In a life he can only imagine, Todd Alward is cruising Lake Michigan in a salmon boat or treading through the autumn woods with a bow and arrow.
But Todd’s real-life environment is nothing like this anymore. It’s devoid of cresting waves and softly rustling leaves. There will be no fish fry tonight, and no venison to tuck in the freezer. He hasn’t the strength, nor the lung capacity, to reel in a hefty Chinook, let alone climb a tree stand.
A burgundy motorized wheelchair is this sportsman’s perch now, the lower level of his mother’s condo overlooking a small pond, his home.
Diagnosed with ALS more than three years ago, Todd’s muscles are growing weaker, his arms, legs and waistline, thinner.
The disease is ravaging his nerves and muscles, and turning a normally automatic action such as breathing, into a laborious task.
On this Tuesday morning, he awakens before 5 a.m. for an 8:30 a.m. appointment with Paul Twydell, DO, a neurologist with Spectrum Health Medical Group who specializes in neuromuscular medicine.
Like every morning, Todd has to stretch and exercise each muscle as he awakens, just so it will move. First his arms, raised as far as he can push them toward the heaven he so much believes in, then his ankles, his calves, his thighs.
After Todd wakes and stretches, his mom uses the motorized stair chair as a makeshift dumbwaiter to carry Todd’s breakfast downstairs. Not too many months ago, he could eat on his own. These days, she lifts the cereal spoon to his lips.
She helps him dress, put on socks and shoes.
A friend arrives to help Todd go to the bathroom then hoists him into the stair chair for a trip upstairs and transfer into another electric wheelchair.
Todd pilots his wheelchair out of the house and up the ramp into the silver Dodge van driven by his sister, Leisha, with June as a passenger.
A pleasant escape
It feels good to get out. It happens still, despite its difficulty.
Todd recently knocked off a bucket list item by visiting the Pro Football Hall of Fame in Canton, Ohio. His favorite player? Barry Sanders, a former Detroit Lions running back famous for juking defenders with elusive moves.
Does he feel a kinship with Sanders, because many believe he left way too soon?
After Todd, June and Leisha arrive in a patient room, a nurse takes Todd’s blood pressure: 152/112.
“That’s a little high,” June says. “Can we take it again later, please? The hospice people took him off his blood pressure medication.”
Dr. Twydell enters and shakes Todd’s hand.
Todd explains that he’s been experiencing some bleeding around his feeding port, which was put in as a precaution after his diagnosis. He hasn’t had to use it yet, but it’s ready for when his swallowing muscles give out.
“I’m getting roughed up when everyone is picking me up and moving me,” Todd explains. “It gets bumped and spun around in there. Sometimes when they go to pick me up it kind of yanks on it.”
I’m looking toward that better eternal life. Knowing you’re going to go somewhere else that is better than what we’ve got here on earth and believing. That’s what makes me feel good and confident in my heart and mind.
Dr. Twydell examines the port and determines it’s not infected, just that likely some small blood vessels got bumped and bled.
“How long is it?” Todd asks.
“About 3 feet,” Dr. Twydell jokes, before fending off Todd’s surprised look by holding his fingers inches apart.
“You look pretty good right now,” the doctor says. “How are you feeling?”
Taking his breath away
Todd explains that his breaths are harder to come by.
“I feel pretty good, but I’m just a smidge winded,” Todd said.
He details his symptoms when he was given morphine recently—headaches, ears ringing, swollen lips, swollen eyes. He couldn’t lift his right hand, the only hand that still works. He was depressed.
“Can you believe that I was crying?” said Todd, whose entire ALS journey has been backdropped by his “Keep Smiling” mantra. “I was texting a note to my son, telling him I wanted to be there to help him and for some reason it put me into the tear box. But we pulled out of it. Pulled out of it and put the smile back on.”
The smile. To keep smiling. To Todd, those are reflections of his faith, his belief that the afterlife will be more than OK, that he need not fear leaving this life and transitioning to the next.
His lips these days do more than smile. They frequently wrap around a mouthpiece ventilator, which he calls a “sip and puff.”
“I’m using this baby more often,” he tells Dr. Twydell, holding up the mouthpiece that provides oxygen. As he holds it with his right hand, his now defunct left hand sits limp on his lap.
“We’ve got to talk as this thing progresses,” Dr. Twydell says. “Fentanyl (a narcotic pain medication) will become part of the cocktail that keeps you comfortable.”
Todd says he’s noticed, little by little, that operating the wheelchair toggle with his right hand has become more difficult.
“I exercise in the morning but my arms are slow to get going,” Todd tells Dr. Twydell. “That’s just part of the disease, right? Just like my legs, they’re slowing down, making it harder for me to move.”
It’s harder to hold his head up, too. While in the doctor’s office, Todd tries on a neck brace that helps keep his head upright, which he reports makes it easier to talk.
June explains her frustrations. She needs more help. At slightly over 5 feet tall, June is unable to lift her son. That means needing someone to come into her Grandville, Michigan, condo whenever Todd needs to use the bathroom, get into a different chair or leave the house. Sometimes she has to call the fire department for lift assist. Other times, she prays someone she calls will be available.
“To keep costs down we’re trying to get hospice in as much as we can,” June says. “I have to have some strong person come lift him, move him.”
Visiting Angels visits several times a week to work on range of motion. They wash him and feed him. Hospice helps, but it’s not enough.
“That’s what tires me out—the worry,” June said. “When is he going to have to go to the bathroom next? Who am I going to get to help?”
During Todd’s appointment, Spectrum Health social worker Martha Van Dyken said she will make some calls to find resources to assist the Alwards. She’s one of a parade of specialists who enter the room on this day, including nurses and a physical therapist.
How much longer?
Todd loves getting out.
He goes out for lunch with his family after doctor appointments. Once in a while, he’ll find the strength to hang out with a friend.
But his most constant companion is the dreaded disease. It never leaves. Not from his body, and rarely from his mind.
The realities of the future sink in during the appointment. There are discussions about how long Todd will physically be able to attend doctor appointments. Is the family prepared that this could be the last time?
June pops pills into her son’s mouth, holds a straw to his lips, then wipes fallen water from his chin.
It was like this when he was a toddler, building fine motor skills. Now, it is like this again.
As if the action jarred June’s memory, she asks Spectrum Health physical therapist Michele Weaver how her little one is doing.
June remains in the memory of Todd’s childhood.
“I’m surprised he has the patience for this,” she tells Weaver. “As a child, he was the (most) on-the-go child I had. His feet never stopped moving.”
Now, his feet barely move.
Todd’s days here may be numbered, but he’s realistic. He’s anticipating the afterlife with the same smile that gets him through the difficult and painful days.
“I’ve been noticing in the last couple of weeks that breathing is harder,” said Todd, who does not want any advanced life support measures taken. “I’m looking toward that better eternal life. Knowing you’re going to go somewhere else that is better than what we’ve got here on earth and believing. That’s what makes me feel good and confident in my heart and mind.”
It’s an emotional conversation, one that walks the tightrope between hope and reality, today and forever.
“A lot of praying and guidance and answers from Him helps me fight positively,” Todd continues. “It helps me with losing my walking. I challenge it with a positive attitude instead of a negative one. It’s better in my mind to be positive. Then I feel better.”
Several days after the appointment, Deb Kerkstra, a caregiver with Visiting Angels arrives to help Todd stretch.
She holds his right arm up, pulls on it, then bends it on top of his head. Next, she pulls his arm back, slightly behind his head.
“I’ve got to grit my teeth,” Todd says.
Next, Deb lifts both of his legs and counts to 10 Mississippi.
“Oh boy, here we go,” Todd says. “Now the blood’s flowing.”
Mark Dykstra, a friend from Todd’s 1976 Grandville High School graduating class who lives in the same neighborhood, stops by for a visit.
“Next we’re having our 40th reunion and we’re going to try to get Todd there,” Mark says. “We’ll see if it’s a good day.”
Mark is one of the people June calls when Todd needs lift assist. Or sometimes he’ll just stop in.
“Once or twice a day,” Mark says.
Todd’s mind drifts back to when the diagnosis was confirmed. He had been experiencing strange leg pains and losing strength in his arm when he’d try to pull back the string on his bow. When he tried to mow the lawn, his ankles would give out. Even as early as 2006, he remembers noticing one arm was smaller than the other.
Dr. Twydell broke the news on July 10, 2013. The three letters that would forever change his life—ALS.
“When he told me I had the disease, I sat back for a moment and decided with a smile ‘I’m going to do the best I can with it,'” Todd recalls. “I just kind of said ‘keep smiling.’”
It’s not only desirable to be positive in the face of the disease, it’s essential, he says.
“I want to be positive so I can enjoy my days, even if they’re tough ones,” he said. “I can keep smiling and keep a positive attitude in my mind and my heart. It’s no fun being depressed and crotchety and grumpy. You want to get that worked out of you if you feel that way and get to feeling good, especially with a disease that’s going to take you eventually.
“You want to leave on a good note. To me, that would be the best way.”