yeah you're not eligible. You have neurologic apnea."

I still have to stay awake until I am really sleepy to wear it successfully. I'm not sure that doesn't defeat the whole purpose of sleeping better.

Bidet blues

 My sister almost got my call at work today asking her to go home and help her brother, me, off the bathroom floor. 

I was home alone with the dogs, and I went to the bathroom. The bidet seat does not sit very tightly to the toilet. Or perhaps it does for normal use, but when people have Friedreich’s ataxia, nothing is normal.

It came quite loose, which I noticed when I was getting ready to pull up my pants. I decided I better get up cautiously and probably not try and sit back down on the loose seat. 

I pulled up my pants while standing, and  then  I moved the lift with me in a standing position a little off the toilet.

My plan was to lower lift so I’d be on the floor. I could then recover  and put the lift leg braces on. But things didn't work out right, at least not at first. My legs stayed under me the entire time, so when I lowered down like I was kneeling and couldn't put the leg braces on.

So I raised the lift quite high so I was standing on my tiptoes   and then lowered it, keeping my legs in front of me. 

That worked. I was able get completely down with my legs jin front and then put the leg braces under my legs and then I was able to raise up and get to my wheelchair. No problem.

Sleep trouble

 I woke up at 2:41 last night, about three hours after i had fallen asleep — after a usual night of being too hot and my legs jumping. Kind of pathetic I now consider that normal.

I am not sure why I woke up, whether it was a dream or the sleep machine messed up. But I immediately felt that I was choking to death. Well, maybe that is too much. I knew I wasn't choking to death because I could still cough. And cough I did …. A lot.

I also drink some water and eventually it settled down and I went back to sleep.

Oregon?

 I finally bit the bullet and bought a new shower chair.

I say bit the bullet because I had to pay for all of it. Shower chairs are amenities or luxury items that insurance does not cover. Anyone who has used a shower chair will tell you that is the honest truth.

It was supposed to come this morning. But here it is evening, and my old shower chair remains in the shower.

The company called this morning. Apparently they shipped by new shower chair to Oregon.

That is the correct country but little else.

Bless my sole

My brother-in-law was helping me get dressed in the morning a few weeks ago and he was horrified by my socks. They’re “like sandpaper,” I believe he said. 

He let me borrow some softer socks and then he purchased me some socks that met his standards. 

I mentioned that I couldn’t really feel my feet, but I didn't press the issue because I hoped that softer sucks might help a relatively new problem I am having. 

The soles of my feet are quite tired and sore every day. I wondered if it might be related to my foot plate on the wheelchair because it can go up or down. But it's about as low as I can make it without my feet sliding off so I don't know what it is. 

It is not standing either because I haven't been standing regularly since my soles have been bothering me. 

I did try some insoles I have, but they cause my hammer toes to rub on the top of my shoes and cause pain.

At least I have classy socks now.

Bad night

 Last night was not an incredibly restful night for me.

I got in bed, but shortly after I did, my feet got really hot. I don’t like to take the cover all the way off because of how hard I know it will be to get back on. But eventually I had to uncover them — the hotness was making my feet jump. First the left one, then the right one, then both.

The lack of cover didn't really help, so I got in the lift and sat up in my bed for a while the watch TV.

That didn't really help either, so I used the lift to get on the floor and sat there watching TV.

That didn't really help either, but I was getting sick of sitting on the floor, so I got back in bed determined to put the mask on.

Of course, before I  could do that, my feet get cold and I needed to put them under the covers. 

As I knew it would, this task proved monumentally difficult and lengthy. After about 20 minutes I got my feet covered, but I was totally wired and not tired at all. The good news about this challenge was it made my legs stop jumping.

My awakeness lasted about five minutes and I was so tired it was a struggle to put on the mask. I thought about giving up, but I kept at it and eventually got the mask on.

And then I fell asleep.

In the morning, I took off the mask, and it fell behind my back, creating a new struggle. Awesome.

Tired and sad

I haven't written for a while, but unlike previous times when I could say it was hard to write, I don't have a good excuse.

I am just really tired, and with that really sad, about everything that Friedreich's ataxia saddles me with, sometimes something brand new and completely unexpected.

• The temperature regulation thing continues to be a real thorn in my side at best
• The sleep mask, even if I am used to it and able to wear it most nights, requires me to stay up too late  till I am really tired so that the mask doesn't wake me up when I put it on
• My feet are bothering me even when I'm not standing for reasons I can't explain
• My wheelchair has problems that it should not have for what is supposed to be such a wonderful chair
• My eyes are not working well together

I could go on but it would make me sadder and more tired.

Bad dream

Since I started dreaming I have been worried it would get me in trouble. 

Not Clyde Bruckman kind of trouble. He was a character on the X Files who could see people's deaths. 

Instead, I thought something like this would happen and tonight, or last night as I will be posting this on Tuesday after wiring it last night, it finally happened: I had gotten a urinal and was going to the bathroom fine until midway through I realized it was a dream. Well, part of it was a dream, the part where I got the urinal.

The bed was soaked. I was wet. I had to call my sister,

Fortunately, since I have been sleeping bottomless, which I have been doing since my sepsis last summer, I have not had to bother her much at night. I did last night.

And unlike Clyde  Bruckman, I have someone to trust.

Standing tall against Wretched So-And-So

My niece plays ice hockey for her college. She is the goalie, and they are playing in the conference championship today.

She is quite good, I am told. I don't really follow hockey because I can never see the puck.

I called up the semifinal yesterday on my phone right before my nap to just see the score. But I got sucked in immediately. The announcer seems like a big fan of my niece. He kept saying things like how stellar she was or she was standing tall in the net. Also, it was captioned— albeit badly. It kept referring to an opponent as “Wretched [common first name]." I think the common first name was her last name. I'm not sure what the wretched was.

Anyway, I got hooked. She seemed, to this very untrained hockey observer, to be playing well and she was shutting out the opponent. They only scored on a controversial play at the end of the game.

Before I knew it, I had no nap and it was time for dinner.

I went to bed early, but the lack of a nap makes it hard to fall asleep. I was up too late. My legs started jumping, first one then the other. I had problems getting the sleep mask on, then I had to take it off to get the lift around my neck, so I could use the lift to relax my legs.

The lift did work but I was not really well rested.

They play again today. Right before my nap. I'll probably watch.

Dreamy

Somehow, I do not think that the doctors who say the sleep machine is the greatest invention for me period, would think much of my most important condition for using the sleep mask. To be successful in wearing it, I try not to put it on until I am exhausted.

Putting it on earlier runs the risk of it waking me up and then not being able to fall asleep,. and that is a risk I won't take.

But Thursday night I was really tired, so I put it on an hour earlier than normal. I honestly am not sure what happened next.

I know that I felt like I was lying there awake for nearly an hour, but I am not sure whether it was real or a dream.

I wanna new drug

I took my first dose of statins last night to try to lower my cholesterol after the new drug for Friedreich's ataxia sent my cholesterol through the roof. 

I told my cardiologist that my cholesterol was high and that my personal care physician was going to retest my blood in the spring and start me on statins assuming they were needed. 

Apparently, that wasn't good enough. 

Which is one of the reasons I was a little annoyed to get this text that said how the drug store was working on a new prescription for me.

Eventually my cardiologist's nurse did email me but not before I got the text from the drug store.

Plus I told them this. It was nothing new.

If my cardiologist disagreed with my primary care physician, I sure wish he had told me when we were talking about it during my appointment.

Also, I am starting to get awful tired of this drug that is supposed to treat Friedreich's ataxia but so far has just raised my cholesterol.

Finally, I have been exercising 30 minutes almost every day this year, and I hoped that would lower my cholesterol, making statins unnecessary. That did not pan out. So why exercise at all?

I hate drugs.

Just like John Candy

When I watched Cool Runnings, the movie about the Jamaican bobsled team in the Olympics, for the first time what stuck out for me was not their cool rhyme or the various comedic touches, no it was that their coach, John Candy, slept in the Olympic Village at the Winter Olympics with his feet uncovered. I thought it was insane!

Now, though, I find myself doing the same thing albeit not at the Olympic Village.

My feet are hot and I uncover them, and they get cold. And of course they jump throughout.

Friday night, for instance, I wound up lying in bed and watching TV with no cover on. Then my feet started to jump, mostly the right one. I eventually got in the lift and rode around a little to try and relax my feet.

It mostly worked, but who in the right mind feels like riding around in a lift at midnight? Other than people with Friedreich's ataxia, that is.

Uncle Matty

The problem with not hearing well goes beyond not hearing well.

One of the biggest problems for me in conversation its finding a legitimate space to respond.

At work, I rarely speak in meetings, but if I have to, I have decided to just interrupt and ignore everyone so I can say what I need to. If I judge by what the captioning in our meetings say, I'm pretty sure they don't understand me. Or I can judge by the silence of people and their confused looks to tell the same.

For some reason, I find myself more unwilling to interrupt during our family zoom every Monday. 

We were discussing how we never referred to our uncles and aunts as “uncle or aunt so-and-so” and how my nephews and nieces generally didn't refer to people this way either. 

I would have liked to point out almost all of my nephews and nieces call me Uncle Matty. I'm sure it is a sign of respect.

Matty unplugged

I may be in the minority of people in wheelchairs who wear the seatbelt tightly.

It’s not that I find it particularly comfortable. My old physical therapist just hammered it into me that a seatbelt is not just to protect you from accidents , it is also needed to keep you sitting in the right place.  

I used the urinal the other day and slid back in my chair to get back to work. I automatically reached down to tighten the seatbelt. Only instead of pulling the seatbelt, I wound up pulling a cord and disconnecting my chair. 

I tried multiple times to reconnect it but wound up having to call mom. My Friedreich's ataxia laden body was not up to the task. Shocking, I know. 

What, you may ask , was a cord down where it's so easily unplugged? Good question. 

 The other day a wheelchair technician came over to install some new armrests. He pointed out that wheelchair companies tend not to fix things they don't have to. So even my Cadillac of power wheelchairs , which I love still , leaves a lot to be desired.

What to do

The latest problem with the sleep mask, not a new problem, just the biggest lately is the mask straps.

They are supposed to keep the mask tight on my face. In reality, they are an annoying joke.

First off, they tighten or loosen with Velcro. But for me, the Velcro just made it easy for the straps to come undone when I was sleeping. This sort of defeats the purpose of keeping the mask tight on my face.

So we put tape around them to keep them tight. This works, but of course I can't adjust the straps if I run into a problem at night.

They also change length or something, it seems, because my head moves at night shockingly. So it will fit when I put  it on but wind up being a bad fit.

The upshot of all this is I wake up in the morning with a really dry mouth and I'm not even sure if the mask is doing its job.

I talked to my sleep doctor about some kind of procedure to put an object in your throat to keep it open, thereby doing the job of blowing air into my mouth. He originally said it would not work for me. When I asked about it again, he said that my sleep apnea was not bad enough to require the procedure, but if I wanted to spend another night in the sleep lab, which is in the hospital, I could see if my apnea had worsened enough to make the procedure necessary.

 I had no desire then, or now, to spend another night in the hospital. I don't even know if I want something put in my throat. But I am increasingly tired of a sleep mask I don't think works well for me.

Sleeping soundly

I thought I had reached the pinnacle of my sound sleeping in college when I slept through most of my roommate’s successful efforts to break into our room via the window next to my bed.

Apparently, though, I have miles to go to show how soundly I sleep. I took several steps this week.

On weekdays, my first alarm goes off at 6:30. I get Fame her pill, then I take my pills. My second alarm goes off at 6:56. I basically just wake up and wait for my sister to come help me get dressed.

Yesterday, I woke up with both alarms but somehow fell right back asleep after the second one. I did not wake up until after my sister had put on one of my socks. We laughed and that was it.

I never anticipated that it would get worse.

This morning, I woke up with my alarms but fell back asleep. I then woke up as my sister walked in the door so I figured I had not missed anything. At least until I looked down. I had been completely dressed while sleeping — shorts, socks and shoes.

Kind of embarrassing.

Untracked

When I worked at a newspaper in North Carolina, I was young and idealistic, thinking I could change things. One of those things was the sports staff's regular use of the word untracked in the sense of “ the baseball player finally got untracked, hitting back to back home runs. “

Untracked really means the opposite, I told multiple people. I used the example of a train. If it were to get untracked, people would perhaps die as it went off the rails. 

They generally agreed with me but said it's just used differently in sports. So I gave up, not my last losing effort.

I was thinking of this today because I find that I get untracked in the correct sense of the word very easily.

I plan out what I want to accomplish that day or that afternoon, but if something happens, usually related to Friedreich's ataxia, I find myself just spending the afternoon playing a computer game or reading or whatever, not doing what I had planned.

If I did not have Friedreich's ataxia, maybe I could use it in the incorrect sports way about me. Because if I did not and Friedreich's ataxia, I could play sports.

Diagnosis from hell

 As I lay in bed last night at 11:30 having just returned from the bathroom I thought to myself, What is wrong with me?

Almost immediately after I got in bed, I started getting too hot. I took off my afghan and uncovered my feet, so they were bare. But then they got too cold. So I re-covered them with my sheet, but then they got too hot. I uncovered and re-covered multiple times over the next hour or two. 

At some point in the covering and uncovering, my right foot started to jump.  That is why I was in the lift already and decided just to go to the bathroom to see if it would help relax my legs.

It seemed to work, but of course I was then wide awake from all my exertions.

So what is wrong with me? Oh right, I have Friedreich's ataxia.

I’m walking

 As Friedreich's ataxia continues to have its way with me, I am finding that there are fewer and fewer things I can do by myself for me and for Fame. 

One of the things I can do is take her for a walk, although I do need help with my coat and the rest door. Nevertheless, I mostly am on my own, so I have resolved to walk even on days I don't want to. Days like today, when the brass monkeys were certain to stay indoors.

I wore my parka, my snow pants chaps and my poncho. Because it was windy, I had my gait belt fastened around my thighs to keep the poncho from blowing.

I was still cold, and even when I was back indoors I was uncomfortable. I tried adding a warm shirt, but my temperature issues quickly weighed in. Essentially, I spent the afternoon in shorts and a T shirt.

Now I am in bed, writing and already am too hot.

A winter pleasure

This is a real blog it will become obvious at the conclusion. But I figure a warning is necessary because in the following sentence I am going to use pleasure and winter in an unironic way. 

One of the great pleasures in my life during the winter months is that I can wear sweatshirts. They are so warm and cozy. They almost make up for being cold.

I have hardly worn a sweatshirt for an entire day this winter because of my temperature issues.

Sunday, for instance, I wore warm clothes to go for a walk with Fame, but when I got home I put on sneakers and shorts.

When I was applying to colleges, I visited Boston College. There were a ton of people wandering around in February in shorts. This drove me crazy. Now I am one of those people.

What a sister

 It must have taken all of her control, but my sister did not say my plan to brush Fame while sitting on the floor was stupid.

It was, of course, and it was doomed to failure pretty much right from the start.

It's just that I have good memories of brushing my first dog, Claren, and it makes me sad that I can't brush Fame in the same way.

The plan today was to use the lift to lower myself to the floor, or actually, to lower myself to Fame’s bed and sit on that to brush her. My sister suggested Kenny’s bed because it has some traction on the bottom. So she got it and positioned it under the lift, that she left.

I lowered myself okay, but the problem was that I couldn't lean forward enough to brush anything. I also could not get my legs either spread wide enough to let Fame between them or close enough to my body to let Fame near me.

And of course, I was pretty wobbly.

So it was really  dumb and a waste of time. But my sister didn't let me know that. YAY!

Dose me up

 I am waiting to hear if I qualify for another drug study. Actually, it is not another one. It is a new phase of the one I took part in four years ago. 

This phase would be a long-term, at-home study of how the drug works over time.

All the participants in the study will get the drug and inject it into themselves. 

Although I was telling an older sister about this and she said I wasn't allowed to inject a myself. I I told her no, they said I could and would train me. She said no, she was saying I was not allowed to. Oh well. 

The drug, when I first heard about it, was presented as a cure, not just a treatment. That was by my neurologist, who is not prone to exaggeration. 

The drug inserts the part of the cell that is missing and Friedreich's ataxia. 

It said in the original email I got that no overnight stays in clinics would be required, but I am sure they will require regular visits to track me.  I am waiting to see where I'd have to go.

I would like to go if I get accepted because who knows how much more Friedreich's ataxia I can take?