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  • What was the best advice someone gave you after you were diagnosed with ALS? – – ALS Awareness Month 2024

    Posted by Dagmar on May 29, 2024 at 1:01 am

    “ALS Tips & News You Can Use”

    We know that newly diagnosed ALS patients and their families are well “aware” of ALS. Rather, they often ask for help navigating the ups and downs of living with the condition. So, for ALS Awareness Month, our forum moderators have created “ALS Tips & News You Can Use.” It’s a collection of up-to-date ALS information, resources, and tips.  Forum members are invited to comment and share their suggestions on each topic posted. Let’s help each other learn how to live with ALS.

     What was the best advice someone gave you after you were diagnosed with ALS?

    Friends and family of newly diagnosed ALS patients often give lots of advice – – some of it helpful, some not. But sometimes we receive advice that becomes a golden nugget and is immensely helpful.

    What was the best advice someone gave you after you were diagnosed with ALS? 

    Or, what helpful advice would you give someone newly diagnosed? 

     

    ICNU replied 1 month, 1 week ago 5 Members · 4 Replies
  • 4 Replies
  • Amanda

    Member
    May 29, 2024 at 9:48 am

    Two bits of advice have been very helpful. First, I was encouraged to be mindful and focus on what I can do, and not what I cannot. Just being positive helps me alot.

    Second, my doctors have told me not to focus as much on the numbers, and focus more on how I feel. That may sound strange, but the Tofersen/QALSody is helping a lot, and giving me hope.

  • Sunny

    Member
    May 30, 2024 at 4:45 pm

    Keep your social life. Do not be embarrrassed by your disease. I have bulbar onset ALS. My speech, lungs (on a ventilator ) and abilty to eat, are major issues. I still do all things I did before and enjoy everything. My friends have adjusted to the new me and I do not make my illness the focus but enjoy their company.

  • Tara

    Member
    May 31, 2024 at 1:52 pm

    I strongly agree with these two women- focus on what you CAN do, and keep up social activities as much and as long as you are able. I, too, have Bulbar onset and my speech is awkward, at best and I have to be very careful about how I eat. However, my family, close friends, and civic/church friends are very understanding and we don’t focus on those things.

  • ICNU

    Member
    June 5, 2024 at 1:28 pm

    I Totally agree with the prior comments, I would only add what works for ME;

    “ENJOY EVERY DAY” &. “LET YOUR FMAILY FULLY LOVE YOU” .

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