Minna Mettinen-Kekalainen has refused to let ALS define her - or hold her back.


Simply unbeatable

Stewart, Trevor
Local News - Saturday, August 11, 2007 @ 09:00

Minna Mettinen-Kekalainen lay in a Sudbury hospital room throughout the entire autumn of 2005 with aspiration pneumonia, a life-threatening lung condition.

Painkillers dulled the 39-year-old woman's senses. She alternated, with weighted eye lids, between drug-induced sleep and heavily medicated consciousness.

Doctors said they needed to insert a ventilator; a nurse struggled to find a vein for the intravenous needle because her blood pressure was so low.

Yet, she clearly remembers her 12-year-old daughter Michelle shaking her awake.

"Mommy, don't fall asleep with food in your mouth."

"I remember that distinctly," Minna says. "It was dramatic."

She left the hospital after three months still not knowing why her legs could no longer support her, even with her walker. Minna thought of Michelle and her son, Mika, then 15, who she was raising alone.

"These kids have me and that's all they have, and if I stay the way I am, they may not have me, either."

So, Minna started saying no to the painkillers. Her body was failing, but she was tired of surrendering her mind as well.

She had been using a walker for years and had been living a sedentary and unhealthy life. She left the hospital in a wheelchair, but vowed a complete 180 - for the sake of her health and the sake of her children.

A few months later, a fourth neurologist made a diagnosis - amyotrophic lateral sclerosis.

ALS - best known as Lou Gehrig's disease for the legendary New York Yankees player who died of it in 1941 - is a devastating diagnosis. It's an incurable illness that deteriorates voluntary muscles. Half of those diagnosed die within three years, 80 per cent within five. Just one in 10 makes it 10 years or beyond.

Many would consider these events life-defining, yet, to know Minna today is to know nothing of the ills that have befallen her.

Seeing her paddle a kayak out onto Ramsey Lake with arms now thick with muscle, passersby would never know the legs inside the shell don't work, unless they spied the wheelchair sitting back on the dock.

Her detailed training logbook reveals she rarely misses a day of training as she prepares to become the first wheelchair athlete to paddle in the Canadian masters sprint kayaking championship on Aug. 26 among a field of able-bodied athletes.

It's nearly impossible to imagine her in that hospital bed 20 months ago, when you hear her say "I don't plan on dying any time soon." In such a short time, she has enabled both herself and a community of people around her.

"The point is," Minna says between workouts at the YMCA and Sudbury Canoe Club, "someone that has a degenerative neurological disease can help themselves to have a meaningful life."

Minna believes leading a healthy and fulfilling life could be holding her ALS at bay.

"I definitely think the deterioration has slowed down considerably," Minna says. "I choose to believe that because our mind has a lot of power over our bodies.

"Whatever happens, I'm the one in control of what happens with my life. I have the power to work around those limitations."

Minna compares her degenerative disease to a water glass with a small hole in the bottom. Her deterioration is the water slowly leaking. If she continues to fill the glass as fast as possible, perhaps she can keep it from going dry.

"To me, sports is the tool, but my attitude is the engine that drives it," she says. "Today, I feel healthier than I have been in 21 years, although, according to the medical profession, I'm really quite ill."

Lou Gehrig's takes a toll, however. Her food choices are limited to soft things she can swallow - soft fruit, shakes, hummus and mostly liquids. Still, it's a big improvement from after her diagnosis, when she could hardly swallow anything at all.

Minna's grip strength has also been heavily affected, only 20 per cent of what it was two years ago. Looking closely, you can see her ring and pinky fingers remain curled into her palm. She can use just two fingers and a thumb on each hand to paddle or propel herself along.

"I can't open this one at all," she demonstrates by trying to pry a pinky up gently.

When asked "can you feel those fingers?" she answers solemnly "yes." "Does it hurt?"

"Yes."

Then a pause, "but pain is relative. If you use your mind to focus on something different, the pain is really background noise."

Cal McGibbon knows Minna better than anyone else in Sudbury and has learned Minna's mind is an awesome tool.

McGibbon is the owner of Healthy Living in the downtown Rainbow Centre and a personal trainer for a number of Sudbury's top athletes.
That combination - along with their shared beliefs in the power of the mind - is one of the reasons Minna revealed her ALS to McGibbon before most others.

McGibbon quickly realized Minna's submersion into training for her various athletic endeavours moved her focus from the disease to her fitness level, and that did wonders.

"Because she's doing it for herself, not for Lou Gehrig's," he says. "And I don't care what anyone says, the progression (of the disease) in her fingers and in her throat has slowed down. She's been in pretty much the same spot for a long time now."

Moreover, compared to where she was two years ago, Minna has also made some tremendous strides.

Until the age of 20, Minna had been a high-level athlete. She moved from Finland to Toronto as a child and took up hockey. She was due to play in the first women's hockey world tournament in 1987 as a member of Team Ontario.

Tragically, the summer before, a truck hit her motocross bike as she travelled between gravel pits. Minna was left with an acute brain injury.

For the next 19 years, even as she slowly recovered her damaged motor skills and short-term memory, she wasn't even a reflection of her former self. Minna would take Mika and Michelle to the YMCA for swimming or squash lessons and sit by the side, completely inactive. "I felt there was nothing that I could contribute to society or that was personally satisfying," she says. "The past activities I enjoyed seemed so far away."

Minna calls her time in the hospital a "moment of crisis," which, remarkably, she has responded to with vigour.

She returned to the Durham Street YMCA to begin working out in spite of the diagnosis of Lou Gehrig's. She started slowly, with the hand cycle and light weights. She could barely handle a few minutes of physical exertion.

"But when I saw some small gains that I was making, I began to see that spark of my former self," she says.

Donna Smrek, the YMCA's manager of adult programs, says Minna became "so inspirational" to nearly everyone at the centre.

Minna went to Smrek, a runner, for a training program before her first-half marathon in a wheelchair.

Minna has a habit of reaching out to anyone who inspires her or can help her achieve a goal. A list of her long-distance e-mail partners includes Olympic champion Swiss rower Xeno Muller and American Paralympians Angela Madsen and Cheri Blauwet.

One day, a box arrived unexpectedly in the mail from Blauwet. Minna was shocked to find the Paralympic champion wheelchair racer had sent one of her racing chairs to Minna.

The note attached said "believe in yourself as much as I do."

As Smrek and Minna tinkered with a training plan, Smrek learned "if you give Minna five laps, she's going to do 15."

At the same time, Minna "fell in love with the rowing machine" and asked to have an adaptive rowing seat put on one of the centre's rowing machines.

Smrek had no idea that there would be a clientele for this at the Y, but three other members with similar disabilities soon took up Minna's lead and began using the rowing machine.

"If someone's losing (the strength) of their grip, they're not usually thinking 'maybe I should learn to row now,' " Smrek says. "Minna came in and said 'can I adapt the rower?' "

To know Minna, however, is to understand her need to couple wheelchair racing with raising money for a good cause. Her son, Mika, was an avid skateboarder. Minna had heard the cost of building the Minnow Lake skatepark had exceeded what the city wanted to spend.

Minna's plan was to take several weeks and roll the width of Greater Sudbury, from west to east, sleeping as she went, getting attention for the cause and asking for donations.

Then the city came through, however, and built the skatepark before she put her plan into action. So Minna switched gears, putting her philanthropic pursuits toward any road race through which she could raise money for other causes.

"When I'm gone, I don't want my kids to think I just sat around and didn't give back to the community," Minna says.

She entered the Sudbury Rocks five-kilometre race in May 2006 to raise money for diabetes; she rolled through the Walden Firecracker 5k on Canada Day for multiple sclerosis; in August, she raced in North Bay to raise funds for YMCA kids camps - all this from a woman limited by her own financial constraints.

As usual, Minna's growing circle of support helped her out. McGibbon noticed Minna's health did pay a price for her aggressive training as she prepared for her first half-marathon last October.

"When I first started working with Minna, she ate probably one-third of the calories she needed in a day, but she didn't have the money," McGibbon says, adding Minna's organic vegan lifestyle and swallowing difficulties limited her food choices.

McGibbon contacted the supplier of Vega, a powdered organic meal replacement, and found Minna a sponsor.

"At first, he thought I was trying to put a squeeze on him for a price," McGibbon laughs. "I said I didn't want the price lowered, I just wanted to do something for (Minna)."

Soon after, a year's supply of the mix, along with hats, T-shirts and books arrived at McGibbon's store for Minna.

"It was amazing. We both cried in the store," McGibbon says. Minna's now listed as an ambassador on Vega's website.

Her goal for the half marathon was two hours, but "everyone else kept saying 'don't set yourself up for disappointment,' " she remembers. People insisted she set 2 hours, 20 minutes as her goal. To get them off her back, she agreed. She finished the race in one hour, 53 minutes.

Minna is planning her first marathon this October.

Every day, Minna wakes early at her house in Capreol and takes Sudbury's Handi-Transit bus into Sudbury. She wheels everywhere she needs to go - the canoe club, the YMCA, and to various therapists - before the return trip in the evening.

It's a long way in a wheelchair from Four Corners to downtown, she knows. But not nearly as long as the road from the place she was two years ago when she couldn't support her own weight to transfer from her wheelchair to a workout bench.

"Now, I have no problem doing two hours on the rowing machine, and I've rolled 56 kilometres in a day before," she says.

Minna often rested on the docks of the Canoe Club last summer while rolling from the south end to downtown, "yearning" to be one of the folks sliding through the waters of Lake Ramsey.

One August day, canoe club commodore Grayden McClung found her sitting on the dock with her feet in the water.

"Have you been out lately?" McClung asked. "She said 'not for 14 years,' " he says she replied.

McClung had a member take out a two-person kayak and Minna's love affair with the water began. Minna was also given the role of accessibility co-ordinator in exchange for a membership.

They didn't realize how seriously Minna would take the role of opening up both Sudbury's canoe and rowing clubs - which share the building on Elizabeth Street - to people with disabilities.

"I made it my mission to bring an adaptive rowing program to Sudbury," Minna says.

To know Minna is to fully understand the scope of what she's done at the rowing club, after she met rower and Laurentian University professor Thomas Merritt.

Minna and Merritt didn't find one another in Sudbury, but in Toronto at the Canadian Indoor Rowing Championships in February. Minna's goal was to be invited to the selection camp for the national adaptive rowing team, and Merritt agreed to coach her and polish Minna's determined-but-unrefined stroke.

During their training sessions, Minna told Merritt of a grant she wanted to apply for in order to begin an adaptive rowing program in Sudbury.

"And we got tremendous support from the community and the rowing club," says Merritt, who was caught up in Minna's enthusiasm for the new program. He was eager to co-ordinate and coach it.

The Ministry of Health grant offered $14,000, covering the cost of starting the program, including a new 30-foot, international-calibre adaptive boat. But, to Minna, equally important are the funds dedicated to "promoting the program to any place that services people with a disability," she says.

"It's not about getting Minna on the water," Merritt says. "It's about the future of this community."

When Minna began to look closely around Sudbury for disabled athletics, she found a sledge hockey team for men and a recreational wheelchair basketball team. Knowing Handi-Transit has roughly 4,500 users, she was alarmed not more of them had access to sports.

"It's the kind of thing that a lot of people will say 'it's a great idea,' " Merritt says. "But it just takes that catalyst and Minna has been that rallying force."

The club named the boat The Minna. "The biggest honour you can bestow upon a rower from a program is to name a boat after them," Merritt says.

Minna and Merritt know they've pushed off on a program with tremendous potential.

While Minna admits rowing in the 2008 Beijing Paralympics is a serious goal, it's not her dream.

"I would just like to see someone from Sudbury be able to go," she says. "Of course, I yearn deeply for something personal, but that's temporary.

"If I can be an instrument of motivation for half a dozen people to reach for their goals and live healthier lives, then that's something lasting."

Minna's drive to contribute to the larger community at this stage of her life has, in turn, developed a community around her.

"Minna can manifest reality faster than anybody I've ever met," McGibbon says. "Minna wants to kayak, she meets someone (who helps her). Everything she wants to do, she meets the perfect person.

"She's able to focus on something, and someone has shown up in her life. And once you're there, you don't want to get rid of her, because she's fun to be around."

What's clear is while Minna attracts the right people at the right time, it's noticeable that those who are brought into Minna's circle benefit as well.

Steve Daniel was the second wheelchair athlete to step into The Minna. The former army soldier lost the use of his legs after a parachute training accident in Trenton two years ago.

Daniel is in tremendous shape and was also looking for something more competitive when Minna called him about the new program.

"I was pretty excited about it, because it was something I hadn't tried before," he says. "And you don't realize how important sports are for someone in a chair, because not only is it giving you a chance to compete, but you're out there socializing."

Minna's children Mika, now 17, and Michelle, 14, like typical teenagers don't gush about their mother. Yet when Michelle's class did projects on important people in the community, other kids chose politicians and the like. Michelle chose her mother for starting the region's first adaptive rowing program.

To Minna, that said everything. While Minna can't shake the image of Michelle leaning over her hospital bed in 2005, she knows her children see only the strength she has shown since.

Suzanne Clancy, the director of support services for the ALS Society of Ontario, agrees that those patients with "spirit of mind, a positive outlook and a sense of humour" tend to do better. However, "those people just do well against any disease."

Clancy is in contact with ALS patients and their families every day in her role with the provincial society. "With ALS, I'm always amazed how it affects everyone differently, but it's always fatal," she says of the grim reality of the disease.

While that is the true crime of ALS, Clancy identifies another from her office in Toronto during a phone interview. Lou Gehrig's gets so little funding and attention compared to other illnesses.

There are 2,500-3,000 people in Canada with ALS at any given time and two to three of those sufferers die every day.

"But it's a small percentage of people," Clancy says. "So it doesn't get the funding that high-profile diseases like AIDS or cancer get." That's hard for ALS patients and their families to deal with, because it's an illness "without a cause" and "without a cure," says Clancy. Progess toward finding out what leads to Lou Gehrig's and any advancements toward helping sufferers is slow at best.

"They're unique clients, because they experience a loss every day," Clancy says, depending on the rate of deterioration.

"They can go to sleep at night, wake up and not be able to write their name."

Still, Clancy says she is "always blown away by people's spirit to overcome the challenges" despite the severity of the disease. "At least they're not dying of ALS, they chose to live with it."

als

Amytrophic Lateral Sclerosis, commonly called ALS or Lou Gehrig's disease;

ALS is a rapidly progressive and fatal neuromuscular disease. Motor nerve cells die and cause the deterioration of voluntary muscle;

There is no effective treatment or known cure;

Half those diagnosed die within three years of first symptoms, 80 per cent die within two to five years, but 10 per cent live 10 years or more;

2,500-3,000 Canadians older than 18 live with ALS;

900 Ontarians suffer from the disease;

Little is known about the cause of ALS. Less than 10 per cent are hereditary cases;

June is ALS awareness month;

Northern Ontario regional office/support group, 96 Larch St., 669-0324.

Source: ALS Society of Canada, www.als.ca

tstewart@thesudburystar.com
http://www.thesudburystar.com/webapp...+News&classif=

Hi,

Thanks for your interest in the article.
I was surprised to see it reaching beyond our little community in Northern Ontario.

-minna