ALS at late stage

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etikhomolov

New member
Joined
Mar 10, 2021
Messages
1
Reason
PALS
Diagnosis
07/2017
Country
CA
State
BC
City
Richmond
People who are not familiar with the details of ALS view a person with ALS as doomed but who can still fill his life (with help from Health Care System) with normal human activities including working on the computer, watching TV, and participating in forums and groups interesting to him. It is true at the early stages of ALS. The majority of ALS patients die because of various forms of respiratory failure not reaching the later stage of ALS. But if they reach my current stage, they enter a completely new world. Now, when almost all physical capabilities of the body are gone they find that Health Care System is not capable of properly supporting such seriously ill people. I describe in my novella how the world looks in the eyes of persons with ALS at the later stage of the disease, including brutally frank discussions about problems (and some solutions). Novella is published on the following free web site:

Listen, Mark is Calling from the Black Hole

Please, have a look. I will be happy to hear your comments and discussions.
 

Fusia

Distinguished member
Forum Supporter
Joined
Oct 26, 2019
Messages
145
Reason
PALS
Diagnosis
08/2019
Country
US
State
MT
City
Big sky country
Wow, just wow. Your novella is a horrifying and disturbing description of your current existence, and it makes me sad to read it. Here in the US, very few PALS are in facilities, so it was eye-opening to read about the relatively poor level of care that you've experienced. What I'm curious about, though, is you mention MAID very early on, but indicate it's really not an option for you (or maybe it's that you don't want to go that route at some point). However, there have been many discussions on this forum about other options that a PALS may choose - such as titrating morphine for pain relief or palliative sedation.
 
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