Life with ALS: A Caregivers Perspective

Hal at Ellwood, March 25, 2010


August 5, 2009. A date that will stay in my memory forever. Exactly one week after Hal and I celebrated our 30th Wedding Anniversary. The day we found out. Hal has ALS.

ALS. Amyotophic Lateral Sclerosis. Better know in the United States as Lou Gehrig’s disease. Progressive, permanent breakdown of motor neurons – the nerve cells that control muscles – the one that allow you to walk, use your hands and arms, move your head, talk, swallow, and breath -resulting in increasing weakness, paralysis, and eventually death. There is no cure. There is no effective way to slow the progression down. People with ALS refer to themselves as “PALS”. They must learn to accept and deal with continuous, progressive losses. Handling the issues that come up. Enjoying what movement they have because they will lose it. Soon.

And their caregivers (in Hal’s case, that’s me) must learn to grow up. To see life differently. To appreciate every day, every minute they have with their PALS.

Since Hal’s diagnosis, my life has changed. Forever. I am going to try to record some my experiences as I continue my journey through life. A life irrevocably changed by ALS.

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Responses

  1. Fran,

    I couldn’t find an e-mail for you, so I hope this e-mail reaches you.

    I’ve heard your name several times during the last 6 weeks and wanted to contact you. My life partner has muscular dystrophy and got a trach about 4 weeks ago. It’s been a rough time…He is in subacute and hates it. I’m trying to get him back on the computer and we are exploring alternative pointing devices.

    Is there any way I could meet with you (or the group you are leading.)

    A


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