ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, August 7, 2012

Holding Breath Is Not An Option

The following was submitted by a reader of www.alsadvocacy.com:

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Of course when I was a newbie ALS inductee, when it really didn't affect our lives that much, I was sure there would be a treatment soon, when our family became more affected by the disease, I was still sure there was going to be a treatment. Now that we face life and death decisions, I am sure there is NOT going to be a treatment, in time, for our family.


We've been fighting this disease for years, doing everything on every front possible that a family can do to help bring treatment to fruition. We've walked, we've ridden, and we've hounded out friends for years to help support ALS research. I know exciting research news gives people with ALS hope, and yes, can even brings in donations.

But now, when I hear news about THIS ALS research and THAT ALS research, I want to stifle back a scream or an eye roll, or at times even a laugh...most of this research write up news always ends with, "this discovery will lead to new ways to study ALS."

To me, I have learned over the years that these research news blurbs means is, "yeah, we think we found something, but you know, IF it gets from the research lab to a clinical trial, it's still YEARS away to a treatment." Oh yes, yes, I KNOW ALS is a tough disease to research, there are many aspects and nuances, and it seems to affect every person differently. I have been told that many times in ways that are compassionate, in ways that are condescending, and yes even completely ignored at times when I tried to question research.

How much more studying do you have to do? Can't you do something instead of studying the disease?

But you know what, I'm guessing research is not as tough as living with it, day in, day out, week in, week out, year in year out. The research is frustrating I'm sure,

ALS is a disgusting, vile disease all the way around; there is nothing easy about any of it. I think that is one thing that both researchers and ALS families can agree on.

But after living with the disease for these years, I'm not impressed. I'm sick and tired of hearing about research breakthroughs, that are years away from producing any kind of treatment. I suppose you could say I'm a bit jaded in my thoughts because like I said, when I was an ALS newbie, I knew there would be a treatment. However, as an old-timer in this stupid disease, I wish they would keep their news to themselves until they can come out and say, "WE HAVE A TREATMENT that works RIGHT NOW for EVERYONE." Until then, I'm not holding my breath...because hey someone has to keep breathing here.

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