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Peter Powell

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@peter-pd

Hi, Has anyone heard of the products Leapto be fit and L-Serine? Just wondering if they offer anything, or just another scam type products? View
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  • Profile picture of Amanda

    Amanda started the topic Independence Day!! in the forum Living With ALS 9 hours, 56 minutes ago

    Eighty-three years ago Lou Gehrig, the beloved Yankee, said goodbye to the game and called himself “the luckiest man on the face of the earth” on this day. Today, many pALs face trying to maintain their independence as long as possible, using things like adaptive technology, communication devices, and home modifications.

    Are there more things…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic In Memory of Rick Jobus in the forum In Loving Memory 3 days, 23 hours ago

    My sister arrived this week and we were roaming around South Florida the past four days.  The end of the school year is always crazy, and this year has been no exception. I just finished because my year was so busy it was extended by three weeks.  Some how I missed this news until I popped on to check in. I’ve been popping on to try and keep up t…[Read more]

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    Dagmar Munn replied to the topic Are you celebrating anything special this summer? in the forum Living With ALS 4 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 4 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 Amanda

    Amanda replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 5 days, 11 hours ago

    It’s crack how money drives so much!

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic In Memory of Rick Jobus in the forum In Loving Memory 6 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 6 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 1 week 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 Amanda

    Amanda started the topic Would you seek out Albrioza treatment? in the forum Research Topics 1 week, 3 days ago

    Are we making progress? Canada just approved Albrioza (AMX0035) with conditions for treatment of ALS. This conditional approval requires the pharmaceutical company to continue to gather and provide evidence that the treatment works.
    In the United States, the FDA found that Albrioza was safe; however, said it was lacking sufficient evidence…[Read more]

  • Profile picture of Amanda

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

    Congratulations!!

  • Profile picture of Amanda

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

    Mary Kay, we share a birth date!! I turned 55 on Flag Day!

  • Profile picture of Amanda

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

    Whoot Whoot!!

  • 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, 4 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, 4 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, 4 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 replied to the topic ALS Awareness and Wellbeing in the forum ALS Awareness and Advocacy 1 week, 6 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 Amanda

    Amanda replied to the topic Let’s discuss the potential ALS treatment Tofersen (B11B067) in the forum Research Topics 1 week, 6 days ago

    My family has the SOD1 mutation which I also inherited. The Pre-fALS study that I participate in also contributes to this study and many of the participants were in the clinical trials. I’ve been told that as soon as I show significant enough symptoms that I will be a candidate. Irom what I’ve read and from what the researchers have told me,…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 1 week, 6 days ago

    @Kathy,

    Your post is touching and expresses raw emotions that I believe most pALS experience and some may have a difficult time discussing. You are brave and your contributions on the forum are insightful. Thank you for being able to express yourself and to encourage others when you can.

    Amanda

  • 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, 6 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 Amanda

    Amanda started the topic Learning to LIVE with ALS in the forum Living With ALS 2 weeks ago

    When you first learn that you have ALS or MND, the diagnosis is overwhelming! It is way too easy to let fear and depression set in, understandably. Where oh where does a newly diagnosed pALS begin learning how to LIVE with ALS? Here are a few suggestions:
    Take Time to Adjust! Being diagnosed with ALS is nothing less than shocking and scary!
    Be…[Read more]

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