Carolyn Barry

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]

John, I liked what you do, wearing the dog tag with medical information on it. So I decided to take a look on Amazon, and ordered one. I was surprised at how many details I could have engraved in it, and I know it’ll be great to wear. Thanks for telling us what works for you, as I hadn’t thought of this before.

I started Radacava infusions at a clinic, at the end of December 2020.  My difficulty walking and with balance, which has existed since February 2020, has worsened some, but not a great amount.  I still feel extremely tired everyday, no matter how much sleep I get at night.  This does seem to be worse as time has passed.  It’s impossible to kno…[Read more]

I also meant to add that my balance and weakness in my legs seems to be a bit worse, though it could be due to problems with my left foot.  I don’t know where the cause of this is, as again, there are several factors involved.

Peter, this sounds somewhat similar to what I have been experiencing with my Radacava infusions.  I started them in December, and I’m feeling much more tired than ever before.  I can’t say that it is only during the 10 days of my treatment, as it’s how I feel all the time now.  I talked to the doctor at the clinic I go to for my infusions, and he…[Read more]

I was talking to my nurse at the Infusion Clinic yesterday, as I was getting my Radacava, and she had a very interesting thing to say.  We were talking about ALS and how it affects a person’s life.  We were talking about taking things one day at a time and how a positive attitude can only help, it would never hurt to have the best focus we c…[Read more]

I’ve been taking 400mg of Gabapentin since October.  My neurologist prescribed it specifically for the pain in my feet, which is not only caused by my ALS but the peripheral neuropathy in my feet is also a factor.  The pains had gotten severe enough to wake me up several times during the night.  I haven’t had any side effects whatsoever from th…[Read more]

I received my vaccine in February, under the 1A group, as I am 65 and my neurologist wrote a letter stating my ALS diagnosis and being someone at high risk for Covid.  I live in Warrington, PA and I decided to call the health department for my county, to explain my husband as being my caregiver, and hoping he could be vaccinated under 1A also.  I…[Read more]

I just saw my dermatologist and when she looked at my feet, with purple areas and ongoing coldness, she said I have Raynaud’s syndrome in my feet, as I do in my hands.  She said it is all due to the poor circulation in my feet, in addition to the neuropathy.  Thanks Kristine for mentioning the fact that compression boots help you, as I actually h…[Read more]

Thanks for sharing what works for you.  My feet are very cold most of the time, and are purplish in color often too.  I don’t have swelling very much luckily.  I also try to move them when I can, but I tried compression socks and had to give up wearing them.  I had too much trouble getting them on my feet, due to my poor leg and arm str…[Read more]

Thanks David, your words are very kind 🙂

Thanks Amanda, that would be great!

I do agree with you Nancy.  I am so grateful to have found this community to share with.  It has helped me a great deal, and in ways that I haven’t found elsewhere.  Your post was so inspiring, and absolutely wonderful to read!

Carolyn