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Ginny

Member

December 26, 2024 at 4:20 pm in reply to: How old were you when you were first diagnosed?

I was 75 when symptoms started and that was slurring my words, at 76 I was finally diagnosed at the ASL clinic in Atlanta. I am now 77 and cannot speak, eat barely swallow. I have a feeding tube. I can no longer hold my head up straight, but I can walk and use my arms..

Ginny

Member

December 26, 2024 at 4:15 pm in reply to: How do you deal with social gatherings?

I can no longer drive or even hold my head up straight, so I’m pretty much home bound.

Ginny

Member

November 29, 2024 at 10:31 am in reply to: How do you fill your cup on difficult days?

I was also diagnosed with Bulbar- onset in March. I can no longer speak or eat. I’m living on boost.

Ginny

Member

November 28, 2024 at 9:11 pm in reply to: How do you deal with social gatherings?

I don’t go…

Ginny

Member

November 28, 2024 at 8:58 pm in reply to: What do newly diagnosed ALS patients want to know?

My question were, how did I get it, is there a cure.

Ginny

Member

December 26, 2024 at 4:13 pm in reply to: How do you deal with social gatherings?

My sister visit when she can. She lives in Florida.

Ginny

Member

November 29, 2024 at 9:47 pm in reply to: ALS topics: What are you looking for?

I have bulbar-onset and do not see much of this type of ALS. Does it progress to other parts of the body and how fast??

Ginny

Member

July 8, 2024 at 11:02 am in reply to: What assistive device is helping you right now?

I have a respiratory, suction machine and also cough assist machine

Ginny

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