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Awful Truth: What’s Old Is New – Again

ALS-AwfulTruth18

I am re-releasing an older video I did with a new somewhat tighter look and some upgraded language (words I never liked when I originally released it). Essentially, nothing has changed in 6 years since 2011 to 2017. Radicava was approved for use in the USA, but it only works in very recently diagnosed patients and only for about a year. I classify it with Rilutek as a medication with a rather modest effectiveness. No truly effective and approved treatment exists yet for ALS.

And PALS are still being forced to make the terrifying and grisly choice between bankrupting their families merely for the privilege of living or just accepting a rapidly accelerated death where one morning their children or spouses would find them cold, pale, and never to wake again. Everything is covered by Medicare except the people required for being close by for the inevitable situation of something happening with the ventilator – normal moisture or mucus buildup, the air hose popping off, or something drastic going wrong with the machine – any of which mean death in minutes. Immediate family CANNOT be caregivers because the stress is just too great already. The health consequences would splinter a family at a time when being close together is the most important.

It is despicable that even when new treatment options which promise significant extension of life for PALS that they may be unable to enjoy that gift with their families.

Please enjoy my renewed video message.

2 thoughts on “Awful Truth: What’s Old Is New – Again”

  1. Thanks for opening up your life to us Eric. Keep the truth of ALS out there alive and unfiltered. Hopefully a breakthrough is in the near future.

    1. Thanks Dan. I think there are actually a few game-changers in their final stages of testing. I think 2018 will be a massive year for PALS, but until it actually happens – it hasn’t.

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