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I went to Dr. Santos and got my blood pressure meds. She gave me Toprol. So now of course I am reading up on a health topic I never had to concern myself with. But I guess that happens when you age. Health concerns that never were an issue become important. It’s no longer just vanity driving my efforts to lose weight and eat healthy. Now it’s a matter of health. So I have had a banana each day, and last night I ate an orange for my nighttime snack. The thing that really annoys me is that I am limited in ways to burn calories.
I got my AFOs [ankle-foot orthotics] aka braces. But now I need special shoes, which are $150 a pop, not covered by insurance. Ouch!! I am hoping these will help me to take a few steps into the bathroom to the toilet and maybe even into the shower [although the turn is torture!]. I would be so happy to be able to take a shower again, and wash my hair. I am also going to try to get a prescription for some physical therapy to learn to walk with the AFOs.
I registered for the DC Advocacy again. But this time I will go on Monday and home on Tuesday after the meetings on the Hill. I have to see if I’m strong enough in May. Ride for Life is the following week [I can only do the NYC leg], and the first Walk to D’Feet in Manhattan the day after the Ride ends. I may or may not form a team for that one, since my Long Island team is sort of a tradition, but I will definitely go there to join in the festivities. That is, if I have enough energy after DC and the Ride. I don’t know if I am as strong as I was last year. I do know that I want to take a more leisurely train time down to DC, and make an earlier train back. The late arrival last year into Penn Station was a nightmare!!
Tomorrow I have my second appointment for my reassessment with Access-a-Ride. A contact at Disabled in Action, an advocacy group for the disabled in NYC, who is also president of the Disabled Riders Coalition, read my story and called some big kahunas at the MTA and Access-a-Ride, and they called me personally to guarantee that I would be seen within 90 minutes tomorrow. And they also extended my privileges again. To paraphrase the H & R Block TV ad campaign, it’s good to have “people”
Paid a shiva call to Phyllis Silver, whose husband Stan passed away a couple of weeks ago. This one hit me hard. Stan and Phyllis and I did the Ride for Life together two years in a row [but Stan did the entire ride both years, the Walk to D’Feet t2 years, and last year we were all down in DC. Phyllis was his devoted caregiver for two years since his diagnosis, and his sole caregiver for all but the last six months when they had to hire some help. I even met them at the Metropolitan Museum of Art last summer for a really nice day.. Phyllis will still come to support groups, and she will still go on the Ride and to DC. The ALS community became another family to her. But Stan will be missing. I can still remember their first support group meeting. Mine was the first face they saw. I also remember how seeing me freaked Stan out. This is always a potential issue with support groups: that the recently-diagnosed [who may not have met any other PALS yet] risks coming face-to-face with the future. In Stan’s case, he wasn’t as spooked out at my wheelchair as much as my inability to speak. He asked me how soon after diagnosis I lost my speech, as if the pattern were the same for all patients and he could plan his future by my timetable. I assured him that even though I lost my speech early, no two patients were alike in their progression. But ever the computer programmer and analytic soul, Stan wanted a formula he could use to predict what was next.
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