“Me, You, and Lou” – A Letter from Someone Newly Diagnosed with ALS

Adam Smith, 37, was an overly active person until a mysterious, undiagnosed illness turned his life upside down. He saw multiple doctors until one realized the problem was not in his head, but very real. After a trip to the Mayo Clinic, Adam was diagnosed with Lou Gehrig’s Disease in May 2016. After his diagnosis, Adam sent the following letter to his friends and family. He is supported and loved by his wife, family, friends, and sweet Akita.


Dear Friends,

To point at a day on the calendar as the best and worst day of your life is a rare feat. On May 27, 1985, my wife was born – best day of my life. On May 27, 2016, I was told I’m dying – worst day of my life.

“You have Lou Gehrig’s Disease. There is no treatment, there is no cure. I’m sorry, Adam.”

Mayo Clinic, Rochester, MN
May 27, 2016

As my doctor delicately explained that my body will slowly become paralyzed over the next 2-5 years until I can no longer take a breath, my thoughts drifted to my wife and our families. Turning 31 and being told your husband is dying is unimaginable. I could only think how every birthday for the rest of her life she will have a painful memory that will never fade over time. Thirty-one is too young to be told you’re going to be a widow. It’s too young for dreams to be crushed and vows to become impossible to achieve. Thirty-one is too young to be told you’re going to be taking care of your sick husband for the rest of his short life. Heartbreaking.

For our families, comprehending they will live through another one of us dying a slow, debilitating death was more than I could take – tears streamed downed my face and words became impossible to say. As we sat in the doctor’s office with only the sounds of me fighting to regain control of my emotions, I thought of my mother watching both her husband and son die in less than a decade. It crushed me, and continues to crush me. Heartbreaking.

I know what you’re thinking now. You want to know how am I actually doing? The best answer I can give you is, okay. I worry a lot about the future of those around me. I worry about the financial cost of going out like this – the research doesn’t paint a pretty a picture. My mind drifts – how in the world did I get this disease? I have better odds of getting struck by lightning. I’m angry with the knowledge that even with odds of 2 out of every 100,000, I’m even rarer getting this under the age of 50 and was living a healthy life up until Lou started hanging out with me. I’m angry thinking about Lou. I’m sad thinking about the people that laughed at, or felt burdened by the Ice Bucket Challenge. Most of all, I’m tired and frustrated from Lou being a Stage-5 Clinger.

These thoughts and symptoms don’t consume me 24-7. I still find joy from watching movies, sports, and getting outside with my wife, friends, and family. I enjoy playing my video games. I enjoy working and the people I work with – in that way I’m luckier than almost anyone I know. I still get a lot of laughs from group texts. I laugh a lot with my wife. The Sunday family dinners are one of best parts of each month. All and all, there is still a lot of joy in my life.

That’s Me.

Many of you have watched me over the last 18 months decline and wondered, asked, and pushed to know what’s wrong with me. Now that I actually have an answer for you, my hope is that we can make the most of our time.

Again, I know what you’re thinking. What can you do to help? You can share my story. You can let people know there is a face to the Ice Bucket Challenge. You can participate, donate, and raise awareness for Lou Gehrig’s Disease (ALS) research. You can call, write, and push your state representatives to pass a Death with Dignity law in Colorado. I’m completely lost in how to raise money or seek resources. Most of all, you can celebrate and cherish the health, family, friends, and future you all have in front of you.

That’s You.

Lou Gehrig delivered one of the most famous speeches in American history 77 years ago. He told a stadium full of people he was “the luckiest man on the face of the earth,” after being diagnosed with ALS on his 36th birthday at the Mayo Clinic. He was told then there was nothing they could do for him. It has been 75 years since he has passed away and the Mayo Clinic delivered me the same message.

There are currently 20,000 people in the U.S. with Lou Gehrig’s Disease. Compared to the millions with cancer, MS, and HIV/AIDS, the number is very small, and probably why treatments or a cure has not been developed. It also could be because with Lou Gehrig’s Disease, a person is diagnosed every 90 minutes, and a person dies every 90 minutes. With so very few people actually witnessing its devastation, the public support for treatments doesn’t exist.

That’s Lou.

This is my truth and something my family and I are learning to live with daily.

If you are reading this you likely know someone with a similar situation; and if you are reading this and have no experience with Lou Gehrig’s Disease, I ask that you learn more about ALS. But that is not all. Spread the word that this disease has no treatments; it has no cures; and that those who are diagnosed are prisoners to their bodies until their final breathes.

Please stand with me this August as we raise awareness and funding to find a treatment and a cure!

Adam


Each contribution to the fight against ALS – no matter how seemingly large or small – adds up. Please consider making a donation this August, and every August, until we have a cure. Then, tell your friends why the fight against ALS matters to you and encourage them to make a contribution, too!

 

33 comments

  1. Adam,
    I too was diagnosed June 13 2016. On the same day I received a call from work while in my doctors office Not to come back to work. I am with you. Stay strong. SHC

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    1. Adam I was also diagnosed this year on May2 2016. I almost fell off my chair when they told me in the doctors office. Then all the worrying begins its a stuggle eveyday trying to put on a happy face knowing how this is going to end. But you have to stay strong and try to enjoy the things that make you happy because nobody knows how long we have not even the doctors can say for sure. Keep up the fight

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  2. I’m so sorry to hear this and this letter hits home with me. I come from a family that has been hit with this as long back as 1954 from what I’m told. My grandfather, aunt, mother and brother (at the age of 30). There are several distant relatives that have this disease as well as lost their battle too. I’m sitting here knowing I have the gene but am enjoying life to the fullest but at the same time scared to death as when this will hit or will my children develop this nasty disease which is very possible since I have a gene. I wish you and your family lots of much needed time together, spend those days together, everything else can wait…the memories can not! Miss my mom and brother dearly! Als sucks!

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  3. My best friend Kathy, was diagnosed last February. We’ve already seen some decline. Her spirits remain wonderful. Her faith is very strong. How is your spiritual life? Do you know God as your personal savior? This disease is probably the most awful disease on the planet. My daughters mother-in-law died of it. And now my friend Will die of it as well. I wish you Godspeed and hope and pray your wishes come true!

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    1. I was diagnosed November 2015. Today August 16 2016 my wife and I have been married 41 years. It’s hard to say your the luckiest man alive. But I have been blessed. Prayers to all with ALS.

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      1. My Brother Lived 14 years after the diagnosys of ASL… and they had been the best years of My Life. He teached me a Lot, He was An example forse all My family. Please never give up, smile for your dear

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  4. Adam,
    My husband of 31 yrs was also diagnosed at the Mayo Clinic, I can’t remember the exact date, but he had experienced many symptoms & had gone to different doctors & had many tests. The neurologist that did diagnose him had tears in his eyes. He went thru a 1 yr clinical trial, but to no avail 3 yrs later he was gone at 51 yrs old. He was a fighter & tried his hardest to live life to the fullest. My thoughts & prayers to you & your family as you go thru this horrific disease.

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  5. My brother was diagnosed 4 yrs ago. Went to see him this year and he has lost so much. Has a great attitude, however. Its such an awful disease and we all feel so helpless. I pray they find a cure soon.

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  6. I lost my daughter to ALS almost 4 years ago at age 52, leaving a 12 year old son. It is a terrible disease I will never get over it but I pray everyday that a cure is found. She never lost her wonderful personality and died in her sleep the morning before her Dad died with pancreatic cancer. Our family was stunned. Plese help anyway you can to end ALS.

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  7. Watched my Dad die if ALS two years ago. It is the most inhumane thing there is, this ALS! It is cruel and takes you prisoner. I wish you content and prayers Adam! My Dad begged us to kill him while he could still write on a white board. This is a true awful disease. And yes death with dignity law is the way to go, if you could. In my state Calif. there was no Death with Dignity Law. It sucked the life right out of my Father. I will pray for you Adam

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  8. My heart breaks for you and your family. It breaks every time I hear a new diagnosis. Brought back a lot of feelings you are going thru. My husband fought this disease but his spirits and our faith brought us thru it all. It’s been quite an experience and I’ve learned to appreciate life an entirely different way. May you enjoy the time you have, support each other when you feel down, and know that you will always be loved and that your family will be able to go on however difficult it seems. But most of all I pray you find peace.

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  9. I am sorry! My mother died from ALS and my niece is dying from it. She lives in CA and had made the decision to die. She is going on year 5 and is completely paralyzed now. I love her and stand behind her in her decision and am glad that CA passed the Die with Dignity Law so she can no longer suffer from this horrible disease. I will do the same if it strikes me but I will not wait as long as she did and I hope you don’t either. Godspeed…

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  10. My brother was a healthy man. He was a runner. Loved running. I will never forget him telling us that he had Lou Gehrig’s disease, and being numb. He believed God would heal him, and God did heal him the day he took him home. Prayers for all those who are diagnosed and those families who have lost loved ones. Prayers we find a cure for this terrible disease

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  11. Hi Adam, I was diagnosed with ALS in May 2014. I know how you & your family felt, take every day from now forward as a blessing. Do small things to get yourself through each day\week, go to the movies, the park and enjoy family & friends. I’m very lucky to be taking my daughter down the isle to marry her sweethart on Oct 1 2016. In 2014 I thought that would not happen, stay strong my friend. Take each day with a smile on your face & appreciate all the wonderful people that you have around & believe me it will take a different course than you are thinking. God bless & pray that they do find a cure !!!!

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    1. Loved your comments about living every day as a blessing. My husband lived that way before being called home to eternity with Jesus. He was a testimony to so many others. God Bless all the rest of your days here on earth, but keep looking up to your Eternity!!

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  12. Adam, you are brave and strong to write this; and I send prayers to you & your family. My husband died of ALS less than 2 years ago. Every day I wear an ALS bracelet in his honor and when people ask me about it, I educate them about the disease. It’s shameful that there are no new treatments since Lou Gehrig’s time but I keep hoping and praying for a cure. Stay strong!

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  13. My son Adam was diagnosed August 26, 2015. He was 27 and just got married January of 2015, before he knew. They are expecting their first child, a daughter, exactly one year to the day of his diagnosis, August 26, 2016. I’m heartbroken and was so distraught my doctor put me on medication. He is progressing slowly and I’m praying for a miracle. He can’t take the only medicine FDA approved, Rizzole. It’s supposed to slow the progression. It was the opposite for Adam, he took it for less than 2 weeks and he became increasingly worse, so he said he wasn’t going to take it anymore. Very good decision. He still drives and plays video games. His hands are curled, but he can still do a little bit. His wife is great and they moved in with me so he can have less stress. I love my son and wish i could take this from him and have it instead of him. He’s so young. I hope the best for you too. Keep the faith.

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  14. My heart goes out to you and your family. We lost our daughter at age 17 from this horrible disease. That was 14 years ago. Tears come to my eyes when I think of the struggles. Prayers for you to be strong

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  15. I too was recently diagnosed with ALS on April 28th. It’s a day I’ll never forget. Your letter touched me deeply. God bless us all.

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  16. It’s a sad fellowship we belong to. There is no “living with ALS”. What do I say to folks who say “hope you feel better”, or who like the lady at Social Security didn’t know it’s terminal?

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    1. David ALS took my husbands earthly life 4 years ago. When I would be sad at the thought of him dying he used to say, “Lola, we’re all gonna die”. His living days were such a blessing to everybody he was around. I don’t think he realized it. He knew he would be living with Jesus and was such a testimony to his belief. May God lift you up and may you Glorify God in your living days.

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  17. There are no words to describe the pain of being diagnosed with this disease. I lost my step dad two years ago this August 26th at the age of 52. He had it for 3 years. He died somewhat peacefully with a subdermal hematoma instead of his nightmares that he thought we happen. Your words and family touch my heart and I pray for your peace. Much love

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  18. Hold on a minute Adam. You’re not gone yet. I have received the same prognosis as you – 40 years ago. Life expectancy 2 to 5 years. I was then 43 years of age with wife and six children. It’s known here in Europe as: Motor Neuron Disease. The same as ALS/Lou Gehrig’s disease. My hands and arms are useless but for some unknown reason – the disease did not spread to the rest of my body. [Not yet] :-). In the beginning I was angry, bitter, infuriated and frustrated. Why me – I shouted. Now I can laugh at my inadequacies, because I know that I have survived a good life. I have lived to see my children and my grandchildren. They tell me now that I have a slow form of the disease! Why the hell did I not tell me that 40 years ago??? I will support you Adam in whatever way possible. But don’t you just give up. Enjoy every day you get up. That’s the key! Andy McGovern. ~

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  19. Hi Adam❤ My family knows Lou too. My dad had ALS. Though my mom was his main caregiver, I was a caregiver too, as were all of my siblings. I moved back home to help and cherished every minute of it even though it was hard. From one ALS family to another, I wish you and your family courage, love, peace and strength.

    You said you laugh a lot and that’s great — I still remember all of the laughs, even the ones that happened because of the disease. When my dad couldn’t move, I’d tuck him in at night and ask him if he wanted the sheet on, and if he said no, I’d ask, “You don’t want no sheet?” in a funny voice (dumb joke but we laughed almost every night at it). And training on the hoyer lift by cranking up your family members can be a riot — we were pretty clumsy at first but totally got the hang of it. I remember it now fondly. You will still have so many good moments, even among the bad.

    Please know that you’re not alone and that other families like mine know your struggle & are with you even though we may never meet. Sending you so much love.

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  20. My dad was diagnosed in February 2016 There’s nothing else in the world that can rock your world like hearing a loved one – a dad, sister, wife, brother, mom, husband has this horrible and unimaginable disease. I hope you and your family find and continue to have strength, love, and support amongst one another. We are also in Colorado and praying the Die with Dignity law passes so my dad may take his final breaths at home and when he wants to.

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  21. My late husband and myself also got the diagnosis of his ALS on my birthday. He was diagnosed on Dec 30th, 2005. Bill passed on June 28th, 2010. Yes this disease is horrific, however thru his journey I learned the true meaning of love, unconditional love. I learned how to appreciate what is important in life as we are not promised tomorrow. Enjoy every moment you can enjoying your wife, children, family and friends. Nothing but prayers and love to you Adam.

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  22. Hey Adam, I’m not going to say I am sorry to hear of your diagnosis. I will say this live your life to the fullest and don’t give up on life. On April 17th 2012 that was when I received my death sentence. I have been dealing with ALS since that sentence. I was 52 when I was told that I had 2 – 5 years to live maybe. It started in my left hand and now I am paralyzed from the neck down. I can still talk, eat but my breathing is at 36%. I am working hard getting the awareness out there about ALS. Who better can do that then me and you. You will be surprised the number of people that don’t know what ALS is.

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  23. Adam, my heart breaks for you and your family. My husband was diagnosed last October. Through your ALS clinic and your local ALS chapter you will find many resources, support groups, loan closets. We have had motorized wheelchairs, hospital beds, and so much more loaned to us. Be strong, live each day to the fullest, enjoy your family.

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  24. Adam, your story really touched my heart and I am praying for you and your family! I just lost my husband 4 months ago and I wish he looked at life the way you do. Enjoy life to the fullest. You are strong and I know you are loved by many! God Bless you and be strong!

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  25. Really touching story. My dad had this terrible disease…. I live in Canada and I also think our government should do more for to fund research. Be strong.

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  26. Peace to all who are touched by this terrible disease. I miss my dear husband every day since his passing after only 1 year from diagnosis. Don’t wait a second for anything. Kiss your spouses and squeeze your babies every moment of every day.

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  27. Thank you Adam for sharing your story! I’ve been where you & your wife are right now. My husband, Steve first got sick in 2003 but wasn’t properly diagnosed until 2009. We were both devastated but also relieved that at least we finally knew what we were dealing with. Our journey had many ups and downs but through it all our faith in God grew stronger. He gave us the courage and strength to fight the battle! We got involved with our local ALS community and we’re able to both give and receive support. We both decided to stop taking life for granted and not to dwell on what he couldn’t do anymore, but to focus on what he could do! Steve passed away in 2012. I miss him everyday but now keep his memory alive by continuing to advocate for this disease and support those fighting their battle! God bless you & your sweet wife Adam! Yall are in my prayers! ❤

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