What ALS patients have to put up with.
Here is a great example of what I have discovered about ALS. Once you get past a certain point in the illness, you get basically told you don't matter just go and die. And I have proof of it now. So there is this resource called ALS Problem Solvers. There goal is to help solve any problems you are having due to ALS. So I sent this email to them.
From: Russ Newton <rnewt1960@gmail.com> Sent: Thursday, February 3, 2022 2:48 PM To: ALS Problem Solvers <info@alsproblemsolvers.org> Subject: Help!
I am a bulbar onset ALS victim in my 27 month. I can not longer take anything by mouth and take 100% via a peg port in my stomach. Are there any trials that will accept me with this limitation? Thanks, Russ Newton
Maybe a little direct but I am polite through out it and I describe my issue succinctly. And while I don't claim I am mute, if your in anyway familiar with ALS you would know that when I mention I can't take anything by mouth that also means I can't speak. So here was the answer I received.
ALS Problem Solvers <info@alsproblemsolvers.org>Feb 8, 2022, 1:11 PM (2 days ago) to me Russ, Sorry for the slow response. I've been trying to find someone who knows an easy way to sift through the trial data to look for ones with no feeding tube exclusions, and I've not found anyone. The best advice I can offer are the I AM ALS Dashboard (which does not have a filter for feeding tubes, unfortunately) https://iamals.org/get-help/als-signal-clinical-research-dashboard/ or NEALS, where they have a person who is supposed to help people find trials -- ALS Trial Liaison at (855) 437-4823 or alstrials@neals.org I'm sorry I don't have an easy answer for you. I hope that the NEALS ALS Trial Liaison might be of help.
Thanks very much for being interested in a trial! Cathy ALS Problem Solver (who really didn't solve your problem, I'm afraid) So she was very nice at the end and acknowledged she couldn't help me. But now I have to pick up the ball and reach out again via email. (why even give me a phone number anyways?) but she discovered what I already knew. I am supposed to just quietly die so they don't have to worry about me. And it has worked. All the stop signs I have run into has convinced me there isn't any point in hoping or trying anymore.
Russ