Meet the ALS Family 

I want to tell you a little bit about my relatives who have had ALS. 

From top left going clockwise.: me, Cousin Peter Stephenson, Aunt Patty, and my mom

First my Aunt Patty got sick. She was my mom’s little sister. She was a cloistered nun in Connecticut when I was little and I remember visiting her and only being able to speak to her through a grill with pretty small openings. She left the convent and moved to Columbus, Ohio and became a teacher of blind children. I remember her big Braille books. I remember she also had two dogs. Once when she visited us in Oak Park, Illinois, she helped my mom make dinner. I don’t remember the main course but the side dish was peas. Aunt Patty played a trick on us, because the peas were candy peas! I don’t have information about how her ALS started but it progressed very quickly. 

Aunt Patty, Patricia Leary, Memorial Day 1991, Columbus, Ohio. She was 53 when she passed away on November 7, 1991.

My mother, Ellen Leary Saunders, was a dietician, or nutritionist as they are called now, out of college and she worked until she became a mom. She had 6 kids and was a stay at home mom.  Throughout my childhood, she did keep up her membership in the American Dietetic Association (now called The Academy of Nutrition and Dietetics) – I remember loving the brightly multicolored spines of the journals on a bookshelf. She enjoyed tennis and needlepoint. 

A beautiful pillowcase made by my mom
A needlepoint chairseat in my bedroom that my mom made – I even remember her painting the chair

My parents divorced when I was a senior in high school. My older brother, Tom, was in college, 2 of my sisters were also in high school, and my youngest sister and brother were in elementary school  (K through 8). In April of my senior year, my brother Tom died in an accident.

After this devastating year, my mom went to work at a local bookstore, Logos, owned by her good friends Bob and Marietta Walsh, where she was the greeting card buyer. 

Three photos sent to me from my childhood friend,  Julie Walsh Fabrizius, whose parents owned Logos Bookstore. The photos are from a book they created  when the store closed. The inscription on the cake is from a card that my mother had ordered many times because it was so popular. It does describe her well.

At the same time that she worked in the bookstore, she was going to a local college, updating her nutrition degree so she could go back to work in her chosen field. She worked as a hospital dietician, and also did weight loss counseling at the local Y, until she couldn’t work due to ALS. She had her first symptoms shortly after her sister died. Her ALS started in her arm, and was first thought to be carpal tunnel because she used computers and other devices at work repetitively.  She came out to Reno for our wedding in May of 1992, and my brother, Pete, remembers she had trouble with her leg on the trip home. I am glad that Stan got to meet her before she was really sick.

My mom with ALS, and her brother Phil, visiting from Connecticut
Mom with her two main caregivers, Pete and Cath, and Stan and me on a weekend visit.

My mom died in May of 1994 at age 62, so her ALS progressed quickly too.

My second cousin, Peter Stephenson, had his first symptoms in 2000. He is the son of my mom’s first cousin. His started with his hands atrophying when he was 52. He lived in Europe and had very high level computer programming jobs. At first they also suspected carpal tunnel, but it turned out to be ALS. Within 6 months he was losing his speech.

My 2nd cousins, Lucy, Peter, Susie, Salli  (my mom’s God daughter), and Alec in North Carolina in 2002. This was the last picture of all 5 siblings together Their brother Chris died when he was a young adult.
Peter Stephenson (photos courtesy of Sarah/Salli Stephenson Jusko)

Peter died in 2004, at age 56, leaving two teenage daughters.

And then comes me, with an entirely different start to my ALS. I first had slurred speech at age 55, then trouble swallowing food, then a gastric feeding tube. But it has not progressed to my limbs yet so I am able to be pretty active. I will be 57 in June.

My mother’s DNA was preserved and she was determined to have the C9ORF72 gene mutation. I will submit a blood sample for testing next week and once it is confirmed that I have the same mutation, I will participate in a clinical trial to learn about how this gene mutation expresses itself differently in different people, even in the same family. I figure this is the best contribution I can make to my siblings, my son, and cousins. It is the first step to finding a cure.

6 thoughts on “Meet the ALS Family 

  1. Meg, thank you for sharing Your family history with ALS. I remember your mom very well. She was an inspiration to me when I was a young mother. When I took care of you & your sibs on week in 1968, I learned a lot about family & caring for children. Your moms organizational skills were amazing! I like to think that what she taught me in one week, prepared me for managing my own family years later. Her detailed notes on each of you were the basis of what I left for my children’s sitters. I’ve followed your progress through my reconnection with Linda & am so glad to see how each of you have become the adults your mom would be so very proud of!

    Liked by 1 person

  2. Meg, thank you so much for sharing your family and this illness with us. You are such a brave and admirable person I’m glad I know you. Love you!

    Liked by 1 person

  3. Beautiful memories Meg. So sad that all were they were all so young. You are still vibrant and vital, and have many more memories to make, hopefully a contribution to a cure for this terrible disease. Lots of love to you all.

    Liked by 1 person

  4. I am so glad we met, and that I am getting to know your family. Thank you for sharing your journey of altering lifespectations. I am in awe of your strength, and I am so enjoying your favorite memories. See you soon. Sending strength, positive thoughts, and lots of love.
    Carole

    Liked by 1 person

  5. Thank you, Meg, for having such strength! It is such an honor to be a member of your family. All my love, Susie (Suzanne Stephenson- sister of Peter Stephenson)

    Liked by 1 person

  6. Thank you, Meg, for your courage and openness. You’re an inspiration to us all! What a beautiful family! We read the Bible every morning and say a prayer for you and your family. My mother, now 98, thinks you must be wonderful ….she’s lost two children in her life and the last few years have been very challenging for her with many hospitalizations, heart attack and stunts, bone infections , knee replacement, etc. All we can do is approach each day with gratitude and appreciation…we have so many things to be thankful for and appreciate the moments of joy we experience each day…and we wish these things for you…
    We think about you every day and you are always in our hearts and prayers…
    Mary, Bob, Sarah and Trudi

    Liked by 1 person

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