Embracing the Outdoors ALS and All

by Bill Norman on Mon, 2010-11-01 13:57

One family's determination to grab life's gusto

Martin Wallem, wife Cara and son "Little Martin" enjoy recreation in the great outdoors, thanks to adaptive equipment, determination, and help from family and friends.

For someone with ALS, Martin Wallem sure manages to do a lot of hiking — not to mention deep sea fishing and snow skiing. All with a little help from his friends and some innovative sports equipment.

Wallem, 40, received an ALS diagnosis in 2002, although his symptoms began a year before. He currently is able to move his eyes and some facial muscles, as well as grind his teeth. He communicates mainly via a low-tech alphabet board, in which he focuses on letters to spell out words.

ALS has not stopped Wallem, his wife Cara or 7-year-old son “Little Martin” from enjoying a wide variety of active sports. Cara says that prior to ALS, Martin was an avid outdoorsman who lived life on the edge.

“Hunting, fishing, scuba diving, sailing, backcountry snowboarding and skiing, ice climbing, bungee jumping, whitewater canoeing, you name it,” she says.

“Martin didn’t hesitate to scuba dive with sharks! He was and is a thrill seeker with a passion for the outdoors.”

A one-wheeled TrailRider, pushed and pulled by friends, gets Wallem to the top of peaks he once loved to hike.

Tied down and duct taped

Hiking (as explained by Cara Wallem) consists, first, of strapping Martin into a one-wheeled conveyance that’s a cross between a wheelbarrow and a rickshaw. Designed and built in Canada for the British Columbia Mobility Opportunities Society, the TrailRider, is really a three- to five-person rig because, in addition to the rider, other people are needed to push and pull it, often over very rugged terrain.

Getting Wallem settled in the TrailRider is about a two-hour job. He has a tracheostomy, a feeding tube and uses a ventilator 24/7. He’s also a 6-footer who weighs 190 pounds, so hoisting requires a portable lift. It’s important to get his head secured in a padded grip, and to ensure he doesn’t get cold, so he’s wrapped in multiple layers of clothes, blankets and mufflers, all tied down and duct taped.

Wallem’s vent stays positioned between his legs on hikes. “It’s strapped in along with a motorcycle battery for backup when the vent’s internal battery starts to get low,” Cara explained. She also carries a spare motorcycle battery in her backpack, along with a suction machine to remove any mucus that might build up in his trachea.

Those preparations, and the assistance of up to 30 friends, family and volunteers, have made it possible for the three Wallems to ascend some pretty impressive peaks in the mountains around their home in Epping, N.H. The most recent, in August, was 6,288-foot Mt. Washington, via an eight-mile ascent that included some 12 percent grades.

But hiking via TrailRider is only part of the family’s ambitious outdoor recreation itinerary.

Adaptive Sports Partners

Strapped into a Tandemski, Wallem cruises down the slopes with the aid of a pilot skier.

An organization that’s been of special help to the Wallems and their search for thrills is Adaptive Sports Partners (603-823-5232) of the North Country, in Franconia, N.H.

In addition to providing the TrailRider and volunteers to propel it, the company helps Wallem snow ski in another adapted contrivance called the Tessier Tandemski.

Once Wallem is bundled up warmly in what is essentially a recliner on skis, the “pilot” steps into boot bindings on the rear of the skis and guides it down the slopes.

Wallem loves it, said Sandy Olney, executive director of Adapted Sports Partners, adding that it’s joy such as his that makes volunteers happy to help people with ALS and other disabilities on all sorts of outings.

“The Wallems told me, ‘You make us feel alive,’” Olney said.

An eagle, a deer, a tear

Deep-sea fishing is on the Wallems’ agenda, too. On his last trip, off Kittery, Maine, Wallem boarded a 44-foot chartered fishing boat with the help of two portable 6-foot ramps — one leading from the dock to the boat railing and the other angled down from the railing to the deck — and four strong friends who helped jockey him and his power wheelchair (a combined weight of 650 pounds) in and out of the boat.

Above, a forklift prepares to lift 650 pounds of Wallem and wheelchair in the back of a pickup truck to accompany hunting buddies. Below, strong ramps and stout friends facilitate access to a deep-sea fishing boat.

“We tied a fishing rod to Martin’s hand so he could feel any movement on the line,” Cara said.

They didn’t catch any fish, but did see a bald eagle overhead and a deer on the shore — sights that brought tears to Wallem’s eyes.

Just doing ‘what I had to do’

Cara’s role in the lives of her son and husband involves far more than toting vent batteries on hikes. As she describes:

“I’ve always been Martin’s primary caregiver. The first two years of his illness, I did care for him mostly by myself while also caring for our infant son and working outside the home three days a week. Looking back, I have no idea how I did it. I had two hours of help, five mornings a week, to get Martin up and dressed. Then his parents or another family member would look after him while I went to work. When I came home, I would take over his care and caring for our son. Most nights I would wake every couple of hours to reposition Martin [in bed].

“It was crazy. Some days I remember being so tired I could hardly function. At the time, though, like many care providers, I just did what I had to do.”

Martin Wallem now needs full-time care, and more people than ever are involved with providing it, including Cara’s mother, who is a registered nurse; other relatives from both sides of the family; a licensed practical nurse; a personal care attendant; and others. Cara gave up working as a graphics designer, except on an occasional freelance basis.

“The only way I am able to be home caring for my Martins is because my family holds me up and together,” she says. Medicare and Medicaid pay for much of Wallem’s care, but family members also help purchase some items not covered by insurance.

Active parenting

In the midst of all this caregiving activity, Wallem’s schedule is anything but sedate, and his son plays a very active role in it. Shortly after the boy’s birth, his parents began taking him everywhere with them. At first, while Big Martin was still using a manual wheelchair, Little Martin rode in a carrier strapped to his dad’s chest. Cara pushed the chair, often on walking trails in the mountains. As the boy grew older and his dad switched to a power wheelchair, the youngster would stand on Dad’s feet to catch a ride. “I never needed a stroller!” says Cara.

Now, Wallem attends all of his son’s soccer, baseball and gymnastics events, as well as Halloween parties, classroom events and concerts at school. “He makes it a point,” says his wife, “to see and be seen by Martin’s friends and classmates. By doing this, we hope to make Little Martin’s life as normal as possible.”

Recently Wallem has begun teaching his son to fish. Cara describes the action:  “I pack us all up in our van and we go to a small lake close to our house. Big Martin, a skilled fisherman, directs me on his eyegaze board on how to teach our son. Sometimes it’s quite the comedy of errors.”

Errors or not, life-threatening challenges or not, it’s obvious that for this family, determination on a prodigious scale, coupled with love of infinite capacity, has made possible an existence filled with immeasurable richness.

“Appreciate the smallest accomplishment of your day,” Martin Wallem advises, spelling out his message on his letter board. “Whether it be getting out of bed or locating a piece of equipment or not choking on your food.”

The accomplishment he’ll be working on next is writing a journal for his son. Cara says it will include childhood stories, memories, and words of advice and wisdom.

Bill Norman
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