Still Walking

Still Walking

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Tuesday, December 20, 2016

My Toes Appose

I was certainly a young man of the 'sixties and I did a lot of things in those counter culture years that were shocking to an older generation, but I never did drugs. Alcoholic drinks, for sure, but not the drugs that had become common in my environs. It wasn't a case of moral strength; it was pride. I thought I was pretty smart and drugs might addle my beautiful mind.

I have boasted of it many times over the decades, "No, I never did drugs!"

Besides it was illegal.

That was then and this is now and I have learned I can obtain marijuana legally, at least here in Delaware,  as a member of the fortuately  very exclusive ALS Club. I haven't applied for weed yet, but who can say if a day will come when it might be pratical to do so. Perhaps I will become a herbalista yet. Here is a list of weed benerfits for someone with Amyotrohic Lateral Sclerosis.



Might be some terms there you never heard of down on the street corner, such as Dysautonomia, which includes postural orthostatic tachycardia syndrome or POTS as it is known. Hey, how convenient that it is countered by weeds.

Anyway, on to other things, like why is this Blog called "The Nerve of Them Nerves"? It is because, something like us back in the 'sixties revolting against authority, the Motor Neutron nerves sort of rebel against the authority of the brain and don't it tell them what to do with the muscles. 

Mine are not too far along rebeling, I guess.  My arms and legs have turned weaker and I have lost muscle mass in my hands. I ave become Mr.Oops, constantly dropping things. 

I also have a lot of trouble getting into objects that should be routine to open. If all that stood between me and starvation was a Snickers bar I might be doomed because I can't tear the wrapper. It is difficult for me to twist a twist off car such as what is on bottled water, Gatorade or milk. When we go to a restaurant and I have soup, oft as not I am asking my wife to rip open the cellophne on the crackers. You don't want to see my struggles with a pickle jar.

My handwritting is quickly dissolving into a series of scribbles. I can't use a knife effectively in cutting, not just meat, but slicing an apple or peeling a potato. 

Even manuvering my toothbrush properly takes concentration. There is also the funhouse horrors of bathing. I love to soak in a hot tub and read, but now I fear if I get down in that comforting water that I will never get out over that daunting side and lip of the tub. It isn't much more confidence building to shower, though. I am not so balanced upon my feet that the prospect of falling isn't my constant companion.

Once out of a shower, dried off in all my natural glory, I face the challenge of dressing. I lasso my toes with the leg opening of my underpants like a cowboy trying to rope a running calf. The first leg may be caught, but the other then resists capture even more ferociously. Getting my trousers on is no mean trick either. The worse is trying to sock my feet. It is as if my toes and hands are apposing ends of two magnets that reject coming together. 

And I will tell you, clipping my toenails has become one of th most difficult tasks in the universe. In fact, even doing my finger nails is not so easy. I done seem to have the strength to press down the lever that will snip away the excess nail. 

Oh yes indeed, the nerve of them nerves!

Wednesday, December 14, 2016

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.


Saturday, December 10, 2016

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.