I am the brother of an ALS patient that was diagnosed back in 2005. For him and those of us that know and love him, his journey with ALS is still going which has allowed us to spend more time with him than most usual ALS patients get to spend. There is no time table, there is no schedule to follow and there are no second chances (at this time). It is unfortunate to see that others will be suffering this horrible fate. For those that have been recently diagnosed, let me offer some advice from our years of experience - primarily would be to have a plan for your future, especially the kind of care you may need in the later months/years of being sick. My parents are in their 80’s and they still care for my brother to give him the best life he can have at this point. He is still in his own home, since it is a collective belief that if he were in an institution of some kind, that would kill his spirit. Even though he needs 24/7 care, he has his freedom to have his own schedule…not one that is set for him by others. Is it inconvenient for my parents, of course it is. And when I was out of work, I moved home and helped take care of him for many months back in 2020 & 2021. Unfortunately, there is no real help or it is scarce in the private sector of central NY since the money needed for such help is being spent elsewhere. Yes, the local chapters do help when they can, but unfortunately, there just isn’t enough to go around for the long term care that is needed with people like my brother and it is even worse off in the rural areas, it is hard to find help that is willing to travel these days.
So again, my advice is…have a plan for the future. And I pray for all of you to live your best life possible.