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Tag Archives: ALS

From the day of diagnosis to May 1, 2018, this is how many days Amyotrophic Lateral Sclerosis, ALS, has been in our life. It is a lot of days. It is a long time. It feels like yesterday. It feels like time is on speed. The journey to a definitive diagnosis was a long time […]

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To some ‘on a whim’ translates to ‘let’s do it’ and it happens in the snap of the finger. To us it means, oh maybe, an hour or more to prepare, get the van loaded with everything. Everything is the painting gear – easel, tubes of paint, rags, tools – Tom and the wheelchair, Maddie […]

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*Summer of 2018 Hurricane Florence is the end of the garden as I know it. A huge tree fell on the fence, broke it, and destroyed the garden. We were lucky. Our house didn’t flood, a tree didn’t crash into the house, windows didn’t break, just the fence and garden. I would share a photo […]

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There are thousands of faces of Amyotrophic Lateral Sclerosis, ALS. They say as much as 20,000 at any given time; about 4,500 are veterans. This is one of them. He has ALS, and he is a veteran.* The mornings are slow moving. His hands are still though they are not paralyzed yet. They are difficult […]

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Help. It is the essence of the disease. Help me put my socks on. Help feed me. Help me shower. Help me get out of the house. Help me breath, help me, help me, help me, help me live. It is humbling beyond measure to be the person with ALS who must ask for all […]

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