A courageous family battles Lou Gehrig’s disease

“I’m tired of seeing you hurting like this,” Bert told his wife. “I’m taking you with me and I won’t let that happen.”

Bert Ouellet is surrounded by his family and friends while his daughter, Tammy, sings French folk songs in front of a campfire


June 22, 2013

Barbara WebbSECHELT, BC, Jun 22, 2013/ Troy Media/ – About a year ago Bert Ouellet was enjoying his retirement playing golf and plucking the strings of his double bass around a family campfire. Now he is bedridden – a victim of amyotrophic lateral sclerosis, ALS – also known as Lou Gehrig’s disease.

ALS is a motor neuron disease that progressively degenerates the muscular system. The brain and spinal cord can no longer supply the electrical stimulation needed for movement. There is no cure and the cause of this debilitating disease is still unknown.

“They told me it was going to be a journey, but I had no idea it was going to be a journey like this,” said his wife, Susan Ouellet as she cried.

Family and friends know Bert as Mr. Happy.

A welder for Canada Vale Limited (formerly INCO) Bert, 63, of Sudbury, Ontario took control of his quality of life by investing in his family. He bought acreage on a river outside of Dowling and created Happy Face Trailer Park, a seasonal campground dotted with cabins and trailers.

Bert and Susan Ouellet
Bert and Susan Ouellet

“We purchased the property the same month my daughter was born,” said Susan. “We’ve raised our children here every summer. We’ve had 37 years of cousins getting to know each other. Now they’re all raising their children here. It’s been a family park that just keeps going and going.”

Bert worked to retire at age 49. His rewards include close-knit relatives and years of memories that are shared with them on the grounds of a place he envisioned for his family.

He started tripping and falling on the golf course last June. By July he was walking with a walker, by Christmas he was in a wheelchair, by March he was bedridden. Susan’s world has shrunked down to the size of their home.

“It seems we’re always about two weeks too late,” said Tammy Collett, Bert and Susan’s daughter. The family sold Bert’s car to purchase a wheelchair van. Bert was able to use it only four times.

“Week by week I see a change,” said Susan. Bert can no longer move his arms. “I’m having to feed him, having to wash him, having to blow his nose, brush his teeth.” She has to move his 228-pound frame every two hours to prevent pneumonia, night and day.

“I’m up every two hours,” she said. “So during the day I’m dragging myself around, trying to find time to have a little bit of a rest because you know, at night, it will be the same thing.” And there is always the potential for something to go wrong. “You have to be ready all the time.”

When spring arrived Bert’s family was able to move him via ambulance to his bedroom at Happy Face Trailer Park, with hopes that he could enjoy a summer there with his family. Susan looks after him there while their family lends support as much as they can. But Bert knows what this is doing to Susan.

“I’m tired of seeing you hurting like this,” he said to his wife. “I’m taking you with me and I won’t let that happen.”

“I never believed in assistance,” said Susan, “but he’s lying there with nothing. He’s just wasting away.”

They talked about it. Bert is happy to be in the trailer park that he built, in the cabin that he built there, but they agreed, “He is trapped in a room and I am trapped in the camp.” This is not what Bert intended when he built Happy Face Trailer Park.

In order for Bert to stay at Happy Face for the summer, he would need 24-7 assistance from a professional who could accommodate his needs in every way. He would also need a doctor who would be willing to make house calls to monitor his pain. The Ouellets currently have personal support workers visiting four times per day, but it is still not enough.

On Thursday, Bert made the decision to enter a hospice.

Maison Vale Hospice is located on the outskirts of Sudbury. Its 10-bedroom facility provides a comfortable, home-like setting with views of Bethel Lake and Ramsey Lake. Its mission is to ensure that Bert’s needs are met in every way they can.

“It is a dream come true,” said Susan. “I can be with him as much as I want, as long as I want, I can even move in with him. I can feel like his wife again. We’re going to be able to sit and enjoy each other. We can have quality time – how much do we have left? We can spend our days in peace.”

Sudbury’s Walk for ALS is taking place today and many members of Bert’s family are taking part under “Team Mr Happy.” If you would like to pledge support for their team, or contribute a donation to the cause please sign up.

I had the pleasure of spending a summer with the Ouellets and their families. Over a campfire people brought out their guitars while Bert plucked his double bass and his daughter, Tammy, sang French folk songs. I brought over my ukulele and clumsily played along. I gave the ukulele to Bert and watched him as he sat down and tuned its four strings to match his bass. Then he plucked at it, playing along as if it was a miniature bass. It was a most memorable evening. I’ve never felt a stronger sense of family than I did that night, thanks to Bert and his family.

Troy Media columnist Barbara Webb has over 15 years of life experience in a caregiver role. Are you a caregiver? Barbara would like to hear your story. Contact her at familyties@troymedia.com.

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One Response to "A courageous family battles Lou Gehrig’s disease"

  1. Troy Media   June 27, 2013 at 2:27 pm

    Letter to the Editor:

    Thank you so much for your article
    on this brave family.  Bert appears to have the fast progression of this
    fatal disease but with a partner like Susan – he is one very lucky man.

    I hope his journey at the hospice
    facility is a comfortable one for them both.
    I have been caring
    for patients with ALS for > 30 years. I took some time reading other
    articles you wrote on caregiving and am quite impressed that you
    are highlighting some of the touching stories of the community.  It was
    mentioned that you too, Barbara, are a caregiver.  I did not read your story yet. I
    hope you will share with us.
    I travel the country giving
    caregiving conferences.  My focus is not just on ALS but the role of the
    caregiver for all chronic and long term diseases.  The growing role of the
    family now is one of caregiving.  Did you know that in 2010 the caregiver
    burden for families was 30% and in 2012 it jumped to 39%. 
    How do families learn what to do,
    cope and when to let go and get help.
    Mary Beth Geise, RN
    ALS Nurse Consultant and Home Care Trainer
    Greensboro, NC 27455