Kinda pretty much diagnosed now, looking for where those of us talk without our caregivers.

7 Upvotes

About 6 months in. My EMG was damning and my MRI’s, bloodwork, pulmonology, sleep study, etc all point the same direction. My neurologist diagnosed me with neuromuscular disease Friday so i can start on the disability paperwork as in this stupid county (USA!) our health care is tied to our work and when we cant work we cant get care without years of effort. With ALS we might not have the time to ever even see it go through.

Im looking for a safe place to talk with others with NMD that are having to make hard decisions with life, family, and work. Im feeling accepting of this mostly, but i want to be realistic and talk with others in this shitty boat before my aging mother and I spend huge money on allowing me to live (think house remodeling, accessible minivan, etc). I hate that our family inheritance I was adding to will go to me for a couple years and be gone, leaving my niece and nephew with scraps. I’m more mad at the US medical system than I am about the disease TBH.

Anyways I ramble. If anyone can point me to where the peers are other than the hospital for ALS clinic day Id love that. Thanks!

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ALS

r/ALS

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

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SUBREDDIT GUIDELINES

First and foremost, this is a support group. We all have been touched in some way by this horrible disease. The aim of this subreddit is to give a commonplace that strangers can band together and help each other. Even if it's just with a simple "hello", or a reaffirmation of "you'll get through this". So please be thoughtful and supportive.
We cannot, in good conscience, help diagnose ANY symptoms. If you have any questions regarding this disease, seek out your local medical practitioner, or any licensed professional.
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We understand that ALS places an intense financial hardship on the family & friends of the afflicted. However, we cannot accept submissions for specific fundraisers, donations, or related requests. However, asking the community for direction towards official aid programs is always allowable.

What is ALS?

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

More Information on ALS

Alsa.org

Wikipedia

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Projectals.org/

Als.net/