By Cathy Speck
It was 1971, in Davis, when my mom and dad asked us kids to sit down at the dinner table for a serious discussion. My parents had nine children, with four of us still living at home. We were a happy, active, warm family, and my mom had always been robust and lively and immune to even a cold or flu. Or so it seemed.
For about a year, she kept going to the doctor with mysterious symptoms. Nothing seemed too horrible, doctors said. Probably bursitis or “tennis elbow” or “hitchhiker’s thumb.”
But that evening, when we all sat down and passed around a light blue brochure, we learned that mom had Lou Gehrig’s disease (amyotrophic lateral sclerosis). We were told that she had a terminal disease and that she might live two to five years. She was only 50. We walked on.
We also found out that my mom’s aunt, Mary, died of ALS at the age of 54, and that the disease wasn’t hereditary but could run in families. I refused to believe that anything could kill my mom. I walked on.
She died Dec. 19, 1972, I was 13. My family and the community were devastated. And our lives were changed forever. We walked on.
On May 6, 2008, my second-oldest brother, Larry, was diagnosed with ALS. He died on June 22 that same year. He, too, had been misdiagnosed for quite awhile. Larry was willing to help researchers with familial ALS studies. Other siblings and cousins also sent in their blood. We walked on.
I felt like I had been “studying” ALS since I was a teenager, and I wanted more than anything to help find a cause and cure. I sent my blood to Northwestern University in Chicago. I told them I would do anything to help. I also contacted the Sacramento ALS chapter to see if I could help in any way. I walked on.
Meanwhile, I was symptomatic, and went to my doctor and three neurologists for this test, that test, everywhere a test test…. Then the news came the researchers at Northwestern University that my brother had a very rare ALS SOD1 mutation, and that I have the same one. I walked on.
Larry, my sister Susan and I had this “gut feeling” for decades that each of us would get ALS. Susan died in her sleep at age 40 in 1997 but had not been diagnosed with ALS yet. I walked on.
I’m not positive what my oldest brother Paul had been thinking before he was diagnosed in September 2009. That year was the Speck family’s first ALS Walk and it was the last walk Paul did in California. He and his family live in Bend, Ore., and they participated in an Oregon Walk to Defeat ALS with the team name of “The Specktators.”
Each one of my siblings has a 50 percent chance of inheriting the ALS genetic mutation. And even more horrific, the percentage does not decrease as the generations continue.
So here I am two years later, with my neck brace and walker decorated with wacky flair, fun toys and a clown horn, laughing loudly and smiling as broadly as ever. The progression in my family runs a bit differently, so the experts told me to look at what my relatives experienced to get some sort of idea of what to expect.
What I learned was to make different choices than they did. I choose to use oxygen and breathing assistance at night, and I sleep in a hospital bed at a 45-degree angle.They all died of respiratory failure, which almost happened to me in 2011 when I ended up in the Sutter Davis Hospital emergency room with pneumonia. I have lived twice as long as I expected I would. Whew! I walk on.
My heart goes out to anyone who is diagnosed with ALS without having any knowledge about this cruel and often devastating disease. Sadly, I can imagine how terrified, confused and frustrated they feel because that’s how we felt when my mom was diagnosed in 1971. She died less than two years after her diagnosis. I walk on.
Perhaps some of you reading this story have or had loved ones suffering with ALS. Sometimes getting involved can help a grieving soul. Go to an ALS benefit or awareness event or read about it online at www.als.net and www.alsa.org.
If you truly want to feel the positive energy of people with ALS and their caregivers, come on over to Raley Field for the Walk to Defeat ALS this Saturday. We chant, we cheer, we face ALS without fear. Well, maybe that sentence was just for the rhyme, since we do have fear, but we live with it anyway. Well, we live until we’re not living anymore. Oops, my gallows humor slipped in again.
My friends and I have attended the ALS Greater Sacramento Area Chapter support groups since February 2009, and I am so grateful for this opportunity. These groups welcome patients, their caregivers and loved ones. What a wonderful and diverse group of patients and caregivers, families and friends!
This journey has renewed my faith in the potential for humankind. The kindness, generosity, compassion and love being shown to me astonishes me. I do believe we all can create a better way for ourselves by combining our determination, love and hope for each other in the support group and in our day-to-day lives. This is a journey for us all, as our muscles become smaller and our hearts grow fuller. We walk on.
Thank you for reading this far, and for considering making a donation. Our family truly feels the support from our community.
— Cathy Speck is a longtime Davis resident.
You can help
What: Walk to Defeat ALS; look for The Specktaculars’ smiley yellow helium balloons
When: Saturday; check-in starts at 9 a.m., walk starts at 11 a.m.
Where: Raley Field, West Sacramento
Donate: http://web.alsa.org/goto/speckles or make checks payable to ALSSAC and write “Specktaculars” in the memo line; mail to ALS Association, Greater Sacramento Chapter, Attn.: Walk to Defeat ALS, 2717 Cottage Way, Suite 17, Sacramento, CA 95825
Info: email firstname.lastname@example.org