Tuesday, 24 November 2015

Announcement Exhaustion

Way back when I was first diagnosed with ALS, I was very interested in all the research. I followed drug studies very closely, watching each development followed by each disappointment. I wanted to find something, anything, which could offer me even a smidgen of hope. As time went on, it became more and more difficult to face the constant disappointment, the constant reference to mouse models or future developments or potential treatments.

So I gave up. I don't bother with most of this stuff anymore. I don't read the research articles, the news stories, the Internet announcements, except in a few cases where the headline is well enough crafted to catch my attention. They are out there, in a constant stream since the Ice Bucket Challenge, as if the ALS movement has to justify its success with this wildly successful viral fundraising campaign. These announcements and articles are all geared towards showing success and value for money, showing how the IBC really has made a difference.

There is no doubt in my mind that the IBC did make a difference, that money which would never have been invested otherwise has been put to good use in funding research, medical studies, drug evaluations. I know this to be true. I also know that I still see the words "possible", "potential" and "future treatments" in almost every article and press release. It's frustrating, exhausting to see all this work with so little immediate impact.

Everything with this illness takes a very long time. It is such a complicated disease. My suspicion is that once ALS has been conquered there will be a great many neurological diseases dealt with in quick succession. After all, it's all about the neurons. I'm just getting tired of articles offering hope only to see it dashed in a veil of distant possibility.

I've decided I am not really going to pay attention until my doctor tells me one of these possibilities is now a reality, and I might get better because of it. Until then, I will let the medical professionals do the reading. After all, that's what they are supposed to do. I'm just the patient, nothing more.

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