‘I’m going to keep enjoying life as long as I can’
A hospital bed sits pretentiously in one corner of the basement. Its camouflage-print bedspread does nothing to hide the reason for it being there.
A mom prays every day that her son would not have to sleep there, in the finished basement of her Grandville condo.
His life should be different, she thinks. She wishes, hopes, prays that there could be a cure. But ALS marches on in her son’s body, taking his muscles as prisoners, his strength as its prize.
Todd Alward, 57, was an avid outdoorsman. He hunted, fished and exalted in nature. Now, other than doctor appointments and an occasional journey out, his life exists in a wheelchair, within these four walls. The basement’s daylight windows give a glimpse of a pond and the outdoor world in which he once thrived.
A motorized stair chair brings him upstairs, on days when his legs are strong enough to venture there.
It’s been two years since Todd first heard the ALS diagnosis from Paul Twydell, DO, a neurologist at Spectrum Health Medical Group. Two years of wondering which muscles will shrivel and be rendered useless next. ALS, or amyotrophic lateral sclerosis, is a progressive degeneration of nerve cells in the spinal cord and brain, involving complex genetic and environmental factors. Also known as Lou Gehrig’s disease, it’s one of the most devastating muscle and nerve disorders.
Despite a prognosis that doesn’t look like it’s headed for a happy ending, something amazing is happening within Todd’s being. As his physical body weakens, his connection to a deeper sense of purpose flourishes.
You first notice something in his eyes. The blue-gray irises that could be clouded with sorrow and pity instead sparkle and shine.
His mom sees it, too.
On a recent spring day, Todd, June and Todd’s sister, Leisha, sat in the basement to share their story.
“He just keeps on smiling,” June said. “He’s an inspiration to everyone around him.”
June is not in denial. She knows the prognosis for ALS patients after diagnosis—three to five years.
Todd may be past that already. Looking back, he sees signs—like when he first noticed he had trouble pulling back the string on his bow. Like the leg cramps that woke him in the night. He figures ALS may have started in his lower extremities about five years ago.
“They say three to five years,” his sister said, while sitting on a green leather couch next to Todd in his wheelchair. “Anything after that is a blessing.”
Dr. Twydell said Todd’s illness is progressing.
“As with almost all cases of ALS, Todd’s prognosis for survival beyond three to four years is poor,” Dr. Twydell said.
But there are outliers, he noted, and some patients can live 10 to 20 years or longer.
“These patients are obviously the exception,” he said. “We also know that just coming to a multi-disciplinary clinic like ours has a greater impact on survival than with (drug) treatment alone.”
Every three months, Todd attends Spectrum Health’s multidisciplinary ALS Clinic, where he sees a respiratory therapist, social worker, speech/language therapist, rehab specialist and neurologist.
He said the visits are a pleasure because everyone is so positive. That kind of attitude works in Todd’s favor.
“He has served as an inspiration to others, not just with ALS, but also with other chronic conditions,” Dr. Twydell said. “He has certainly touched the lives of many and helped bring better awareness to a terrible disease, which is in dire need of a cure.”
‘It just came out of the blue’
Todd’s first solid signal that something serious was going on arrived March 23, 2013. He was driving a Lumbermen’s Inc. truck on I-96 near Howell, Michigan, delivering a door.
“I had like a little blackout,” he said. “I got off at the exit and noticed my right foot was kind of falling asleep. I thought it would go away.”
He delivered the door, but the funny feeling in his foot and leg persisted.
“Once I got home from driving all day, I went to get out and I had trouble walking,” he recalled. “I couldn’t stand on my tippy toes. That’s when I started realizing something was wrong. It just came out of the blue.”
He tried conventional therapy and a chiropractor, but noticed his left arm was growing thinner. And weaker.
“I hunt,” he said. “I shoot with a bow. All of a sudden my accuracy changed. I flung an arrow into the wall.”
His body continued to grow weak. His marriage fell apart. He moved into his mom’s basement a year ago, about the same time his body would no longer allow him to work at Lumbermen’s.
But through it all, Todd keeps smiling. He even has a Facebook page called Todd Alward, Keep Smiling.
“I want to deal with all of this in a positive way,” Todd said. “It’s so important to keep smiling, keep laughing and share smiles.”
Each day his muscles lose ground. He can no longer lift his deer rifle. Or reel in a fish.
“As the muscles go away, you lose your walking ability,” he said. “And you can’t grab things. Trying to pick up a jug of water is real difficult. But I’ve just been taking one little thing at a time, just adjusting in your mind and thoughts as you go to take it positively.”
An alarm rings as Todd finishes a sentence.
June grabs his pills. He puts them in his left hand, and with his right hand, laboriously pushes his left hand to his mouth.
Nothing is easy these days. He often needs help dressing. He can’t put his own pants on.
When Todd talks, he has to remember to pause and consciously take deep breaths. It’s the only way for his body to absorb enough oxygen. The disease is capturing the muscles necessary to breathe properly, and effortlessly.
It will progressively get worse, the doctors say. A tracheotomy may prolong his life. But Todd doesn’t want artificial measures.
Todd says he’s not in much pain. The medicines take care of that. It’s not like the initial days when the leg cramps were so bad “it would just make you bawl. But now, I’m really fortunate.”
Todd is focused. Driven almost. In tune with something not visible, but something somehow evident in his outlook.
Almost a decade ago, he attended a Promise Keeper’s meeting. His life changed, he said. His perspective, too.
“I took God into my life and that’s where this positivity comes from,” Todd said. “You see things in a different light. And special things pop into your life that you otherwise might have just overlooked.”
He speaks not of his own trials during this two-hour meeting in the basement, but more about those who are helping him trudge through them—the overflowing crowd (450-plus) at a recent benefit gathering for him, the Lumbermen’s crew who paid for the stair lift and are building a handicap ramp outside the condo, Alternatives in Motion who built not one, but two custom wheelchairs for Todd—one for indoors and one for outdoors.
He can’t participate in outdoor adventures like he used to. But last fall, he was treated to a bucket list excursion by The Tom Siple Foundation—hunting elk in Pennsylvania. He got one.
And last summer he went fishing for salmon on Lake Michigan.
But there’s one outdoor moment that shines above them all.
He was hunting in the woods after a rainfall, basking in a setting sun. He took aim at a partridge. The sun came out and the woods became a sparkling aura of rainbow colors.
“The leaves, the whole woods where I was sitting was like a rainbow,” he said. “It was so beautiful. I was just sitting there and I was praying. I thought, ‘Wow, this is like heaven, right here.’”
Todd seems more grateful than most for living, perhaps because he’s not afraid to die.
“I’m just going to keep enjoying life as long as I can,” he said. “There are so many advanced measures that can keep you going. Some people want to lie in bed longer and look at the ceiling and last another year or so. I don’t want that. That’s not important to me. What is important to me is to go to that better place.”