Carolyn Barry

I would try it if it were affordable. I highly doubt that it would be, just like how oral Radacava turned out, once it was approved.  It is so wrong for these drug companies to not help ALS patients with the super high cost of their drugs.

Hi Doug, I appreciate your thoughts and it helps me to feel not so alone in these types of situations with friends and family.  I have always been the kind of person who likes to fully explain to others when I can’t do what they would like me to do, but I find that it’s best if I keep it to a few simple words.  Then it seems they do understand, k…[Read more]

Though I enjoy visits from friends, I do get very tired simply by talking and sitting.  I find myself committing to visits when I know I have a specific reason to cut it short, such as days with doctors’ appointments, or my infusions.  I am totally unable to comfortably have a visit with open ended timing.  I do find that friends are very un…[Read more]

I was originally fitted with standard carbon fiber AFO’s, ‘right off the shelf’ as they were described to me. Since I hadn’t even been diagnosed yet, and didn’t have a clue as to what I needed or wanted, I agreed. Within a few months I had significant sores on the sides of my feet from the part that was on the outer portion of my foot and…[Read more]

Guy, I can relate to what you said, in that I too, have struggled with now needing to depend on someone who thinks differently than I do, and doesn’t see things in the way that I do. I admit I am a particular person, and have always had the “luxury” of doing things around the house, as well as things for me, in the way that I want to. But now,…[Read more]

I too have been on Radacava infusions for about 18 months.  I have had no side effects whatsoever, and had a port placed back in September.  I was very happy that the oral formulation of Radacava was approved by the FDA, though my anticipation of actually being able to switch to this was short lived.  I am very fortunate that my infusions are co…[Read more]

I bought a rollator on Amazon and it makes my walking so much easier and safer. It is the Momentum Rollator, made by Medline. What I like most about it is that it is narrower than most other rollators, so it’s great going through doorways. It is lightweight, easy to fold, and rolls very easily over any type of surface. I’ve used 2 other ones and…[Read more]

Will, I truly hope that you can soon find someone to help you with a diagnosis. For me, it took 3 hospitals, a 2 month inpatient stay, several neurologists and many tests and specialists. Finally, a neuromuscular specialist, while doing my 3rd EMG, and just a few minutes into the test, said she had a definite diagnosis for me. That was when I…[Read more]

Amanda, my heart goes out to you with another great loss…..your cousin sounds like a very special person. You will be in my prayers.

I have not seen this movie, and I purposely avoid any movie which is about someone who has ALS.  I find it too difficult as it would give me a greater worry about my future, and what I might be like, as the disease progresses.

I’ve been on both for about a year. Fortunately I am not rapidly progressing and have been fairly stable. I was diagnosed a year ago and began both treatments pretty quickly.

I’ve been on Riluzole for a year now and I have had no side effects at any point. I hope you can begin to feel better soon.
Carolyn

Marianne, I really do appreciate you telling us about your care with hospice, as I had no idea that a person with ALS could receive that form of care.  This sounds very good, and just the kind of care that would be needed.  I really feel for you with all you are facing each day, and I will continue to pray for you.  Mark, it helps to hear your th…[Read more]

Tom,

Possibly my regimen A drug, the Zilucoplan allows for a longer open label extension.  I actually asked about this at my recent research appointment and I was told I could be on it for 1 year, for the open label.  I wanted to know if after the year is over, whether or not I could extend that time.  The coordinator told me that it’s po…[Read more]