Tuesday, June 8, 2010

My ALS Rage Boileth Over

Sleepy has a case of ALS rage. It started 13 years ago after I had been asked to pick up some liquid Centrum for a loved one with ALS since she read that vitamin E might be helpful. Later that same day I read in Lou Gehrig's biography that Eleanor Gehrig used to pick a certain type of greens in Central Park because they were high in vitamin E which was thought to be helpful with ALS. Over half a century later and we were still grasping at an unproven vitamin E theory. That did it. ALS rage has been a part of my life since.

Normally the rage can be channeled into very constructive activities related to awareness and advocacy.

Occasionally something hits my ALS rage button particularly hard, and the rage boils over. Today is such a day.

Take a look at these old digests. They're from a listserve that was a wonderful support mechanism 10-15 years ago. The cast of characters has changed for the most part, but the roles and theories and claims and questions are horribly similar to today's. Change the dates and much of this content could have happened yesterday.

People with ALS have no good choices, so they do their best. Unfortunately we have failed to offer them better choices in the 70 years since Lou Gehrig was diagnosed and in the 70 years before that when the disease was first identified.

Patients hang their hats on hope and sometimes listen to what they want to hear.

Over the years they have sometimes viewed the drug they can't have as the next big thing.

There were no good answers for ALS 140 years ago. There were no good answers for ALS 70 years ago. There were no good answers for ALS 13 years ago. There are no good answers for ALS today.

Perhaps we need to spread a little ALS rage and channel it into some global resolve to finally provide some good answers to patients so that they can have some hope that doesn't require them to roll such cruel dice.


Anonymous said...

It's nuts.

Steve said...

Somehow we as PALS need to find a way to light a fire under the right pots. Unfortunately, these pots have a different kind of green than what Lou's wife found in the park.

Anonymous said...

ALS continues to kill, yet there is total jubilation year after year when fund raising goals are met. It is out of line even out of bounds to ask for valid transparency of where that goal is going to be spent. The ratio of funds returning to those doing the heavy lifting in patient services is so low, I wonder how that term can even be part of their slogan. I am convinced the research ratio is not much higher. Where is their proudest moment?

Anonymous said...

There seems to be no accountability much less transparency at the ALS Association national office. Perhaps the chapters can better use the funds now sent to run this expensive and non-responsive national office to directly help ALS patients.

Sleepy said...

In the big picture, we have failed to generate the kinds of funds and national resolve to jump-start ALS research. My opinion is that we merely tread water getting a pretty constant lip service share of government funds and some modest venture capital research ... but we've (individually and organizationally) not made a good enough case for meaningful investment.

In the meantime, everything is promoted as "promising" yet nothing has been proven as effective. People with ALS are then lured in by the "most promising" ... and I've been around these "promising" theories long enough to know that those who tout the "most promising" and fail to deliver have a fresh crop of recruits to work on with the next big thing after the old recruits die quietly from their ALS.

"Promising" doesn't cut the mustard. We need more meaningful research, we need to fast-track studies, we need data, we need collaboration, we need openness.

Another 2 cents from Sleepy fwtw.