Every Memory Adds Up

Megan Wilkerson lost her father, Dr. Walter Root, to ALS earlier this year. Her family’s story was recently profiled in a feature article in the San Antonio Express-News. In her #EveryDropAddsUp story below, Megan describes the value of the memories she was able to make with her father and family after his diagnosis.

My dad lost his battle to ALS on May 31, 2016. I had known this day would come since his diagnosis on January 5, 2015. We had our suspicions something “bad” was happening with Dad, but ALS was something that happened to ‘other people,’ not us. I had become aware of the disease due to the Ice Bucket Challenge in Summer ’14, but had NO idea what would lie ahead.

Our family decided to embrace the diagnosis and enjoy our lives together. Since there is no cure or effective treatment for ALS, we knew the likely hood of him being “cured” was dismal. My dad chose to live with his disease, even though we lost him a little each day. He traveled, he loved, he laughed, he lived. I can honestly say (with many tears) he lived 100 years in his 59.

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We spent thousands of dollars over the 17 months of his illness making memories that I will truly cherish with my family forever. When he had pneumonia, I frantically flew out (from California to Texas) and left my career and family behind to be by my dad’s side while he was in ICU. This was one of my favorite memories because even though we were terrified of the outcome, we laughed more than we cried. He couldn’t talk, but we had more meaningful conversations that week than we had ever had before. I was allowed the opportunity to truly care for him. I slept on a plastic couch in gloves and a gown for a week, only going to my parents to shower and change. His face would light up when I would come back. Every morning I would go get coffee and oatmeal from the cafeteria and we would watch the (bad) news together. It wasn’t much, but it is one of my favorite memories. He was a functioning quadriplegic, with a tracheostomy, on bipap, eating from a feeding tube – but he was happy.

Although my story doesn’t have a happy ending, it had some amazing moments that, if my dad was not terminally ill, may not have happened. Our family was given the gift of time and memories. I encourage everyone to embrace the moment, make memories and live like you’re dying. Life is so much better when you appreciate every moment!

I vow to spread awareness and hope to find a cure. Nobody should have to watch their loved one suffer from such an awful disease with little hope.

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!

12 thoughts on “Every Memory Adds Up”

    1. So sad to hear, concidering it is said that it is only 10% chance of being heredity.
      My husband had it 2 yrs before diagnosing at age 55 in earlY 1991 passing away 6 MO later that was so very hard on us all. Unfortunately there was so very little education on this disease. Even Dr’s were not sure what to do to bring comfort.
      So I wish to say much respect to you an your family for living it so many times over with so many family members with same disease


  1. Hi Megan, thank you so much for sharing your story. Sorry for your loss. My husband age 55 was diagnosed with ALS just 3 weeks ago, and like your story each day brings a new challenge. Like your family we are choosing to live everyday to the fullest and find joy in the time we have together. We are not giving up on a miracle! Bless you as you find a new normal in your life with the beautiful memories you have of your time with your dad!


  2. We lost Mom from ALS in 12/15 at 61. I had wished we could make her remaining time full of wonderful memories, but her fear kept her housebound for over 2 years. We worked hard to keep her at home per her wishes, and she passed in peace at home. Everyone handles it differently depending on the varying symptoms (Mom was in extreme pain and had dementia). Thank you for sharing your family’s journey


  3. Bless your hearts!! Your story brings me to tears. I am a 49 (almost 50) year old mother of 5 and I am living with ALS. I was diagnosed in September of 2015 when my speech started to become slow and slurred and my left arm began twitching nonstop. My husband and I had only been married for 2 years at that point. I had to give up a career that I loved 2 months after my diagnosis due to the decline in my ability to speak clearly; we had 3 kids in college at that point, but we decided that despite our loss of income and increase in medical bills that we would do all we could to make memories with our kids. It’s been almost a year since my diagnosis and while ALS has taken my speech and my left arm it has given me so much more! My faith is stronger than ever, I live in the moment/present, my spirit is strong and I have spent more time with my family and friends than I ever could have while working full time. I count my blessings every single day; I wake up in the morning, lift my worries up in prayer and go about the day with Joy in my heart. I have hope for a cure for ALS and while it might not happen in my lifetime, I pray that researchers find a new treatment/cure.


  4. Sorry for the lost of your dad Megan. I’ve lost my beloved hubby of 22years who had succumbed to ALS, on 8 Jan’16, after fighting this disease for 4years 8months.
    Believe they are in a better place relieved from all pain and suffering. My thought are with you.


  5. I’m happy for you that you created good loving memories! My Dad lost his battle to ALS in 1990. He was a tall lean man and a very hard worker, a good provider for his family. When he was diagnosed in March, he didn’t know what ALS was and when the Drs. explained to him what his journey ahead of him was he couldn’t accept it. He passed away in July, I helped my Mom take care of him. We kept him at home but had to put him in a nursing home, which he was only in there a month before he died.. I pray every day for a cure for this devastating disease.


  6. Oh Megan, I too lost my daddy to ALS May 3, 2016. Only difference was, my dad died a month after being diagnosed. He chose not to do a feeding tube or trach. Like your family, we knew there was no cure. We watched my dad go down hill for several months before finally getting to the right doctor. We had seen 3 Neurologist and Internal Medicine Doc before he was finally diagnosed. First 2 Neurologist blamed his symptoms on his Neuropathy, and laughed when we told them we were concerned about ALS. I’m blessed with a very healthy mom, sister and brother. Like you, we never left dads side. We were with him through it all. We were there when he took his last breath. It was very peaceful and I find comfort in knowing my dad is no longer suffering. I miss my dad every day. I treasure all of the precious memories I have with him and the rest of our family. He was loved by everyone that knew him.
    LR Holley was a very courageous, Christian man, loved his family so very much. ALS is a very ugly disease. I pray every day fior Dr’s to become more aware of signs and symptoms. And I believe that someday there will be a cure for ALS.
    I Love you daddy, and miss you so very much!


  7. My sister was diagnosed in January. We “hear” she has ALS , we know she has ALS, I don’t know that we accept that she has ALS?! I am taking her for OT/PT for balance problems because she is loosing use of her limbs. I just feel like I have to do everything I can possible for her but I don’t want to smother her. She is my best friend as well as my sister. We are fortunate to still have our elderly parents alive, which is a blessing. They don’t understand about her illness but that’s ok too!
    I don’t know at what point does it settle in? I won’t ever give up hope! But I would like to hear from those who have travelled the road before me what to expect and any suggestions!
    Thank you and God bless!!!!


  8. My husband of 55 years died of ALS May 3rd, 2016 after being diagnosed April 5th, 2016. We knew something was wrong but two different neurologist told us it was neuropathy. We knew it was more serious but couldn’t find out. We done traveling in our RV, with him driving, that we wouldn’t of done had we known. This is such a terrible disease. He lost use of his limbs early but didn’t Lose his speech until toward the end. So thankful for the years we had together before the terrible disease took his life


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