My father was diagnosed with ALS
So...I just finished school and was starting to look for work. I knew my dad had been having some balance issues lately and knew something was up. There were a number of reasons why it couldve been happening *and a medication he was taking was a suspect..one I hoped was the cause*.
Well HE wasnt so lucky. Hes got ALS. (or Lou Gehrig’s disease as most will know it as)
Amyotrophic lateral sclerosis
is a chronic, progressive, almost invariably fatal neurological disease. ALS is marked by gradual degeneration of the nerve cells in the central nervous system that control voluntary muscle movement. The disorder causes muscle weakness and atrophy throughout the body. In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, waste away (atrophy), and have fasciculations because of denervation. Eventually, the ability of the brain to start and control voluntary movement is lost. However, even patients in advanced stages of the disease may retain the same intelligence, memory, and personality they had before its onset.
The average person lives about 3-5 yrs after diagnosis.
There is NO CURE
It can progress anywhere from slow to fast(and anywher in between) and there is NO WAY to tell how it will go for anyone. It could be quick or he could live 10+ yrs. Stephen Hawking has this disease but he was diagnosed young and typically if diagnosed young you have a much better chance of living longer. Plus hes got lots of money so he can have the best care and aids all the time.
It basically boils down to being trapped in your non working body. Involuntary reaction like going to the bathroom is still able to be controlled, but you cant get up to go to the bathroom... Your eyes and eye lids will still work. You will lose control over your breathing and will end up on a ventilator. You will also lose your voice. And thats the biggest thing for my dad as he likes to talk a lot and it will be hard for him not to be able to communicate EVEN if he gets one of those expensive computers to talk for you(you use your eyes to select letters and type out what you want to say).
I went to visit to take a break from just finishing school (and also for him to give us the bad news). The first few days , we didnt do much but just sit around and be upset about it. It was a huge shock. Various thoughts rush through your head. At least it isnt some bad cancer and he has 2-3 months left to live, but it still is difficult and having a general timeline of when you are gonna lose your father sucks in many ways! (It also sucks that you have no idea how it will progress)
The disease itself doesnt necessarly kill you though. Many people die from other illnesses(like pneumonia). Some people choose to unhook the ventilator because they woudl rather not go on living like that....and at this point I think my dad may want to do that and thats a huge bummer. 
Itll be tough not being able to golfing with him or do other physical activities which we like to do . Its especially tough on him. He played college basketball and was a very good hockey player. Loved to ski, golf, bike ride etc.
Along with this , there is so much other stuff to do to prepare for this. He will probably find it hard to work in a year and thus will want to spend his energy wanting to do other things while he still can. (although his plan is to stop working sooner).
I dunno, after the initial week of grieving we kind of put it out of our minds so we could still get normal stuff done. We have lifes to live (incl him). Its just gonna be hard living it without him around.I want him to be able to hold some grandchildren
He had a heart attack a couple yrs ago and that was a wake up call for him to take some better care of himself and he was doing so and doing well...and then this has to happen. wtf. Not to mention my mom went through breast cancer just before his heart attack.
Go give your parents a big hug!
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Trance in my pants
Last edited by Euphorica on Oct-05-2006 at 03:20
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