In the office space

I went in to the office today, what will be my only  day in the office in August.

It was the first day I had been in since July 20, when the whole chair debacle began. Actually, it had been around for months. July 22 was when it reared its ugliest head, and my chair didn't charge.

I enjoyed seeing my friends even if it was the first time since then that I wore long pants and collared shirt.

Wardrobe malfunction

Janet Jackson is a world-famous celebrity, an actress on Fame, a singer, a dancer, a multimillionaire.

She has many attributes anyone would kill for. What do I share with her, after my swimming "performance" Sunday?

I had said to Mom before we left that it might be time to hang up my suit and get a new one.

Then as I swam the backstroke, I started feeling more  rushing water on my butt than I should. Shortly thereafter, I reached the pool wall were my suit was dropping, and parts of me that should not Super Bowl).

Fortunately, the volunteer was a guy I am friends with, and he helped me recover my dignity.

A tattoo for Mom

My sister and I were trying to persuade Mom to get a tattoo for her upcoming birthday thee other evening. We were unsuccessful, but after what happened at the Children's Hospital of Philadelphia, I am not willing to write it off as impossible.

We were talking to the doctor when Mom asked her only question, "What about cannabis?"

My sister has been trying to get me on medical marijuana for years, jokingly, I think. But to hear it from Mom was something else.

Long story short, it is not super-helpful.

If nothing else, it confirm a mother's love because I don't think Mom cares  for marijuana at all.

Deadpool at the neurology appointment

My niece says her favorite moment of my neurology appointment was when the doctor asked me what color her shirt was. I then sad without looking that she was a wearing a Deadpool shirt.

This was a safe guess even if I hadn't known for sure. She has several T-shirts featuring Mr. Pool.

But wait, you are no doubt asking, why was your niece there?

She  is doing a yearlong project on Friedreich's ataxia and wanted to chat with my doctor.

Chat they did. I missed a lot of it because I went to do the FA scales, which measure the disease's progress, and my doctor sat with her and Mom and answered all of her questions.

I am sorry I missed it. Mom said how neat it was to hear them talking back and forth about FA.

I don't know who is cooler: my doctor for taking all that time to talk to a15-year-old or my niece for doing the project. Not really, my niece, but they both rock.

Do you feel lucky, Matty?

I have always turned down opportunities to participate in phase I drug trials. This may be overstating it a bit, but phase I trials seem less interested in making you well than in making you ill.

You hang out in a hospital while researchers (I assume doctors and nurses) give you ever-increasing doses of the new drug, monitoring results, until you get really sick.

The American Cancer Society says, "The main reason for doing phase I studies is to find the highest dose of the new treatment that can be given safely without serious side effects." So basically what I said.

I have never been desperate enough. Note the past tense.

I am of an age and a disease progression that makes a treatment more necessary sooner. If I have to spend a few days barfing or bleeding out my eyes (probably not), it might be worth it.

I learned of several possible upcoming phase I's at my visit to the Children's Hospital of Philadelphia (more on the visit in coming posts). One sounded quite cool: gene therapy. It's not happening tomorrow and there are bigger risks, but recent research reports "rapid and complete reversal of sensory ataxia by gene therapy" in a mouse with Friedreich's ataxia.

Of course, a mouse isn't a person, as my doctor said, so we'll have to wait and see if it makes it to trial.

The main risk if it gets to phase I and I take part is that they guess wrong on the best dose in phase I.

One can only get gene therapy once, so if they come up with the winning dose in five years,  I can't get it.

But in five years, my body will be worse by five years.

So I have to ask myself: Do I feel lucky?

A handful

I am a lot of work. Just ask my sister.

I am not sure, though, whether the helper or helpee suffers more.

My chair allegedly returns tomorrow. I say "allegedly" not because I doubt the repair place ... No, I do doubt it, but I think it is telling the truth.

But for the past month the broken chair has meant I have not been able to transfer. Every time I wanted to take a nap or use the toilet, I had to ask someone to put me in the proper place. This was in addition to all the other stuff I need help with.

I can't tell you how hard/embarrassing to have to ask to go to the bathroom.

Under Pressure, disability style

As much as I like Queen (and Vanilla Ice), I am not entirely certain they get pressure.

I am back in my manual chair. I realized yesterday that the POS loaner was putting an awful lot of pressure on my butt. With medical pads, I think I avoided open sores, but just.

I was told the repair on my chair has been expedited, but no one can say what that means. Insurance remains an issue.

I can't see to read real well as I am wearing my old glasses, having given up on my new glasses, which I liked but did not stay on my face.

And I haven't been to work in three weeks.

My name is Matty Montoya ...

I am feeling a special affinity with Inigo Montoya these days. NOT because I am a revenge-driven master swordsman. I am, of course, but that's not why.

There is a scene in The Princess Bride where confronts the object of his revenge. Said object runs away and locks the door after him.

Thwarted in his attempts to break down the door, Inigo starts calling for his very large friend Fezzik. Here is how it reads in the screenplay:

Fezzik!!!!!! I need you!!!!! He's getting away from me, Fezzik!!! Please!!!
Arr!!! Fezzik!!! Aaargh!!
Arr! Arrgh!< Fezzik breaks door down > Thank you.

Every time I have to call someone for help, I think of Inigo. 

Be gone

The night in the hospital after my heart operation, I asked the nurse whether I'd be take the amiodarone that  night.

It wasn't on the chart, so she said no, adding that it would be OK be cause it has a half-life of forever.

I finished my course  of the drug, so part of me is worried that my heart will miss it and I'll wind up back in the ER.

Most of me just wants it the hell out of my system because I am so sick of the side effects.