Jon Carlin replied to the topic Once bulbar symptoms occur…. in the forum Living With ALS 3 years, 2 months ago
Everyone is different. My partner, for whom I was caregiver, lost strength in her hands first and was diagnosed around March 2017 with ALS. She took Radicava infusions for more than a year with hopes this would slow progression. She was 76 when diagnosed and did not want a feeding tube (recommended by her neurologist) or intubation. Today there…[Read more]
Jon Carlin replied to the topic Radicava? – – What advice, comments or tips do you have? in the forum Living With ALS 3 years, 3 months ago
I was the sole caregiver for my 76 year old partner who was on Radicava for more than one year. The regime calls for infusions 5 days a week for two weeks. Two weeks off and then resume. Depending on scheduling determines if it would interfere with work.
We didn’t find Radicava particularly helpful but then everyone is different and reacts…[Read more]
Jon Carlin became a registered member 3 years, 3 months ago
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. If you have any questions, concerns or even…[Read more]
Hello Jon, 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]