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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The Journey Aug 21,2020

“The Journey” is being transformed into a blog for those of you who are interested in learning more about our progress through the world of ALS. The purpose is to build awareness of the disease that is destroying lives and families but […]

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