ALS News Today Forums Forums Living With ALS How do you describe ALS to friends and family?

  • How do you describe ALS to friends and family?

    Posted by Dagmar on November 29, 2022 at 1:01 am

    For anyone outside of the ALS community understanding exactly what ALS is can be very confusing. In fact, it’s confusing enough for those of us who have it too! I’ve had to answer questions such as: what is ALS? Is it the same as MS? Or, how did you get it?

    I know that friends, family, and even strangers who ask me these questions aren’t ready for a long and detailed technical explanation. So, I use short, easy versions. Mine are: “I have a muscle-neuron condition,” or “the motor-neurons in my legs are slow.”

    What do you tell people who ask about your ALS? Do you have a short description that explains the concept in a way such that any listener can understand it in a short period of time? I’m sure our newly diagnosed forum members would appreciate learning from you.

    Dagmar replied 1 year, 5 months ago 4 Members · 4 Replies
  • 4 Replies
  • Kathleen B (Katie)

    Member
    November 29, 2022 at 3:22 pm

    I too keep answers simple—yet informative—and totally unlike what most of the ALS ‘fact sheets’ list.
    My generic explain involves mention that I have a disease called ALS, affecting all my skeletal muscles, which will eventually stop working,  because nerve messages from my brain & spinal cord that send signals to cause movement are becoming damaged for some unknown reason. That leads easily into a simple sentence that there is no cure, and very limited treatments that can slow down the progressive muscle loss.  For me, that usually seems to be the most accepted  conversation for those who are not the closest of friends or relatives. It is not perhaps the most medically or scientifically precise, but it is relatable.

  • Gideon

    Member
    November 29, 2022 at 6:35 pm

    Unfortunately, no one understands what ALS is, when I explained ALS to people I said: is like a three-prong electric cable, The outside is the muscles cover by three neurons, when this neurons get short circuit thy in progress kill the muscles .
    It happens so many times that health care, or nurse, don’t have any knowledge what they doing. Or what to do.

  • Charles Sutherland & Doris Sutherland (caregiver)

    Member
    November 29, 2022 at 7:40 pm

    We just tell them I have an incurables disease call ALS. It causes muscle weakness. My brain and spinal cord signals are not in are not working as they should. There’s only treatment to slow the progress. And If you want to know more about ALS – just Google it. People will look at you so pitifully.

  • Dagmar

    Member
    December 18, 2022 at 12:35 pm

    Thank you forum members for your responses 🙂 You inspired me to write a column about this type of challenge:

    Learning How to Answer the Question ‘What Is ALS?’ – https://alsnewstoday.com/columns/crucial-component-als-awareness/

Log in to reply.