Saturday, May 25, 2013

two degrees from ALS

May is ALS Awareness Month.

That very phrase strikes an odd note with me.  I feel like the concentrated publicity and public outreach that is supposed to take place during an "awareness" month should be a year-round occurrence   I mean, this is a disease that invariably kills - there is no cure.  It has no discernible pattern, except that we know it sometimes runs in families, that there may be a genetic marker, but that it also occurs randomly, it hits veterans at a greater rate than any other population segment.  You can live for decades with it - see Stephen Hawking - or just a couple of years past diagnosis - see Lou Gehrig.

So here's my pitch.  You probably don't personally know anyone with ALS.  Chances are, you probably won't in the future.  But you know me, because you're reading this blog, and my mother and my grandmother were both ALS patients.  So your connection to ALS is really just two degrees.

Christmas 2009 - Me with Mom in her hospital room.  This was thankfully the only Christmas she spent in the hospital.

Take a minute and get educated.

I don't expect everyone who learns about ALS to donate money to the cause of finding a cure.  This is one of my causes because it hit home, not because of a celebrity or even because of a neighbor or friend-of-a-friend.  Certainly not because I read some blog posts about it.  But, consider this, if you've got $10 to spare. As the disease progresses, ALS patients require full-time care.  Many need wheelchairs early on, they need  medical equipment like oxygen masks and tanks, feeding tubes, catheters, all the attendant supplies.  Some need caregivers at home, others need to be in homes.  Insurance does a lot, but it doesn't do nearly enough, and not every ALS patient has the resources of the VA like my mother did.  The ALS Association is mostly focused on research, but if you can find a way to help them or, even better, caregivers and patients directly, you're doing a lot. (updated:  in light of the Ice Bucket Challenge and ethical concerns raised about the ALSA's funding of embryonic stem cell research, I have listed out other charitable causes that you can help in this post).

I'm not the hopeful type, when we're talking about ALS.  It is really difficult to fathom a cure, when we have so few effective treatments.  But comfort, having a support group, responsible end-of-life care, these are things I think we can give ALS patients.

Consider it.

And pass on the word.