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Brad replied to the topic Caregivers Check in in the forum A Forum for ALS Caregivers 1 year, 6 months ago
My PALS was just formally diagnoses with Bulbar ALS back in mid summer, but it was suspected for almost a year now. Still fully ambulatory but with a PEG tube (unable to swallow anything), very difficult speech issues, and deteriorating respiratory system but with only NIV respirator. She still can walk level over 2 miles, quilts and reads…[Read more]
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Brad replied to the topic Rilozole experience? in the forum A Forum for ALS Caregivers 1 year, 7 months ago
My wife’s diagnosing neurologist prescribed rilozole immediately after diagnosis, 1 Tab 2X per day. On her first dose there was immediate dizziness, fatigue and facial numbness which required laying down. All those effects wore off about an hour later but repeated after each dose. Over the next several days, mucous seemed to increase and to…[Read more]
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Brad became a registered member 1 year, 8 months ago
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Hello Brad,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]
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Hello Brad, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
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Brad,
That is a beautiful post. Faith and love can definitely help people going on the ALS journey. You and your wife are very fortunate to have one another. Please keep us posted on how you are both doing. She does sound amazing!
Amanda