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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Colorful. Interesting. Outgoing. Cheerful. Sociable. Kind. Considerate. Fun loving. Laughs easily. Chally is all of these and more. Though he has ALS, ALS does not have him. He says ‘don’t sweat the small stuff…and it’s all small stuff!”   Meeting Chally in person for the first time went something like this:   Zipping down the […]

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Brigadier General Thomas R Mikolajcik was a strong advocate for people with ALS and veterans with ALS. He was particularly strong in his advocacy for ALS to be service connected for all veterans and for the government to engage in meaningful research. In 2007 this is, in part, his testimony in front of Congress regarding […]

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