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ALS Clinic inspires patients to raise money

by Kate Snider

JJ Bouma’s life changed in an instant when he was given the diagnosis of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. On the afternoon of September 16, 2005, JJ’s doctor met with him and his family to discuss the results of tests that had been taken to determine the ongoing problem JJ was experiencing.

According to Dr. Deborah Gelinas, medical director of the ALS Clinic, a collaborative effort between Saint Mary’s Health Care, Mary Free Bed Rehabilitation Hospital, and Michigan State University College of Human Medicine, “ALS is a progressive disease, running a 3-year course, leading to paralysis of all voluntary muscles, and eventually death.”

After JJ’s diagnosis, his friends and family rallied around him. Together, they made plans for short time they had left together. JJ’s wife, Pam, remembers, “JJ always wanted to drive across the country on Route 66 in a Corvette convertible. So we bought one – red of course – and made plans to leave the next spring.”

JJ gave just one stipulation for the trip – it needed to bring awareness to ALS. After 10 weeks of meetings with his friends, the group grew to 33 people, 13 Corvettes, 2 motor homes, and a helicopter.

While fighting ALS, JJ’s financial goal was to raise $66,000 on Route 66 to bring back to the Grand Rapids community to help other people with ALS (PALS).

JJ’s group began their trip in Grand Rapids during the last week of May 2006 and drove across the country for 5 days to their final destination: the Santa Monica Pier in California.

Pam recounted that during the journey, “Eighteen PALS met us with their families, some literally along the sides of the road as we passed through. Our goal was to bring hope to those who had no one else to lean on…even if it meant only for that day.”

The total amount raised during the trip was over 4 times the goal, totaling $318,000.

JJ wanted to use the money raised to help those in West Michigan who came after him with ALS. He said they needed to receive help and hope for a cure.

According to Pam, JJ knew he was never going to be able to use an ALS Clinic in Grand Rapids because his progression and the decline of his disease were very obvious.

Before JJ passed away, he met with the board president of Saint Mary’s Health Care and asked that an ALS Clinic to be built. JJ’s wish came true in September 2007 when the ALS Clinic opened its doors.

Sadly, JJ never saw the clinic or the people it helped. He passed away just 7 months after the trip on Route 66.

Since its opening, the ALS Clinic has helped more than 200 PALS by providing physical, emotional, and spiritual support for patients.

The clinic depends on donations to stay open. Kathy Muir Laidlaw, the wife of William (Bill) Wallace Muir Jr., an ALS Clinic patient, remembers, “When my husband died in 2008, we asked that the memorial gift from our friends and family be given to the clinic. I believe there was over $600,000 donated in his name to help find a cure for this horrific disease.”

Bill was diagnosed with ALS in January 2007, but didn’t begin to receive care at the ALS Clinic because the clinic wasn’t open yet. Bill and Kathy drove from West Michigan to a clinic in Chicago every 3 months for a year.

As Bill’s disease progressed, he needed a brace to hold his head up. He and Kathy searched for an orthotics provider in the Grand Rapids area and found Mary Free Bed Orthotics as well as the ALS Clinic.

“We became immediately attached to Dr. Gelinas and her forthright way of talking and listening to Bill about where he was and what he needed,” explained Kathy. “After that, the thought of trying to drive all the way to Chicago and stay in a hotel was more than we could possibly imagine.”

After treating PALS like Bill and JJ, Dr. Gelinas said, “They help me to become less afraid of the darkness ahead by showing me how they continue to shine their lights through their travels with illness.”

Dr. Gelinas is a big part of the ALS Clinic’s success. She uses her expert knowledge and caring spirit to make patients and their caregivers feel more at ease with their disease.

Dr. Gelinas said the ALS clinic has taught her that, “life is only borrowed, never owned and that each of us must make the best use of every living day.  PALS teach me how invincible the human spirit is, how courageous we can become in the face of adversity and how hopeful we must remain in order to face the challenges of each day.”

As Bill’s caregiver, Kathy explained, “ALS is quite like nothing else. It takes its toll, not only on the life of those stricken, but in the energy and patience of the caregivers. You don’t believe you can do it. The clinic was helpful in that way so much. They really talked to me, too, about my mental and physical health and about ways I could help Bill be more comfortable. I really appreciated it.”

Kathy says she is convinced that the money donated in Bill’s name helped keep the clinic open.  She said, “Never in my wildest dreams did I think we would raise that much money and help the clinic in that way.”

According to Dr. Gelinas, early signs and symptoms of ALS include:

  • Muscle weakness in your hands, arms, legs, or feet
  • Muscle cramps and twitching in your hands or feet
  • Slurred speech and difficulty projecting your voice
  • Shortness of breath and difficulty swallowing and breathing

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