Updated by Dr

Diagnosis addition: three speeds of ALS – fast progressing which normally starts in the upper body – not us! Slow progressing – which starts in the feet and is very slow in movement- not us either. Our ALS is fast but started […]

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Miracle drug or mystery

We just received this note: As you may have heard over the past 24 hours, phase 2 clinical trial results have shown that a new drug “slowed ALS progression in a statistically meaningful and clinically relevant way.” The ALS Association, which supported […]

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August 30,2020

The Journey continues. Spent a lot of time thinking this week about how we choose to live our time together. Celia announced that she has read a number of articles about survivors of ALS and the length of time they survive after […]

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August 23,2020

She told me 44 years ago that it’s until death do us part!! The anxiety and pain hit today and I imagine will hit again and again; “She is leaving me” not by choice nor by her own volition but it feels […]

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