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Carolyn Barry

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@carker

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  • Profile picture of Carolyn Barry

    Carolyn Barry replied to the topic What's the latest news on AMX0035? in the forum Research Topics 4 months, 1 week ago

    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.

  • Profile picture of Carolyn Barry

    Carolyn Barry replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 6 months, 2 weeks ago

    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]

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    Carolyn Barry replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 6 months, 3 weeks ago

    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]

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    Shannon Halstead and Profile picture of Carolyn BarryCarolyn Barry are now friends 6 months, 3 weeks ago

  • Profile picture of Carolyn Barry

    Carolyn Barry replied to the topic Carbon fiber vs plastic AFO in the forum Mobility Aides, Assistive Technology and Medical Equipment 7 months, 2 weeks ago

    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]

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    Carolyn Barry replied to the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 7 months, 3 weeks ago

    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]

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    Carolyn Barry replied to the topic What do you think of this new form of Radicava? in the forum Research Topics 8 months, 2 weeks ago

    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]

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    Susan and Profile picture of Carolyn BarryCarolyn Barry are now friends 9 months ago

  • Profile picture of Carolyn Barry

    Carolyn Barry replied to the topic A brand-new sub-forum: Let's discuss mobility, technology and medical equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 11 months, 3 weeks ago

    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]

  • Profile picture of Carolyn Barry

    Carolyn Barry replied to the topic Young man with suspected bulbar ALS – what on earth should I do now? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 11 months, 4 weeks ago

    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]

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    Carolyn Barry replied to the topic In Memory of My Cousin Bruce in the forum In Loving Memory 12 months ago

    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.

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    Carolyn Barry replied to the topic You're Not You in the forum ALS In The Media 1 year ago

    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.

  • Profile picture of Carolyn Barry

    Carolyn Barry replied to the topic Riluzole and Radicava in the forum Living With ALS 1 year, 2 months ago

    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.

  • Profile picture of Carolyn Barry

    Carolyn Barry replied to the topic Riluzole side effect in the forum Living With ALS 1 year, 3 months ago

    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

  • Profile picture of Carolyn Barry

    Carolyn Barry replied to the topic Clinic Visit Routine in the forum Living With ALS 1 year, 4 months ago

    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]

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    Carolyn Barry posted a new activity comment 1 year, 5 months ago

    I really feel for you, to be so incredibly limited has to be beyond difficult. I’ve read your blog, and you are a total inspiration to me. What gives you such strength? Your blog with such a wonderful way of expressing your thoughts, is a gift to anyone who reads it. You are in my prayers each day.

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    Carolyn Barry posted a new activity comment 1 year, 5 months ago

    Hi Jennifer, We used to love in NJ but we sold our house 2 years ago and moved to PA. Where in NJ do you live and who is your doctor for ALS?

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    • Profile picture of Jennifer Zink
      Jennifer Zink replied 1 year, 5 months ago

      In South Jersey. I don’t see my neurologist any more. Haven’t needed to. I have a doctor that makes house calls and he changes my trach & my feeding tube. I can’t move anything, except my head.

      • Profile picture of Carolyn Barry
        Carolyn Barry replied 1 year, 5 months ago

        I really feel for you, to be so incredibly limited has to be beyond difficult. I’ve read your blog, and you are a total inspiration to me. What gives you such strength? Your blog with such a wonderful way of expressing your thoughts, is a gift to anyone who reads it. You are in my prayers each day.

  • Profile picture of Carolyn Barry

    Carolyn Barry posted a new activity comment 1 year, 5 months ago

    Hi Jennifer. Thanks for sending me a friend request. I see you have many friends on this site……that is good! I read that you mentioned the ALS Association of Phladelphia. Do you live in or near Philly?

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    • Profile picture of Jennifer Zink
      Jennifer Zink replied 1 year, 5 months ago

      I live in New Jersey, so, I go the Philadelphia chapter. BTW, thank you for subscribing to my blog!

      • Profile picture of Carolyn Barry
        Carolyn Barry replied 1 year, 5 months ago

        Hi Jennifer, We used to love in NJ but we sold our house 2 years ago and moved to PA. Where in NJ do you live and who is your doctor for ALS?

        • Profile picture of Jennifer Zink
          Jennifer Zink replied 1 year, 5 months ago

          In South Jersey. I don’t see my neurologist any more. Haven’t needed to. I have a doctor that makes house calls and he changes my trach & my feeding tube. I can’t move anything, except my head.

          • Profile picture of Carolyn Barry
            Carolyn Barry replied 1 year, 5 months ago

            I really feel for you, to be so incredibly limited has to be beyond difficult. I’ve read your blog, and you are a total inspiration to me. What gives you such strength? Your blog with such a wonderful way of expressing your thoughts, is a gift to anyone who reads it. You are in my prayers each day.

  • Profile picture of Jennifer Zink

    Jennifer Zink and Profile picture of Carolyn BarryCarolyn Barry are now friends 1 year, 5 months ago

  • Profile picture of Carolyn Barry

    Carolyn Barry replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 1 year, 5 months ago

    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]

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