Tom Hehir

Hi Marianne and Richard,

Thanks for your responses. I have always been a physically active person, swimming, skiing, hiking, and biking. I miss this terribly.  However, I do not have a choice with my ALS. The choice I do have is to live life as best I can. Spending more time with loved ones is a gift.

Tom

For me quality is not defined by whether you need a wheel chair or breathing assistance. I have worked in the disability  field for most of my life and maybe that helped. I have friends who have used wheel chairs or communication devices their entire life. They have had full lives.

When I was diagnosed last August, I went through a period of…[Read more]

Hi Folks,

I live in Mass. and have ALS. I am 70 years old and cannot get vaccinated. I have contacted MGH, my primary care provider, and the state Dept of Public Health. It seems that ALS is not a priority here. By the way, I have a friend who works in billing in a hospital who is a healthy 30 year old. He works remotely and has not been in the…[Read more]

I’d like to respond to those with sleep issues. I too had them. I couldn’t sleep more than an hour at a time. I was exhausted all the time. I got a bi-pap when my vital capacity went into the 50s. After getting the bi-pap I got great sleep, felt much stronger and my vital capacity went up to the 70s. Though I still have weakness in my legs and…[Read more]

I definitely plan to get it as soon as possible and hope my partner can as well.

Hi All,

Most people I know and my family knew a good deal about ALS. Some had done the ice bucket challenge and others are medical professionals. The thing that was difficult for me was how difficult the diagnosis was for them. Some broke down as I told them, making it difficult for me. I started emailing and texting people so their initial…[Read more]