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.

Man With a Stick

Why this title? My Doctor wanted me to use my walking stick. This photo was on an early morning walk December 14 and I did take my stick with me. I have to admit I am having trouble getting use to is. I walk awkwardly, but I can still walk, so I still don't feel I need the aid. I also hated to carry anything when on a hike. It does seem to make my pace a bit faster, but it hasn't extended my range. For a person use to covering 5 miles or more on these daily jaunts it comes as a shock to tire out at 2 miles or even less. There were times in the past when I would feel some fatigue after several miles, but I could always push on through it and go a bit further, and never had a fear I wouldn't have the energy to make it back to my car. But when I reach 2 miles now I know that is it. If I am not close to where my car is parked I would be in trouble.

This limitation to walking, as well as other forms of exercise, isn't the only thing I struggle to get use to. Another is the Handicap Placard. A little over a week ago I was sent the application all fixed with the doctor's statement of need. Last week I went to the DMV and got the placard to hang on my mirror that allows me to park in the Handicap Spaces. I have used it twice now and I have a guilty feeling when I do. It is true I have some difficulty pulling myself out of the car and getting my balance, but I can hobble along once up. My walking isn't real pretty, though. I am bent and slow and shuffle some. There are times when I get off course for some reason and stagger off to the side. Sometimes I even unvoluntarily step backward a couple of paces, an odd sensation. The Social Worker tells me I should not feel this guilt and she is right. I do have a definite weakness in my legs, and my arms as well, which makes carrying things difficult. My handicap is legitament. I think of how many people I have seen with Placards that pull into handicap spaces, bound out of their vehicle and practically skip into the store or restaurant.

Last night I attended my first support group meeting. I almost missed it. My wife and I drove over to the church where it was to meet and arrived about fifteen minutes early. The meeting was to start at 7:00 PM. It was dark outside this time of year as expected. What wasn't expected was the church being dark inside. We pulled into the drive through the parking lots and not a single light was glowing inside this church. The place looked deserted and locked up. There were two cars parked on a side lot. I decided to pull down beside them, but had some difficulty finding how you got into that section. When I did and we pulled down by them, they were both empty.

It was very eerie. My wife felt uncomfortable there. We waited about to 7, then I left and drove down to another church just down and across the street. There were some people inside, but it was definitely not the meeting place. The other church had the proper name and this had a different name. We left and headed home and the church was still dark as we passed.

We had not received any messages that the meeting had been cancelled for some reason, so when we got home I went directly to the phone and called the person in charge of the meeting. She answer and said they were at the church. I said I would come back, and did, but my wife choose not to return with me.

There were not many there, four counting myself, but this made it nice in a way for this newcomer. We could talk intimately. There was the facilitator from the ALS Association, a student nurse attending University of Delaware and a lady with a Scotish accent. She had been attending these meeting for a few years with her husband, but he had recently died from ALS so she came for the support such circumstance call for.

I found her husband shared my voice, which is that it grows weaker as the day passes. I wake up and my volume and strength is almost normal, but by the end of the day it is close to a harsh whisper. Her husband lived 10 years after his diagnosis and they mentioned another usual member of the group who was in his 20th year. I told them this was what I need, that 20 year stretch. You see, a few months ago I swore I was going to out live my dad. He died at age 94. I am 75, so I need at least 20 years to beat his record by a year. I had thought then, well, if I am going to make 95 I might as well pick up five more years and make 100. Steven Hawkings has lived with ALS for 53 years, so maybe I can make that 100 yet.

Its funny, when my friends and I were teenagers we sometimes speculated on how we would die. It seemed something so far away in the future it didn't scare us to speak of the how. I had said I wanted to be very old and just walking along one day when every organ in my body just gave up and I fell dead instantly. Others wanted to someday lie down, go to sleep and never wake up, peaceful and painful deaths. We didn't want to have anything where our brain was not functioning.

I pretty much know how I am going to die. This is a incurable, untreatable, fatal disease I have. It is a wasting disease. My muscles will weaken and atrophy. I may lose my voice altogether. I could reach a point where I can't swallow and breathing could become difficult. In fact, that is usually the method the Grim Reaper utilizes to take you out with this disease, respirtory failure.

The irony is that your inner organs aren't affected by it. They keep functioning. The problem with breathing is the muscles that force air in and out weaken and can't do their duty anymore. The brain isn't affected either, so my mind should be fine. That though may not be such a blessing. I will be aware of all that is happening to me.

When my mother died at age 92, back in 2012, as a result of a stroke, her mind was crystal clear. Her body had failed her and she couldn't use her left side and she couldn't swallow and had a feeding tube, but her mind was clear up until the final hours. The hospice nurse had to flee to the hallway where she broke down crying. She said this was rough because most of those patients she had treated mind's were lost to sinility and dementia and they weren't aware, but my mother was conginant of everything. The nurse couldn't deal with that.

I think I can, I think I can.