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Clint Williams replied to the topic How Do you Decide What Medical Interventions are Acceptable? in the forum Living With ALS 4 months, 2 weeks ago
This is a great question. I’m sure one size doesn’t fit all. I’ve been diagnosed with bulbar onset for over a year with over 2 years of symptoms. We’re trying all the meds, but I can still sense the progressing symptoms. So far, I’ve only looked at my prior directive and it still seems valid, but times are a changing. I’m watching my step-father…[Read more]
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Clint Williams replied to the topic Volunteering to participate in ALS research: what are your pros and cons? in the forum Research Topics 5 months ago
My goal for any trial is to first utilize the best available medicines, then join a trial that is targeted at my type of ALS (Bulbar). Why the University Doctors are more concerned about the “purity” of their guinea pigs is beyond me – it’s a big ask to stop taking something that prolongs your life for the betterment of mankind. In fact, UCSD ALS…[Read more]
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Clint Williams replied to the topic Volunteering to participate in ALS research: what are your pros and cons? in the forum Research Topics 5 months ago
RadicavaORS is commercially available, but at a cost$$. There are copay assistance programs from the manufacturer and others, and commercial insurance offers good coverage in my case.
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Clint Williams became a registered member 6 months ago
Hello Clint,
Welcome to the forum! I am one of the forum moderators and a person 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 discussions by typing a…[Read more]
Hello Clint,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!
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 h…[Read more]