I am Edward Belair

living with ALS


I'm doing everything I can.

I was a 70 years old in very good health. Very active. 8th July 2022 got bitten by a tick — bad rash but Lyme was negative.

1 month later I was unable to even walk my dog.

It took until August/September of 2023 to get the dreaded diagnosis of ALS. (Over this year’s time, increased trouble breathing and increased muscle wasting and weakness). Now on bi- pap machine 18 -19 hours a day.

I’m doing everything I can.
I’m on retirement and receive Social security Medicare health insurance.
Medicare will not pay for Radicava.

How can I afford this?
I want / need it.
How are others affording your medications to prolong your life !!??

I’m a Fighter ! Not ready to give Up !! 😀

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