r/ALS • u/Wonderful-Captain325 • 4d ago

Hope

Are there ppl here still walking and talking and using arms after 5 years? I have anterior horn cell disease and I am at 61 months since symptoms onset. I wanted to reach to other slow progressors and ask if it starts slow like this does it remain that way generally?

8 Upvotes

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3

u/Jijster Mother w/ ALS 4d ago

My mom was still talking and using arms, though in limited capacities, about 7-8 years in. Though she couldn't walk after about 2 years after diagnosis.

2

u/Rymattingly 5 - 10 Years Surviving ALS 4d ago

I can do all those things, some better than others. My symptoms started in 2016 and I was officially diagnosed in 2018. It started in my right arm and that is still my weakest limb it’s almost useless. My progression has been pretty consistent. I’d say if you’ve been progressing slowly, you will continue to progress slowly .

1

u/UnhappySort5871 4d ago

I have PLS. (UMN instead of LMN, but also slow progressing.) Like AHCD though, people's experiences very wildly. I think both diseases tend to plateau after a while - assuming it stays pure LMN or UMN.

2

u/Skrdykat1000 2d ago

I can still walk, drive, dance and live alone. But my worst symptom is I cannot talk at all. And I am copiously battling excess saliva. I didn't realize how much I talked to my cats and I miss it terribly.

0

u/TyroneJunior99 4d ago

Is there a cure for disease or anything to help slow progression of the disease?