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    • #20324
      Amanda
      Keymaster

      For many pALS, the first time they heard of ALS was from their doctor while they were getting diagnosed with ALS. For me, I heard about it when I was 11, and my grandfather was diagnosed. I was young, admired my grandpa, and I was absolutely clueless how those three letters would impact my life.

      When was the first time you heard of ALS. Was it when you were diagnosed? When you heard about the Ice Bucket Challenge? Did you know about Lou Gehrig disease? Did you know anyone else who had/have ALS? How much about ALS did you already know?

    • #20340
      Jackiekrnbsnals
      Participant

      Those 3 letters I came across in Nurses training. I never did have a patient with ALS. I tucked the info way back in my memory and carried on.
      When my symptoms began ( won’t bore you) I read online, and read some more. Over these past months I’ve become well versed in those 3 letters. I see a Neurologist tomorrow. This will start the process of a diagnosis that will lead to good news, or bad.
      If bad, I’ll let you know. The Lord already allowed me to have a psychiatric illness of which I am already Medicare disabled.Too bad you don’t get double the $$ for 2 disabilities.! ;).
      Please send up a prayer for Jackie the Nurse from SD.
      Those 3 letters are a horrible curse. Thanks for your prayers.!

    • #23189
      Alan Larrivee
      Participant

      My grandfather died of ALS 5 years before I was born. So I grew up with the knowledge. When my mom was diagnosed in 2000 it was reinforced. That was followed quickly by a sister in law and a then my brother. I couldn’t trip without the thought of ALS sneaking into a conner of my mind.
      Then it was my turn. That news came on my birthday last summer.

      Here’s hoping I am the last. The research being done is amazing!

      • #23191
        Amanda
        Keymaster

        @Alan,

        Have you and your family had genetic testing? Do you know what mutation you have? I have the SOD1 mutation and Toferson is looking promising. It is unfortunate that it is SOD1 specific, but if it continues to show positive results, the technology could do wonders for finding other treatments for other genetic mutations that cause ALS.
        Amanda

        • #23228
          Alan Larrivee
          Participant

          For some reason the response I posted to you was lost.

          I try again. I was genetically tested with C9. When my brother was diagnosed they could only test for SOD 1. He was negative for that. My mom died in 2002 and I don’t think there was any genetic testing being done. At least none was discussed.
          Good news though I have been accepted into a drug trial for C9.

          I am hoping that I will be able to make some small contribution to the research that will end this menace from my family and all families.

        • #23235
          Amanda
          Keymaster

          Alan,
          I think we are kindred spirits!!
          When I first started volunteering for the pre-fALS study in 2010, I think they had only identified the SOD1 mutation but suspected many more. Now I think they have identified over 20 genes with mutations. In the SOD1 gene they have found over 180 different variants of mutations. Alan, CHEERS! they are discovering more and more in the world of ALS! I pray and hope that you are the last in your family too, As I hope I am the last pALS in mine.

          Is there anything that you can share about the drug trials for the C9 mutation? I understand that sometimes participants cannot discuss details so if you are permitted to share I’m sure many of us would love to learn more!!

          Amanda

    • #23193
      david hollister
      Participant

      Big baseball fan so always knew about Lou Gehrig…

    • #23194
      Beth Rookey
      Participant

      I heard those 3 letters in October 1992, we said ‘Ok, how do we treat it?’ The neuro said ‘We don’t, you have 2-5 years, go home and enjoy your (15 month old) son while you can’! We went home & tried to find more info on the dial-up internet, found out it was Lou Gehrig’s Disease – a Yankees baseball player, that stung to this Red Sox fan! I asked for a second opinion at Univ. of VT & was enrolled in a drug trial.

      I was devastated thinking my son would grow up not knowing his Mom! Every year past 2 year Anniversary was celebrated in my heart, I’d say ‘You were wrong Dr., I’m still here!’ 30 years strong LIVING with those 3 letters!

    • #23199
      Shelly Roy
      Participant

      A co-worker who taught at the same school was diagnosed just before he retired. His goal had been to play piano in a lounge during his retirement. ALS never allowed that to happen. Forward about 15 years to 1 Sept 2022 and I heard those letters but this time they were directed to me not an acquaintance.

      ALS wasn’t even on my radar:  arthritis, carpal tunnel, a pinched nerve, even stroke were all possibilities until I saw a neuromuscular specialist. I recognize I’m just beginning my journey but it’s been a horrible roller coaster ride. I’m thankful for supportive family and friends as well as compassionate doctors.

    • #23202

      Well, my husband didn’t want to reply. My husband first had symptoms in 1998.  The doctors diagnosed him with spinal stenosis, pinched nerve, compression  of spinal cord – cervical lamenectomy. This lead to three unnecessary surgeries. Fast forward to retirement in 2008, new location and new doctors – as weakness, balance and muscle loss progressed. Finally, in 2021-22, new neurologist felt this may be ALS. And this is the first time we heard the word ALS. Confirmed diagnosis on September 14, 2022. We will never forget this date and the impact.

    • #23214
      Cheryl Teribury
      Participant

      In early 2017 I was experiencing weakness in my right hand.  After testing, hand dr said it was carpal tunnel.  I had the surgery, but nothing changed.  I was then referred to a Neurologist.  Several months later I saw the Neurologist.  He examined me and said he suspected ALS.  I had no idea what those three letters meant.  He gave me a brief summary and I was floored!  He wanted to perform an EMG test to confirm his suspicion.  The test was scheduled for the next week.  I left his office and went to work and immediately researched ALS.  I was horrified and cried all day.  And the next 3 days.  After doing the EMG, the dr confirmed it is ALS.  My world just became a whole lot smaller.  12/14/17 is forever etched in my brain.

    • #23217
      George
      Participant

      At the height of Covid my partner met with a Neurologist.  He had been falling, fainting and had drop foot for some time.  He worked in a hospital with special needs individuals and was admitted for fainting.  The Neurologist looked at the muscle between his thumb and index finger and gave him a preliminary diagnosis.  The Neurologist recommended a hot shot ALS doctor in Columbia University Hospital in NYC.  We tried for 3 months to get an appointment but the staff was so unqualified to work with patients that we gave up.  The Neurologist then recommended an ALS physician in Univ. Penn., Philadelphia.  Driving down for an appt, the car died.  Can’t make this up.  We called and were referred to another ALS doctor at Univ. Penn.  This physician also worked at the VA, Philly and we believe was a gift of God.  His knowledge, care, staff experience, and overall VA quality and caring, he was rapidly moved into the ALS system.  I went on a expedited learning program and reached out to any organization that maybe could give me more of an education.  I don’t wish this diagnosis on anyone.  Every day life is dictated by the disease.  Plans are tough to keep, and second guessing is the order of the day.

       

       

    • #23219
      Kathleen B (Katie)
      Participant

      <p style=”text-align: left;”>Indeed—the last 2 sentences of George’s item RING TRUE for all of us with ALS!   It IS the total truth and actual reality.   Thank you George—I will memorize and use these sentences with credit to you!</p>

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