My experience with ALS 2005 - 2007

Let me introduce myself. My name is Chris and my dear wife’s name is Mary. We have 6 children. Four of our children are married, and we are blessed with four wonderful daughters- in-law and with 9 healthy and wonderful grandchildren. We live in Ontario, Canada.

Unknown to me I had ALS at least a year before I had an inkling that something was wrong. I was more tired after work in the evenings, and rather stayed at home than attend meetings or do much in the way of visiting others. Since I was an elder in my church, I did feel guilty about this, since I was supposed to keep contact with the members in my ward by visiting them.

We have a pool and my wife Mary and I always swam lengths together, and were usually able to do about 20, before we stopped. She is a strong swimmer and generally I had no problem staying even or being faster if I wanted to. Slowly, this changed. I found that I could do no more than 10, while she went on to complete her 20. Later, I found sometimes I was stopping in the middle of the pool to touch the bottom or hold the side and catch my breath before continuing. Then gradually I began noticing increased weakness in my hands and arms and legs. I was no longer eager to go for a good hike in the woods. I thought nothing of it, since at age 63 these things are possible.

My work involved a lot of travel and meetings. I was managing a company with a number of employees selling product to merchants. I needed to travel with them from time to time, and help them with difficult accounts, hire people, have training sessions at remote locations, all in all, a very high energy job. More and more I was exhausted at the end of the day. Then came the time that I could no longer lift up my briefcase and move it from the back seat, where I kept it, to the front. Now this was not a heavy briefcase but more like a compact leather zippered ring binder. My brief case containing my laptop now needed a big swing to get it up to the back seat when loading my car. I could no longer lift it straight up. Also my shortness of breath increased. This was something more than just getting older. So off to the doctor I went.

He ordered X-rays of my back and many other tests, and found that there was a problem (a pinched nerve) at the disks in my neck. If it got worse I was to come back.

Next, when I found that my fingers would no longer produce enough pressure to use my nail clipper to clip my nails, and breathing got substantially worse, the alarm bells started to go off. This was not normal. I went back to my doctor and he booked an appointment with a specialist in London already for the next week, the 17th of December, 2005 to check out nerve function. The specialist did a physical and a comprehensive exam of nerve function. This test is done by inserting many needles into your arms and legs and sending slight currents to receptors placed at places where these nerves end. Normally your muscles will react strongly when activated this way. In my case, at many places no signal at all was received. He indicated to me that my problem was beyond his competency, and that he would immediately make an appointment for me at the neurological clinic at the University Hospital in London. He explained that this clinic has excellent specialists in all areas of neurology. He was able to obtain an appointment for the first day in the new year (January 2nd 2006).

There, all the tests I had were repeated and more extensive tests were done. Catscans, X-rays, and again the needle tests, now all over my body. The result was that it was certain that I had a neurological disease. But the doctor could not determine which disease. For that he needed to follow the process of elimination, since there is no real diagnosis for many neurological diseases. He also booked me for a MRI (Magnetic Resonance Imaging) for November of 2006. The MRI was to eliminate the possibility of a (non-neurological) physical disease. After that a diagnosis could perhaps be made and then, if possible, treatment could begin.

Well, I was not pleased with that. To have to wait almost a year for a MRI and not know what you have, and not be able to start treatment until after November 2006 (it was January 2006) was something I would not submit to. To date I had been very impressed with the services our medical system provided. I had never really needed medical services before (just had the flu and other minor illnesses). I certainly was not going to sit and wait and deteriorate for 11 months just because the government was not investing in MRI operator’s salaries. (There appeared to be plenty machines but a limited budget for operators so that the machines sat idle.)

I found that in the USA I could have a MRI done within one week. I would have to travel to Detroit or Buffalo. I also found that there were private clinics in Ontario doing MRI’s with no waiting time. Naively I thought the problem was solved. I had underestimated the possessiveness of our health system. They will not accept MRI’s from “third” parties. They want it done locally. Seeing these things I think it is high time that we have additional, privately paid health care in Ontario as we do in many other provinces, including Quebec (MRI’s are also readily available in Montreal). Then those who want to, can purchase the MRI, or cancer treatments, heart operations and / or other procedures or treatments, which the Ontario Government is unable to provide in a timely manner.

Once I knew I was restricted to the local MRI machine, I worked on ways to speed up my access. Was there a waiting list? No. Could I speak to the scheduling staff for MRI? No. I had to work the phone, and personally visit staff at the hospital to finally have my appointment moved from November 2006 to a 3 am. time slot in February 2006. Many people were praying for this change, and it was an answer to prayer that it did occur.
After the MRI another appointment was set with the specialist at the neurological department, and he did provide a diagnosis of ALS. Mary and I were not surprised. We had done our research of all diseases that produced the symptoms I had, and could only conclude that it must be ALS.

Having certainty was both a relief and troubling. It is good to know what you have, relieving uncertainty, but when you know the course and prognosis of ALS it is not a good disease to have.

Knowing that all things are given by our Heavenly father, and that he cares for me, and all His own, in both health and sickness, gives me comfort, hope and peace. We know that all lives come to an end. Some have cancer, some have a heart attack or stroke, some have Alzheimer’s, and some die of old age. Some die violently through accidents or catastrophic occurrences, often at a young age. The Bible teaches us that most of us have no more than seventy or eighty years to live. Then, irrevocably, life ends.

The Lord is using the time He has left me, to prepare me to be with Him eternally. I may serve Him here and now, and rejoice daily in His many wonderful gifts. My family surrounds me with love. My church family does the same. Truly, the Lord is good and gracious.

How sad to read of the hopelessness of many people who have ALS. Every Christian has the certainty that life does not end at death, but that death is the portal to life eternal. Death comes when God ordains. For everyone. For you too. When we have Jesus Christ as our saviour from sin, we have a glorious future!

Is our society not too introspective, self centered and egoistic? When all we are concerned with, is our personal “quality of life”, are we fulfilling the purpose for which God has created us? I believe that our society is obsessed with self. And so we are impoverished. We no longer care for the unborn. (abortion) We no longer care for the aged. (euthanasia) Many infirm and elderly are “left to rot” in old age homes and nursing homes. The great complaint in these institutions is that “no one cares for me”-“no one visits me”-“my children just send me a card on my birthday”-“my children are too busy to visit”-“my children only visit on mothers day” and on it goes. Society is not about society anymore, but about the individual. Individual rights trump the rights of society. Tiny minorities start to impose their “private rights” through the liberal courts on the whole of society. The family, building block of civilization for 6000 years, is replaced. It is held to be no longer true that every child needs a mommy and a daddy. Saying this can get you into trouble. The sick, the disabled the mentally challenged, the downs syndrome children, have all become liabilities. Isn’t it quality of life that counts? When they don’t have that, should they live? In hindsight, was Hitler not a progressive ruler, ahead of his time? The imbeciles, the weak, the sick, and the healthy if you had the wrong nationality or political conviction, were all exterminated. There was compassion for no one but self.

Are we seeing innate sinfulness of man? The same sinfulness you can already discover in a little baby that is angry when it does not get its way? Every one is sinful and every one needs a Saviour from sin. God is love, and we can only have true love to others, when we love God. It is His love that kindles our love, and gives us happiness and peace. And in times of sickness and trial, we feel closer to Him, we need Him more, and the more we need Him, the more He blesses us with His presence in our lives.

And so an ALS journey can be a blessed journey instead of a hopeless one. If you are reading this because you also have ALS, He can be your possession too, and turn your path ahead from dismal, to one with a glorious future! When we see who God is, the Almighty creator of heaven and earth and everything on it, who am I, and who are you to ignore Him? We need to love God above all else. We need to love God above ourselves. Only then do we become truly altruistic. Then self is no longer number 1. God teaches us to love our neighbour as ourselves.

That concept fits in today’s ME FIRST society as a square peg in a round hole.

Look carefully at today’s society. Are all these “me first” people becoming happier as they increase their possessions and look after “me first”? Is anyone else loving them unconditionally or, are the relationships also governed by a “me first” attitude? Does “me first” ever bring true satisfaction?

Lasting happiness only occurs when God is first in your life, and, incidentally, this lasting happiness will last eternally.

PROGRESSION
General fatigue and muscle soreness increased, and also a loss of strength in my back caused the top part of my body to “fall over”. Sitting at a table I would need to lay my arms on the table top, to brace the top part of my body. When walking I always held my arm on my leg on one side to brace my back and stop me from falling. This forced me to stop working, because it became impossible to travel, have the meetings, and lead my sales staff in an energetic manner. I had to close down my company.

To keep me upright with less effort, I started using a walker, which was a great relief.

We sometimes are a hindrance to ourselves because part of any debilitating illness is our determination to be no different than any one else. Call it pride if you will. We don’t want to use crutches, walkers, sticks, wheelchairs because it sets you apart. Yet these items are great conveniences for those who need them. I was struggling to walk through the house, trying to hold myself up, while I did have a walker in the house. Once I started using it I could walk “fluently” again.

The other great help for patients with ALS is a bipap machine. Since ALS disables muscles, also, sooner or later the muscles in your lungs will be affected. In my case my lungs were one of the first organs to start giving trouble. The weakness in my middle also severely affected my breathing. Some time after diagnosis I was having increasingly severe breathing difficulties. I could no longer lie down to sleep, but had to sleep sitting up. After seeing my specialist he placed a bipap machine for me on order, but did indicate there would be a substantial waiting time before I could get one.

The trouble caused by ALS to your lungs is twofold:

1) Weakened muscles cause a too shallow movement of the lungs causing lack of breath,
2) Because of the lack of breath, the carbon dioxide in your lungs is not exhausted, and will slowly poison a person if nothing is done.

This is what was happening to me. When things became quite severe, (I was turning bleu) I was admitted to the University Hospital by the neurological specialist, and placed on a bipap machine. I was thrilled to have the machine give me the breath I had lacked for so many days. (Note: the bipap machine does NOT blow oxygen into your lungs. Oxygen by itself would have a life threatening effect. If a person who has ALS would be given oxygen instead of air, the buildup of carbon dioxide would quickly increase, and since no extra ventilation was provided, it could not be exhausted and cause death.)

What does a bipap machine do? The bipap machine pushes air into your lungs, and keeps them inflated. It gives a high pressure push to get the air in, and lowers pressure for exhaust. Basically, it maintains a constant pressure interrupted by a blast of air. Most people can get used to the discomfort of having a full face mask and a hurricane in their face.

Being in the hospital, it was evident that my problem could be cleared up (for a time) by putting me on a bipap machine, but it was also evident that it would reoccur after one or two days at home without a bibap machine, causing at least regular weekly hospitalization of one or two days to clean my lungs. (Much like dialysis patients) It was a blessing when they told me that they had located a surplus machine (an older one) somewhere in the hospital system, and I could borrow it and take it home. This allowed me to be discharged the following day.

Although I was very thankful for my little "hurricane" machine, it was somewhat of an antique, and unresponsive to what I was doing. If I had to sneeze, the blast from the “hurricane” could make this impossible until I had loosened the straps and taken the mask off.

After some time the new bipap machine from the Ontario Ventilator Pool arrived and it had much better software driven technology. It reacts to every breath, and stops momentarily for hiccups and sneezes and regulates itself to the tempo of breathing you need at any given moment. It is totally responsive. Another blessing!