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Merv. Vindevoghel

My Story-Living With ALS:

Merv Vindevoghel: Regina, Saskatchewan, Dec.2001

 

     On May 23rd, 2000 at approx. 1:30 in the afternoon I was told that I had been diagnosed as having Amyotrophic Lateral Sclerosis, also know as Lou Gehrig's disease. I had been having trouble since mid 1997 in that I seemed to be losing strength and muscle tone in the left arm and hand. Being in the mechanical trade in the automotive area most of my life as a working class individual I began to have trouble in areas that needed a little strength. I was fortunate as I owned and operated my own garage with an understanding partner and was able to spend more time at doing the bookwork etc. I really didn't pay much attention until this started to cause many problems, and being a true southpaw I had no choice but to notice. I was also starting to realize that prolonged usage of my legs caused them to complain about what they must have thought was overuse.

    I finally decided that I had better mention these abnormal body reactions to my Doctor and get his views on it. I was referred to a Neurologist and this lead to numerous tests. This all started with an EMG and the repetition of this test three more times. Then came the blood tests and a varied number of other tests.

    My wife, being the supportive lady that she is, hearing about a drug called Rilutek that they were testing at the Foothills Hospital in Calgary, Alberta, decided to check this out. After many phone calls and the passing of three months we headed for the Foothills Hospital in Calgary to see Dr. Feesby, a Neurologist there. During that visit it was confirmed that I had Lou Gehrig's disease. Then came the devastating news that life expectancy after being diagnosed with this disease is 18 months to 5 years.

    This set off a chain reaction and my mind seemed to be traveling a hundred miles an hour but was not producing any semblance of logical thought. Thank goodness this reaction did finally clear and I was able to think in a more reliable manner. I did enter the study – in - progress and started taking Rilutek, which I continue to take at this point in time, and do believe that I am benefiting from the usage of same as the said disease seems to be progressing, but very slowly. I do find that I am having to slow down and that I must listen to the body a little closer than prior to ALS or find myself in a great deal of trouble and a little bit of pain.

    Then came many nights with very little sleep so I decided to pay a visit to my Doctor. I did not receive any remedies to help with the problem though. These sleepless nights still continue, and of these there have been, and probably will be, many more.

    There are now many things that I am unable to do and how I look at life and live it has taken a drastic turnabout. This disease not only causes hardships for the person living with it but many others who are involved in the patient’s life. With this I sometimes have to struggle to keep in mind that life still holds many pleasures, even though at times these may be hard to realize. The ups in life may be fewer than before, but with a little effort I believe that there will be many more of them to arrive in this old boys life. My wife, Joan, my son and daughter, and their families have brought, and still bring, many hours of pleasure to me, and the arrival of an unexpected grandchild, a bouncing baby girl in July of 2000 has added to this pleasure as all my grandchildren have done over the years! I have found that I enjoy poetry and in writing poems of my own this helps me to express my feelings which I usually have trouble doing. I have found that I have very little trouble expressing my thoughts or views when I put them in written form.

    That Lou Gehrig's disease has changed my life there is no doubt, and very much so! But even with this in mind I do believe that I could still have many years to enjoy a happy and productive life and will continue to live with these thoughts and views until called by my Maker. I may go down, but I know that this old boy plans to go down fighting, and I mean fighting all the way!!

 

NOTE-

Here you will find a poem I wrote that expresses my thoughts exactly.

 

This Unbelievable Merry-Go-Round

If you really think this life's been nothing but a burden

And you are thinking, how will I ever make it through

Take a look around you; there are people in this world

A whole lot worse off than you

So remember in this life, if all you do is cry and complain

There are many people out there, that are in a lot more pain

And a lot of them, they cry and complain, just like you and me

While others just sit and hold it in, they don't share their misery

So next time you are crying and thinking, it's just me and why

Just try to remember the others; it's for them we should cry

I am one of these people, given a heavy burden

          To carry the rest of my life

But I know this burden is shared by many others

Also my family and my loving wife

So next time a heavy burden, it seems to get you down

Try to remember about all the others who share

In this, "Unbelievable merry-go-round".

 

Written Nov.11th, 2001

Dedicated to all who help me carry this burden,

and share this battle with me.

I could not do it alone

   Thanks As Always Merv.

Editors note: Here is an update by Merv.

Mervin Vindevoghel    Diagnosed May 23,2000

    It is almost three years since I was told that I had ALS (AMYOTROPHIC LATERAL SCLEROSOS) or more commonly known as Lou Gehrig’s disease and at that time was informed that life expectancy after diagnosis is from 18 months to 5 years. This is one area I plan to give great resistance. Life has surely had to change drastically, but I still believe holds many joys. There have been many disadvantages that have shown their ugly head, but also many benefits. “You may ask”! How can this be since this disease will probably at some point in the near future render my body as almost useless, and my answer to these comments are: -

  1.  I have learned that there are a great many people out in this, so called big bad world that have and are always ready to lend a helping hand even though it is of no benefit to them, unless they consider helping others is of some benefit.

  2. Life is what you make it and you must learn to live with the circumstances at hand. If we look hard enough it seems that there may even be some benefits to be derived from our dilemma.

  3. I now realize I have a family that seem to overlook most of my faults, at times, not very likable moods and never fail to let me know and feel their love. 

  4.  I have been honored in that I have meet and communicate regularly with the many new friends that I have found. Some of these I have and probably will never have the honor to meet personally. These new friends always seem to be available when a little laughter and a boost is needed to lift me from some of my to often downs.

  5. I have learned that when a problem arises I just have to work a little harder than prior to solve it and I will likely have to tackle same with a different and sometimes unusual manner.

  6. Life has given me quite a challenge and that small hill is now a mountain I realized that there will be more struggle, and to reach the top will give me battle, but the struggle to get there gives purpose to life. I believe once there no more struggles, it will be time to move on.

  7.  I cannot say with honesty that I do not miss the many things that at one time I took for granted, and that I can no longer achieve these simple goals does not bother me. Though! When I see the world, as it is I realize that there are many others whose battles and suffering are much greater than mine.

  8. My only wish now is that I can face this battle with a positive outlook and with dignity and try to ease the burden that will be placed on family and friends

    I will ask guidance and know that I will receive until the end of my earthly stay

    At this point in time, and I do hope these thoughts continue to be part of my views until this trip comes to an end

You bet “Life’s Still Great”

"We are not victims of aging, sickness and death. These are part of scenery, not the seer, who is immune to any form of change. This seer is the spirit, the expression of eternal being." Deepak Chopra

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