[Jon Carlin]

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 are new developments all the time with the hope that one or more of these developments will slow down or reverse the disease. My partner’s disease progressed rapidly which does not occur with many ALS patients that we met at group sessions. Some patients were going strong after 10 years. Keep strong mentally and physically and use all available resources to slow disease progression. The cause of ALS may still be a mystery but treatment to slow and reverse muscle deterioration will happen just as sure as polio and other serious diseases were prevented years ago. Never give up but try to be at peace and stay confident. You have many friends that have hope and pray for each person with ALS.

[Jon Carlin]

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 differently. The port was routine with no discomfort.