Throwing a Light Switch

When the sun came up, I came out, going into one or another of our state or county parks to walk. It wasn't a stroll. I averaged 5 miles on each of these hikes and I did them every day year round.  I think I only missed 6 days in all of 2015.

2015 was when I added workouts to my schedule. Late in December of the previous year I had my regular physical at the Primary Physician. Everything checked out well, as it usually did, except some concern about my cholesterol. The Nurse Practitioner asked if I wanted medication to lower it, but I felt it could be lowered by more natural means. She said eat more fruit and vegetables and cut down on sugar. My weight was around 180 pounds, same as I had weighted upon graduating from high school way back in 1959.

She also noticed my spine curvature as I sat on the edge of the exam table and wrote up an order to get Physical Therapy. I did go and for three times a week for about three months I went to the therapy center. I was given several exercises to do and each week they increased the reps and added some new ones, including light weights.

I felt so good after my time there ended that I decided to continue those exercises. After a while I add more, finally making three trips a week to the senior center gym to use their machines. I felt good. My diet had changed, especially on that reducing sugar and I decided I wanted to take off several pounds, which happened and by the end of 2015 my weight was 165 pounds. I was growing noticably stronger, too. I set a goal to outlive my father, who died in 2012 at the age of 94. Then I thought, that would be at least 95, so why not go for five more years and make 100. I really believed it was doable.

This routine continued into early 2016, but then my wife was hospitalized for a knee transplant and with taking over all the household chores, including cooking, I slacked off most of my exercising, except for the morning 5-mile walks. I wanted to take the time to describe my life as being very healthy and energetic.

In late May of this year I had another physical and it was one of the best. Everything was good, even my chlorestal was down. Oh, I had noticed a few quirks, like lifting things seemed more a strain. I was getting tired more often, which I dismissed as coming from the extra work of caring for my wife. Clumsiness had grown, I dropped things more, but this also was explained away as due to the arthritis in my hands.

Then perhaps a week after my physical, as I was a third of the way in my usual morning walk, something strange happened. I was walking down a paved path and all of a sudden my legs felt odd and weak. It was as if someone turned off a light switch and all the power went out of me. I considered trying to complete my ramble, then thought better of it and headed for my car.

I felt like Tim Conway doing his old man walk, kind of a shuffle. I discovered (on the Internet, of course) that my new way of walking had a name, Ataxic Gait. I hoped it would go away with some rest, but it didn't.

Since I had two other doctor appointment scheduled within the next week or so, an urologist and a rheumatologist, I waited until I saw them, thinking maybe they will see something. They didn't, so it was back to my primary physician.

He didn't know what it was either. Thus I began a period of tests and visiting specialist. I had 3 MRIs, a couple CatScans, several ultrasounds and a whole slew of blood tests. I was seen and examined by a Nephratologist, a Cardiologist and a Neurosurgeon and a Neurologist. There were two emergency hospital stays totaling nine days on an unrelated matter (C-Diff). This turned up nothing. No one could figure out what was going on. My heart, lungs, kidneys and what-all were working fine.
This was over a six month period, from the beginning of June through the end of November.

Finally, the Neurologists ordered a EMG (Electromyogram). Fun times, lying there while a person first shocks you up and down an arm and leg and then sticks a needle in the muscles of those limbs. The examiner told me I had some sort of nerve problem, but they couldn't diagnose it. After a couple more weeks, I was sent to Thomas Jefferson Hospital's Neurology Clinic.

They were able to give me a diagnoses.

I have Amyotropic lateral sclerosis (ALS) more commonally known as Lew Gehrig Disease.

This was not the best news I ever received. I had a rare, incurable, untreatable, ultimately fatal disorder.

This was how I came to find out what was wrong. There are a number of incovenient things now with my body. I will get into those more next time. You see, I decided to do a Blog about my journey with ALS, at least as long as I can key out the words. It may be that my struggle will be helpful to others, hopefully in an encouraging way.