In recognition of ALS Awareness Month, we’re sharing many new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the second profile in that series.
Also, The ALS Association just launched three new public service announcements (PSAs) highlighting what life is like with ALS, and we’ll be promoting them throughout this month to show “The Reality of ALS.” Each PSA focuses on a person living with ALS, including David McClain, who is featured in “A Few Words.” (Watch it here.)
David is originally from Rockwall, Texas, and is now on what he calls “an extended stay in New Haven, Connecticut.” He has lived with ALS for more than 15 years.
Until ALS robbed him of his career, he spent 25 years working in sales for a steel company. He and his wife, Donna, met 33 years ago and were engaged after dating two weeks.
Today, Donna is David’s full-time caregiver.
“There are no words that can describe the love, gratitude, and appreciation I have for her,” said David.
He and Donna are the parents of three, parents-in-law of three, and grandparents of six.
“I learned I had ALS when my daughter was starting high school. I didn’t know what the future held for me. I’m blessed to say I’ve been able to watch her graduate high school and college,” said David.
“I’ve also been able to witness all three of my children marry and begin their families — all of which I didn’t know I’d ever experience,” he added.
ALS has taken away David’s ability to walk and to talk, but he uses an eye gaze machine to keep in touch with friends in the Internet and to communicate.
He said The ALS Association’s theme for National ALS Awareness Month – Raise Your Voice – means finding a way to educate others about the disease.
“After all is said and done, people don’t see the day-to-day struggles that someone with ALS encounters, [so] it’s important to keep raising our voices louder and louder, continuously,” he said. “Although I physically can’t say the words that need to be heard, I hope my story and my testimony can be used to help find a cure for this debilitating disease.”
Below, read David’s wide-ranging interview with us – facilitated by his daughter-in-law, Ashley – and then Raise Your Voice with us to join the fight against ALS.
David, what were your first ALS symptoms and when were you officially diagnosed?
In 2003, my speech started to slur, and I began to notice some weakness in my muscles and imbalance when I walked. I visited several doctors without any definitive answers for my symptoms. Eventually, I went to Yale and was given the diagnosis of ALS, with a two- to five-year life expectancy.
My wife and I were devastated by the news and the realization of having to tell our family. We knew we had to stay strong and rely on our faith to get us through. Over time, I lost the ability to move and became bedridden.
I’m now paralyzed from the neck down and fed through a feeding tube and only have the ability to blink my eyes. But, despite my circumstance, God has answered our prayers. Fifteen years after my ALS diagnosis, I’m still kicking and screaming (not literally).
Please tell me about your personal interests before and after your diagnosis.
Throughout high school, I played football and basketball. I also participated in swimming and gymnastics. I loved to go camping, hunting, and fishing. I enjoyed playing on our church softball league. I trained in Tae Kwon Do for 12 years and was a second-degree black belt.
I’m unable to perform any physical activities now, but I enjoy watching the sports I previously participated in and visiting with family and friends. With the help of my eye scan machine, I can listen to music and audio bible readings.
I also use the eye scan machine to stay in touch with friends via the internet, though it’s becoming more difficult due to the weakening of my eye muscles.
I’d love to hear more about your family. What can you share about your wife and children?
Donna has been by my side every step of the way. Our son, Josh, is married to Ashley; our son, Ben, is married to Mimi; and our daughter, Kathleen, is married to Jeff. Our children have blessed us with six “grandcritters”— Leigha, Colton, Sienna, Naomi, Shiloh, and Eden.
In addition to Donna, who are your caregivers?
Each of our children and their spouses assist in providing support to my wife for my care, along with some other relatives, including our parents and close friends.
I’m also cared for by a registered nurse, home health aides, a massage therapist, a respiratory therapist, and even a chiropractor. They come to my home throughout the week. And several of my doctors make house calls.
What is your personal mantra or guiding principle?
My personal mantra is “There is ALWAYS hope.”
The greatest influence in my life is the Bible. The verse that inspires me the most is Isaiah 40:31 It says, “But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”
As you know, throughout this month we’ll be launching three new public service announcements (PSAs) highlighting what it’s like to live with ALS. You and Donna are the featured “heroes” in one of them. What was filming like?
It was a very exciting experience. Donna and I are grateful to be able to put a face to ALS and share my story.
How does The ALS Association support you and your family?
The ALS Association Connecticut Chapter has provided continued support to our family, including setting up various equipment needs, van rentals, and financial support. Aside of those tangible items, we’ve gained so much moral support through the Association. They’ve gotten us through some very rough times and we’re grateful for everything they’ve provided to us.
What would you say to someone who is newly diagnosed with ALS?
The only way I’ve been able to get through this journey is through my faith and through God. Without faith, there is no hope. With God, there is always hope.
When you’re initially diagnosed, you feel hopeless. Keeping the faith will get you through.
What do you want to say to the people reading this article?
Regardless of how high the mountains seem to be before you, or how deep the valleys may appear, whatever the heavy weights are that pull you down, or whatever the worries are that cloud your mind, know that God loves you and He knows exactly what you are going through.
Give it over to Him! As for me, be not upset but rejoice with me. Death just brings life for eternity. I’ll see you on the other side.
If there’s anything else you’d like to share with us – a story, a memory, a word of wisdom – please do it here.
Happiness is based on circumstances. Even though I’ll always be a [Dallas] Cowboys fan, I remember listening to an interview with Tom Brady (quarterback of the New England Patriots) after winning his third Super Bowl ring. He said he still felt “empty”, like something was missing, and that there must be more.
For me, true happiness, joy, and fulfillment doesn’t come from “things” on the outside, but rather from a personal relationship with Jesus Christ on the inside. The joy of the Lord is my strength and it’s that strength that gets me through each day.