Carolyn Barry

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]

Trevor,

Could you possibly explain what it is that your tests showed, to give you the diagnosis of an alternate form of ALS?  I’ve never heard of this and I’m interested as to how your doctor came to that conclusion.  How did you feel when you were given this diagnosis, which sounds quite different from ALS as we all know it?

I am soon to complete the 6 month Healey Platform Trial, and I’ll begin open label, the actual drug, in September.  I’ve been on Zilucoplan, which is an injection I give myself each morning.  My doctor thinks I might be on the drug itself and not a placebo, since my ALS has not been rapidly progressing. She did say that since I am also taking R…[Read more]

I will also add that even though my legs and feet feel much stronger, when my AFO’s are on, I still am dependent on my rollator to walk safely.  I too have foot drop in both of my feet.

I was fitted with AFO’s last June, before I was diagnosed.  I’ve been wearing them since, and I will say that without them I would not nearly be as stable.  As my legs have gotten weaker, I find that having the AFO’s on makes me feel like my legs are as strong as ever.  Walking is much easier, and I feel much more capable all-around.  I do wal…[Read more]

I think having the windows open and feeling the warm air come in from outside definitely lightens my spirits.  I can’t manage walking outside by myself, so it helps me feel as if I am sort of outside!  Walking in the ice and snow with my AFO’s and my walker is certainly a bit of a challenge.  Once I got a rollator for leaving the house, I found it…[Read more]

Hi Amanda ~ I was wondering if I could post a topic asking if anyone has had experience with having a company install a stair glide in their home.  I have no idea what company is good, yet not overly expensive.  I’m not in need of it yet, but I know I should start getting estimates from several companies, before making a decision as to who to go w…[Read more]

Len, I really like your outlook and wonderful perspective!  You have clearly shown how we all have the ability to deal with our ALS and all the limitations it brings to our lives, and turn it into a positive.  Your thoughts and how you feel joy with your grandchildren despite your speech difficulties reminds me of how I can no longer pick up my g…[Read more]

I was told the same thing, so home infusion was not a possibility for me.  Though I also was approved for a grant, it did not nearly cover the costs.  Medicare pays a large portion of my costs at an Infusion clinic.

Thanks for your prayers Russell, they mean everything.  I don’t have twitches anywhere yet.  I have mostly felt weakness and imbalance in several areas.  Honestly, if it were me in your shoes, I would go to the ALS clinic if they agreed to see me.  I think I’d see it as it can’t hurt, and it would be a way of having those who are experts in the…[Read more]

I started with a fall, where my legs just buckled.  It wasn’t like I lost my balance or tripped.  My legs just gave out.  I then noticed my gait wasn’t quite right, and as I was walking into a store, I just felt I wasn’t walking as I usually did.  I was always a very active person, rarely sitting down, always up and doing something, so this did…[Read more]

Russell, I think what’s most important here is that only you, the person feeling all of these things, can truly know that something is off.  I know that others have our best interest at heart, and are only trying to help, but what you feel is real.  I think it’s possible to have all of these issues going on at once.  We all know our bodies so we…[Read more]

Russell, my heart goes out to you with what you are feeling and going through.  The time of waiting, seeing the changes in our body, going for tests and exams, hoping and praying for answers, answering everyone’s questions, just takes an enormous toll.  We share a birthday month, as I turned 66 on May 2nd.  I don’t even like thinking back to my bi…[Read more]

Thank you Amanda for sharing all you did.  My heart goes out to you, and I am so grateful for you.  You have given endlessly of yourself for all of us members on these forums.  You’ll continue to be in my prayers.

I’ve been on the Healey Platform Trial for close to a month, randomized to Regimen A, Zilucoplan. It’s a daily injection, which I find challenging, but I’m getting used to it. I’m grateful for being accepted, and haven’t had any change in my function, plus no side effects.  I did opt to have the first of two spinal taps. For no obvious reason, I…[Read more]