Too far gone

When I first met with my neurologist at the Children's Hospital of Philadelphia several years ago, he mentioned several studies in the early stages and asked if I was interested.

I wasn't.

Early phases are gross-sounding. They test how much of a drug until someone gets sick or side effects. Neither are appealing to me, so I essentially told him that:

• I would let people who are more desperate for a treatment do the early phases and 
• I didn't have severe Friedreich's ataxia, so I'd wait till the kinks are worked out of the treatment.

Since then my body has kept getting worse -- my heart, my ears, my legs, everything. 

Even though I don't like them, I was now desperate enough for a cure that when I saw a Phase II trial I was eligible for, I emailed the coordinator to see about taking part.

She emailed back that my results on the peg test were not good enough.

The peg test is a particularly malevolent device developed to drive FA patients crazy. It doesn't look evil, but looks are deceiving. One side has a four-by-four grid of holes. The other side has a shallow dish with 16 pegs to go in the holes. Using one hand, you must put each peg in a hole and remove it one  at a time. Oh god, I hate it.

The study mandated a score of 150 seconds or better. I just assumed I'd meet this requirement.

I took 207 seconds.

Now that I am willing to donate my body to science (or at least to a drug company), I am too disabled take part.