Friday, August 6, 2010

Ampyra ... peace

Ampyra - the new drug to help strength and walking speed for people with MS. Seems hit or miss as to whether it works. Hit?

20 years in the making. Why so long? Risk of seizures. Many trials trying different dosages. Finally found the right dose, extended release, 2 pills, take 1 and then 12 hours later the other.

I started last Saturday.
Saturday - am I really dizzy or just nervous? I think just nervous.

Sunday morning - legs are shaky. Sunday afternoon - my head hurts - ouch!

Monday - hmmm... is something happening? I go home and actually have energy, and stand, talking to my mom, for 15 minutes.

Tuesday - my legs are stronger! I'm walking further at work and taking fewer breaks. I'm not hungry. I get a headache.

Wednesday - working from home, doing "speed" loops around the house. Headache.

Thursday - "Never say I'll try. Say I will." I am able to use my legs rather than just my arms when getting out of the car. At work, I will! I set a PR for distance and number of walks. Lori and I go to a movie and my legs protest, jumping and jumping, so I move them around because the jumping hurts. Not hungry. Slight headache. My friend, Jean Ann, is brought back to life by technology. Emotional day. I get a great gift and Jean Ann is afraid, can't breathe, and fights for life. It's a roller coaster. Cheer or cry?

Friday - today - I'm a bit tired from pushing it yesterday and from insomnia that is another side effect, and while I'm having fun, I'm emotional about Jean Ann. But I still walk a ton at work.

So each day this week has been a gift. Looking at me, one wouldn't think so - this isn't a graceful walk. This is the MS walk, maybe a different variety. But this is peace for me. And Ampyra is a hit - I got a week of great walking.

My prayers are with Jean Ann and her family, that they may all find peace in the chaos and unfairness of ALS.

May God be with us as we search and find peace, in whatever sense that is.

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