Thursday, December 29, 2016

How was the play, Mrs. Lincoln?

Your eyes are healthy, but you need bifocals.

I like my optometrist a lot but am a little confused. Can a body part be healthy if it can't do the one thing assigned to it?

It's like my primary care doctor saying I am generally healthy. Well yeah, if you ignore the massive disability that is going to kill me.

If my eyes were healthy,  I wouldn't need bifocals. But as it is, I will put off the books I got for Christmas till I have old-person glasses.

Wednesday, December 21, 2016

A few good men, and women

All right, first off, the paucity of the Nativity has absolutely nothing to do with the cold I have had.

I had hoped to have a Matt and Fame action figure in the Nativity this year, but the not-so-awesome digital printers at Awesome Con took my photos but never got in touch with me figure-wise. Very sad. I did get a new action figure this year. He was from Star Wars: The Force Awakens, in theory. But he never made it beyond the cutting room floor, so but he was deemed Nativity-unworthy. Actually, he is still in his box — that’s the real reason. I also got Captain America from someone at work. I never found out who. He is at the office, though.

But look who is here!

Jesus, Mary and Joseph and Santa, stalwarts all.

Silver Surfer is watching over things. I know it ignores Aunt May’s turn during one Assistant Editor’s Month, but he is the coolest herald of Galactus.

Next to him is Buffy the Vampire Slayer to provide a little slayage if any “forces of darkness” show up. I watched the first two episodes of Buffy recently, Awesome. I can’t wait to watch the best show ever with my niece.

Next up are the Big Three.

Then there is the cowboy who rides an ostrich from the Island of Misfit Toys. I can’t believe I left him out this long.

Shaggy is in mainly because we moved a plant when I put up my tree, which meant I had to move Shaggy, which meant he was blocking my clock. But maybe he has some Scooby snacks in case folks get hungry.

Finally, stepbrothers Juggernaut and Professor X. Really, they are. The Marvel Universe is a mite incestuous.

Here are the ones from 2007,  2008200920102011201220132014 and 2015. These posts also have some background. And God must be amused by this because I have not been struck down yet.

Monday, December 12, 2016

Wow

Add wheelchair repair to the always-growing list of things friends at work do for me.

I was in the bathroom using my chair arms to push myself backward when the right arm just collapsed. I got it to sit on another part of the chair and drove into my friend's office to ask her to take a photo, so I could get it repaired. She did, then added, I see what's wrong. She fiddled with it for a bit, called someone else to help her, and they fixed it.

Last week, it was pancake-cutting and foot placement (I could not get my feet to stay on my footplate).

Before that, it was keeping me company while I waited for a wheelchair-friendly shuttle (hint: We don't have any).

And so on: picking up dog poop, getting Fame water, picking me up off the bathroom floor.

It is not awesome that I need all this help. It's decidedly unawesome, actually. And it is so hard to ask for help. With the pancake-cutting and foot placement, I honestly didn't. I don't want to make anyone uncomfortable. My friend asked me!  And then when I thanked her and told her how hard it is, she said I can ask her for help with anything!

I am trying my hardest not to say I am lucky, but I am not sure what else to say.



Saturday, December 10, 2016

Music in my head

It is too soon to tell whether these new hearing aids work or whether  I have the world's most expensiveit  AirPods, but the AirPod aspect is pretty cool: My phone and laptop play music right into my hearing aids.

They don't play it audibly for others either, so if a meeting is boring, I can listen to Bruce Springsteen.

I  am hopeful these will help. They're another company, better doctor, and things do seem louder.

We'll see.

Thursday, December 1, 2016

Forget waterboarding

I was watching a James Bond movie the other night, Spectre, which was awesome.

But it doesn't really matter which one. You don't really watch a Bond movie for innovation. They're all great, and they generally follow a familiar script:  Bond is shown to be dedicated to his truth, lots of beautiful women, crazy car chases, gun battles, gadgets, a supervillain, more beautiful women and elaborate torture device Bond escapes from.

Now, the best way to deal with a captured Bond would be, as Scott Evil says, to just shoot him, but bad guys tend to have their idiosyncrasies, so I'd like to propose the torture that sent me to the ER Wednesday and still hurts.

Put Bond in a power wheelchair. Drive him up to a keyboard tray. Raise tray to upper sternum height. Drive him into tray, not fast or anything, just consistently.

It doesn't sound like much, but it is probably the worst pain I have experienced. I had to take a few seconds to regain my composure and convince my arm that moving to the joystick and moving backward was  better idea than passing out or crying.

The doc at the ER suggested I just bruised everything in there, and because I could breathe OK, he didn't think an X-ray was needed. "Ice and Advil was his advice.

It's OK if I don't move my chest, but as you might expect, I cough, yawn, use my arms to move, burp, etc. Then it hurts like #%#^.

And I write this to keep myself from thinking about the other aspect: the "Hey God, give me an effing break" one. I have a broken, or injured, rib. I hit my head this week before this debacle. And it'S not just me, but everyone it affects. Fortunately, for me anyway, a lot of people help me, so it affects a lot of people. But come on!

Tuesday, November 29, 2016

Siri saves the day

Siri and I have a complex relationship, especially on my iPhone.

For the most part, I ignore the option to ask for help on my phone. On the rare occasion I do use it, Siri responds that she not quite sure what I said. Very politely.

On my  watch, Siri works better, not perfect but better. I use her to call people on my watch when I need help. It's never really been life or death, though.

To be clear, yesterday wasn't life and death. It was just fall and use the phone or use Siri on my watch and don't fall.

I was pulling up my pants in the bathroom when my feet slid forward so my armpits were resting on the arms of my chair. I couldn't reach my phone unless I let myself fall.

"Call Sam," I asked Siri on my watch, and she did!

Saturday, November 26, 2016

The dark is rising

It is no secret that I don't care for Thanksgiving.

The season is part of it.

I have had plenty of energy the past few days, but the sun going down robs me of it.

It is rotten to deal with the cold, too. I hate all the extra work dressing becomes.

But it is not just that. My body seems to be failing more regularly.

I am exercising more, but my body seems not to care. And I fall or whatever. Maybe it is that I can't save myself like I used to.


Sunday, November 20, 2016

FA doesn't care

I am struggling.

For the past several weeks, all I have wanted to do is nap, read comic books and watch TV. I combined the last two by catching up on Arrow, watching 18 episodes over the past three days. (That Felicity Smoak!)

But amid my struggles, regular life with Friedreich's ataxia does not slow down, leading to a new catchphrase: There is nothing FA can't make worse.

I fell last week. Unlike my usual falls. this one hurt. I bashed my right side on the heating grate in the floor and think I probably cracked a rib.

Not much to do,  I hear.

The problem is, though, that normal people can avoid using the muscles that stretch across the ribcage. I can't. Or I can, if I want to stay immobile in bed. But I only have a few more episodes of Arrow.

Sunday, November 6, 2016

Really?

On Friday, Mom said that no one would believe my life. She was referring to an incident where I lost my socks and had to get dressed without socks, then ask my sister my sister to take off my shoes, put on socks and then shoes. (I should perhaps point out that I lost my socks on my bed. I can't get up safely without shoes.)

I think more unbelievable is the coda to my hearing aid fiasco over the summer. The company never informed my insurer  that I returned the aids.

I learned this when I tried to buy another set of aids from a third audiologist .

Tuesday, October 25, 2016

New chair

Taller than my niece and nephew again thanks
to the seat elevator, which is helpful at my
work desk and during transfers.
Most of my free time the past week has been dealing with A NEW CAR. No, no, a new chair.

It is pretty nice, but there have been a few issues. Fortunately my physical therapist has been there to help me with them.

Two remain.

The worst one is that the reverse speed is double the forward speed and reverse acceleration is much quicker.
This caused several sticky situations in the first few days.

The cantilever arms are also an issue. They cause the arms to stick out too much, meaning it is quite hard to get through doorways that require an immediate turn afterward.

But it feels good, allows me more freedom and gives Fame a new place to sleep.

The old chair had leg rests that I took off at night and put on my recliner. The new chair has a footplate, and Fame has decided she likes the recliner.

Monday, October 17, 2016

A tale of two doggies

 I am afraid that Claren will come across as a jerk in this post, so let me say, she is the best dog ever. fame, of course, is also the best dog ever. I am sure any who has had dogs knows what I mean.

We had a fire drill Thursday. Fame was not a fan.

I think she knew something was up when she saw five people around me, four of whom were transferring me to the Evac Chair, which lets my co-workers take me down the stairs, and one who I had asked to take Fame out because the Evac Chair is too cumbersome for Fame to come with me. This  is a good friend who likes Fame.

At my old job, I just stayed in the stairwell, so I had a friend take Claren out. She was like, whatever. And I remember hearing something about her playing or wanting to play with some guys who were tossing around a football. In short, Claren liked fire drills.

Fame does not.

She really did not want to go with my friend. When I finally got outside, several people told me how she  was shaking without me. When it was time to go back in, she practically leaped into my lap to keep me from disappearing.

I feel bad for Fame, my friend who had to deal with her, pretty much everyone involved.

Thursday, October 13, 2016

Cheating death again

Mom was visiting my sister-in-law in the hospital last night. I'm kind of surprised she didn't run into me in the ER when she was leaving. To be honest, I'm surprised she didn't have to go to the morgue to pay her last respects to her #1 son.

I fell last night, and don't know how I did not get a concussion, snap my neck or kill myself. I didn't, but don't get how come.

I was transferring from the toilet to my chair and made it OK.

Then I leaned back. My chair has two wings on it, so it looks like a U, and my back rests in the bottom of the U. Last night, I did not lean back evenly. One of the wings hit my back and I slid outside the U and over the arm.

I flailed around and managed to catch the superpole, so I was briefly OK, but then my hold gave out and I fell on the top of my head. The rest of my body quickly followed, putting too much pressure on my neck. I quickly pushed my  head out from under my body and just lay there. I was tempted to lie there forever, bur then Fame dropped her stuffed Chewbacca on me and started licking my face, so I called my brother-in-law for help.

This morning, sore and tired, I said to myself, "I suppose I'm not dead, so I better go to work." and so I did.

Monday, October 10, 2016

Uninfected

I finished my pills Saturday, and the unexpected benefit has been the easing of the worst of my incontinence.

I am not going to win any continence contests -- and I really hope there is no such thing as a continence contest -- but the issue that sent me to specialists for three and a half years was cured by an antibiotic. That's a bit frustrating.

They all told me that the kidney stone screwed me up.

Instead, it appears to be a simple infection.


Monday, October 3, 2016

Honest excuse

I have written for a while and need the rest of the week off. Not that nothing has happened. For instance:

  • I learned Amazon sells sex toys.
  • I found out my dog prefers to sleep in my recliner than on my bed.
It's just that at my physical, my doctor found a urinary tract infection. No biggie. She has found one the last few years. We have written it off in years past as nothing, but we are now treating. Which is fine.

But you are supposed to drink a lot. 

So you wind up going to the bathroom a lot, which is hard with a computer on your lap. 


Tuesday, September 27, 2016

From the mouths of babes, even sarcastic ones

I sighed audibly Sunday night at dinner.

My sister asked what was wrong. Nothing, I said, I just had a busy day, thinking mostly of my trike ride.

My nephew chimes in: Yes, every day is busy when you're always sitting down.

I didn't hear him but knew it wasn't good because my sister was laughing  and my nephew was smiling broadly.

I went ahead and ignored the sarcasm and thanked him for understanding because he was right.

It is busy and hard.

Thursday, September 22, 2016

Mini-him

As if I needed a reminder that my 11-year-old nephew is his father's son, I was reminded yesterday.

I was in my manual chair because the ball bearings in my power chair had died or disappeared or what ever ball bearings do when they fail, so I called him to help me up the ramp into the house.

Sure, he said, and he came out.

What he mostly did, though, was keep me from rolling backward while shouting encouragement at me to keep pushing myself up the ramp.

It's not a bad thing he is like his dad, who does love and help me but does the same thing when he pushes me up the really steep driveway in my bike.

Monday, September 19, 2016

Things fall apart, but what?

Mom found a big screw on the floor of my bathroom over the weekend.

It doesn't look like it is from my chair.

Mom found it shortly after picking me up off the floor with the lift, and it could be from the lift. But I can't find any screws on the lift.

I thought it might be from a shelf in the bathroom, and it  does look like it's from that, except the shelf isn't missing any screws.

Mom said we'll know what it was from if something falls apart.

Saturday, September 17, 2016

Holding on

I have been sleeping poorly.

I fall asleep fine, but then wake within the hour,  my legs jumping, tired but unable to fall back asleep.

Mom blames the shorter, cooler days, and I am sure they play a part. There are other forces at play, too, and the result is I am just surviving.  

Monday, September 12, 2016

inaccessible

When  you feel less than awesome mentally, you see clearly how inaccessible the world is.

The elevator that closes before you can get to it every day becomes a big deal.

The button to open a door that is  hanging on by a screw becomes a significant problem.

I can deal with these on good, even OK, days, but  on days like today, I am reminded how disabled I am.

Saturday, September 10, 2016

I can't even sit right

To sit properly in a wheelchair, you need to scoot back into the chair as far as humanly possible.

Then you need to slide back a few more inches.

The seatbelt is actually called the pelvic positioning device, and is supposed to hold you back there if  you can get there.

I rarely sit as I should.

When I was defending where I sit to my physical therapist, I told her I didn't scoot far back because my cushion back there has no padding anymore.

Well how old's the cushion, she asked.

I told her four or five years, like the chair itself, and I swear I can imagine her smacking her forehead and slowly dragging her hand down her face.

Matt, she said instead, you are supposed to replace the cushion ever year. It's covered.

Why has no one ever mentioned that before?

Tuesday, September 6, 2016

My saviors?

One of my nieces claims to have saved my life. I have no recollection of the heroic move.

But she swears I slipped off a step in a pool (very possible) and she pulled me from beneath the murky depths.

A few issues raise red flags in my mind: First, she was kind of young when we were at the house with the pool in question. Not to say she couldn't have helped me. She's tough. Second, I would never go into a pool without adults around. Third and most importantly, she also talks about "saving" me when  helping me out of my recliner. She forgets to say how she basically dropped me to start with.

I was thinking about this and wondering how her Mini-Me, the13-year-old niece I live with, will recount an episode yesterday.

She has been helping me exercise when she has a moment, and we were finishing up. She also wanted to use the lift, so I said, sure, you can put me from my bed, where I exercise, to the floor.

To get in the lift, I need to be in a seated position, so I was working myself up when she came around behind me. I figured she was going to block me from falling back, so I stopped holding myself up.

Next thing  I knew, I had collapsed backward onto my niece, who was collapsing in hystetherics and blurting out essentially, whoops.

At some point between gales of laughter from us both, we got me sitting, then into the lift.

Laughter is good, especially when not at dinner-table blessings. Note to non-family readers: I laugh at  inappropriate moments involving prayer and the dinner table pretty regularly. It's laugh or cry.

Anyway, laughter is good, so maybe they are saving me.

Sunday, September 4, 2016

Bruce Springsteen would love leg loops

I just bought these things called leg loops. They velcro around your thighs and provide you  with a new place to grab. My therapist had mentioned them, and then I noticed at work that I use my pants by grabbing them. The leg lifts will just make it easier.

The only downside is I have rot wear bands on the outside of my pants, but that's OK. It'll be like I have racing series now.

And my title? "I just want something to hold on to," Springsteen sings in  Human Touch: Me, too. And  now I have leg loops.

Friday, September 2, 2016

Excuse?

My goal is to  exercise five times a week for just 20 minutes a day. I'd like to blog every other day.

I rarely accomplish either.

It's not that I am too busy or that it is too hard.

So often, it just seems as though things crop up  to prevent me, and I honestly don't know if they are just excuses.

I never feel wonderful. Why then can I rise past that sometimes and write or exercise? Why sometimes can I not?

I told my physical therapist this week that I have never had basic instruction on wheelchair use -- like how to sit, transfer, etc. Everything I know is what has worked for me marginally well so far, but as I get more disabled, I need better form.

I just need more answers.

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

Sapped

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.

Really.

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.

Tuesday, July 26, 2016

Larry, Moe and Matty

I thought I was trying out for a Three Stooges remake Sunday night with one key exception: I doubt either Moe or Larry felt like collapsing in tears (Curly — maybe. Moe could be so mean).

I got my lift Sunday, so Mom was using it to help me into and out of the shower.

All went well till it was time to get in bed. The lift does not fit under the bed, and bed transfers are usually OK, so I just got into bed the normal way.

I planned to anyway. What happened instead was I missed the mattress when I sat down and slid to the floor.

We can do this, Mom said, so we got out the lift and got me back in my chair. I then tried again.

It happened again!

Again, we got out the lift and got me back in my chair.

At this point, I noticed the mattress was pushed back, so while I was plopping down in the right place, the mattress wasn't there.

We moved the mattress, and on this, the third try, I succeded.

Saturday, July 23, 2016

Just call me Neville

My physical therapist said I need to exercise 20 minutes a day, 5-7 days a week. I normally do about 45 minutes three times a week, but I have engaged my niece to help me a few days a week to get to five.

Or if she is unavailable, I have exercises I can do myself.

That was my plan today until I dropped the urinal.

By the time I got help, it was too late.

After Mom helped me change and cleaned things up, I mentioned how “defeating” something like that is. I was thinking about how there was no way I was exercising.

She agreed, “how can it not?” But she said I have to deal with it as best as I can.

I said that’s the thing: I can't defeat this; it’s like I have to make a truce with FA.

She agreed and said it was better than being defeated.

But isn't that what Neville Chamberlain thought?








Tuesday, July 19, 2016

Not with a bang but a whimper

The Streak ended Saturday with a totally preventable and wimpy fall. The bang came on Monday.

On Saturday, Mom was helping me get dressed, but needed to leave for a wedding. Of course, I told her, I can pull my pants up. She left; I fell.

I wasn't hurt, just annoyed.

I wasn't hurt Monday either, though I did my best.

In three transfers over two hours, I fell. requiring my sister and brother-in-law to rescue me.

Friday, July 15, 2016

I am a jerk

When Cal Ripken was nearing Lou Gehrig’s record for consecutive gamey e was hurting the Orioles by playing every day.

My Streak critics aren't saying I am hurting the team (the family) but I can relate to the jerk comment.

At first, I thought it was just a “Haterz gonna hate” thing. It was my sister after all; she is always harassing on me. (But she is still the best little sister ever.)

Her main criticism is that if I can manage not to fall when they are away, there is no excuse to fall when they are home. She says that when she and my brother-in-law are home, I just let myself fall because I know they are there.

It’s not that simple, of course. I probably do take more risks knowing they are around, but they are calculated risks. The calculations just don't work out sometimes.

Anyway, my physical therapist asked about my falls, and I was bragging about the Streak. She was like, be extra careful all the time, you jerk.

OK, she didn't call me a jerk — she’s too nice.

I guess I need to apologize to my sister. Cal wasn't a jerk, though.

Sunday, July 10, 2016

12 and 0

I know we are supposed to be impressed with Stephen Strasburg, the Nationals pitcher who is 12-0, but I have what I consider an even more awesome feat.

My little family, as Mom calls my sister's family, returned home today after a vacation of 12 days, and I didn't fall once.

More or less.

I slipped some but never went down.

Now if someone would pay me Strasburg money for my streak.

Thursday, July 7, 2016

Dirty ears

Contrary to popular belief, the Q-Tip box doesn't say don’t use in the ear. It says don't stick in the ear canal, just gently clean at the entrance of the ear.

And to be fair, that’s all I was doing few days ago.

Until I slipped, that is.

Then all bets were off. I felt a little pain as I jabbed something in my right ear, but nothing serious and I forgot about it.

But today at my hearing appointment, my doctor went off hunting a better ear scope, then showed me the blood inside my ear.

She wasn't worried, just said don't do that and leave out my hearing aid to let it heal.

I’m a bit easier to worry. I want to throw up, mainly because there is yet another thing I can no longer do because of FA.

Monday, July 4, 2016

Awesome disease

As school ended for the summer, my niece brought home thank-you notes from her class for my FA talk to them. Her teacher had forgotten to mail them to me.

They mostly made me laugh. They often called me Mr. Matt and referred to Fame’s tricks. But I don’t think I quite got across the horror of Friedreich’s ataxia, which they all spelled right. they often said my speech was fun or awesome.

My niece’s made me want to cry, though.

She told me how I “kicked butt,” and how lucky she is to be related to me.

Yes!

Saturday, July 2, 2016

Lift me up


I don’t see how this is easier, Mom asked the lift salesman who came to the house last weekend.

Easier? he responded, looking confused. No, it’ll be safer.

And that, I guess, is the thing these days.

Nothing that is safer is easier or faster or less expensive.

And it will be expensive, and not easily covered by insurance.

The plan is to get a portable lift and mostly just do what I do now. The lift will be for if I fall, then Mom or even the kids could help me.

It was the same lift salesman as before, but this time the lift did hold me securely.

Given the involvement of insurance, I don’t expect one soon.

Tuesday, June 28, 2016

And now for something completely different

I had to brag last week at work, so I went into my friend’s office.

I need to brag, I told her. She said OK.

So I started: I fell in the bathroom …

That’s as far as I got before she interrupted: That doesn't sound like much of a brag.

It gets better, I said, and continued: I fell, but because of the bath mat I now carry to give me extra traction when I transfer, I was able to pull myself up. 

YAY me!

But she was dubious. It sounds like something horrible happened, but it just turned out not as horrible as expected.

Well, yeah, I agreed, adding that that qualifies for a brag in my book.

She got on board then and gave me a fist-bump.

Sunday, June 26, 2016

Can you hear me now? Nope

I thought lack of hearing is supposed to be depressing, not hearing aids, but I am really struggling with the hearing aids.

I went back last week because there was no change in my hearing. They replaced the domes that carry the sound into my ears. Originally, they were open, which they hypothesized was letting the sound leech out.

Things are clearer now, and the key word is things, like the creaks of my chair. People are no better. They might be louder, but I can't understand them.

This is the nature of my hearing loss. I can hear, but my brain can’t translate them.

I asked the doctor up front if these hearing aids helped with this type of hearing loss. She breezily said they do.

Now I am not sure.

Wednesday, June 22, 2016

Unexpected day off

I missed work yesterday, but it wasn't my fault ... completely.

One of the capsules I take each night sort of controls my unruly bladder. I say sort of because it only sort of works.

But yesterday it didn't even have a chance to sort of work.

When I tossed it into my mouth, I apparently missed. In the morning, though, Fame did not miss.

The animal poison people said she'd be OK, but I was concerned about being at work, or anywhere without a urinal.

Anyhow, I am blaming Fame.

Saturday, June 18, 2016

Tears on my pillow

I cried myself to sleep Thursday, the day i got hearing aids.

Not because they didn't work, which they don't, but I know my brain has to adjust to them.

Not because they make my ears itch like crazy, which they do, but again, it's an adjustment.

It was because they ought to have a warning label:  If you have dexterity problems, don't even think you'll be able to use these.

I can't put them in, change the batteries and more. They come on automatically and adjust automatically. This is a good thing because I can't use the power button, the volume button or the one that switches between settings.

I don't think they get much better; I know my dexterity won't.

Wednesday, June 15, 2016

PT, or Party Time

Yesterday I sat on a 65-cm exercise ball and didn't fall off! Granted, my new physical therapist was holding on to me, but still ...

I am quite pleased with the PT. She seems quite smart and fun and kind. She teaches at one of the local PT colleges and was recommended to the PT student who  works with me and asked his adviser if she knew of any good neuro PTs.

She is also working on getting me a new chair. She just rolls her eyes at a lot of stuff on my current chair. It would make me laugh more if I wasn't stuck in this bad chair.

I really like PT,  having people who understand your limits  but still push you to improve.

Now I just have to convince my sister to let me use the exercise ball when my student comes over.

Saturday, June 11, 2016

Think of the toys I could have bought

A friend of mine believes the heading aid industry is basically a ripoff, and the products they sell are too expensive.

My experience with two audiologists tends to make me agree, or  at least think that money is their chief drive. This didn't stop me from spending thousands on hearing aids this week, but it probably contributed to my feeling depressed about it.

The first one said to email her questions but never answered me. So I went to another my insurer likes.

No better. Particularly galling is that neither had money back guarantees. "No one works for free," she laughed as she told me about their $125 restocking fee. She added that the manufacturer also needed to pay for shipping.

I am thinking 2) if the manufacturer really has to pay that much for shipping, they need to investigate UPS. Mainly, though, I am thinking I don't want anyone working for free. I asked the audiologist, an expert, to find something that works for me, and if it doesn't, I want to  be able to return it. Otherwise, aren't I paying her for nothing, for her failure to find the proper aid for me?

Not that I am bitter.

I guess I'll just hope they work

Wednesday, June 8, 2016

Awesome

As I pointed out on Facebook, the only negative to this photo, and really to all of Awesome Con, was that Jenna Coleman was not swooning visibly at my cuteness.

But otherwise, what fun!

The Doctor seemed quite nice and animated, and the company was great. I finally got to take my niece, and her excitement made it better.

Fame was wonderful in the crowds and handled a sniff and significant intrusion of her space by an alleged service dog. It was very badly behaved and should not have been there.

The big question now: Do I spend the money to get the action figure of me that got scanned there. Who am I kidding? Of course i do.

My takeaway, other than awesomeness?  I am not ready to be a parent. I am glad my niece wore a fez (not that it was a unique look there), but I could look for the fez and find her.

Saturday, June 4, 2016

Huger

I write this as a bit of a confession. I compare disabilities.

This is bad.

Usually, in parking lots when someone who walks has a parking spot I could use. But today it happened when I was reading the newspaper.

Not the article about the disability rights activists blasting You Before Me. Good stuff there.

My problem was with the article on a blind woman suing Uber over several drivers refusing to transport her guide dog. This is a legitimate problem, one reason I dislike  Uber.

What bothered me was this quote from her lawyer: “We hope that this case will illustrate the huge obstacles that blind people face in the D.C. metro area just to get from place to place.”

If blind people face "huge obstacles," what does someone with a service dog who can't drive and can only use specially designed vehicles face?

Friday, June 3, 2016

Matty before Jenna

I have been seeing ads for the movie You Before Me, and while normally I'd have little interest in whether such a schmaltzy firm does well, I really hope this one is bigger than Titanic. And n to because Jenna Coleman is in it. All right, not just because Jenna Coleman, who I am meeting Sunday, is in it.

It is about an attractive young lady who is hired to be caretaker to a modestly older guy in a chair. They seem to fall in love and  everything turns out hunky-dory.  A wheelchair doesn't mean an end to life and things are cool.

I thought.


SPOILER

Turns out the guy jets off to kill himself at the end. Because that is what being in a chair means to the world. I am not amused.

My hope was it would be a hit and inspire lots of attractive young ladies to seek me out.

But now, I hope it fails. Sorry, Jenna.

Wednesday, June 1, 2016

Battery trouble

A friend asked if I ever ran out of power in my chair because, she added, that "seems like a very Matt thing to do."

You have to test the limits, I told her as I recounted the time I had to back up curb cuts because my rear-wheel drive chair was so low on power that it wouldn't go up face first. You have to know whether the CHARGE NOW alert is honest or if the battery is really deplete hours before the alert. You also need to know that if you turn your chair on and off, you might get more power.

I stick by my theory because twice recently my chair has had three or four green lines -- signaling power -- only to start blinking red CHARGE NOW.

Both times I was out on walks, so there wasn't much to do: just come home and hope I don't lose all power. I never  did. Also, I turned my chair off and  on, and got  more power.

I am starting the process of replacing the chair next week  --maybe the next one will be truthful.

Thursday, May 26, 2016

It stopped raining, crap

I have been fervently hoping the rainy May would end, and it finally did. I'm pretty miserable. In no order:

  • The coQ10 does seem to be giving me more energy -- the first three days of the week, I got  a total of about 12 hours of uninterrupted sleep, and I was not semi-comatose. Unfortunately, I think it was why my sleep was interrupted. I also think it was why my legs started jumping during the day. I stopped taking it and things improved.
  • With the nice weather came allergies.
  • One night we were looking through Mom's photo albums. Not that it isn't fun to mom certain siblings' clothes and hairstyles, but what hit me were the photos of me standing. How naive of me to think I would get worse?
Plus, this is the worst time of year for me. I love summer, and Memorial Day reminds me of what I will never be able to do anymore.

Thursday, May 19, 2016

The deuce, you say?

It finally happened. Despite all the signs saying the wheelchair stall was for people with disabilities, I came in yesterday afternoon to find someone not-at-all-disabled in there.

Why? The other stalls weren't filled. The perpetrator wasn't even that big. What kind of person does that?

"A [sounds like deuce]," a friend said. She then provided further evidence that she is really my "work sister" by demanding the deuce's name. I honestly don't know his name, so then she started grilling me on his looks. We didn't get too far there either.

I stayed in the bathroom till he came out, and it  wasn't anyone I'd seen using the stall before.

"Sorry about that," he said, but I suspect he meant was "Sorry I got caught."

I am sure he didn't notice that I didn't acknowledge his apology. I needed to go the bathroom.

Monday, May 16, 2016

Insured?

Good news, ear horns cost as little as $30. Insurance would cover that. Even an antique collector's item at $500 would come in under my insurer's threshold.

The problem is: The audiologist recommended hearing aids and accessories that would cost from $6,000 to $9,000. Insurance coves $1,000.

           

Saturday, May 14, 2016

My brassiere

I don't need an audiologist to tell me I can't hear. I did  go to one Thursday and will write about that shortly. But I know I hear poorly.

Nevertheless, I am 99  percent sure that a physical therapist I also saw Thursday said part of my chair is acting like an underwire bra.

After confirming what such a bra does from my sister -- whose response when  I asked her what they did was "REALLY?" -- I am pretty sure the PT did say this.

She was talking about these lateral supports on my chair and said they are pushing up under my arms and acting like an underwire bra.r

She had lots of good ideas so I am eager to work with her, although I hesitate to guess what undergarment is next.

Tuesday, May 10, 2016

Almost 45 but no adult

As I sat outside playing with Fame on Sunday while my sister and brother-in-law cleaned the porches, I had a thought. Later, as I mulled whether a photo with Summer Glau at next month's Awesome Con would be money well spent, the same thought struck me again. I should not even pretend to be an adult.

The only bills I pay are credit cards and medical bills. Yes, I give my sister money for the mortgage and utilities and stuff each month, but I don't pay them.

I go to work, but the only other responsibility is Fame. Well, that and don't die from FA, which is sort of major.

By the way, I am leaning toward a Summer photo.

Saturday, May 7, 2016

CHOPping away at FA

I had a good, if tiring, visit to CHOP on Thursday for my annual FA check.

I am going to revisit an old friend to try to improve met energy: co-enzyme Q10. The doctor had other advice if that doesn't work, too, though he had less than ringing endorsements. If they do work, he said, it's on energy.

He said a new medicine might help my bladder and recommended one. He also suggested I follow up with a speech therapist, though he warned against letting them do a barium swallow test. They just tell you that you are in fact having swallow issues.

I am definitely going to go to an audiologist this  year, I told him.

I was surprised by the treatment news. Several are due out in a year and a half, including a diet that sounds odd but has some science behind it. It involves eating a lot of fat, so you'd be like Homer Simpson, my niece said. Added my nephew, "Homer Simpson in a wheelchair."

The biggest surprise was the drug that is a few years away that not only stops the ataxia but reverses it. WHAT


Tuesday, May 3, 2016

The mean streets of Falls Church

My wheelchair broke Sunday night. One of front wheels broke apart and I was running on a rim.

It would be fair to blame my PoS  wheelchair. But Falls Church deserves an equal share of the blame.

My neighborhood is less than a mile in diameter. In the past 10 years, eight brand new houses have been built. It has seen at least five teardown-and-rebuild-bigger projects and two houses with significant additions. There have also been 18 one-to-two projects in which one normal house is torn down and two thin houses are built.

Despite all the heavy machinery needed and despite the many times the roads have been torn ip for utilities, the city  has never adequately repaired the roads. Instead, it just patches the holes.

To ride on the roads in a wheelchair  is a bumpy experience at best. Sunday, I hit a divot that I thought at the time just redirected my chair from where I wanted to go. I am certain now that it broke the wheel.

I am no  taxman, but I would think all that new construction would be worth a new road. Apparently not.

Sunday, May 1, 2016

George Washington prayed here and so did I

It was a tight fit into the  George Washington pew at Christ Church yesterday for the wedding of   a friend and regular Bitter reader. I made it with some help, but I may have scraped a little paint off the pew in so doing. Let's hope it wasn't historical paint.

It was a fun wedding. George Washington even stopped by and posed for pictures.

Fame was well-behaved and of course a big hit. During the dinner inside, this gal asked if she could take a picture of Fame. Sure, I said. She then got down on the floor in her little black dress, reclined on the floor next to Fame and took a selfie. She did warn me she was a little obsessed with dogs. And I think she was the groom's (my friend's) sister-in-law so no problem. Fame stayed in a down.

Plus, Fame is so cute how could you not be obsessed. I fed her on the grass near where we are in the picture. A friend picked up the bowl afterward. I told her she didn't have to because Fame would get it, so she put it back down for Fame to get. Fame proceeded to pick up three leaves, two pine cones, basically anything but the bowl. SIGH

I had asked beforehand who I'd know and was told another good friend. I asked her to be my helper if needed. She readily agreed and was a huge help. I think the groom went out of his way to make sure things were accessible, too.

My friend shares her name with my little sister, and she was as helpful as my sister, and she didn't make fun of me.  (NOTE: if I had an editor, she'd kill that last clause; it helps me out not at all. My sister will think  I am being a jerk; my friend may decide to make fun of me. Oh well.)

Great day.

Thursday, April 28, 2016

Mr. Matt goes to seventh grade

I went to my niece's class yesterday to talk about FA! It went OK, I guess.

It's exhausting and somewhat depressing to talk about FA. I am sitting there telling the kids that it's not like breaking your arm because you fell out of tree. With a genetic disease the only reason is  you are. That is the hardest thing for me, I told them, and it weighed on me yesterday.

But whatever, it was worth it, even if the teacher was nearer in age to my almost-13-year-old niece than me. She also asked if I wanted to be called Mr. Matt, which my niece wished I had agreed on. I said Matt was fine.

My niece seemed pleased, although no one apparently told her how lucky she is to have such an awesome uncle.


Monday, April 25, 2016

Smooth sailing

I came into work today and did a double take. They fixed the curb cut!

The curb cut  I use is  at the confluence of four levels of pavement: the curb cut and gutter, the road, the crosswalk and the crosswalk border.

This has meant that for a year or more, I look like the milkman riding into work.

I occasionally would try to get up on the gutter and stay on it. But I could never do it.

It's pretty annoying but low on the problems I need fixing.

Now, though: Smooth sailing.

Wednesday, April 20, 2016

Why indeed?

Why are you talking like that, the first-grader asked me.

I was playing with  Fame in the backyard and she was playing on our swings. Granted, I was talking kind of silly to keep Fame entertained, but I am fairly certain she meant the slurring and general fuzziness of my speech.

I decided to play dumb. I was in my own backyard; I can talk however I damn well please, girlie  

How am I talking, I replied. Giving lip to someone more than 35 years younger --  nice, huh?

But she didn't  hear and didn't ask again. Alternately, the slightly older neighbor might have hushed her up.

It is a good question, though, one I plan to ask certain higher beings when I die.

P.S.: You might think I dislike this precocious pre-pre-teen. Normally, you'd be right, but not here.  I am not getting nicer. It's just that the day before this girl was marching through the yard with a light saber, singing/humming "The Imperial March."

Sunday, April 17, 2016

I don't care


I went back to work last Monday. I was sick or on telework then for February, March and six days in   April. Except for maybe 10 of those days, I wore sweatpants, sleeping pants or shorts.

I know Jerry and my older brother would disagree, but I am not telling the world that I give up.

I am telling it that I have more important things to worry about.

Thursday, April 14, 2016

'I have returned'

On Monday, I finally stopped my goldbricking and after two months started back in the office full time.

Before I did, I told my bosses about the embarrassing incident when someone was in the bathroom stall when I needed even though they weren't in a chair. I never thought I'd use "urine-soaked" in a work email but I did.

One of my bosses responded that they have put up signs. I said OK but was skeptical that would help ... until I got in to  work,


Tuesday, April 12, 2016

Friedreich's ataxia!

Today, for the first time ever, a family member used Friedreich's ataxia with an exclamation point, and not an exclamation point as in "goddamn Friedreich's ataxia!"

My niece emailed her mother to say they were doing projects on genetic conditions in science class and the teacher "said I can do Friedreich's ataxia!"

The teacher then looked it up and emailed my sister, too, saying she was a little worried my niece might be upset by the shortened life expectancy.

She was but rallied past it.

I am glad. She is crazy smart for a 12-year-old, and I am hoping she can explain a few things to me.

Saturday, April 9, 2016

Bill and Ted were right

I have good reasons for not writing for a while: Fame, a lingering concussion, broken computers (yes, with an “s”), but I think I am back and have a few stories to tell. 

After my “Poop in the street” post, Mom told me she disagreed with me and said I sounded whiny in the post. My sister said I always sound whiny in my blog.

I was not being whiny. Is it whine to want everyone to, in the words of Ted “Theodore” Logan and Bill S. Preston Esq. (actually President Lincoln),  “be excellent to each other”? I think not.

i mean I'd help someone like me even if I was in my chair.

A few days later when I was out for a walk on the bike trail. I took Fame off  to the edge to let her hurry, and before I could bend over to pick her poop up, a woman came up and said, I’ll get that.


I felt so good.

Tuesday, March 29, 2016

Poop in the street

Even in the early stages of our team-up, Claren was always a big fan of toileting. If she had any waste in her body and she was given a chance to "hurry," she did.

Fame seems to dig privacy, familiarity and a full bladder or colon. If she doesn't really have to go, it is tough to entice her. And if she is in view/hearing/smelling of something more interesting -- meaning anything -- forget it.

I could get her to pee during training, but to get her to poop I had to walk her around to the front of the building away from the other dogs, the other people, everything. This became our thing (or Mom's) and fed into her appreciation of familiarity to do anything. She will now, after a month and a half, pee on  walks, but she still won't poop. Usually.

Once or twice, though, she had to go. She still doesn't do it in the grass where I take her. She poops in the street.

Which is what happened tonight. What happened after really has me torn. Mom, of course, wasnt with me to pick up the poop, so  I got a bag and started picking it up, when a couple walked past without a word. No offer to help, nothing.

On the one hand, fine. I can pick up poop, although it is easier if it is in a pile rather than four separate spots on the street. On the other, who walks past someone in a wheelchair picking up poop in the middle of  the street?

Sunday, March 27, 2016

Empty promises

At Easter mass, we affirm our baptismal vows, so this morning I rejected Satan and his empty promises and believed in God the father, son and Holy Spirit. Nothing too controversial there ... at least not until I thought about it. Then  I opened up a whole can of worms.

How is "Ask and it shall be given" not an empty promise?

I mean I have been asking for ages, and not for toys but for something significant: a cure. And not just for me. My cure would benefit Mom, my sister's family, and yes, me.

But I struggle out of bed these days not just slightly dizzy from my concussion but also with all the bad things FA brings.

Friday, March 25, 2016

Tough enough?

My head is improving, but it is not all better yet: I can tell you how frustrating it is.  I mean it has  been six and a half weeks.

Mostly what I think of is football players. No one misses six weeks with a concussion. Am I not as tough as an NFLer?

Wednesday, March 23, 2016

Oh no, Robert Parker

As my concussion lingers, I am listening to books on tape, and it is having a bad effect: I am losing a little respect for Spenser author Robert Parker. Just a little, I mean he still created one of the most awesome characters around.

But his dialogue, while great, follows one pattern. In a conversation, sentences alternate between two endings -- "I said" and "[Susan/Hawk/Someone] said."

Even Joe Mantegna's dulcet narration can't fix it; it is jarring and laughable.

I recognized it when reading, but it's easy to gloss over the saids.

No glossing from Joe. And as a result, Robert Parker falls a notch or two. Luckily, I still have Ace Atkins, who took over the series after Parker's death.

Sunday, March 20, 2016

Damaged goods

I am a wise, and wise-cracking, pterodactyl, in a dinosaur-themed Easter story my niece wrote, but I'm not feeling so awesome.

I went to my actual doctor this past week because my head issues remain. She said I could work but recommended telework for a month.

Telework is more relaxing, to be sure, I can wear sweats and shorts, and get up later. But no one is here  to keep me from thinking bad thoughts. Plus, the longer I am gone the easier it is for guys to use the wheelchair stall with impunity. Not that my presence stops them.

So I am alive, just damaged. I'd rather be cracking wise.

Thursday, March 10, 2016

Defeat

I had an appointment today, but I canceled.

It was at a place I'd never been, and I was so unnerved by yesterday.

Canceling reliefed me, sure, but rarely have I felt so defeated. I didn't go somewhere I wanted solely because of my body's limitations. Pathetic.

And I am inclined to telework more because I can't count on a usable bathroom, but not being there makes it more likely that thoughtless people will use the wheelchair stall more frequently. I'll b out of sight; it won't take much to push me out of mind.

Defeated.

Wednesday, March 9, 2016

Trouble intervenes

I wanted to write tonight and was trying to figure out about what. I had sort of decided on Fame, how I am a little surprised how much I love her already. I expected a transition/mourning period when I realized she wasn't Claren and processed that. But that hasn't happened. I just love her tons.

INSTEAD:

I sat in urine-soaked pants for most of the afternoon, not for any physical failing of my own.

I mean there were physical failings, but I had anticipated those and gone to the restroom early enough to   deal with them.

No, the failing was the guy who decided to use the wheelchair stall even though he is not in a wheelchair.

The added problem is I see no solution other than humiliating myself by going into my boss's office, saying I peed in my pants because the stall was being used and what's the solution.

Saturday, March 5, 2016

How rotten is rotten

On Tuesday, my first day back in the office since January, Mom picked me up and asked how my day was.

Not great, I told her. Fame was cool, and everyone was glad to meet her and see me. But the day started with me throwing up a little in my mouth.

Sort of.

I was bending over, and some stomach juice came up. I am not close to a bathroom so I found a bag to spit into, then went to the bathroom to rinse my mouth out. Not real easy from a chair.

I never felt 100%, and I had an issue that meant I needed to change. Plus, while Fame was cool, she did drop my lunchbag multiple times on the way out.

Mom listen to it all and then said, that's not so bad.

The sad thing is she's right. By my pathetic standards, it was a normal day. How I long fora the day when a semi-rotten day really sucks.

Thursday, February 25, 2016

My Girl Friday

I have not seen the Cary Grant movie but I think I sort of have the 21st century equivalent in my 12 year old niece.

She has been insistent on helping me write blogs while I am concussed. She's actually typing this one now.

I just have to not swear although she probably wouldn't mind but her mother would. She even is willing to blog instead of going to bed although that might be because of an interest in not going to bed. If there are any weird little notes in this blog, it's probably not mine.

Editor's note: It is not an interest of staying up late. Ish.

In other news, Fame is doing well although my bed is taking on a blackish color. She still sleeps in the kennel at night but on my bed for naps and such. (My typist is making fun of the "and such.") (We would have blogged more frequently but Monday is Supergirl Monday, Tuesday is hockey practice, and Survivor was on Wednesday.)
Editor's note: It's so mysterious. "and such." Hmmmmm...... :s

Saturday, February 20, 2016

Professor X never had a week like this

Mom and I got home Saturday, and Fame and Kenny got acquainted. Fame was fine -- she has been with other dogs her whole; K-man was unsure. He seemed to want to play but was scared of Fame. Our backyard is divided by the ramp, and the two dogs spent most of the first week on opposite sides. Fame had a long leash, so by necessity stayed on one side. Kenny, with his electric collar, chose the other side, except for his speedy forays onto Fame's side.

So that is how I spent Sunday and Monday, the holiday.

On Tuesday, I went to the doctor to have my stitches removed and to see if I had a concussion from my fall. Oddly, the PA said my dizziness, which began right after the fall,  was unrelated to the fall and came from my low blood pressure. My sister, who took me because school was closed, and I were skeptical, but he stuck to his guns. I think part of it was I described my issue as lightheadedness, which apparently is different from dizziness. So we left and were to check in Friday.

The rest of the day was OK, but as I was getting into my recliner to watch the Flash, I slipped. I was fine, but didn't want Mom and Dad to struggle to get me up. So I watched from the floor, a bit of an issue as my dizziness comes from moving my head, but I survived.

My sister came home and enlisted her 12-year-old daughter to slide a stool under my butt when she lifted me up. And from the stool to my chair. That, of course, makes it sound easy, like I didn't almost fall off the stool, choke my niece, etc. After it was over, my niece said she doubted this happened to Prof. X. He does have Colossus, I pointed out. But again, I survived.

Wednesday was OK, though I began to use my backup cushion, which is OK but (foreshadowing) really slick.

Thursday went fine until I rolled off our sidewalk into the mud. Our sidewalk and yard have sunk a bit, so the metal plate dividing them sticks up and prevents me from getting back.   My sister had to find a board for me to roll on so I'd have traction, then  Mom anD my sister had to Clean off my muddy wheels.

Friday was bad.

I was transferring back to my chair from the toilet and slid right off because of the slick cushion. I managed to stand but slid off again. I got Fame to bark a few times but no one was around. I called Mom, but she was at church. Then I called my brother-in-law, who was at the bus stop with my nephew. He came home and  helped me up.

I didn't fall because of my head, but Mom and I decided I should go back to the PA because what little balance I had is so important.

This time he said I had a concussion right off the bat. So he said I could not work for a week and I needed to limit my computing, TV watching, and reading.

That brings us to today. It was a nice day and all I could do was play with my dog.

Thursday, February 11, 2016

Wednesday, February 10, 2016

Fame costs

I can't say I wasn't warned.

My new dog is a black dog named Fame.

Miss Grant tells Leroy and the gang on Fame "You've got big dreams, you want fame. Well fame costs, and right here is where you start paying; in sweat."

I have sweat these past 10 days. 

The problem is I could have sworn she warned them you had to pay in blood. So last night I fell in the bathroom hard about 10 p.m.

A classmate's dad helped me up and drove me to the ER. "Quite a laceration," the doc says. Seven stitches later we headed home. I also think I am mildly concussed, so I skipped most of today. Tomorrow is the written final and the test of our handling in public. Then graduation Friday and home Saturday.

Weird coincidence: Fame was turned into to CCI the same day Claren died.

Tuesday, February 9, 2016

Matt and Mom go to the dogs -- Part IX

We went to the mall today. We did well.

I'll say this for New York: It shrugs off snow. The snow kept up till 8 last night, but when we went out this morning, the first road had snow on it. The others were just wet.

They also cleared a path to the play yard. It is so amazing to watch her run and play. She's kind of a jerk, though, teasing the other dogs and running away. Funny.


Monday, February 8, 2016

Matt and Mom go to the dogs -- Part VIII

Today was cool despite another snowstorm that canceled today's field trip.

These are the dogs we will take home, barring something unforeseen.

I learned that graduation is going to be like a wrestling entrance. (Or a reliever's walkup, but I thought of wrestling first.) No, I don't get to stand at the top of an entrance ramp preening and posing, but I do get a entrance song. And I get to pick it!

It is supposed to be a tune that relates to the new dog and I, which rules out 75% of Springsteen's catalog. I mean, Lost in the Flood doesn't fit. Independence Day is too sad. I finally settled on My Love Will Not Let You Down or Better Days.

I also had my first 1-on-1 conference, and the trainer said they are pleased with our progress. In particular, she mentioned my inclination to motivate not correct, pointing out that the dog might not always understand me yet. I  know you're shocked -- I speak so clearly. HA


Sunday, February 7, 2016

Matt and Mom go to the dogs -- Part VII

I debated whether telling folks here where I worked, given the current unpleasantness in Oregon. In the end, though, I did,  and it was fine. Later  in the week Mom realized the name tag on our door shows a wildlife refuge. HA

I woke up at 6:30 today, my first time sleeping through the night. I didn't fall asleep till midnight because of my jumpy legs. But after we fed the dog, I went back to sleep till 9! Awesome.

After breakfast we walked around the campus and spent nearly an hour in the big dog play-yard here first with another dog in the class and a little puppy, then by ourselves. We came in only when the dog started eating snow, which I decided meant she needed a drink.

In the yard, she was awesome. She liked running through a tunnel to escape the other dogs. It worked for a while, but the last time, the other dogs caught on to where it let her out. She would juke into the tunnel, and the others would take off to the end of the tunnel.

It was also fun to see how she tempered her play depending on who she was with. When the other dog in training was there, they went at it full tilt. Nothing bad, just dogs playing like dogs. But when it was just the puppy, she was a lot easier-going -- not to say she didn't really give that pup the business.

Then we came in, had lunch and took a nap. Now, she is asleep in her kennel.

Saturday, February 6, 2016

Matt and Mom go to the dogs -- Part VI

A pretty good day and I am off tomorrow. Plus, I am more then half-way done -- only four days of work left. Graduation does not count. That is awesome. I mean, if this was a full-time gig, I could do it. But I need to get back to my life.

Anyway ... today ... I won a prize, a Kong toy.

One of the things I do well with dogs is motivate them. I probably do not correct enough or hard enough, but I can encourage them.

The prize came during UP practice, the command to tell the dog to put its two front feet on the table or counter in front of it. It is mostly used in transactions.

Well, New Dog didn't do the up right when commanded, but she looked like she was interested in doing it. So I poured on the motivation; she did it and they told me how great it was and gave me the toy.

Lowe's was OK. She is still having some issues getting things, but it'll come.

She also took a nap on my bed with me. It's a narrow bed, too.

Friday, February 5, 2016

Matt and Mom go to the dogs -- Part V

I am blogging with a dog at my side! Today was the first night we get to take the dogs home. It's awesome. It even makes up for all the snow we got.

Class was delayed a bit and only two instructors made it in. They also canceled our first field trip.

But, it being the north, the street seemed pretty clear by the late afternoon, and it was really sunny, too, so things look OK for a trip to Lowe's tomorrow afternoon. Then we get a day off!

The new dog seems awesome, definitely a licker -- not in Kenny's league but ...

We worked on the Get command a fair bit, which is one I'll use a lot.

I realized I need to start looking over my nightly quizzes before I turn them in. The command to bark is speak, which I know. But the instructor who worked with my dog a lot said that after I give the command, I should woof at her. On my quiz, I wrote the command to bark is woof.

Thursday, February 4, 2016

Matt and Mom go to the dogs -- Parts III and IV

Apologies. I started writing last night but had to stop and go to bed unexpectedly.

Wheelchair is back! Repairman who looked and sounded like my N.Y. in-law's dad fixed it this afternoon. it needed a new controller.

Before my chair died Tuesday, we ranked the three dogs we thought would be a good match. Then the trainers got together, decided who they thought would work best for the whole class. Then they lookout our list, I think, to see what is in our minds.

The trainers' choices are called pre-matches. As long as things go as expected, we will go home with these dogs.

Twelve years ago, Claren was my top choice because she was a good size and because I suspected she was the one because they kept matching us up to work on commands.

This time, with 20 dogs or so, we didn't work with dogs more than once.

That's not true; I worked with my #2 twice. He was good, but #1 seemed better.

On Wednesday, we learned who are pre-matches are. I got my #1 again!

But the loaner wheelchair caused problems. I was going slow because it was so wide, and the trainer correctly said, I know you are worried about the chair, but the dog is walking on eggshells because of your mental state. Try and smile.

I did and today was better.

Although I did hear a dog whining late last night and I imagined it was mine saying, Oh crap! I got the dud.

For some reason I have yet to sleep through the night, and no naps. How I am cognizant I don't know.

Snow tomorrow.

Tuesday, February 2, 2016

Matt and Mom go to the dogs -- Part II

I ran over a dog's foot today -- no big deal really even though it yelped. I ran over Claren hundreds of times. You just make sure to laugh and be happy, so the dog is happy with you and doesn't grow afraid of chairs.

But I make no promises not to run over many feet tomorrow. I am in a power chair 6 inches wider than my own because the wheelchair I had tuned up before I left died. We're calling a repairman tomorrow, and Mom is doing less, so she'll wait for him. Currently, the dad of one of the other students is fooling with it, but no one is real hopeful.

Otherwise, it is awesome.


Monday, February 1, 2016

Matt and Mom go to the dogs -- Part I

I got the OK to blog about team training as long as I don't name names -- human or canine.

The trip to Canine Companions for Independence's Northeast Center in LongIsland was long. Traffic around NYC was crazy bad for Sunday afternoon, and it gave me time to recount why I want nothing to do with NYC. Traffic is high on the list.

The dogs were restless Sunday night, folks, or at least loud. Our room looks out on the kennel, and they were yelping till 11--ish. I liked it.

Today, we did orientations and worked a fair bit with the one dog I will name: Carpet Dog, just a rolled-up piece of rug to give the trainers an idea of our strength, timing, etc. Even Mom worked with CD.

After lunch, we met some real dogs and did a few commands with dogs in their first semester of advanced training.

It is a big class -- 13 -- with lots of successors, service candidates, skilled companions, even a facility dog person.

Good group. My new best friend is a 7-year-old who asks a lot of questions.


Thursday, January 28, 2016

Dogged

I told Mom that I have been having digging respiration the last few days. Her kind and helpful reply: I'd be surprised if you didn't.

How mean!

I am just a little worried about the next two weeks of going to the dogs.

I know it'll be fine, even fun, and will go fast. But, as Mom pointed out, i haven't been anywhere for two weeks since I got Claren.

So yes I am worried.

Tuesday, January 26, 2016

You and me both, J'onn

I think I have to stop making fun of my sister for crying during one of the Spider-Man movies because my allergies may have acted up last night during Supergirl.

Supporting character J'onn J'onzz, the Martian Manhunter, is ready to give up. He is so tired, he says.

So am I.  

Granted, in the TV show, his wife and daughters were killed by evil Martians, and he is 317. I just fell -- multiple times, I don't know why or how to stop it, and I bruised my elbow.

But Supergirl gives him a pep talk including the line, "Dying is a lot easier than getting back up when the world's ended."

Once again, my world hasn't ended. If anything, it is about to get better with the addition of a dog.

I'm still tired, though. And it is probably a good thing my niece wasn't watching with me.

Saturday, January 23, 2016

My mind on snow

I really miss Claren.

I know that in a little over a week, I will meet my successor dog. Three weeks from now, I will be on my way home with him or her. And I even got a photo of the dogs in the class.
Top row: Zuko, Levin III, Gilbert IV, Hadden, Cecily II, Odetta, Saralee, Ojai IV, Chevel; Bottom row: Haji III, Fliegel, Pisciotta, Dax II, Lovisa, Odie V. Aaron IV, Addie IV, Fame III

And while the idea of a dog named after an Irene Cara tune is exciting (seriously, but so is one named after Jonny Quest's buddy*, an airbender or any of them), Claren made snow tolerable, even enjoyable.

She loved snow, and for her I was willing to put up with it even if snow is my least favorite environmental happening. It is cold; it traps me where I am.

As it is now, I have my awful mind to deal with during this blizzard. Trust me, that's bad.

* Yes, Jonny's pal had a "d", but pronunciation is the same.

Thursday, January 21, 2016

Hate-hate affair

I thought I wrote this before, but could not exactly find it, so I will present this as new.

I hate my wheelchair, no surprise there. But as much as I hate it, and I do, I really hate not having it.

On Monday, it started making a god-awful squeaking noise, so after work Tuesday, we took it in for a tuneup. Of course, it had stopped squeaking by then.

But I was without it till today and forced to use my manual chair.

Wow, even if I didn't have to get up in the middle of the night, the first time in months, it would have been a long two days.

I hate my chair, but it is the devil I know.

Tuesday, January 19, 2016

Say what?

I can hear -- not well but enough to know when I am missing something.

I am missing a whole lot on Netflix's showing of Scrubs. It's captioned, but the captions cover just the joke, not the rest of the conversation.

It reminds me of those martial arts films and monster movies where you see the Asian guy talking but in the English translation the guy just says "yes."

This is far from the only show/app captions are kind of pointless.

TNT did the same when you watched on demand or online.

It's kind of crummy.

Thursday, January 14, 2016

Unplanned outage

Some people go like gangbusters on their resolution as the year starts, only to fade as time goes on.

Then there is me.

I don't like that I am blogging so infrequently. I have things to write about, which will improve my mood, but things keep thwarting my well-laid plans to blog more often.

And things are only going to get worse in 16 days when I head to New York to get a new dog.

Claren didn't mind my blogging; I suspect a young dog might. That might mean I'll have to stop watching awesome TV shows, like Spartacus: Blood and Sand.

What am I going to do?

Wednesday, January 6, 2016

What a surprise

I got new glasses recently that get darker when I am outside.

I didn't want them necessarily, but the optometrist said my pupils don't contract as well as other people's.

Shocker. Another part of my body fails.

The optometrist also dashed any hope to one day cast off my glasses. Because of my nystagmus -- another thing I am lucky enough to have, a condition of involuntary eye movements -- laser eye surgery would be bad, he said. Plus, he added, you'd need reading glasses right away, kind of ruining the point of surgery.

As it is, I'll still need bifocals in a few years.

I guess I'll just hope these frames are better able to handle the abuse I dish out.

Monday, January 4, 2016

Turning over a new leaf reveals same old crap

I fell in the bathroom at work today.

Neither of my two emergency responders answered. Neither did a female friend I was going to ask to round me up some help.

I was about to call some other folks when I heard someone and asked a complete stranger for help.

He got me up, then said he was going to stick around to make sure I was OK.

Good thing, because I could not stand up to pull my pants up. My feet slipped, my legs locked, my arms weren't able to sit me up properly whatever.

Finally, he asked if I needed anything. I said sure. He helped me pull up my pants, buttoned my pants, then pulled me into proper sitting position.

At this point, one of my first responders came in. He missed a call and wanted to see if it was me.

Yes, this guy is awesome, and yes, needing a stranger to button my pants makes me wants to barf.

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