I have a new moniker for Steve L., one of my four brother-in-laws with the same first name. Now he’s Ramp Man to me. He drove to the Cape from Connecticut fully loaded: Boston Whaler packed with bikes, folding tables, life jackets, power tools, and reclining chairs...
The subject line read, “Just diagnosed with AMN.” Aaron from Auburn found my blog. He went on to tell me about his initial symptoms with our condition. He wrote about his family, his faith, and his fears. We shared an uncertain future and the same area code. Would I...
On my birthday, many years ago, I remember one particular pronouncement from one particular neurologist, “This won’t kill you,” this being my condition, Adrenomyeloneuropathy. The delivery was brusque but honest. Hearing it was a relief at the time. It moved me from...
It passed without notice, July 1st, the anniversary of my formal diagnosis that gave my increasing mobility problems and troubling physical symptoms a whopper of a name. Adrenomyeloneuropathy. Does this moment deserve notice? I’m ambivalent. It wasn’t a...
A wheel that folds. Why would you want a wheel that folds? If you sit where I sit, why wouldn’t you? From process to product, I love everything about MORPH folding wheels, especially after handling them today. This invention hinges upon advocacy. Duncan...
My first dear Corgi, Vippy, was a yearling when I was diagnosed with Adrenomyloneuropathy in 1996. Walks with him were slow affairs. Partly because he was seriously sniffy and a bit of a garbage mouth. Partly because I was dragging myself in those early days of my...
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