A LITTLE WHINE WITH MY CHEESE


Facebook is a great place for causes.  Some one is always sharing stirring stories and inspiring calls to action.  In the past couple weeks I seem to have seen nothing but rallying cries for cancer.  It’s hard not to feel like the child of a lesser disease.
 
Okay!  I get it!  Cancer is pervasive.  Just about everyone has been touched by it, having battled it themselves or knowing someone who has.  It’s cruelly painful, and can entail long treatment regimens that drain patients and families.
 
Well boo-frickin’-hoo.  I’m on record as saying I would trade ALS for cancer in a heart beat.
 
Billions of dollars are spent on cancer research and building state of the art treatment centers.  And the results are amazing.  Stories of miracle cures are almost common place.  Survival rates are in a steep climb.  People battle cancer, because there is often at least a glimmer of hope.
 
Ever hear of a state of the art ALS treatment center?  Me either.  I have yet to hear about anyone who has been miraculously cured of it, let alone seeing it go into remission.  The mortality rate for ALS remains a flat-line 100%.  You don’t battle it, you don’t struggle to live with it, you do your best to gracefully die with it.
 
Yes.  Every once in a while I feel some bitterness.  It’s difficult to  watch the energy in the battle against cancer and know my disease barely gets a whisper.
 
There’s the whine.  Now here’s the cheese.  I suspect there is a reason ALS is a “lesser disease” in terms of research and treatment (a couple of years ago, the ALS awareness campaign’s slogan was “No cause, no cure, its time”).  Quite simply the percentage of the population suffering from it is significantly less than cancer or perhaps even MS.  And the insidious thing is that out of that smaller population sample, suffers aren’t around for very long to study.  The particular form I have affects one quarter of ALS suffers, an even smaller sample, and it results in death in three to five years.  
 
This is only anecdotal, so take this with a grain a salt; but my impression is that ALS research is desperate for study subjects.  I was officially diagnosed at the University of Colorado Denver, which does research on ALS.  They stopped just short of begging me to be involved in a study, any study, including one that was as basic as trying to find indicators of the disease.  Last summer we heard about a test project on a drug that some people claimed had helped them regain muscle strength in initial tests.  That was little more than a year after my diagnosis, yet I my symptoms had progressed too far to meet their criteria. Too cap it all off, ALS is notoriously difficult to diagnose; that means many suffers end up well along before they even know what’s wrong.  No wonder that when I was diagnosed by one of the top experts in the region, all he could say was that I was definitely in the early stages of some form of ALS.  Compare that with someone being given a definitive diagnosis of the location and stage of cancer. It’s been around for so long, but obviously there is so much we still don’t know.
 
I’m not really a “causes” kind of guy, even about ALS.  So I’m not really the right person to say,  “Get out there and join the fight!”.  But simply being aware of the disease helps.  You may be surprised how many people you know who have been touched by it or will be; better yet learn something about how it progresses (the non-fiction “Tuesdays with Morrie” by Mitch Albom is a good starting place).  Keep in mind that family members of someone with ALS need as much or more support as the sufferer.  If you are a cause person who likes a good crusade, check out http://www.als.org for suggestions about how to get involved.  And incidentally, May is official ALS month.
 
Sorry for the whine, but I hoped you enjoyed the cheese.
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2 thoughts on “A LITTLE WHINE WITH MY CHEESE

  1. Whine away Tom!! ALS sucks, it’s not fair, I’m still mad…..at who?…at what?…I’m preaching to the choir again. Why God? Why, why, why. Why Tom? Why anybody that has to deal with this crappy ALS. Yes, MS is a big pain in my butt & I can’t do a lot of things anymore…But I’ve got a normal life span. My 17 year old niece has leukemia, she is sick, sick sick…with a 50% survival chance (I’m not posting this on Facebook so she doesn’t see this). This sucks too, but she has much better survival stats.

    I’m not sure about anyone else……but I feel so damn helpless & useless

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