Liz

Financially has been the biggest challenge. When my husband’s ALS advanced to where he could no longer work, we lost his income and we lost my income. As full time caregiver at home, I slept in 2 hour shifts so that I could give him breathing treatments and whatever else he needed. We are so grateful for every moment we had with him at home even t…[Read more]

My husband had bulbar onset.
He had slowed speech at first.  In the early years of the diagnosis process, they originally thought he had Lyme tick disease.   He did but that only delayed the ultimate diagnosis of ALS.
He had difficulty swallowing.
After dropping in excess of 60 lbs, he  got the feeding tube placed in his stomach. Afterwards, he…[Read more]

I would be very interested to hear if anyone has tried this

My husband has been taking Riluzole for 7 years. He has had no bad side effects at all and I believe it has prolonged his life.

He takes it twice a day.

The neurologist for my husband recommends it for all her ALS patients.

I am glad our prescription insurance covers it.

Today my husband finished Day 3 of this round of IV Radicava. He felt better after the treatment. On the 10 days a month he receives Radicava, he always feels better than the days without Radicava. We joke around and call it Liquid Gold….the good stuff!

Did you inquire further regarding his reasons for not recommending the treatment?  Efficacy? Safety? I have seen firsthand the benefits of the treatment so I would be curious as to why he does not recommend it.

Radicava days make him feel better

My husband has been receiving Radicava IV infusions at home since May of 2018.  It always makes him feel better and he usually experiences a little “bounce back” on the days receives the infusions. We still do the infusions regularly.

<b>Staying employed with ALS </b>

He has had ALS for around 6 or 7 years…[Read more]