My doctors have referred to me as atypical, an anomaly, a curious fello, a medical puzzle and my favorite "A once in a lifetime opportunity
for a doctor". I have ALS (Amyotrophic Lateral Sclerosis) otherwise known as Lou Gehrig's Disease. What makes me different is
that this started over 22 years ago, and I also have Multiple Sclerosis. It is a rare form of MS called Primary Progressive
Multiple Sclerosis. My doctors are unaware of anybody else ever having both ALS and MS. The odds of this combination is probably
about 1 in 1.25 billion. I maintain this entire website on my own which adds a unique perspective. Typically websites or blogs
regarding ALS are written by health professionals or family members of People with ALS. This website comes from the perspective
of a victim.
In 1990 I was in a car wreck Where a Woman Named Barbara Conn was drunk behind the wheel.
She rear ended me at 5:03 PM. She had gotten off work at 4:30 about 8 miles away. She was arrested for DUI and went to jail
where she later died, of a brain hemorrhage.
As I sat at a traffic light
and glanced in the mirror. I saw a fast moving car way to close. With my hands at 10 O'clock and 2 O'clock I put a death grip on the steering
wheel just as I made the single most worst mistake of my life. I turned around. Oh damn, I turned all the way around. My neck was twisted
180°. I looked Barbara Conn dead
in the eye as she made contact with my car. This was a minor accident
with great consequences. I had complained of lower back pain as well as some unusual symptoms that would arise within hours. I would have muscle
spasms and twitching. Sometimes I would pick up my keys
and I would literally have to pry my grip open with my other hand. The thumb on my left hand would never again bend so far as to reach the base
of my pinky like the right thumb does. I would get cramps in my stomach, chest, arms and legs. I would get back spasms that continue
to torture me to this day. I did not have to throw my back out lifting a heavy weight. My back now had it's own built in Spasm machine
that would twist and turn until I was in so much pain that I would be laid up in bed for days.
Back then I thought these issues were due to nerve damage caused by the car wreck.
I do not believe I had ALS at that time, I suspect the car wreck was the catalyst for many factors that caused PLS
or Primary Lateral Sclerosis. It is my belief and some doctors agree that it manifested into ALS more than 10 years ago. I do specifically remember having
issues in 2002 where lifting my feet became difficult, this is a classic early sign of ALS.
In 1998 Michael J. Fox announced to the world that he had been diagnosed with
Parkinson's Disease. If I had a nickel for every time somebody said "You know you remind me of Michael J. Fox"
I would be a wealthy man today. I am not some handsome quick witted kid who does a mean Chuck Berry. I had
some odd ticks and twitches. My hands began to tremble, and every muscle south of my neck began to spasm.
The first time that a doctor suggested to me that I might have Parkinson's or MS
a light flickered on and off in my head. It took me just a
day or 2 to discount the Parkinson's theory, my symptoms didn't match very well. MS was a more likely match, but not exact.
On the following pages I want to share with you some information I wish I had 22 years ago. I have made some poor choices in life.
I hope I can help you to not repeat. I have learned some things about our healthcare and legal systems, I hope to enlighten you so you wont be so
naive. I have learned some things about Neurodegenerative Disease. I never would have guessed that an injury could lead to a disease,
but I now believe it can.
In the beginning I went thru about 15 doctors who never believed me. Never once was I in the presence of a medical
professional when some spasm happened that I couldn't fake. Many times a day my left arm raises my fist towards my heart, easily faked. There is stuff
that can't be faked and it will take 22 years for a doctor to see it. I had been accused of faking it for pills, faking it for a lawsuit. I had a doctor say
to me "You know there is no pot of gold at the end of this rainbow. You won't be able to sue anybody over this."
I never tried to sue the estate of Barbara Conn, in retrospect
I should have hired a lawyer to make the damn doctors do their jobs. I needed somebody to make my doctors give me medical advice, not legal advice.
All these years I have lived with these symptoms, they continued to worsen over the years. Yet I still never took any pain Meds. As a truck driver I had the choice
work or take pain pills. Truck drivers can't have anything stronger than Advil. In November of 2009
I was offered a job for 35% more pay and a brand new truck. After accepting this job offer I quit my job, turned in my tuck, declined
the Cobra policy and then failed my new DOT physical.
Suddenly I am unemployed living in a hotel because the condo got condemned due to
mold (My bad several months on the road with the air off), All of a sudden life sucks.
3 different trucking companies
have turned me away Due to noticeable continuous tremors, and motor skills that have failed enough to keep me from being able
to climb in the back of my trailer. By the way my driving record was perfect. I drove about two million miles accident free, without 1 late load.
All I want is to get a job, and move on.
Keep in mind that my health insurance lapsed because I thought I would have a newer better paying job with better health insurance before the end of
November but now I am broke and Ill without insurance. My anxiety was high and I became weaker every day. In August of
2011 I took a turn for the worst. I said to my doctor "I have been telling my friends and family that God has me on the accelerated aging program...
But You don't believe that do you?" He said "No I think you may have MS or Parkinson's Disease". Well holy crap! Parkinson's? like Michael J. Fox?
Well there we have it. For more than 2 decades I thought I had an injury. The doctors are now calling it a disease. I can just Google up my own diagnosis.
Suddenly things make sense, sorta. I have to wait two months to see a specialist, who is doing this Pro-Bono because I
was too ignorant to take the Cobra policy. The specialist orders some testing that will take another 2 months to complete. Well I
can Google with the best of them. I compared myself to videos of Michael J. Fox. Michael's disease causes a sort of rhythm in his movement speech and manners.
Mine does not. MS seems to be a better match than Parkinson's. I have just about every symptom associated with MS. What I assumed
was muscle weakness turned out to be muscle loss. Hmmm... I have muscle loss. You can actually see it. By November of 2011 This illness had destroyed my legs
and I needed a walker.
By this time my motor skills were shot. I could barely get in to my own car. Imagine if every time you went to get in your car your right foot refuses to go.
I have to manually lift my foot with my hands or my cane. Every muscle in my body has spammed, cramped and
twitched. For years I have wondered when will this cause a heart attack? It has attacked every other muscle. Why
have I not had a heart attack? A pack a day for nearly 40 years, high blood pressure, high cholesterol. My father was lost due to heart disease.
Why have I not had a heart attack? This disease has caused every muscle in my body to spasm, twitch, cramp or all of the above at least once each day.
Every muscle took a hit every day. The heart is a muscle, right? I have waited for more than 15 years
for it to hit. I started to wonder why it never happened. This was one of the two final puzzle pieces to figure this one out.
One month before I am supposed to have a diagnosis from the so called experts I solved this puzzle on my own. I needed to share this news with somebody.
I became 99.99% positive of the fact that I had hit the lottery on disease. I have little in common with Michael J. Fox,
On Sunday November 20th, 2011 I realized I had Lou Gehrig's Disease.
The next 4 weeks will be pure torture because I won't have a doctor confirm this for another month. I have this knowledge which I
should not have. When I realized that I was indeed ill I was forced to do some research. Enter the double edged sword of knowledge.
I had the ability of preparing my 2 sons for the horrible truth 1 month before
I am supposed to know it. There is no cure. I plan to keep a running
journal here of my treatments and successes. I am now 50 years old. Statistically speaking I would be lucky to see my 53rd birthday. I'm shooting for 70,
I will settle for no less than 65.
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