Think Living Long-Term with ALS
It will take time to formulate this reearch into actual treatments, this is true. But there are many ways to extend your life with ALS when the time comes that exist RIGHT NOW that may allow you (me included) to live long enough to reap at least some of the benefits of future treatments:
(1) Diaphagm Pacing Stimulator. This device seems to be on the fast-track for acquiring final FDA approval and should be available to all PALS in the next couple of years. It has already been demonstrated to prolong breathing capacities in ALS patients for up to 2 additional years, with more improvements being made to the device to further prolong the strength of diaphragm muscles. This will delay the need for NIPPV (Non-Invasive Positive Pressure Ventilation) and TPPV (Tracheostomy Positive Pressure Ventilation) machines.
(2) NIPPV and TPPV. Yes, living on full-time NIPPV and eventually getting a trache/vent is a highly personal choice but one that can prolong your life for several additional years, maybe even a decade or more! Additionally, more improvements to these respiratory devices are sure to come.
(3) Communication technology. Voice Synthesizers, on-screeen keyboards, switches, eye-gaze technolgy--all of these devices can allow to stay communicated with family, friiends, and the outside world. And to come in a few years are thought-transferrence devices that can allow you to talk and even operate a mechanical arm just by using your thoughts, via electrodes attached to your head from a computer!
(4) Investigative treatments undergoing trials right now or soon to be. Some of these, whether it be stem cells, new drugs, and/or gene thereapy treatments could be shown to improve survival in just the next few years. Even if they only provided modest benefits, they could prove to help prolong survival long enough for newer and better treatments to come along and, in turn, further improve survival. Who knows--a cure may come along that could stop and even reverse some of the symptoms!
So keep up the hope and think living long-term with ALS.