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    • #22708
      Dagmar Munn
      Keymaster

      I used to dread getting older, but now that I live with ALS, getting old is my new goal. Every year I make it to another birthday is, for me, a celebration of my resilience.

      I also used to feel biological “younger” than my chronological age. Now, with ALS my mind feels young but I’m stuck in a much older body.

      How has ALS changed your perception of aging? Or do you feel and think the same as pre-ALS?

    • #22735
      Beth Rookey
      Participant

      Yes, Dagmar! When I was dx at 31yo, I thought my life was over. I was fortunate to get into a drug trial, was again fortunate to get the drug & 30 years later I celebrate every birthday! I’m thrilled to be 61yo and to be as ‘healthy’ as I am! Old, to me having ALS, is something to take pride in achieving.

      • #22771

        Hi Beth,

        Please could you share which drug trial it was?

        Thanks!

        Jean-Pierre

        • #22772
          Sandra mcleod
          Participant

          Yes…I’d like to know too

        • #22775
          Beth Rookey
          Participant

          Hi… The double blind drug trial I was involved with, in 1993, was for CNTF. They stopped the open label use of it because they were not seeing the efficacy they wanted.

        • #22788

          Thanks Beth!

          I found with some difficulty literature about this trial, it seems there were many unwanted side effects including severe weight loss (one of the worst things to inflict on an ALS patient) and severe cough. And as you said the primary and secondary goals were not met.

      • #22806
        Dagmar Munn
        Keymaster

        Beth – – you bet! Keep up that fighting spirit.

    • #22732
      Daniel Mitchell
      Participant

      Hi Dagmar,

      I look forward to every birthday!  My mind is young and I feel the same in my body.  I adapt to every change and I have to give up on the things I can no longer do.  I’m good spirits every day.  I can’t just mope around saying woe is me.  That’s not who I am.

      Sincerely,

      Daniel Mitchell

      • #22807
        Dagmar Munn
        Keymaster

        Daniel – – you are my kind of person! I agree with all that you said.
        High-fiving with you across the miles!

    • #22739
      Kathleen B (Katie)
      Participant

      My goal at age 40: to live to a healthy 100!  I, too, looked young for my age then, had just had my 3rd child 7 months previous, and was staring my ‘next 20 years’ of teaching special education in a new location.  Just thyroid & allergies to deal with—no big deal.  Then, ALS dropped out of the sky (sporadic limb/lumbar onset)…year & a half after retiring, age 65.  Yes, in my opinion, ALS causes accelerated aging of the body & systems, as the loss of motor neurons shuts down the functioning of so much.  I am now in an older body for sure, tremendous loss of mobility & independence—just day-to-day effort to make it to the next event I look forward to—grandkids, weddings, friends visits, and all those things I looked forward to in retirement! Only my love of landscape work and gardening has been compromised down to a single air plant & succulent plant.  I truly pray for some  longevity —can’t take Riluzole—am trying clinical studies—it’s all up to the Good Lord to know when my time is up—(& now I am more aware of that fact).

    • #22770
      Dick
      Participant

      I was diagnosed last October at age 84. Thought I would live forever. My father lived til 103. Anybody else diagnosed this late in life?

      • #22774
        Sandra Mikush
        Participant

        My dad was diagnosed at age 81 and lived to 86. He was misdiagnosed with peripheral neuropathy a few years earlier. The last year was hard, but he had some really good years and kept a positive attitude. Good luck to you!

      • #22860
        john hamilton
        Participant

        Well, I was diagnosed with bulbar-onset ALS last year, at the “young” age of 80.  Felt great up ’till then, pumped a little iron, swam, road-biked—even did self-directed rides in UK and France! But, hey, still breathing, no pain, just tough eating some things, and get tired super fast! My mind’s still fine, but the bod’s definitely fading: down from 206 to 173 in about a year.   But no pain! And certainly better off than many others my age, and certainly better off than some of those poor folks in Ukraine!

        Hope I make it to 86, as Sandra’s dad did!

    • #22778
      Jerry Fabrizio
      Participant

      Hi,

      I always thought I would die around 70.  My father died at 47 and grandfather died at 71.  My mother died of ALS when 68.

      I am 60 now and I may last to 70.  If I get to 65 that will be great.  I am not afraid to die.  I just now must get used to not helping everyone and accepting everyone’s help.  I like to show my love for people by doing things for them.  Now I must let them show their love for me by doing things for me.  These next years will be a blessing if I make it through them and a bigger blessing if I do not.

      To summarize, ALS has not changed my perception of aging.  I will die someday.  But it has changed everything for me.

      Jerry

      • #22781
        Eric Jensen
        Participant

        Jerry,
        i, too, get joy from helping others, asking nothing in return. I am too weak to use a zero turn mower and we have 2.44 acres. When I rapidly starting loosing physical strength and endurance, my neighbors did mow my property and refused any form of payment. I had to put my pride aside. It is difficult. My neighbors also built a handicap accessible ramp for my home. Love your neighbors.

        😊

    • #22779
      Jerry Fabrizio
      Participant

      Hi,

      I always thought I would die around 70.  My father died at 47 and grandfather died at 71.  My mother died of ALS when 68.

      I am 60 now and I may last to 70.  If I get to 65 that will be great.  I am not afraid to die.  I just now must get used to not helping everyone and accepting everyone’s help.  I like to show my love for people by doing things for them.  Now I must let them show their love for me by doing things for me.  These next years will be a blessing if I make it through them and a bigger blessing if I do not.

      To summarize, ALS has not changed my perception of aging.  I will die someday.  But it has changed everything for me.

      Jerry

    • #22789
      Beth Rookey
      Participant

      Hi Jean-Pierre,

      Fortunately I did not have an of those side affects, other than feeling like a pin cushion lol!

      I have sporadic limb onset ALS so Idk if I was “blessed” with slow progression or if the low dose I was on in the trial and open label, had an affect on it! I believe my son was my will to live, I didn’t want to leave him at 15 months old. He’s now 31, a Chef in Chicago (I’m in CT) and we ‘talk’ every day!

      I’ll be starting my 31st year LIVING with ALS on October 1st…

    • #22792
      Kathleen B (Katie)
      Participant

      Kudos to all of you—many good thoughts here.   …what I sense the most, though, is that a common link from this forum (& other support groups I’ve come across) is that most pALS seem to have been very active, quite outgoing, and totally service-to-others kind of people!   And then all that disappears about us—suddenly & gradually.   My big curiosity question: did we wear out our motor neurons completely?  (I’m neither scientist nor doctor, but just gotta wonder if anyone else has thought of the possibility for the sporadic onset population of pALS?)

      • #22808
        Dagmar Munn
        Keymaster

        Kathleen, I understand that ALS doesn’t manifest in only one type of people, but in all personality types and bookworms to athletes.

        The challenge over the years is to discover what triggered our bodies to stop flushing out the toxins from our daily oxidative stress. It is the build-up of these toxins that causes our motor neurons to die. …motor neurons don’t wear out.

        Right now the 3 medications (Riluzole, Radicava, and AMX0035 all work by helping our body flush out the toxins – – helping to keep more motor neurons alive – – thus, “slowing progression.” There are other things that we can do to help reduce oxidative stress that also have research validating their effectiveness. Such as quality sleep, gentle exercise, mindfulness, and having a positive well-being (attitude).

      • #22861
        john hamilton
        Participant

        According to Julies Blog, Several studies show that the prevalence of ALS is higher in athletes who are exposed to repetitive brain trauma in their sport. Compared to the general population in the United States, mortality from ALS is more than four times higher in NFL football players. Several studies have shown that the odds of dying from ALS are two to ten times higher in professional soccer players in Europe. One study found that the longer a soccer player played professionally, the greater their risk of dying of ALS.

    • #22810
      Pete Caluori
      Participant

      I was diagnosed at 63, but what I thought were signs of old age was probably undiagnosed ALS.  I spent 14 days in the hospital while being diagnosed and they gave me about 1 month to live; needles to say my wife was devastated.  I look at each new day with hope and a new beginning.  I was diagnosed in March 2022!  when it comes to ALS most doctors know little to nothing about it!

    • #22812
      Kathleen B (Katie)
      Participant

      Thank you Dagmar—very understandable explain of what motor neuron destruction is about.  So, I don’t hAve the advantage of any 3 of those meds to flush toxins right now-but I am doing the other things as best I can.  Plus, I’m a lifetime ‘lightweight’  size person, so I am working on gaining maintaining weight —or at least keeping my BMI above 25–it is common now in a number of research pieces that a higher BMI can be ‘neuroprotecrive’…even for the general population (not specific to ALS or motor neuron disease conditions).

    • #22849
      Pete Caluori
      Participant

      Dagmar, thanks for mentioning toxins!  My particular toxin was CO2.  When my wife took me to the doctor, which I have no memory of, the doctor told her to take me to the hospital.  It was there after testing my blood they found my CO2 level at close to 200!  I now rely on a BiPAP machine to keep the CO2 levels down.  I wear the BiPAP 20+ hours a day, only time I take it off is when I eat or talk to someone.

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