• Fear and ALS

    Posted by Amanda on January 20, 2023 at 9:12 am

    Juliet captured what I have been thinking about in her column, How Fear Can Show Us What’s Important.

    Since my diagnosis in December, I’ve been swaying between a variety of emotions. I’m certain everyone in our community understands.

    The two emotions that I have been experiencing the most are fear and guilt. Survivor’s Guilt is the best description.

    For years, and years I have been volunteering for pre-fALS research. And, just when being diagnosed, Tofersen is on the FDA’s list for review. My team of doctors was able to make the diagnosis very early. They are also hopeful that receiving Tofersen early before major symptoms occur, could, it should, stop the progression.

    Like Juliet, prior to ALS entering my world (family members), I believed that fear was something to be conquered and overcome. Now, fear and fearlessness have new meanings to me.

    In order to cope with all of these emotions I reached out to mental health counselors; however, there is a long waitlist. So, I’ve turned to my doctors, friends, and social media for support.

    What emotions have you experienced as a pALS or a caregiver? How have you approached and processed all of the emotions? Did you seek out a counselor, or support group or turn to family and friends? What advice can you give other pALS and caregivers?

    JohnW replied 1 year, 6 months ago 2 Members · 2 Replies
  • 2 Replies
  • George

    January 24, 2023 at 2:23 pm

    Anger, fear, sadness, confusion, concern, love, caring,  all emotions that trip over each other.  Every day is different and met with resolve to do what we can to make my partner safe and comfortable.  No magic or miracles.  The elephant in the room just keeps getting larger.

  • JohnW

    January 24, 2023 at 4:20 pm

    I personally have turned to Our Lord Jesus and the gospel messages. With Him you can overcome anything. Blessings to you and you family.


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