Thursday, August 21, 2014

Helping ALS Patients and Families

In the last couple of weeks, as the ALS Ice Bucket Challenge has continued to spread, some questions have arisen about the ALS Association.  A lot of people have stated, on social media and elsewhere, that they feel ethically or morally unable to contribute to the ALS Association because of a study funded by the ALSA that includes research into embryonic stem cell research.  This concern has gone more or less viral in certain communities, some of which I happen to affiliate myself with.  In some cases, people have outright dismissed the challenge and the idea of participating altogether.  I've responded as best I can via Facebook to individuals, but this has spread so far now that I felt compelled to write up my thoughts here to share with you.

If you are reading this, you probably know that both my grandmother Jean and my mom Lillian died from ALS, in 1979 and 2011 respectively.  The Ice Bucket Challenge timing really affected me, because Mom died three years ago this week.  With that in mind, it's hard not to take the cynical, the dismissive, even the well-meaning critics of the ALS Association and the challenge poorly.  Put bluntly, a lot of the comments have hurt.  A lot.

Before I go further, let me state that I am pro-life.  My mother was a very active pro-life advocate; she counseled young women when she was in the Navy, and she remained active in the Catholic Church, the Ladies' Auxiliary of the Knights of Columbus and other groups in promoting the pro-life message.  And she was very motivated to actually help those in need as opposed to simply talking about it.  That's the environment I grew up in.

I am not affiliated with The ALS Association, and I don't speak for them.  My family did receive help from our local chapter when Mom was sick.  I will say that I think that the ALSA takes a very broad-based approach to ALS research, and I don't fault them for that at all, even if I have ethical concerns about embryonic stem cell research.  We're talking about a disease that medical science has almost no answers for.  They don't know precisely what causes it (if it's all genetic, which environmental factors may contribute), how to prevent it, how to slow it down, how to cure it.  It strikes seemingly at random, but then it occasionally runs in families, it strikes veterans at a high rate (especially Vietnam and Gulf War vets).  People have been diagnosed as young as 21 (Stephen Hawking) and as old as 70.  The scientists studying ALS have to look everywhere.  I can't - I will not - blame them for choosing to look everywhere.


I understand, very well, the arguments against embryonic stem cell research, which I will not rehash here.  And with that in mind, I understand as well that there are people who want to help but who cannot in good conscience give to the ALSA because of those arguments.

So where do we go from there?

A few general thoughts.

1 - Find another organization to give money to.  The John Paul II Medical Research Institute is a good start.  If you would rather a non-denominational or non-religious organization, I recommend my mother's favorite charitable cause, the Paralyzed Veterans of America.  The PVA was extremely helpful to my family during my mother's illness, and because ALS is a paralyzing disease, veterans with ALS may find help there.  Finally, the ALS Foundation for Life is focused more on helping patients and less on research (an ALS patient may spend more than $100,000 on assistive equipment and medical supplies during illness).

2 - Be mindful of what you say, and how you say it, on social media.  Remember that you don't know who in your circles may be suffering (I have discovered that three friends have family members awaiting diagnosis of ALS, and I've lost count of how many people I know personally had someone in their lives die from ALS).  The Ice Bucket Challenge is goofy in nature, but it had a very serious beginning and it has a very serious purpose.  Be mindful of what you say.

3 - ALS may not be the cause you should take up.  We all have someone and something we care about, and it is truly impossible to help everyone everywhere with everything.  I have a cousin whose passion is organ donation, because her husband suffered from a lung disease for which the only cure was a double-lung transplant.  My mother-in-law is a breast cancer survivor.  My brother has spina bifida.  And so on.  We have to pick and choose which causes to support - this is the nature of our reality.  So maybe you should help with Alzheimer's research and care, or cancer, or MS, or cerebral palsy, or autism, or any number of other causes.  I think the real challenge is to stop and help whenever and however you can.

I will leave you with this.  My mother was diagnosed not because there is a test for ALS, but through a process of elimination.  When she showed up at her doctor's office with slurred speech, having trouble swallowing, the first tests were for thyroid and brain cancer.  It took weeks to get a real answer and again, there was no test for it.  It was just that everything else was eliminated.  She had a speech machine not unlike this one.  When she lost the use of her leg muscles, she was wheelchair-bound, in a motorized chair.  The house had to be retrofitted to accommodate the chair and her new special needs.  She needed a feeding tube, and special nutritional drinks that could be fed to her through the tube.  Eventually she needed a hospital bed.  A home health nurse.  Special dental work to protect her mouth once she could no longer close it.  She was prone to bed sores and pneumonia because of her immobility, and so needed treatment for that.  I will spare you a full accounting of what kind of care she needed daily, but I am sure you can imagine.

What we need, even as desperately as we need research and development, is practical help for patients and caregivers.  Find a way to help.  Don't dismiss the cause because of one issue with one organization.

Remember my mother.

Tuesday, August 19, 2014

The ALS Ice Bucket Challenge

My #IceBucketChallenge Response:

On this, the third anniversary of Mom's passing, I want to share my thoughts on the Ice Bucket Challenge.