Holistic program targets ALS disease

Misericordia Hospital ALS team wins Caritas Health Group Team Mission Award for innovation

Sonya Wheeler

By BILL GLEN
WCR Staff Writer
Edmonton

Ann Lund loved every moment of her 38-year marriage. And she is grateful to the ALS team at the Misericordia Hospital for every day they extended her husband's life.

"Near the end, when we thought Howard was going to die, his life was extended by seven weeks," Lund said.

Howard had lived with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, for 20 months. He spoke with a voice synthesizer and was fed through a tube.

He was able to care for himself until one weekend when he became very tired. Howard could barely get from his bed to a chair. The home care staff didn't think he would make it through the weekend.

Lund called the Misericordia Hospital. She was told to bring Howard straight in. Sonya Wheeler, a respiratory therapist, met them.

Medical intervention

Howard was critical.

"They say that when ALS gets to that point, they don't get better," Lund said.

Wheeler quickly noticed that Howard's breathing apparatus was not providing enough oxygen. She changed machines and set a program that delivered more oxygen and expelled carbon dioxide at a higher rate.

The difference allowed Howard to resume living.

"We were able to go for walks, to church or to a movie," Lund said.

"Sonya made the difference by seeing that a different (BiPAP) machine would be good for him."

Wheeler is a member of the hospital's ALS team, whose task is to serve the ALS community in northern Alberta and the Northwest Territories by improving the quality of life with faith-based health care.

Caritas award

The team recently received the Caritas Health Group Team Mission Award for its innovative approach to treating the disease.

"ALS is a terminal disease they have to live with. It changes their lives and affects the family," Wheeler said. "But they often have so much hope in just living every day they can. They live each day to the fullest because it could be their last."

The ALS team was formed just two years ago under the guidance of Dr. Mark Heule (respirologist) and Dr. Wendy Johnson (neurologist), who looked to the Misericordia for a solution to the complex challenges faced by ALS patients.

Howard was one of the clinic's first patients. They pioneered an innovative and holistic program, offering the patients breathing support, physio and occupational therapy, nutrition support, speech-language pathology, social work and spiritual care.

Wheeler says about 80 patients with ALS live in northern Alberta. It's important the team keeps in touch with all of them.

"We have to have close relationships with the patients, their families and other support systems we have, like home care staff and family physicians. Communication is so important," she said.

"We try to ensure there is a smooth transition from hospital to home. If they're in the hospital, we set things up with home care. In the hospital, we can make up plans for what should happen at home. It's about communicating with more team members who are outside our walls to make things much more comfortable for the patients."

ALS is a progressive neuro-degenerative disease that affects nerve cells in the brain and the spinal cord. Muscles are not provided with enough nourishment and waste away.

When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. Yet, for the vast majority of people, their minds remain unaffected.

The Misericordia team holds a monthly clinic in the hospital that deals with respiratory breathing issues as well as feeding and swallowing. Patients are also brought in to initiate (BiPAP) respiratory therapy, a non-invasive ventilation method provided by a machine through a mask or nose prongs that offloads the work the weakened muscles would have to do for effective breathing.

Gordon Self says the ALS team has made a measurable difference in the quality of life of the patients.

"The ALS community has really adopted the Misericordia Hospital and Caritas as their home," said Self, vice president of mission, ethics and spirituality for Caritas.

"There may be other service programs out there that draw more attention, but this is a vulnerable patient population because there is no cure. The work the ALS team has done trying to make an appreciable difference in the lives of their patients by improving the quality of life and by giving them hope, shows they are a tremendous group."

ALS - a moving target

Wheeler says ALS is like a moving target, changing from patient to patient.

"Unfortunately, there is no cause or cure for the disease and it can affect people in many different ways. It can affect the limbs in some people, or the bulbar muscles (speech and swallowing) in others. Sometimes it can run through a family. There is no set schedule for ALS."

Lund says she keeps busy and tries to remain strong spiritually. But she has moments when she deeply wishes Howard were still by her side.

"I know Howard is happy and no longer suffering with pain. I was blessed to have him as my husband for so many years," she said.

"The ALS clinic made all the difference in the world because they are so up-to-date. They know what the patients need," she said.

On June 9, the ALS Society of Canada is hosting its annual fun walk at Hawrelak Park. Visit www.als.ca for more information.

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