All In for Margy
Submitted by Kenneth Arey
May 7, 2026
My name is Kenneth Arey, and I live in Andover, CT.
It was July 4th, 1939, when New York Yankees legend Lou Gehrig gave his unforgettable “Luckiest Man on Earth Farewell Speech” at Yankee Stadium after being diagnosed with ALS just 2 weeks earlier. He died 23 months later at just 37 years old. His nickname was the Iron Horse for being able to play through injuries and compile a consecutive games played record of 2130 games in a row, a record which stood until Cal Ripken surpassed it. Gehrig’s record is still 2nd on the list, ahead of the 3rd place by over 800 games. ALS put an end to Lou Gehrig’s consecutive games played streak that seemed unstoppable. That was almost 90 years ago. Nothing has changed since. Every diagnosis is still fatal.
My wife’s name is Margaret Faasen Arey. Everyone called her Margy. Whenever I hear the words “Margy’s husband Ken,” it just fills me with such pride and joy. When we met 29 years ago, I was 36 years old and had sort of given up on meeting my soulmate. Well, I did, and Margy turned my world from bland black and white to an amazing Technicolor world previously unimaginable to me. She was incredibly supportive, caring, loving, uplifting, and never at a loss for an adventure or project. She had a sense of humor greater than anyone I’ve ever known. She had the most beautiful smile, wonderful jewel-like blue eyes, and hair that was the envy of all. Margy’s accomplishments, contributions, and impact are too numerous to list here. She was the most amazing mother to her two children. Her son Brad is now a top-tier attorney in Houston, Texas, and her daughter Alycia worked at the White House under President Biden and has dedicated over 20 years to advancing clean vehicle transportation. She was a wonderful sister to her two siblings, sister Gwen and brother Jon. She was a cherished daughter, cousin, and special friend to many. Her passing from ALS in 2023, only 9 months after being diagnosed, has had such far-reaching effects.
Margy and I contracted Covid on Jan 1st 2020. We were too ill to attend a New Year’s dinner that day. I still wonder if that had something to do with her getting ALS. I’ve spoken to many Dr.s who said they didn’t know, but it certainly didn’t help. It was a long road to feeling better. Starting in 2021, Margy was having shortness of breath, trouble standing up for long periods of time, muscle weakness, fatigue, brain fog, had tripped and fallen a few times, and a number of other symptoms. Every Monday, on my day off, we would have an appointment with a different doctor to try to find out what was causing this. The guesses ranged from long COVID to Lyme disease to COPD to blood cancer, stomach and liver cancer, a brain or spinal cord injury, and others. Hearing these possible causes was dizzying and frightening, only to have them dismissed, leaving us scared and exhausted. Her primary care Dr. would just shake her head in bewilderment after each diagnosis was dismissed. It turns out that she had never had an ALS patient before. Margy was always brave, courageous, completing test after test, both of us thinking that whatever it is will be solved, and some kind of treatment will make her well again.
She had fallen a number of times, but in Jan 2023, when she was getting in the car for me to take her to work, she couldn’t safely drive herself anymore; she fell and broke her ankle getting into the car. Her orthopedic Dr. finally said you have to go see a neurologist. We told him we had tried, but they wouldn’t see us until all other possibilities were ruled out. ALS is a disease of exclusion where everything else is ruled out 1st. He said that he knows a neurologist over at the UConn hospital in Farmington and could get Margy an appointment there. After a consultation and eventual EMG that tests your nerve signals, an ALS diagnosis was given. We drove home that day in complete silence. There were no words. That was the last possibility we ever expected to hear. In the coming weeks, we will meet with a Dr. at the Hospital for Special Care in New Britain. Certainly, after all this, we thought that we would get some kind of treatment or medicine that would reverse this awful condition. There were 3 medications at the time that were approved to treat ALS. That number is now 2, as one was shown to be ineffective. The Dr. told us that the 1st medicine could possibly add 8 weeks to Margy’s life.
I thought I heard it wrong, as I thought he must have said 8 years or 8 months. No, it was 8 weeks, maybe.
The other 2 medications had not been studied long enough to predict if they would help. Margy was approved for all 3, which isn’t always the case. We were hopeful. It turned out that maybe they work for some patients a little, but they did nothing to help my wife’s condition.
We both had to stop working, living off our savings and help from family with expenses. ALS devastated finances. It is one of the most expensive diseases to grapple with. I became Margy’s primary caregiver until she went to hospice a month or 2 before she passed on December 9th, 2023, only 9 short months after being diagnosed. It was heartbreaking to see my amazing wife Margy suffer all the awful impacts of this disease’s relentless progression.I still wake up at night with nightmares and think I need to check on Margy.
My wife still had so much life to live. She was the center of our family’s universe. She was and is my other half. There is an unimaginable emptiness now, but her light, wisdom, and love still shine bright. Her joyous laugh still echoes.
So I hope this sheds light on the lack of any meaningful treatments and the crushing weight of what an ALS diagnosis still means almost 90 years after Lou Gehrig’s passing. The need for expanded funding, research, and support for the patients and families currently living with ALS has never been more urgent.
ALS is not incurable; it is underfunded. I hope and pray for a day when no one has to go through what Margy, I, and our family had to endure.
I consider myself the luckiest man on earth to have had my wife, Margy, beside me as my constant companion and wife since we met over 29 years ago.
