ALS News Today Forums Forums Living With ALS Learning to LIVE with ALS

  • Learning to LIVE with ALS

    Posted by Amanda on June 20, 2022 at 12:39 pm

    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 Hopeful. Your attitude is everything and it affects your physical and mental health. So, try to focus on what you CAN do and what you Can control.
    Think Beyond Physical Changes. Think about your relationships, and focus on positive things in your life.
    Seek Early Treatment. And consider exploring experimental therapies. Sometimes taking action can help with a cure and your mental health.
    Take Charge of Your Care. Discuss what you would like for the future early.
    Prepare for the future and consider making your home accessible early.
    Engage Family and Friends. Help them learn about ALS and share information that you are comfortable sharing.
    Be heard and Listen! You can Join a Support Group. Write a blog or a book! Join a social networking group.
    What other suggestions do you have for newly diagnosed pALS that will help them live happier and healthier?
    Adapted from: https://www.alsclinic.pitt.edu

    Dagmar replied 1 year, 4 months ago 4 Members · 4 Replies
  • 4 Replies
  • Rebecca D.

    Member
    June 23, 2022 at 10:55 am

    Richard – thank you so much for sharing this info.  I was diagnosed May 10th and am just coming out of my diagnosis fog and trying to figure out next steps.  Your lists and resources will help tremendously.

    • Jerry Fabrizio

      Member
      July 28, 2022 at 2:12 pm

      Hi,

      I take it one day at a time.  Each day I wake up I think about how I will attack this disease this day.  I do not think about next year or next week.  What can I do today.  I have bulbar C9 genetic ALS.  So, I want to talk better.  So I sing every morning.  My arms and legs are having issues so I do yoga.  I work as hard as I did when i was working. I have had this disease for a year now. Lets kick its butt!

       

  • Alan Larrivee

    Member
    December 27, 2022 at 3:19 pm

    I have a question. It seems now I am far more emotional than I ever was. I can’t believe it but movies and songs can now bring a tear to my eyes. I chock up talking to people and can’t finish my thoughts if it’s an emotional topic. It’s nothing to do with me or my situation most times. I don’t understand.

    Has anyone else had this issue? I’m a little embarrassed by it but more curious if others have had this experience?

    thanks.

    • Dagmar

      Member
      December 27, 2022 at 3:32 pm

      Hello Alan – – you are not alone in feeling more sensitive to emotional situations. I have to avoid watching ASPCA commercials on TV because the images make me instantly feel sad. Same for watching surprise reunions (like when soldiers show up at their kid’s grade school). I believe our ALS affects our nervous system – – a cold draft sends my muscles tensing, and loud bangs in a movie have me jumping in my chair… I find the best way to deal with it is to be prepared, …or at least let folks around you know it’s not them, but your nerves.

      I wrote about my own experiences in this column for ALS News Today: “I’m Learning to Embrace My High-speed ALS Reflexes” https://alsnewstoday.com/columns/learning-embrace-exaggerated-reflexes/

      Hope this was of help to you 🙂

  • Dagmar

    Member
    January 30, 2023 at 2:38 pm

    I have found that self-talk and how we describe ALS to ourselves matters a lot. Rather than saying “this terrible disease” or “incurable disease”… I tell myself I have a condition, serious yes, but it is a condition I live with, not fight.

    That brings up another point. Not to anthropomorphize this disease of ALS. Words like “monster, mean, dreaded..” all put a human or animate quality to what is actually happening within our bodies on a cellular level. Like the old comic strip featuring Pogo, when he said, “We  have met the enemy, and he is us.” Our ALS is our body – – part of our body. Why hate our own bodies? Rather, love ourselves for what we are, and where we are now, and strive to LIVE (or at least coexist) with the condition.

  • Kathleen B (Katie)

    Member
    January 31, 2023 at 4:21 pm

    One more viewpoint again—I think Bionews writer Kristen Neva had a recent article that fits here well—her musing about ‘why is it that the US will allocate 240 million/billion dollars to build & support rovers to study Planet Mars’—why not put that much toward Medical & scientific minds that can help resolve life shattering diseases like ALS ?   THIS would be more life altering in the present—those of us striving  to live with the ALS condition need to be loud & clear now about such matters! (Yes, I am more emotional than ever before—but my sense of injustice toward the marginal in society has not changed!)

Log in to reply.