ALS News Today Forums Forums Boosting Our Voices ALS Awareness Month ALS Awareness Month Spotlight: Susan Gray

  • ALS Awareness Month Spotlight: Susan Gray

    Posted by kevin-schaefer on May 26, 2020 at 1:45 pm

    Hey everyone! Hope you all had a safe and relaxing holiday weekend.

    We’re nearing the end of ALS awareness month, but we have a couple more member spotlights here. Thanks again to everyone who has shared stories!

    This is Susan Gray’s story:

    [caption id="attachment_15431" align="alignnone" width="300"] Contributed by Susan Gray[/caption]

    “My name is Susan, and I’d never had any health issues in my 72 years until ALS struck. I first noticed my left foot slapping when I walked in January 2019. Life and travels got in the way, and it wasn’t until August that testing began (X-Ray, MRI, and eventually EMG) and subsequently ended with “the diagnosis” in November 2019.

    Presently, having to stay at home due to COVID-19 is having more of an impact on our life than the ALS. We miss getting together with friends and traveling in our little camping trailer. I wish more people understood that when “life gets back to normal,” those of us who have ALS won’t get to experience that new normal. For us, that new normal came the day we heard “I’m sorry. You have ALS.” However, let me add what other pALS have so aptly said “I accept the diagnosis but not the prognosis.” I may walk a little slower than before, but intend on being as active as possible for as long as possible. #WhatALSistome”
    astrid replied 3 years, 3 months ago 8 Members · 8 Replies
  • 8 Replies
  • susanarchitect

    Member
    May 26, 2020 at 2:21 pm

    Hi Susan,

    I noticed my left foot slapping in October/November of 2017. I was misdiagnosed with Lyme, the test and Positive for ALS. I was with a cane for a good year, then a walker and wheelchair. As a hiker, I purchase a Grit Freedom Chair, that is good on hills and dirt paths. Keep moving as long as you can!

    I’m a Susan too.

  • katherine-hooks

    Member
    May 26, 2020 at 6:08 pm

    Hi Susan, I am 72 also. It started with my speech. I was  diagnosed last year. My husband and I retired 10 years ago and started cruising. We loved going. Did about 36 cruises. I am still mobile but get very tired. I am on a ventilator at night. My speech is very bad now. It’s all the Lords hands not mine. Take care. Kathy

  • Dagmar

    Member
    May 30, 2020 at 12:40 pm

    You are an inspiration for us all Susan! Thank you for sharing your story with us, and being a part of ALS Awareness Month.

    Together, we support each other. Together, we will push for treatments and a cure! 🙂

  • Amanda

    Member
    June 1, 2020 at 7:01 pm

    How inspiring!! Thank you for sharing your story and contributing to our forum.

  • diana-belland

    Member
    June 2, 2020 at 10:36 am

    Your attitude is inspiring, Susan!   I do hope you’ll be able to get back to traveling in your camper trailer in the future!

  • robert-daniels

    Member
    June 2, 2020 at 2:19 pm

    Hi Susan

    I appreciate your spirit, I try to approach my life the same way. Mine began with my left hand in 2015, loss of dexterity, was DX with a strange sounding rare condition. Everything remained the same for two years then right leg and low back issues, neck surgery and a new DX in March 2018. Prior to the back and leg issues I was still an active 5th degree black belt in Japanese Karate with over 25 years of training, a biker and loved golf. Today I am walking very slow with a walker, my speech is difficult to understand and my right hand is beginning to fail but each night I go to bed hoping to wake up to a meaningful treatment to get some part of my old life back. You are right about having the right attitude even though many days it is hard. Let us hope that 2020 is the year for a breakthrough for all of us.

  • astrid

    Member
    October 25, 2020 at 6:46 pm

    .Hi Susan I had and still have difficulties by accepting the ALS

    diagnoses, but you sad  something that i will remember, you sad I accept the diagnosis but nog the  prognoses, I Will keep that in mind. Thank you for that!

  • astrid

    Member
    October 25, 2020 at 6:48 pm

    .Hi Susan I had and still have difficulties by accepting the ALS

    diagnoses, but you sad  something that I will remember, you sad I accept the diagnosis but not the  prognoses, I Will keep that in mind. Thank you for that!

Log in to reply.