That Grand New Gang of Mine

What awaited me at the hospital once they proclaim I have Amyotrophic Lateral Sclerosis was quite different from what my previous experiences had been. I was not admitted or committed to some uncomfortable bed  and no one was coming about sticking needles in me here and there or forcing pills down my throat. Quite the contrary, for my decisions about my fate have been placed pretty much in my own hands. It is not that I have been cast out by the medical profession to fend for myself, no not at all. I find myself part of a cast of thousands who seem genuinely concerned about my well-being and prepared to aid me in having as good a quality of life as can be managed under the circumstances.  There really isn't any treatment, not in the usual sense for this thing, but they provide a clinic presumedly to help me transition through the progressing of the disease. It is a combination efforts of hospital staff and members of the ALS Association.

Friday was my first such clinic.

I was finally diagnosis as having ALS on December 1. I could have attended my first extensive clinic in December, but because of the holidays and all the fuss and feathers of the season, I put it off until January 6. I awaited this with much anticipation, then, for just over a full month. It was going to require me to drive into Philadelphia, which was one part I wasn't looking forward to at all. My appointment was at 8:45 AM and this meant my travel time would fall during rush hour, o joy, o joy.

And of course, we had to get our first snow fall of the year over night.  Fortunately the roads were fairly good.

It does not have to be difficult from here in this section of Delaware to Philadelphia. Straight up I-95 North should have you there in about a half-hour, unless there is an accident or road construction upon the highway. This time there was neither and even traffic wasn't as brutal as is common that time of day. Still, I left at 7:30 to allow for any hiccoughs and thus arrived on the 900 block of Walnut Street with plenty of time to spare. I parked at a garage at 925 Walnut.

Philadelphia parking can be expensive when compared with Wilmington parking. These garages seem to be manned with attendants who do not speak English with great skill. The person who gave me the ticket totally confused me, but I gave him my key and trusted the car would be there for us when we returned. The clinic was at 909 Walnut, juts a short walk from the garage and we signed in a half-hour early.

I expected we would be sitting in the main waiting room for that half-hour, but like before, someone took us back almost immediately, the first of a parade of people. This one weighed me and then escorted Lois and I into an exam room. I weighted 171 pounds with my clothes and shoes upon me, so let's guess I am probably 168 pounds give or take some ounces.

We had been initially greeted by Kate, ALS Program Manager of the Jefferson Weinberg Center. I'd be hard pressed to tell all those who followed over the next three hours plus. I know that Goran Rakocevic, my main ALS doctor and Judy Guarnieri, the Led Nurse Practitioner visited with us several times during the day, but there were a ton of people, dietitians, nurse coordinator from the ALS Association, Social Workers, Speech Therapists, Occupational Therapists, Physical Therapists, I-am-not even-sure-what-all therapists. They stretched me, pulled me, poked me, struck me with a hammer, watched me walked and asked a million questions.

I will get an assessment of all this sometime next week.  Meanwhile, I was given some physical exercises to stretch my muscles. I was also given the gadgets in the photo, consisting of nose clips and a tube I am to breath through for several minutes a day to strengthen my breathing. I was also given the tube in my hand to make handle utensils such as forks and spoons easier for me. It was discussed me getting a mask to wear when I sleep to also help breathing and a leg brace for my right shin and foot to help me not drag my toes to close to the round. There was also discussion of grab bars and ramps and other alterations I might need in my not-very-handicap friendly house.

I will go back for another such clinic on February 7 and so the adventure has begun. I feel I am in the hands of caring folk.

The hospital will validate parking; however, I had picked a garage not one of theirs. They gave me a $15 voucher towrad parking. The fee for four hours was $30, so I had to pay $15 out of pocket. Next time I will drive about the block and park at the neurology Garage at 9th and Locust.