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NANDHINI

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@nandhni20

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  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 day, 9 hours ago

    Mary Jo, …range of motion exercises, every day! Bravo!

  • Profile picture of Dagmar Munn

    Dagmar Munn started the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 day, 23 hours ago

    Many people do not understand why physical therapy (PT) can help people with ALS because it is a progressive disease. While physical therapy cannot halt the inevitable loss of muscle strength, PT can be of support for people with ALS – – helping them maintain whatever independent function they are capable of, at different points throughout the…[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 6 days, 11 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 6 days, 11 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 replied to the topic In Memory of Rick Jobus in the forum In Loving Memory 1 week, 1 day 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 1 week, 1 day 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, 2 days 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 replied to the topic Are you celebrating anything special this summer? in the forum Living With ALS 1 week, 6 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, 6 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, 6 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 2 weeks, 1 day 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 2 weeks, 1 day 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, 3 days 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]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 2 weeks, 3 days ago

    Lynn, (and interested pALS) “getting up from a chair” used to be a huge effort (and often impossible) for me too. Interestingly, I challenged myself to strengthen my leg muscles by doing 1 or 2 air squats every day. I thought if my muscles didn’t respond, I wouldn’t be any worse off.

    That was 3 years ago, and I’m up to doing 40 chair squats/day -…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn started the topic Let’s discuss the potential ALS treatment Tofersen (B11B067) in the forum Research Topics 2 weeks, 4 days ago

    Tofersen is an investigational drug also known as BIIB067. It is an antisense oligoneucleotide (ASO) targeting SOD1. Mutations in the SOD1 gene appear in about 12-20 percent of people with familial ALS and 1-2 percent of people with sporadic (or singleton) ALS.

    Among the ongoing clinical trials being conducted for possible ALS treatments,…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn posted an update 2 weeks, 6 days ago

    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

  • Profile picture of Dagmar Munn

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

    Those are interesting observations Chris. Question – – have you considered daily gentle exercise to help prevent muscle atrophy. Like chair exercises or doing them on your bed mattress? Even having someone help you with passive range of motion movements can be of help.

  • Profile picture of Dagmar Munn

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

    Yes, I miss being able to take off running too. Interestingly, I use a rebounder to walk in place… once in a while I go a little faster (soggy jog!) and it “feels” like I’m running.

  • Profile picture of Dagmar Munn

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

    Yes, gulping down a glass of water. For a long time, I had yearnings to drink 7-up. Missed that tart fizzy taste 😉

  • Profile picture of Dagmar Munn

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

    I agree Maggie. It was hard for me to always ask others “please, can you help me do…?” But I’ve since found that others really want to help and feel good that they did.

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