THE ODDS (Debbie Does ALS)



Remember this? Yes, that's me as I appear on PLM. My functional rating scale (FRS) is currently 41. In August it was 39 (it can fluctuate depending on the day, but it usually hovers near 40; the highest FRS is 48). The colors were the same..... after I edited. The first time I did the August assessment my legs were yellow, too.

Seeing the change in color made me panic. I went back to the questionnaire and changed one of the responses so that the yellow legs would go back to green. I rationalized this by saying I had been overly negative; making myself seem worse than I actually am.

Under "walking" I had originally marked the second ("early ambulation difficulties"), and under "climbing stairs" I had marked "slow." That was all it took to make me yellow. I went back and changed walking to "normal" because, I reasoned, I can still run. Sort of.

I am probably being too generous with my hands/arms as well, but I am terrified my avatar's arms will turn orange. I don't think of myself as orange armed, therefore I will not permit this sort of representation.

I'm sure some of this is due to my competitive nature -- I refuse to let Louise get ahead of me at this point in the race. There is also the denial factor which, despite my acceptance, still lurks within.

I keep focusing on October. Forgive me for mentioning this yet again, but as I approach this very significant month I can't help but marvel and be grateful that I am where I am three years since symptom onset, two years post diagnosis.

So. I cheat. My legs may not deserve yellow, but they are probably a lighter shade of green.

This leads me to my next topic, which was my most recent visit to my physical therapist. When I saw Mike on Wednesday morning he noticed my gait looked sort of hobbling. Lynne has noticed it, as has the woman who runs the deli next to my office. Lynne and I have identified that I lock my right leg when I take a step forward with the left. Mike explained this was an instinctive move on my part to stabilize my right quad. You may remember that I complained of my right quad after the New York City Marathon. Anyway, Mike showed me some great stretching techniques as well as a good way to work the quad. I've said it before and I say it again now: I love Mike and am so happy he is my doctor.

Must run. Time to stretch.

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