THE ODDS (Debbie Does ALS)


Good Thursday morning

I had a great visit with Dr. Mike this morning. He was impressed with my shoulder's range of motion, and commented on the improvement in my left hip. Yay!

Mike has been my physical therapist long enough that I know something about his family. His grandmother, of whom he is very fond, had gone through a rough spot about six or eight months ago. Mike bought her a "life alert" system, which has been very helpful. He mentioned that in a recent conversation with her, though, she sounded lonely. He thinks the "life alert" system may be working too well. The system permits his parents -- who have the lion's share of responsibility for grandma -- to travel a bit more than they've been able to the last five or 10 years. Prior to having the system, Mike's parents stayed closer to home. The new system has been a bright spot for them as they have been able to escape a little, start living their lives again...

I remember all too vividly how it was when my mother-in-law lived with us.

Naturally, this made me think about my long-term future. As I think about my deterioration I realize that I have (in one respect, anyway) the easy part of this; those who care for me will have to do all the heavy lifting. While it will be done with love, a burden is a burden. I have much to think about on this score. I don't want anyone putting their lives on hold.


This evening I was able to get out and do 6.6 miles at Pratt Park. I walked all but the last bit; the slow run at the very end was all things wonderful. During the long walk I hit upon something. When people die, those who are left behind are the ones who feel the pain, who grieve for the loss. I think the hardest part for an ALS patient is that they are the ones left behind as each little bit of them dies. I know that every time I am faced with one more thing my hands, arms, and legs cannot do I grieve anew. It is very often difficult to stay bright and sunny under these circumstances, but somehow I manage! I remind myself over and over and over again that a gloomy Deb is a boring Deb. With the time I have left, I intend to adapt as I can and scare the hell out of Louise with my maniacal grin. Are you laughing, Wendy?


It's Thursday morning. I never got to post the above last night because I watched (translated: slept through) Harry Potter number five with Cecilia. We might give the movie another go tonight. Cecilia loves the parts that are filmed in London; she enjoys seeing on film places where she has been. I'm with her.


Just for the record, I am jonesing for an overseas trip. I have miles to use and (in Paris) a place to stay. I think it would be delightful to experience France in the fall, n'est pas?


Wendy Leah said...

I think you need to spew, I say SPEW! on Louise.... that'll get her!

Five Percent said...


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