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Lowell Stewart

Home Members Lowell Stewart
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@bigship22

In reading the article about delayed diagnosis I’m prompted to tell my story. I had a bulbar onset that was so minimal that when I had my annual physical in April 2018 I forgot to mention it to my PCP. In October 2018 when I had continuing problems with speech, and fasciculations in my thighs, I contacted the ALS Center and saw a neurologist […] View
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  • Profile picture of Dagmar Munn

    Dagmar Munn started the topic Do You Think You Match the Results of this ALS Survey? in the forum Living With ALS 3 weeks, 4 days ago

    In February, ALS News Today reported the results of an online survey that I found very interesting. Of the 290 U.S. residents who completed the survey, over two-thirds (200) of them were people living with ALS or answering on behalf of someone with the disease. More than half (63.54%) of 181 patients responding reported having sporadic ALS, and…[Read more]

  • Profile picture of Amanda

    Amanda started the topic ALS Awareness Month…We Need You to get involved. in the forum ALS Awareness and Advocacy 3 weeks, 5 days ago

    Every May is ALS Awareness Month and here at BioNews/ALS News Today we try to focus on raising awareness. This year we are asking that each forum community member also participates in some way large or small! You can raise awareness by sharing your story or facts about ALS on social media, participating in ALS Walks in person or virtually, asking…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic How Has Your ALS Changed How You Exercise? in the forum Living With ALS 4 weeks ago

    From reading everyone’s responses, I think we “former fitness devotees” have discovered that we now need to make adjustments – – in duration, frequency, and type of exercise. It’s also an ego adjustment too; to not get caught up in comparing what we used to be able to do. Our bodies need daily movement… it doesn’t have to be traditional…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic 1st EMG in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 4 weeks ago

    Andrew, that is good news about your recent EMG and that your neurologist explained and reassured you. I’m glad our forum members could offer you insight and support. Best wishes on your road to finding a diagnosis.

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic How Has Your ALS Changed How You Exercise? in the forum Living With ALS 1 month ago

    Bravo Bill! You certainly are maintaining your physical activity – – along with a well-thought-out transition plan.

    London Marathon in October! And hand-cycling in the 2023 Boston Marathon! Those are some fantastic goals! Go for it 😉

  • Profile picture of Dagmar Munn

    Dagmar Munn posted an update 1 month ago

    Sharing my latest post: “Are You Stuck in the ALS Waiting Room?”
    https://alsandwellness.blogspot.com/2022/04/are-you-stuck-in-als-waiting-room.html

  • Profile picture of Dagmar Munn

    Dagmar Munn started the topic How Has Your ALS Changed How You Exercise? in the forum Living With ALS 1 month ago

    Exercising and ALS used to be a controversial topic among patients and their doctors. But the past 10 years of research show that exercise is indeed beneficial for those living with ALS. But, as I’ve discovered over the 12 years I’ve been living with the disease, regarding exercise: it matters what you do and how long you do it.

    I used to eas…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic ALS and Pain in the forum Living With ALS 1 month ago

    John, the one thing I’ve learned from reading our forum member’s comments – – is that we all have slightly different variations of similar symptoms. That said, my own experience was to have achy pain in my shin and thigh of the leg that had foot drop. This was during my first year. But the combination of medication, regular range-of-motion…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic Long Journey in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 month ago

    @ Mike and @John,

    First, thank you for sharing your stories. I am glad that you found the forums a safe place to share and process some of what you are both experiencing.  As you can see, our online community is amazingly supportive. Also, you know that you are not alone in dealing with some doctors who are not well informed about ALS and in my…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic I would like to remember those in my family who have lost their battle with ALS in the forum In Loving Memory 1 month ago

    Lisa,

    What a wonderful idea and thank you so much for sharing.  I posted this on my FB page!!  Definitely add this to the ALS Awareness Month forum if you haven’t already!!!

    Amanda

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Long Journey in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 month ago

    I agree with you Trevor.
    Mike – – it does take a long time for many patients to finally have a definitive diagnosis. Some see the same neurologist, but the symptoms are so slow that an early determination can’t be made. Others (like what seems to have happened to you) see numerous physicians but due to their lack of familiarity with ALS, are…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 1 month, 1 week ago

    Congrats Lisa! What a unique and wonderful experience. it’s great to hear the feedback about the director and crew. I had emailed back and forth with the director early on – – when he asked me if I knew anyone with ALS who might want to be in his movie (HA!) and he was kind and considerate then too. ………..and to be in your sister’s wheelchair…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic How to Keep on Talking: Helpful Tips and Links for ALS-related Dysarthria in the forum Living With ALS 1 month, 1 week ago

    Bravo Pauline! I like your attitude! …and am happy to read that you were able to find the resources that helped you early on.

  • Profile picture of Amanda

    Amanda replied to the topic Thoughts and ideas in the forum ALS ​and​ ​Relationships 1 month, 1 week ago

    @Nancy,

    It’s been a while since we started this thread and I wanted to check in with you and see how things were going.  I know from your previous post that you and your husband had a lot on your plates.  How are you both doing now?

  • Profile picture of Amanda

    Amanda replied to the topic Care giver check in in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 1 month, 1 week ago

    Hey there cALS,

    How is everyone doing now that we are a quarter the way through 2022?  Do you have any updates, funny stories or memories you would like to share?

    Chime in and let us know how things are going!!

     

    Amanda

  • Profile picture of Amanda

    Amanda replied to the topic Applying for disability and medicare in the forum Living With ALS 1 month, 1 week ago

    John,

    I found this on the AARP website.  I don’t know if it will be helpful for you or not.

    https://www.aarp.org/retirement/social-security/questions-answers/enroll-medicare-not-ss.html

    Can I get Medicare if I’m not getting Social Security yet?
    AARP

    Yes. But you should be aware of the enrollment deadlines, as Social Security wi…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic I would like to remember those in my family who have lost their battle with ALS in the forum In Loving Memory 1 month, 1 week ago

    Bill, that is a lot of loss! I am so sorry.  Do you have favorite memories that you could share of each of them?  Sometimes when I miss my father, I try to think of something he did that always made me laugh or smile.  I hope that you have a lot of fond memories to hold on to.

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Applying for disability and medicare in the forum Living With ALS 1 month, 1 week ago

    Thank you for adding that, Kathy. There are so many pieces to the medicare/disability puzzle – – every little bit helps!

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Applying for disability and medicare in the forum Living With ALS 1 month, 1 week ago

    John, Here are some helpful tips and information:

    1. There are special Medicare eligibility rules for people with ALS. You’re eligible for Medicare as soon as your SSDI benefits begin (and there’s no longer a waiting period for SSDI as of 2021).
    2. To qualify for SSDI: If you have worked at least five of the last ten years and have paid taxes for…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic I would like to remember those in my family who have lost their battle with ALS in the forum In Loving Memory 1 month, 1 week ago

    I’m so sorry for your loss, John. We appreciate you joining us here on the forums.

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