Hello . . .
Hello, and as they say on talk radio, ‘first time caller here’.
My diagnosis story is not that different from a lot of others I’ve seen posted. After a year of weakening legs, arms and hands, shortness of breath, lots of inconclusive tests, and a week at the Mayo Clinic in Scottsdale AZ, I found out last week I have respiratory/limb onset ALS.
Right now, I’m not in terrible shape. I sometimes swerve while walking; would fail a heal toe balance test, stone sober (I imagine it would be kinda funny if I got pulled over for drunk driving and had to explain that to a cop); grumble that Sisyphus had it easy when climbing hills or worse stairs; hesitate before sitting in a chair worried I won’t be able to get up without assistance, and will never play Rachmaninov’s Second Piano Concerto at Carnegie Hall. Full discloser, I can’t play the piano but have always thought I’d like to.
I’ve found getting a terminal diagnosis is quite a mule kick to the head, and I have to admit, it takes a lot to stay focused on the small things. I need to finish several projects I’ve committed to and promised to complete in the next few months – before I officially retire from my rewired retirement.
As the saying goes, and immortalized in the musical Godspell, I’m taking this thing day by day. I do have a pretty strong faith in the big man/woman upstairs, which I’m certain will be comforting as the days, weeks, months and hopefully years come at us.
I’ve started phasing in the 3 R’s regime today beginning with Riluzole, sent off a genetic test kit and am awaiting delivery of my mega B-12 injection kit. I’ve even got a daily pill box for the first time – #accessorizing.
I’m on the far side of 60. My life has been an amazing journey filled with wonderful people, love and joy. However, I’m greedy, I want more of it, and will keep doing everything I can to keep going.
Thanks for taking the time to read this. Cheers.
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