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Tom Hehir

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@tomhehir

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    Tom Hehir replied to the topic ALS Life Expectancy vs. Quality Of Life in the forum Living With ALS 1 year, 4 months ago

    Richard,

    So well said.

    Thank you,

    Tom

  • Profile picture of Tom Hehir

    Tom Hehir replied to the topic ALS Life Expectancy vs. Quality Of Life in the forum Living With ALS 1 year, 4 months ago

    Dagma,

    Your writing has meant so much to me.

    Thank you,

    Tom

  • Profile picture of Tom Hehir

    Tom Hehir replied to the topic ALS Life Expectancy vs. Quality Of Life in the forum Living With ALS 1 year, 4 months ago

    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

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    Tom Hehir replied to the topic ALS Life Expectancy vs. Quality Of Life in the forum Living With ALS 1 year, 4 months ago

    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]

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    Tom Hehir replied to the topic Has your State made the COVID-19 Vaccine available to pALS and caregivers? in the forum Coronavirus (COVID-19) and ALS 1 year, 6 months ago

    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]

    • Profile picture of Amanda
      Amanda replied 1 year, 6 months ago

      That just doesn’t seem right to me. Don’t you qualify for being over 65?

  • Profile picture of Tom Hehir

    Tom Hehir replied to the topic Asking for Support in the forum Living With ALS 1 year, 7 months ago

    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]

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    Tom Hehir replied to the topic Vaccine on the horizon in the forum Coronavirus (COVID-19) and ALS 1 year, 7 months ago

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

     

  • Profile picture of Tom Hehir

    Tom Hehir replied to the topic Asking for Support in the forum Living With ALS 1 year, 7 months ago

    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]

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    Tom Hehir posted a new activity comment 1 year, 8 months ago

    Thanks Amanda. I’ve been impressed reading the posts. Sorry for all of your loss.

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    Tom Hehir posted a new activity comment 1 year, 8 months ago

    Thanks Dagmar. I’ve been impressed reading the posts.

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    Tom Hehir became a registered member 1 year, 8 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 8 months ago

      Hello Tom,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]

      • Profile picture of Tom Hehir
        Tom Hehir replied 1 year, 8 months ago

        Thanks Dagmar. I’ve been impressed reading the posts.

    • Profile picture of Amanda
      Amanda replied 1 year, 8 months ago

      Hello Tom, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]

      • Profile picture of Tom Hehir
        Tom Hehir replied 1 year, 8 months ago

        Thanks Amanda. I’ve been impressed reading the posts. Sorry for all of your loss.

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