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    • #22066
      Richard
      Participant

      After being diagnosed with ALS, does anyone else besides Lou Gehrig believe that they are the luckiest man on the face of the earth?

       

    • #22070
      Dagmar Munn
      Keymaster

      Richard, I believe you are mixing up facts and context in order to make your point.

      Lou Gehrig didn’t say that phrase in relation to his illness, but in gratitude for the opportunities, people and experiences of his life. On July 4, 1939, Gehrig delivered his famed “Luckiest Man” speech in front of a sold-out crowd at Yankee Stadium.

      A transcript of Lou Gehrig’s iconic speech:

      “Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of the earth. I have been in ballparks for 17 years and have never received anything but kindness and encouragement from you fans. Look at these grand men. Which of you wouldn’t consider it the highlight of his career just to associate with them for even one day? Sure, I’m lucky. Who wouldn’t consider it an honor to have known Jacob Ruppert? Also, the builder of baseball’s greatest empire, Ed Barrow? To have spent six years with that wonderful little fellow, Miller Huggins? Then to have spent the next nine years with that outstanding leader, that smart student of psychology, the best manager in baseball today, Joe McCarthy? Sure, I’m lucky. When the New York Giants, a team you would give your right arm to beat, and vice versa, sends you a gift — that’s something. When everybody down to the groundskeepers and those boys in white coats remember you with trophies — that’s something. When you have a wonderful mother-in-law who takes sides with you in squabbles with her own daughter — that’s something. When you have a father and a mother who work all their lives so you can have an education and build your body — it’s a blessing. When you have a wife who has been a tower of strength and shown more courage than you dreamed existed — that’s the finest I know.

      So I close in saying that I might have been given a bad break, but I’ve got an awful lot to live for.”

      • #22080
        Steve L.
        Participant

        Dagmar,

        Thanks for the copy of Lou’s speech. I have to admit I’ve never read or watched the full speech. It brought tears to my eyes as I read it.

        I took the liberty of copying the text you gave us and sent it off, in an email, to fifty or so people who might appreciate it. No better way I can think of to honor Lou and to honor those who are/have been stricken with ALS.

        Steve Landis

      • #22083
        David Lichtenstein
        Participant

        I have understood what Mr Gehrig meant when he gave the speech, although I have been blessed to also feel “lucky” in several ways after my diagnosis. It has opened my eyes, mind, heart and faith in ways I never believe it could have. I realize how much I overlooked the gifts that I was blessed with. I truly believe that I would not have experienced this awakening without my diagnosis. Even now, very close to the end of my journey, I appreciate people and situations that I don’t believe I would have otherwise. There are certainly better ways to leave this beautiful world, but I didn’t really see that beauty before.
        Thank for allowing me to share my thoughts with you.

    • #22071
      Amanda
      Keymaster

      I’ve listened to this speech a number of times. Lou Gehrig was such a gracious man and carried himself in such a positive manner. Today is Lou Gehrig Day and I think it is great that the Baseball profession is trying to “Pitch in” and raise ALS awareness :). Punn intended.

    • #22076
      Richard
      Participant

      However, it is pitiful that it took the Baseball profession 80 years to support ALS awareness in the name of Lou Gehrig.  June 2nd 2022 should be the 81st recognition, not the 2nd.

       

    • #22077
      Kathy stitz
      Participant

      That’s true, Richard.  Many people don’t even know what ALS is. Unfortunately people usually don’t focus on caring about or supporting a medical condition unless it impacts them personally where they have it or a family member or friend have it or have passed away from it.

      • #22117
        Amanda
        Keymaster

        Kathy and Richard,

        You are right, many people do not know about ALS until it impacts their life in some way. Unfortunately, I guess that is true with a lot of things that people don’t want to deal with in life or that makes people uncomfortable. I hope that ALS News Today and our members are helping to contribute to ALS Awareness and actively generating funds for research and support. I know that on the forums we are interacting with a group of people that are already invested in learning more and contributing, but I do think many of us and our loved ones are stepping out of our comfort zones and participating in events and raising awareness. Of course it’s never enough, it won’t be enough until there is a cure! Thank you both for all of your contributions on the forums and within the ALS community.

        Sincerely,
        Amanda

        • This reply was modified 1 month, 4 weeks ago by Amanda.
    • #22081
      Richard
      Participant

      Kathy, I agree with you 100 percent!  I knew nothing about ALS until I was diagnosed.  A greater effort in awareness is needed.

       

    • #22082
      Len Sansoucy
      Participant

      Okay, let me take a shot at this topic. After I was diagnosed one of my daughters gave me a subscription to Storyworth as a way to vent, pass on stories and share my experience through writing because is was tough emotionally to discuss verbally what I was experiencing. The writing proved cathartic and helped me in many ways. Attached is a story I think relates to this discussion topic so I thought I’d share it here. As a related note I was able to attend last nights Red Sox game and even throw out the first pitch! I hope you enjoy my story and that it brings you comfort in knowing we are all in this journey together.

       
      <div class=”title”>
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      <h1 id=”title”>How has ALS most impacted your life and have you discovered any positive aspects from your experience with it so far?</h1>
      <p id=”byline” class=”body-text with-inline-links”>by Leonard Sansoucy on July 27, 2021.</p>

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      I realized going into this essay that it was not going to be easy or comfortable for me to write about the topic. I have been trying to draw some meaning from the situation that I find myself in and my ultimate final goal in this is to find personal peace and to live my remaining days with dignity and composure. That is what I’m striving for and this project occupies my days from when I awaken until I go to sleep at night. Sometimes I’m successful and at other times I feel like my sanity is hanging by a thread.

      I couldn’t manage either my daily physical tasks or the emotional stress without the help and support of those around me. That, I have discovered is the silver lining of this situation I find myself in. All the minutiae of everyday life has been stripped away and I’ve been granted a much clearer vision of what is important and what is just meaningless static. I need certain physical objects to help me function and move around. The rest, I have found is just window dressing and not worth the effort it takes to collect and maintain them.

      In hindsight, which as we know is 20-20, I’ve come to the conclusion that personal relationships with our family and friends is what it is all about. Sounds simple, but unless you can truly grasp how fragile our individual lives really are, you can get carried away with all the nonsense that we think is important to deal with. I know that I was guilty of this attitude in the past and all it took was speaking to my neurologist and receiving a diagnosis of a fatal disease to snap me out of it and clear my vision.

      My reduced mobility has shrunk down my physical world a great deal but at the same time opened my mind up and has helped me to really think through some things. How’s that for a cosmic dose of irony? I would never even have previously considered the possibility of things like yoga nidra, massage or speaking with a therapist. Well what do you know, I’ve now experienced all of these things and they have all been hugely beneficial to me. Go figure, I guess I didn’t know everything after all. I don’t mean to come off as preaching or pretending to now know all the answers. If anything, the opposite is proving to be true. The more I learn and the more time I spend pondering, the more I realize I’ve still got a lot more figuring out to do.

      Getting back to the people and organizations responsible in supporting me and helping to navigate through the ALS minefield. I’d be remiss if I didn’t take the time now to acknowledge how incredibly important they have been in getting me to this point in the journey. The disease is relentless and just grinds away at you physically and emotionally. Being a degenerative condition and with no cure just robs you of future hope and without a safety net around you it would be easy to just give up.

      The VA has been a wonderful source of support. The numbers indicate some type of military connection to the disease but it’s true significance is beyond my abilities to discern. Putting that aside, I appreciate that the Federal government accepted the mantle of responsibility. If it was up to me to prove a connection between my military service forty-five years back and my diagnosis in November of 2020, I wouldn’t know where to begin to try and prove that connection. Luckily, instead I just had to show only two things in order to qualify for unlimited medical care. That I was a veteran and that I had been diagnosed with Amyotrophic Lateral Sclerosis. Once I accomplished those two things the gates were opened wide for me and they have been amazingly generous with their support. I am thankful for this and can’t help but wonder how other persons with ALS who are not veterans are able to cope.

      While I’m pointing out people who have been wonderful in giving of their time and support I have to point out my circle of friends and neighbors. No job has been too small or too large for them to tackle on our behalf. I feel humbled and grateful for all that they have done. Last and certainly not least, my family that has rallied to my side with open arms ready to help with their intellect, time and love and support. It boggles my mind to think where I would be without them.

      Finally, let me single out my wife Juli. We could not have anticipated or prepared for the life altering changes that have come our way over the last six months. She has answered the call in every way. From wife, friend, housekeeper, barber, cook, chauffeur, caregiver, physical therapist, household handy person to now even being my favorite nurse. Through her love and devotion she has managed to overcome her previously strong aversion to medical procedures and blood. She now runs my medicine infusions and even removes my IV needles. If that’s not true love I don’t know what is. She has always been and continues to be, my world. My sun and moon.

      So what has ALS done to me physically up to this point? Well over the past seven months I’ve progressed from walking with a limp, to using with a cane, to using a rollator for support and now to needing a power wheelchair to provide my mobility. I have very little strength or movement remaining in both legs and my left arm. My right arm is still usable but certainly weaker than it used to be. My breathing is somewhat compromised but not yet an issue. On the plus side, my speech and swallowing are still unaffected. I don’t give this rundown looking for sympathy, I think/hope I’ve evolved past needing or wanting that. I do it simply to document my condition as it stands now. These essays have become a way for me to communicate more fully with those I care about most, so no topic is off limits. I treasure meeting with you all in person but it’s become very hard for me to try and keep my emotions in check enough to be able to discuss these things effectively. I find I’m able to get my thoughts out more clearly in writing and it’s also a way to leave my memories intact for the future.

      So would I have willingly taken on ALS in order to broaden my mind. The honest answer is an obvious one. As the cowardly lion says so eloquently in the Wizard of Oz movie, “Not no way, not no how!”. Of course the choice was not mine to make. As they say, we only go around once so I’m just trying to make the most of the time I have remaining. Most serious medical conditions (i.e. cancer, heart disease, etc.) leave you some options and choices. Some degree of chance that you can beat it and move on with your life. Unfortunately ALS is not just any disease. It’s 100% fatal with no cure and no chance of your condition ever improving. The best the drugs they offer can do is slow the progression.

      So no false hopes about what the future holds. My doctors have never discussed a timeline with me. My best guess from the research I’ve done is that I probably have about six months remaining. I have no interest in taking any extraordinary measures to extend my life once I am unable to communicate and move about. I plan to use the quality of life as my guideline. Once things degrade past a certain point it’ll be time for me to go. This allows me to know the disease that will take my life and how it will end. It also lets me do things like write these essays, have frank and honest conversations with the people that matter to me and get the rest of my affairs in order.

      I’ve made arrangements with the UMass Medical Teaching Hospital to take my remains upon my death and put them to use for research and teaching the next generation of doctors and nurses. I feel honored and lucky to have had the opportunity to have set this up. I’ve also have been able to sit down and have some difficult but necessary talks with Juli about life after my passing. There are life insurance policies and plenty of money in the bank for her to live comfortably. That is a great comfort to me knowing that and being able to take care of some of those issues.

      I’d be lying if I said I didn’t have some regrets or wasn’t angry about my condition. What’s done is done. I’ve had a good life and when it’s time to go I think I’ll be ready. I just want to end this now by relating a quick story about something that happened a couple days ago. As everyone probably knows by now I’ve been going for massages once a week for the last couple of months. It’s something I look forward to and it seems to make me feel better physically for the following few days. My massage therapist, Taylor, is a lovely young woman and we’ve had some nice conversations while I’ve been on the table. She even invited us to her wedding which we will gladly attend this weekend. Anyway, she has related to me that her relationship with her father has been rocky but she is trying to get to a better place with him.

      During the last massage session she had opera playing in the background at my request and we were having a rather deep discussion about life and fate. Taylor said that it was her belief that people come into your lives for a reason and that she had finally been able to figure out why I had come into her life. I cautiously asked her why and she replied “I think it was to show me how a father is supposed to act”. I’d be hard pressed to think of a nicer thing that has ever been said to me and I was touched and moved by it.

      I wish I could go back in time and have another chance to be a better father to my daughters and to have worked less and spent more time with them. That ship has unfortunately sailed forever but I hope that I’ve at least ultimately become a good person and perhaps that can be partially attributed to ALS and the wake up to life’s true values that it has allowed me to see.
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      My gang, showing their unwavering support. Love you guys!
      <div class=”sub-text author”>Leonard Sansoucy, July 27, 2021</div>
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  • #22093
    Dustin Kassman
    Participant

    Len, my daughter, too, has given me a Storyworth subscription and although she has not included this question, I think that I will add it myself. Thanks for sharing a wonderfully written piece.

  • #22094
    Kathleen B (Katie)
    Participant

    Thank you for Richard for starting the thread…and Dagmar for putting the text of the speech here also. I am appreciating the thought-proving responses…and will add my own now too. Although I have reached the age of mid-60’s, I was quite unfamiliar with the name Lou Gehrig…and even tho’ it was mentioned at diagnosis, along with that lengthy medical term for this disease, I chose just to call my ‘condition’ ALS…once I had to start naming to close friends /family why I had a cane, walker, etc.,  not a single person ever said the name Lou Gehrig nor did they question ‘what does ALS stand for.’   That got me thru the angst of trying to say more —and the emotional turmoil that created!  Besides, I was a 40-year teacher of student with special needs, so much of the social network I revolved in was either going to look it up on their own, or just accepted my positive spin on saying ‘it’s a good thing I have experience with adaptations & accommodations’!  So, as others have said, something that has been around for 80+ years has certainly had MANY more people from MANY more walks of life make this difficult journey, and it is still only connected with a single sports figure name? From generations ago?  Yes, I understand the content & approach of his speech—but perhaps it fostered complacency & resignation over the years—instead of awareness & definite need for this disease to be addressed?  Presently, If I bring up the name Mitch Albom, I get more response now re: ALS because of his (1970’s sometime) book ‘Tuesday’s With Morrie’.  And then there is the young man who lost his battle with ALS, but left a book in progress called ‘We Are Not Invisible’—which is nearing publication by his family & friends this Fall perhaps.  From what I have seen so far, it seems his book is more about advocacy & feeling ‘invisible’ in so many ways during the disabling journey with his family & fiancé.  I VERY much appreciate finding the ALS Today Forums and newsletter, as well as ALS organizations, Clinics of Excellence, the accelerated research since the Ice Bucket challenge, and now even a movie perhaps. Thus, hopefully the future for pALS & their families may be in motion finally ‘around the bases’ of awareness, advocacy, and ‘heading toward home plate’ after so many years of disappointing underfunding and progress.  I hope this brings Lou Gehrig into the more recent generations of ALS inclusion.

    • #22098
      Len Sansoucy
      Participant

      Dustin,

      Thanks for the kind thoughts and good luck with your writing. My hands have gotten weaker so my typing days are numbered. I’m about to progress to voice to text to be able to continue and finish up some half finished stories.

      len

      • #22116
        Amanda
        Keymaster

        Katie B.
        Thank you for sharing that information! I had not heard about “We Are Not Invisible” and it sounds like it is very eye opening. You post helps me to look at things from a different lens, thank you for the additional resources.

        Amanda

      • #22142
        Richard
        Participant

        Perhaps all the ALS associates should find a soccer star who has/had ALS.  Since soccer has 3.5 billion fans and baseball only has 500 million fans.  Rather than referring to it as Lou Gehrig’s disease, refer it to a soccer player, then maybe that would bring ALS more attention.

         

        Rich

         

         

  • #22143
    Eric Kentor
    Participant

    Thank you so much, Dagmar, for sharing the full text of Lou Gehrig’s speech and providing context for everyone. I have such admiration for Lou Gehrig, for his grace & dignity, much more so than all of his remarkable on the field accomplishments.

     

    I consider him to be the perfect name to be associated with our brutal disease, and believe he continues to be an inspirational figure.

    I, like Lou Gehrig, feel like I have been given a bad break, but also feel that I have had a life full of love, adventure and fulfillment far beyond anything I could’ve imagined when I was young. I am so glad major league baseball has decided to honor him across all teams. It was a fantastic opportunity to be at Dodger Stadium on June 2 this year with my family and many others to celebrate Lou Gehrig and raise awareness.

     

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