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Maryann

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@malinct

Anyone have opinions on best mobility scooters? View
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  • Profile picture of Maryann

    Maryann replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 1 week, 2 days ago

    Lynn,

    I feel wobbly when I take the radicava. I keep a journal each month and my movement is worse during the 10 days on cycle

  • Profile picture of Maryann

    Maryann replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 1 week, 3 days ago

    Lynn

    I mix relyvrio with warm water. Mix it really well and let it sit 15 min or so to dissolve, then drink it down with a straw. It’s tolerable if it’s mixed well.

  • Profile picture of Maryann

    Maryann replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 1 week, 4 days ago

    No worries. Thank you

  • Profile picture of Maryann

    Maryann replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 1 week, 5 days ago

    The Riluzole was approved right away. Radicava was approved with 2 or 3 weeks. Relyvrio my insurance denied and I received it for free through Amylyxx manufacturer while the appeal process took place. It took a few months for it to ultimately be approved.

  • Profile picture of Maryann

    Maryann replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 1 week, 5 days ago

    Thank you. It’s for me though not my husband.  I will let you know how things go.

    Maryann

  • Profile picture of Maryann

    Maryann replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 2 weeks ago

    Joan

    How do you feel on regimen f. I take riluzole, radicava and relyvrio and I started regimen f 4/25.  Do you notice any changes with regimen f?

  • Profile picture of Maryann

    Maryann posted an update 2 weeks, 1 day ago

    Anyone have opinions on best mobility scooters?

  • Profile picture of Maryann

    Maryann replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 3 weeks, 1 day ago

    I take Riluzole, Radicava, RELYVRIO and 2 weeks ago I started Healey Platform regimen f (Abbv 7262)  – hoping I am on the drug and not the placebo but it’s 3 to 1 so I’m hopeful.   I notice I am more wobbly when I take the Radicava 10 days out if the month.

  • Profile picture of Maryann

    Maryann posted an update 3 weeks, 1 day ago

    I have been stretching, exercising trying to keep my mobility. I use a rollator and I have a carbon fiber afo for my left leg (drop foot). My left hip has gotten weaker. I ordered a rebounder to see If I could get any strength back to help my gait. Dagmar – the rebounder you have is no longer made. Anyone else have success building hip strength?

  • Profile picture of Maryann

    Maryann posted a new activity comment 3 weeks, 3 days ago

    Hi Diane
    I stretch everyday, do pt excercises, sometimes chair yoga. I think it does help. I do notice if I over do things I feel more tired and if I skip stretching my movements are worse.

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  • Profile picture of Maryann

    Maryann posted a new activity comment 1 month ago

    Thank you. I read your blogs and it helps me tremendously Dagmar!
    I skipped out on my leg excercises last night after telling my husband I needed to do them. This morning my left leg was worse. Hip and lifting the leg was more difficult. Still having trouble getting up from the floor. But I did my leg excercises this morning and 2 squats!

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    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 month ago

      Yes, Maryann… isn’t it strange how quickly our ALS-bodies can weaken from missing even just one day. I’m proud of you for doing 2 squats – – I encourage you to do 2 every day this week. Then next week, do 3 🙂 I’m also proud of you for being able to get onto the floor – – do you use a chair for that too?

      Here is a YouTube site that I follow.…[Read more]

  • Profile picture of Maryann

    Maryann posted a new activity comment 1 month, 1 week ago

    Hi Dagmar
    I was diagnosed with ALS in December 2022. I was very active prior to symptom onset ( foot drop, hand weakness) August 2022. I am trying to do daily excercises to keep my body moving. Any suggestions on how to help strengthen the body to get up off the floor after exercising? I am doing rocking and practicing rolling over.

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    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 month, 1 week ago

      Hi Maryann, it’s so good to hear that you are exercising! I’ve found the best – – and safest way to get up off the floor is to use a chair. (I still do) Just using will help build your strength as well. I recommend a sturdy chair with arms. Here are 2 videos showing different methods,…[Read more]

      • Profile picture of Maryann
        Maryann replied 1 month ago

        Thank you. I read your blogs and it helps me tremendously Dagmar!
        I skipped out on my leg excercises last night after telling my husband I needed to do them. This morning my left leg was worse. Hip and lifting the leg was more difficult. Still having trouble getting up from the floor. But I did my leg excercises this morning and 2 squats!

        • Profile picture of Dagmar Munn
          Dagmar Munn replied 1 month ago

          Yes, Maryann… isn’t it strange how quickly our ALS-bodies can weaken from missing even just one day. I’m proud of you for doing 2 squats – – I encourage you to do 2 every day this week. Then next week, do 3 🙂 I’m also proud of you for being able to get onto the floor – – do you use a chair for that too?

          Here is a YouTube site that I follow.…[Read more]

  • Profile picture of Maryann

    Maryann became a registered member 1 month, 1 week ago

    • Profile picture of Amanda
      Amanda replied 1 month, 1 week ago

      Hi Maryann,
      Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

      We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 month, 1 week ago

      Hello Maryann,

      Welcome to the forum! I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by…[Read more]

      • Profile picture of Maryann
        Maryann replied 1 month, 1 week ago

        Hi Dagmar
        I was diagnosed with ALS in December 2022. I was very active prior to symptom onset ( foot drop, hand weakness) August 2022. I am trying to do daily excercises to keep my body moving. Any suggestions on how to help strengthen the body to get up off the floor after exercising? I am doing rocking and practicing rolling over.

        • Profile picture of Dagmar Munn
          Dagmar Munn replied 1 month, 1 week ago

          Hi Maryann, it’s so good to hear that you are exercising! I’ve found the best – – and safest way to get up off the floor is to use a chair. (I still do) Just using will help build your strength as well. I recommend a sturdy chair with arms. Here are 2 videos showing different methods,…[Read more]

          • Profile picture of Maryann
            Maryann replied 1 month ago

            Thank you. I read your blogs and it helps me tremendously Dagmar!
            I skipped out on my leg excercises last night after telling my husband I needed to do them. This morning my left leg was worse. Hip and lifting the leg was more difficult. Still having trouble getting up from the floor. But I did my leg excercises this morning and 2 squats!

            • Profile picture of Dagmar Munn
              Dagmar Munn replied 1 month ago

              Yes, Maryann… isn’t it strange how quickly our ALS-bodies can weaken from missing even just one day. I’m proud of you for doing 2 squats – – I encourage you to do 2 every day this week. Then next week, do 3 🙂 I’m also proud of you for being able to get onto the floor – – do you use a chair for that too?

              Here is a YouTube site that I follow.…[Read more]

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