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rcharlton

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641
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PALS
Diagnosis
11/2005
Country
CA
State
Ontario
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Toronto
Here's a good one...

I was diagnosed with "probable most likely” ALS a few weeks ago...needless to say that this has turned my world upside down...even though I am feeling pretty positive these days and I am not about to let this beat me...

So far it's affected primarily my right side - most noticeably weakness and muscle wasting in my right hand. It also appears that muscles on the right side of my tongue and throat are also affected.

Anyway...I believe there have been a number of ALS cases where the onset of the disease is linked to a traumatic event - such as a serious injury.

So get this...I love water parks...I am 38 - have no kids - but love going to Water Parks - I am usually 2 to 3 times as old as the next person in line for the rides...there is a fantastic water park just outside of Montreal at Mont Saint Sauveur. They have slides that run the whole length of the ski mountain and last up to 20 minutes....amazing...a good friend of mine lives in Montreal...I usually play hooky once each summer to visit my friend and go to the water park...(here’s a comical image – I will sometimes be forced to make business calls when I am at the Water Park – and I have often been stuck on conference calls without the other parties knowing that I am talking to them from a water park in a bathing suit hoping the call will be a short one so that I can get back to the slides “Hurry”)

Last August I went on such a trip....we were lining up for one of the rides involving an inflatable raft...as I was stepping into the raft I slipped and the whole right side of my body slammed into a wood post....I have never had such a bad fall and was surprised that I was not rendered unconscious...everyone else in line let out a communal gasp when it happened...I bruised and may even have cracked a couple ribs...

...I suppose it was shortly after that when I started developing my ALS symptoms...

Anyway...the spot on my head which slammed into the post was just behind my right ear...which apparently is the spot where the principal nerves affected by my ALS have begun degenerating...

Now - I know there is no definitive way to prove one way or another what caused or triggered my ALS...and this is most likely merely a coincidence...but it kind of floors me to think that my ALS may somehow be linked to a sunny afternoon in August when I was playing hooky at a water park and misplaced my footing while getting into an inflatable raft while being surrounded by a bunch of kids all wondering if it was "pasty old man day" at the water park…
 
My dad also took a fall last spring. He fell off a ladder and lost consciousness for who knows how long (he was by himself). A couple months later, he noticed his speech was goofy. That's when this whole ALS journey began. While trying to figure out what was wrong with him, the doctors did a MRI on his brain and said everything looked fine. If something would have been injured from the fall, it would have showed up on the MRI. The doctors around here could not find out what whas causing the slurred speech however, and sent him to the Mayo Clinic in AZ. THey are the ones who determined the early signs of ALS. I do wish doctors knew more about this disease because they seemed baffled by all of this too. Wouldn't it be crazy if that is how ALS started...with a fall? I don't think that is how the disease comes about, but interesting that you and my dad thought the same thing (that a blow to the head is when everything started happening).
 
I've seen others associate the beginning of ALS symptoms with a fall or injury of some kind so perhaps there is something to that theory. However, the conventional wisdom regarding onset of symptoms is that the motor neurons start failing months or years before symptoms present themselves. My own theory is that these falls and injuries are just consequences of very early transient muscle weakness.
 
I agree with you Meg but I don't think it stops there. I believe my wife's ALS manifest itself in several car accidents that she had in the year or two leading up to the diagnosis. Limb onset probably resulted a loss of control in a couple of questionable turns that she made. Coupled with backing the boat over a pile of rocks at the cottage it turned out to be a very expensive couple of years!

CHeers

T.
 
I too had a couple of bumps on the head. Once banging my head on the bottom of a pool at the age of about 25 and then a fall while playing hockey about 7 years later. Concussion and unconscious for about 5 min. Symptoms for about 6 weeks. Duly noted by my Neurologists and nothing on the CT Scan or MRI. A small lesion but I am told most of the population has at least one. So it would seem if this was the case with me it would have been moving really slowly.
 
My brother suffered a severe concussion as well about 10 years ago when the tank he was in (was in the army) rolled during a training exercise. I think the injury was just behind his ears as well. I have read research that it can take up to 10 years for the symptoms to appear from when a person "develops" ALS - although no one can tell definitely so. But then, bringing the military into question, American research into the links between ALS and the armed forces - if you served in the military you have a 60% higher chance of developing ALS than if you didn't. Injury/ trauma, stress and exposure to chemicals - I think these are all interrelated in some way or another.
 
Interesting, I think probably the falls were more a result of the ALS in its early stages. I know my friend, who use to ski well started having problems in that area a few years ago. He then, while under the assumption it was MS, was attacked and hit his head on the ground, blacking out for a minute or two. He also, after the diagnosis, had one of several mini black outs and fell off of a latter.
Anyone have mini black outs, last maybe 10-15 seconds, then you come to?
He also spent some time in the Canadian Military Reserves, and was training out in Western Canada. Doubt there were many chemicals, but there may have been some.
Food for thought.
 
This is quite an interesting thread!

About a year before my symptoms manifested, I was skiing and was hit in the back of the head by the rope buckle of the T-bar lift. Knocked me loopy for a few minutes...

I wonder if anyone else had head injuries prior to the onset of ALS?
 
Theresa, my brother has had fainting spells for the last 3 years - 2 years before diagnosis - he would get dizzy or lose consciousness for about 10-15 seconds and then be fine afterwards! The ALS neurologist thought this was strange and couldn't connect it to the ALS. He told my brother that it was all in his head - no kidding, my brother said! Something about low blood pressure at rest. I haven't heard about any episodes lately but then he is not as active since his legs started to get weaker.
 
Hi Guys,
I was so surprised to read about eveyone being unconscious.
I, too was unconscious for 15minutes after a car accident.
The Doctor at Sunnybrook ask me that question the first time I went to the clinic. Maybe there's a connection.Lack of oxygen to the brain,or some nerve damage.I wonder if we will ever know?
Stay strong everyone
 
I don't think he hit his head while skiing, but noticed a weakness in the legs. The time he was knocked out was just before the ALS diagnosis. About four years ago, maybe less, he mentioned he had experienced ,on two occasions where he was driving the same road as he did every day, found himself taking the wrong turn off the highway,and not realizing it for miles after the fact. At first he thought he was distracted, but when it happened several times again over that year, it seemed strange. About a year and a half ago, ALS diagnosed I believe by then, he would be typing to me, black out to find his coffee spilt. It's as if you are awake but not. I wouldn't say he was at rest as your doctors answer was, and the blood pressure low. I am not aware he ever had head injuries of consequence previous, unless some of the fender benders he was in as a teenager were more dire then he told me. And I doubt the teflon pan frying pans I have been tempted to use on his head more then once, really count!
Interesting thoughts though, especially to the lack of oxygen idea.
Hi Elaine, great to see you pop in, how have you been keeping?
Any music fans, I heard on the radio that Hall, as in the duo Hall and Oates, has been diagnosed with lyme disease.........
 
Bumps and the Military

Here is one for all of you, I was in the Navy for 10 years starting in 1963. There is no doubt that we were exposed to toxic chemicals as well as a ton of asbestos. During that time I was involved in a car accident in which I received a concusion, left my eye hanging out (which they fixed!) and required a spinal fusion. There is well documented facts of the numbers of Naval Personnel who conracted ALS in the late 50s and some considered Halifax as a hot spot. I received all the newspaper articles about this from an old sailor who had kept them for many years and when he found my web site he sent them to me and they are posted on my site at alsindependence under What Happened to These. Makes you wonder indeed if the two situations do not bring up more questions than answers.
 
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It sure seems like sometimes we end up with more questions than answers on these forums. Wish there were some scientists reading all of this who could make some sense of everyone's experiences. Calling all scientists......!
 
I don't think a scientist would be able to help. I have some science backgound, and scientists would typically reserve any opinion until the matter could be observed in a controlled test environment - which I believe would be next to impossible.

I think there are so many environmental variables that may lead to ALS that trying to make any causal link between one factor and ALS would be impossible. I think this is why the medical community is stumped.

There probably is no one cause for ALS - maybe ALS developed in each of us for completely different reasons - who knows.
 
Agreed. Additionally, I believe that what we all call ALS may well be several different diseases with different causes or triggering events. FWIW, if I had to guess at a cause for my illness, I'd go with autoimmunity but I am sure that most PALS don't have autoimmune problems.
 
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