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Dagmar Munn

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@dagmar-munn

Sharing my latest post on my ALS and Wellness Blog: “Surviving the Dentist with the New Normal of ALS” https://alsandwellness.blogspot.com/2022/06/surviving-dentist-with-new-normal-of-als.html View
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  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Are you celebrating anything special this summer? in the forum Living With ALS 3 days, 10 hours ago

    awwww…. what “A–Love-Story” indeed! Congratulations and best wishes to you both! When you two have tied the knot, be sure to tell us all the wonderful details of the happy day… and all about your trip to Europe!

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Are you celebrating anything special this summer? in the forum Living With ALS 3 days, 10 hours ago

    Congratulations Lisa! You certainly are having a lot of fun events right now (starring in a movie…daughter’s marriage…and maybe even more!) 🙂

  • Profile picture of Dagmar Munn

    Dagmar Munn posted a new activity comment 5 days, 6 hours ago

    Hello William,

    Welcome to the forum! I am one of the forum moderators and 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 typing a…[Read more]

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  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic In Memory of Rick Jobus in the forum In Loving Memory 5 days, 7 hours ago

    Here’s the beautiful Memoriam for Rick on the ALS News Today website:

    In Memoriam: Rick Jobus, Feb. 6, 1958-June 19, 2022

  • Profile picture of Dagmar Munn

    Dagmar Munn started the topic How Well Are You Sleeping? in the forum Living With ALS 5 days, 21 hours ago

    A study in 2019, came to the conclusion that newly diagnosed ALS patients didn’t sleep well. Duh! I think we all encountered sleep issues during those first months following our diagnosis of ALS; feelings of shock, trauma, worry, and fear. In addition, the ALS symptoms affecting our arms and legs required us to learn new ways to roll over (or r…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn started the topic In Memory of Rick Jobus in the forum In Loving Memory 6 days, 5 hours ago

    Sad news to share with the ALS community – – Rick Jobus, a columnist for ALS News Today, passed away on June 19, 2022.

    Rick was diagnosed with ALS in 2007 and for the past four years, wrote his patient column, “News From the ALS Front” for ALS News Today. In addition, Rick maintained the personal blog, “Kissmyals.blogspot.com.”

    A degreed…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn posted a new activity comment 6 days, 9 hours ago

    Hello Cynthia,

    Welcome to the forum! I am one of the forum moderators and 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 typing a…[Read more]

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  • Profile picture of Dagmar Munn

    Dagmar Munn posted a new activity comment 1 week, 2 days ago

    I have been taking Riluzole for 12 years now and so far, zero side effects. My doctor originally had me do labs every 3 months so she could check if it had any effect on my liver. Seeing none, I now do labs every 6 mos., which coincides with my clinic visits. I suggest you have another conversation with your doctor about it. Since you have no…[Read more]

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  • Profile picture of Dagmar Munn

    Dagmar Munn posted a new activity comment 1 week, 2 days ago

    hello Isabelle, I am glad that the CBD oil is helping you. Most ALS patients are taking one of the approved medications: Riluzole and/or Radicava. There is a lot of controversy about the benefits of supplements, some help, some don’t. ALS reversal is a topic of interest but no one has yet discovered how to replicate the ones who have done it.…[Read more]

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    • Profile picture of Isabelle
      Isabelle replied 1 week, 2 days ago

      My doctor is going to prescribe me riluzol but seems to be almost useless , and they want me to have blood tests everymonth because of the dangers of the medicine

      • Profile picture of Isabelle
        Isabelle replied 1 week, 2 days ago

        Radicava is not available in UK

      • Profile picture of Dagmar Munn
        Dagmar Munn replied 1 week, 2 days ago

        I have been taking Riluzole for 12 years now and so far, zero side effects. My doctor originally had me do labs every 3 months so she could check if it had any effect on my liver. Seeing none, I now do labs every 6 mos., which coincides with my clinic visits. I suggest you have another conversation with your doctor about it. Since you have no…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn posted a new activity comment 1 week, 2 days ago

    I know quite a few pALS who use (and love) their recumbent bikes. You’re in good company, for sure!

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  • Profile picture of Dagmar Munn

    Dagmar Munn posted a new activity comment 1 week, 2 days ago

    Congratulations Lisa! You certainly are having a lot of fun events right now (starring in a movie…daughter’s marriage…and maybe even more!) 🙂

    View Conversation
  • Profile picture of Dagmar Munn

    Dagmar Munn posted a new activity comment 1 week, 2 days ago

    awwww…. what “A–Love-Story” indeed! Congratulations and best wishes to you both! When you two have tied the knot, be sure to tell us all the wonderful details of the happy day… and your trip to Europe!

    View Conversation
  • Profile picture of Dagmar Munn

    Dagmar Munn posted a new activity comment 1 week, 2 days ago

    Hello Isabelle,

    Welcome to the forum! I am one of the forum moderators and 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 typing…[Read more]

    View Conversation
    • Profile picture of Isabelle
      Isabelle replied 1 week, 2 days ago

      I was diagnosed recently with speech difficulties , painful cramps and loss of strenght left hand , I intend to fight to delay the worse so been starting with supplements , so far CBD oil has improved a lot my symptoms , almost no cramps , no pain and sleeping better , also taking multivitamin, l serine , theracurmin and a few others , would like…[Read more]

      • Profile picture of Dagmar Munn
        Dagmar Munn replied 1 week, 2 days ago

        hello Isabelle, I am glad that the CBD oil is helping you. Most ALS patients are taking one of the approved medications: Riluzole and/or Radicava. There is a lot of controversy about the benefits of supplements, some help, some don’t. ALS reversal is a topic of interest but no one has yet discovered how to replicate the ones who have done it.…[Read more]

        • Profile picture of Isabelle
          Isabelle replied 1 week, 2 days ago

          My doctor is going to prescribe me riluzol but seems to be almost useless , and they want me to have blood tests everymonth because of the dangers of the medicine

          • Profile picture of Isabelle
            Isabelle replied 1 week, 2 days ago

            Radicava is not available in UK

          • Profile picture of Dagmar Munn
            Dagmar Munn replied 1 week, 2 days ago

            I have been taking Riluzole for 12 years now and so far, zero side effects. My doctor originally had me do labs every 3 months so she could check if it had any effect on my liver. Seeing none, I now do labs every 6 mos., which coincides with my clinic visits. I suggest you have another conversation with your doctor about it. Since you have no…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Are you celebrating anything special this summer? in the forum Living With ALS 1 week, 3 days ago

    Mary Kay – – Congratulations! May you have many ears ahead to continue celebrating with your husband and family!

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Are you celebrating anything special this summer? in the forum Living With ALS 1 week, 3 days ago

    This month of June – – I’m celebrating a milestone of having been writing my https://alsnewstoday.com/living-well-with-als-dagmar-munn/patient column for ALS News Today… for 5 years! It has been an honor to share my experiences with the ALS community!

    That’s around 209 articles! Who knew that there’d be that many topics to write about?!…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Carbon fiber vs plastic AFO in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 week, 3 days ago

    Sandra – – a couple of thoughts to share with you…

    I like the model your friend is using. I’ve seen it used by others with ALS and they report that it is sturdy and of help. However, it seems best for those who have only problems with their Anterior Tibialis muscle (that flexes the foot up). I have in addition to the weak Anterior Tibialis…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn posted a new activity comment 1 week, 3 days ago

    Hello Susana,

    Welcome to the forum! I am one of the forum moderators and 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 typing a…[Read more]

    View Conversation
  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic ALS Awareness and Wellbeing in the forum ALS Awareness and Advocacy 1 week, 5 days ago

    I don’t put much faith in “crowdsourcing” treatments. Especially if you have no idea if the others are real or fake patients. Plus, there is no medical oversight.

  • Profile picture of Dagmar Munn

    Dagmar Munn started the topic Are you celebrating anything special this summer? in the forum Living With ALS 1 week, 5 days ago

    This could be birthdays, anniversaries, health and/or personal milestones…literally, anything.

    Let us know so we can celebrate with you!

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Carbon fiber vs plastic AFO in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 weeks ago

    Sandra, I have been using AFOs for 10 yrs now. Mine are polypropylene. I have a photo of them on this blog post: https://alsandwellness.blogspot.com/2021/03/how-i-learned-to-like-my-afos.html
    And yes, they are clunky. They feel like I’m walking in ski boots or snowshoe boots. I guess it’s due to the nature of correcting “drop foot” that they feel…[Read more]

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