Friday, December 2, 2016

Dionogsis and Decisions and the Frailities of This Body

I had an appointment in Thomas Jefferson Hospital at the Neurology Clinic. This is at 909 Market Street. Although I am long experienced in driving in Philadelphia, I felt apprehensive about dealing with the traffic and the parking, as well as what my state of mind might be after my appointment. Iron Faith came through again and supplied me with a driver, Larry Harris. He is a professional, a tour bus driver, thus I was in good hands, and appreciative since he had to spend his morning hanging about Philly for three hours.

My appointment was at 10, but we left good and early, since one never knows the trafic delays that may be lurking on I-95 or elsewhere. There were backups on I-95, but he took us a diffent route and avoided them. He dropped me off in front of the building at 9:00. He then drove off "to find a place to hide" until I called him to pick me up a little past noon
Well, it was still an hour until my appointment and I decided to take a walk. You know, I try to take a walk every morning. It was on one of those walks in late May that eventually led me here. I was breezing along when suddenly, as if someone threw a light switch, my legs felt off and weak and I walked in a funny, slow way.

I  shuffled off yesterday, and a shuffle is the way I walk these days, slow and steady...actually I am not so steady. I was very cautious crossing at the corners, I didn't want to trip and fall over the handicap ramps as my frined Ronald had done a couple weeks back. I didn't need to enter the hospital with a bloody face.

I decided to go look at the entrance of a place I worked at in the early 'seventies, Lincoln Bank. Of course, Lincoln Bank no longer exists, it disappeared decades ago I turned off Walnut, went down a block of 10th Street and turned left onto Samson.  Samson is a narrow street. One change since I lived and worked in Philly was how it was lined with bicycles. 

My old site of employment, back in 1971, was half between 12th and 13th streets. The entry  is still there as well as the parking garage we were located beneath, but I have no idea what is operating there these day.

It went down to 13th street and headed back to Walnut. Gee in this one shop I could have gotten a barguin of a mink coat, $900 reduced from $2,000. It was really an unattractive jacket.

It is the one with the sign pinned on front.

I headed back on Walnut. Everybody going my way was zipping by me.
I remember when I use to be the one passing everybody when I walked these streets. It crossed my mind I was so slow would I be late arriving for my appointment, perhaps this walk had been a mistake. By the way, the man sitting on the sidewalk in the distance was a homeless guy begging for money. I hope this isn't my future fate.

I wasn't late. I was still twenty muntes early, but I entered the building anyway. I had to sign in at the security desk and get a visitor tag before going up to the Neurology Clinic on the second floor. Once there I had to sign in again, electronically.

I took a seat in the large waiting room wondering how long I would
wait. What a difference was this experience from what I had been used to in Delaware. I was only seated a couple minutes when I heard someone call "Larry". I was so startled I had to ask a lady at that semi-circle of desks if I heard correctly. Yes, I had, except I had no idea where to go. I wandered around the semi-circle and suddenly a lady asked, "Larry Meredith."

I sat on a chair before her and she took the usual info, my ID and insurance cards, asked a few informational questions. Amazingly no one handed my a questionnaire to fill out. She then told me to take a seat in the waiting room and someone would come get me. 
Okay, I thought, so now we wait, but I had barely sat down when a fellow in blue scrubs called me back. He took my vital signs, asked some family history, then led me to another little exam room and said the Doctor would be in shortly.

Yeah, right, I've heard on enough doctor visis and the shortly was like a half hour. But surprise again, as he walked out of the room the Doctor walked in. I should say, the doctors walked in, two Physicians and a Nurse Practitioner. The lead doctor was Goran Rakocevic (pictured left).

These people were exceedingly kind and encouraging. They conducted a physical exam, consisting of a lot hitting me with a hammer. Dr. Rakocevic didn't see the need for further tests, since he had  MRI result, reports from my other doctors and the recent EMG. The diagnosis was pretty clear. 

I have sporadic amyorophic lateral sclerosis or ALS, more commonly known as Lou Gehrig Disease. (Sporadic simply means I didn't inherit it because I have no family history of the disorder. I got it more or less randomly.) It is a rare disease and not contagious, so you can relax on that note. They do not know what causes it and there is no cure. It is a progressive and eventually fatal affliction. 

What is it? 

Well, amyotrophic means no muscle nourishment.  It doesn't mean the muscles are not getting food, but they are not getting messages from the brain. This results in weakened muscles, then they shrink and later become paralyzed. Lateral is the way the the motor neurons travel along the sides of the spinal cord. When these neurons die they leave behind scar tissue. Scelrosis means scarring or hardening. ALS is a disorder of the motor nerves or motor neutrons. These neurons tell your muscles what to do and without them your muscle become weak. The progression causes problems with daily activities, such as moving about, lifting and carrying, caring for one's self, speaking, chewing, swallowing and eventually breathing. It might also cause muscle craps, twitching under the skin, weight loss, stiffness or poor coordination. Sounds like fun, don't it?

They told me I have loss muscle mass in my hands, arms and legs. When it is gone it is gone. No exercise will build this loss muscle back. I am already having problems handling things with my hands. I drop a lot. I read in a case history of a relatively young woman suffering from it that found she couldn't remove her gas cap. She had to ask a man to undo it for her. I have noticed opening and closing my gas cap has become more difficult.

I will have a team to look after me as I go to the clinic during the month. This will include doctors, nurses, social workers and
therapists (speech, physical and occupational therapists.) Social workers will aid with issurance, social issues and emotional state.

Average life expectancy can run from 1 year to 10 years on average depending on the speed of the progression. Hopefully mine is a lazy sort and slow. Remember, Steven Hawking got ALS when he was 21 and he is now 74, so he's had it for 53 years. I figure I got a chance to make 100 yet.

Anyway, I'm not dwelling on that. I am just going to keep on living as I have, doing the things I like and enjoy my remaining years. It's all in the hands of God anyway. I may need some earthy help, though.


  1. Larry,
    I am at a loss for words. I am shocked. I truly did not believe you had ALS although we had talked about the possibility. Your last paragraph in which you accept your situation is inspiring. We have to talk.

  2. Larry,
    Reading over your post one sentence especially caught my attention. The sentence was in referral to ALS "It is a progressive and eventually fatal affliction." You know what? That is a good description for life isn't it? I know myself I am thankful to have lived seventy-five years of a relatively healthy life. We all must eventually prepare for the final exit. I am thankful that you have so many around you, especially your church, who are giving you support now at this challenging time of your life.