Gwen McMartin
Forum Replies Created
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This book looks interesting. I recommend “Learning to Fall” by Philip Simmons. A collection of essays by the author who had ALS focusing on life and death in general. He passed in 2002 the year it was published.
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It seems that there is no reason to delay approving this drug/compound for pALS when there are few choices out there for effective treatment. Yes, I would definitely seek out Albrioza treatment when I am able. I am currently in the Courage ALS Reldesemtiv trial. We need as many options as we can get!
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This is wonderful! The more exposure ALS & MND have in the world the better! Increasing awareness & then support for research is crucial.
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Hi Dagmar, I am recently diagnosed (bout a month) and am new to the ALS News Today Forum. I have “limb onset”-in my legs, wearing AFO braces for foot drop, using a cane or walker depending on how much walking I am doing.
I’m still trying to get a handle on this disease and how it affects people so differently. Had my first “Clinic Team” appt last week so the speed of my progression has not been determined, though I think it is slow, hopefully. I am being treated by an ALS neurologist in Portland OR with a great supporting staff. I did take Riluzole for 9 days-with nausea and then vomiting, so stopped taking it. Am still on the fence re: Radicava-will decide in January-guess I have a general aversion to drugs with side effects. Will also be going to an acupuncturist.
I am busy packing, getting my house ready to sell, going to appts etc. I SO appreciate this website and forum since friends and family are helpful, empathetic but can’t relate. Thank you so much!
Gwen