Fuelling Hope for a Cure

“I’VE TOLD MY KIDS WE’RE ALL IN THIS TOGETHER, AND EVEN THOUGH THERE’S ONLY ONE WAY OUT, IF WE’RE TOGETHER AND SURROUND OURSELVES WITH A CARING COMMUNITY, WE’LL BE BETTER, STRONGER PEOPLE WITH SOME TRULY GREAT MEMORIES AND LIFE-LONG FRIENDSHIPS.”


Heather Snell says her husband, Bob, is her “rock” and she relies on the love and support from her family and friends as she battles ALS and raises money to fund research into the disease.

Surrounded by beautiful music her whole life, Heather Snell has taught piano and accompanied choirs and singers for more than 30 years. Today her musical fingers are primarily occupied with typing on her Blackberry, her mini-laptop, or signing to her family and friends using recently acquired sign language skills.

Heather has Amyotrophic Lateral Sclerosis, commonly known as ALS. Since receiving the diagnosis in July 2006, Heather has lost the ability to speak, to eat, and can no longer play her prized grand piano that she recently had to sell. “It’s sad. But life goes on, so just suck it up, right?” she writes jokingly through e-mail, now one of her primary means of communication.

Heather’s positive and determined attitude is a direct result of her family which includes her husband, Bob, and three children Meg, 17, Stuart, 20 and Ben, 23. “I’ve been as positive as I can because I want my kids to remember me as the crazy, zany, fun person I am. Not what I may become, or am becoming – totally dependent on others.”

Heather says she relies heavily on her husband for all manner of help. “Bob is my rock. Without him, I’d be a big puddle. He helps me with all kinds of things and always with a smile on his face and love in his heart.”

While she says she misses enjoying a glass of red wine and wearing fashionable clothes (buttons, snaps and stiletto heels are no longer practical), Heather is determined to make a difference. This includes organizing the successful fundraiser Heather’s Hootenanny for Hope, which she says is essentially “a celebration of all things good.” Now in its third year, “the Hoot” has raised close to $120,000, most of which has been donated to fund the research of Dr. Michael Strong, Chief of Neurology at LHSC and Heather’s physician. The research conducted by Dr. Strong and his team has the potential to improve the care of hundreds of other patients in Heather’s position.

“My wish is to keep hope alive. If there’s no research for a better understanding and eventual cure for ALS, then there’s no hope for those currently living with it. I don’t know if hope fuels research or that research fuels hope, but I think they work together like Dr. Strong and his team who contribute to this important research.” Heather values the “true and genuine friendship” she has developed with each member of her care team at LHSC. She comes into London from her hometown of Ayr every three months for a full clinic day where she visits with a physiotherapist, occupational therapist, social worker, nurse, and Dr. Strong.

“We love them all,” she writes. “When you are facing ALS you need to have complete trust in your doctor and medical team – and I do. I know the team has my best interests at heart and take their part in my care very seriously.”

It’s her role as a mother that Heather takes just as seriously, and she works to create as much comfort for them as possible. “I’ve told my kids we’re all in this together, and even though there’s only one way out, if we’re together and surround ourselves with a caring community, we’ll be better, stronger people with some truly great memories and life-long friendships.”


Clinical Neurological Sciences Photos

Clinical Neurological Sciences

A LEADER IN ITS FIELD

PRIDE IS EVIDENT WHEN DR. MICHAEL STRONG TALKS ABOUT THE CLINICAL NEUROLOGICAL SCIENCES (CNS) PROGRAM AT LONDON HEALTH SCIENCES CENTRE. IT IS HARD NOT TO BE PROUD OF A DEPARTMENT THAT IS BOTH UNIQUE AND WORLD CLASS. “THE STRENGTH OF THIS PROGRAM IS BUILT AROUND THE PEOPLE WHO ARE WORLD LEADERS IN WHAT THEY DO,” HE SAYS. “EACH ONE OF THEM WORKS QUIETLY BEHIND THE SCENES TO MAKE A REAL DIFFERENCE IN THEIR CHOSEN FIELDS.”

The CNS program at London Health Sciences Centre is unique in many ways, one being its joint relationship between neurology and neurosurgery. The program’s joint co-chair between Dr. Michael Strong, Neurologist and Dr. Steve Lownie, Neurosurgeon is the only one of its kind in Canada.

“Together, we set the direction of the program,” says Dr. Strong, noting all other centres have grouped neurosurgery within their overall surgery program instead of specifically within the clinical neurological sciences department.

The CNS program at LHSC is split into four main areas of research focus: neuromuscular disorders such as Muscular Dystrophy; cerebral vascular disorders such as strokes and aneurysms; epilepsy; and neurodegenerative disorders such as dementia and Amyotrophic Lateral Sclerosis (ALS). In addition, the department has defined areas of clinical expertise, many of which are nationally recognized including spine surgery and multiple sclerosis programs.

Many of the program’s current doctors were trained by world-renowned physicians, Dr. Charles Drake and Dr. Henry Barnett who founded the program in 1969. Their groundbreaking research continues today with new innovations in science and clinical care taking place throughout the program.

In March, Dr. Lownie achieved a 10-year vision with the installation of a robotic-arm neuro-angiogram machine in the operating room. The machine is designed to take images during surgery, helping patients experience a safer and more seamless surgery.

“What better place to be than where you have a clinical and research group working to change the standard of patient care?” asks Dr. Strong, whose own interests in ALS have earned him the position of being the only Canadian to ever win both international awards given for ALS research.

But Dr. Strong is quick to credit the rest of his research team for their continued efforts, which includes Dr. Christen Shoesmith with whom Dr. Strong runs the ALS clinic. This clinic has become an international referral centre, seeing Canadian patients from Alberta to Newfoundland and others from as far as Europe and Asia.

The strength of the ALS clinic was what brought Dr. Strong to the program in 1990 and then Dr. Shoesmith in 2005. The clinic is staffed by a multi-disciplinary team including physicians, a nurse clinician, physiotherapist, occupational therapist, speech language pathologist, dietitian and social worker. “It’s a bit like one-stop shopping for our patients,” says Dr. Shoesmith, noting that ALS patients like Heather Snell will typically spend the entire day in clinic every three to six months.

Many of these patients also take part in research being conducted by Dr. Shoesmith. Currently she is looking at two oral drugs that could one day help improve the prognosis for those with the disease, while also researching the benefit using Vitamin E to treat cramps in a symptom relief trial.

As Dr. Strong gears up to host the third international research workshop on dementia and ALS conference in London – the only one of its kind in the world – he is realizing his vision of making the ALS clinic a world leader in both treatment and research.

“The ALS clinic, and indeed the entire CNS program, continues to build on the heritage of its founders with leading edge treatment, research, and innovation,” says Dr. Strong. “There is no other institution like ours.”