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?