Sunday, February 14, 2010


"my" because I am here all the attempting to document my experience
with my ALS -- not ALS in general.
FUQ because I feel questions often go unasked, especially by adults.

What is ALS?
Lou Gehrig's disease, like Stephen Hawking has. A neurodegenerative disease that causes paralysis and muscle wasting.

Is it contagious?
No. Nobody catches ALS from another person.

Is it genetic?
90% of the cases are considered sporadic. I have no family history of ALS.

Is it curable?
Currently there is no cure available, there is no treatment.

What is that mask on your face?
It's called the bipap -- very similar to a CPAP used for sleep apnea. It's an air compressor. Not oxygen, ordinary air.

Does ALS hurt?
In my experience, it is not painful, and that is consistent with the literature, though I have heard others complain of a lot of pain. I have some pain -- earlier on there was sort of a opposite of "growing pains", i.e. a dull ache as muscles atrophied. Earlier on there was also muscle cramping. But now there is not much muscle left to cramp or ache.

What does ALS feel like?
Not being able to move a finger feels sort of like not being able to wiggle your ears. It doesn't really feel like the finger is immobilized, it's just not going anywhere. When I first had trouble walking, it felt like wearing a leaden pancho. Now I am confined to a wheelchair all day and it feels like G forces are pressing my upper body backward into the chair. My hands and feet are often very cold -- even in the summer.

Can you still feel?
Yes. Sensory nerves are not affected. Only the motor nerves -- those carrying signals from the brain to the muscles -- are affected.

Is it a disease of the myelin sheath?
No, it is not like MS.

How did you get it?
No one knows. It usually strikes adults, males more often than females. It has been observed, though not totally accepted, that it more often strikes lean or athletic people. It seems to strike Italian professional soccer players more often than the general population. Gulf War veterans seem to get ALS twice as often as would be predicted statistically.

Any ideas why?
Nothing but speculation: blue-green algae, protein misfolding, an autoimmune problem, a blood brain barrier problem, etc.

if they can induce ALS in a mouse, how is that they don't know what causes ALS?
10% of ALS cases are "familial"-- involving a specific gene. They are able to splice that gene from human DNA into a living mouse and produce ALS like symptoms. They test drugs on these mice. It is hoped, but not proven, that knowledge gained through this method is transferable to humans.

Are you depressed?
I have had five years to deal with it -- 11% of my life so far. Some people are prone to depression -- I don't think I am. One must take each day for all it's worth.

Are you scared?
Mostly no. I could die of carbon dioxide buildup -- drift off to sleep and not wake up. That sounds like as good a deal as anybody gets. Or i could fall smash my head, get run over by a truck etc.

Are you able to sleep?
There was a point where I would feel somewhat panicked when I went to bed -- sleep should be restorative, we sacrifice part of the day to unconsciousness in order to wake up refreshed. I felt that my time remaining was limited, and with the passage of time I felt that it weakens, not refreshes. It sucks. I got over it.

Do you ask "why me?"
A bus driver asked me that -- I don't think it occurred to me. I did wonder if things I did, or were exposed to, contributed, but at this point that is totally unanswerable and researchers are skeptical that knowing the cause would even lead to a therapy -- if a building catches fire, knowing where it started isn't really useful in putting it out.

Are you seeing a specialist?
Yes, I go to an ALS clinic.

What do they do?
Watch. Advised me against trying any alternative treatments. There are no other treatments. They did get me this wheelchair, and bipap, and offered a leg brace, but mostly they look stuff up on Google and tell me about it, and admonished me to not believe any thing on the Internet.

What does it feel like to have only a quarter of normal breathing?
When I have to take the bipap off, it's kind of like swimming. I could be without it for a short period of time, but I need to get it back on quickly. I keep thinking of that scene in 2001: A Space Odyssey where David Bowman has to travel from the pod back to Discovery...

Can I have your stuff?
Bite me.


Paul Johnson said...

Thanks for posting this. I'm one who would probably ask more questions than most but then I wouldn't know enough about this disease to know what questions to ask.

Are you able to type? If so I'd be interested in hearing your reminiscenses about SVS, I think you rode that didn't you?

PS: One other FA/UQ you didn't include:

What can I do to help?

Yr Pal, Dr C

AHands said...

I rode SVS in '04. I was the first American to start. Write-up and photos here.

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