Grad student tackles cerebral palsy's long-term challenges

Marylyn Horsman, a master’s student in UBC’s Rehabilitation Sciences has had her share of hurdles to overcome. Diagnosed with cerebral palsy as a young child she was worried she wouldn’t be able to have a family, however she met and married her husband at the age of 18, had four healthy children and now has 10 grandchildren.

That could be why seeing others succeed motivates her.

“I pursued my degree not for the piece of paper per se,” says Horsman. “It was in hopes that my research might make a difference in the lives of others.”

She made good on that statement earlier this year. As part of her master’s thesis, she examined secondary effects of cerebral palsy – a group of conditions affecting movement and muscle coordination – on adults.

At the start of her graduate degree in 2003, she was surprised to find most studies on cerebral palsy she came across ended at 18 years. “Once you become an adult with cerebral palsy, you fall through the cracks,” says Horsman, now in her mid-fifties. In 2004-2005, she received a Shaughnessy Hospital Volunteer Society Fellowship in Health Care for $16,000 through UBC’s Faculty of Graduate Studies that gave her the added support she needed to continue her research.

Her study encompassed 12 adults evenly divided into males and females and ranging in age from 25 to 58. Horsman looked at how adults were coping with secondary conditions associated with cerebral palsy such as pain, fatigue, and increasing musculoskeletal concerns.

“People don’t often think about the extra energy it takes to live with a disability, and the stresses that creates on the body,” says Horsman. It is estimated over 50,000 Canadians have cerebral palsy and one out of 500 babies is affected by aspects of the disorder.

A woman in the study was 37 years old, but said she felt 65.

“The aging process begins earlier with cerebral palsy,” Horsman says. “Physical changes can make a 30-year-old feel isolated from a peer group because others won’t be dealing with these issues for another 20 years.”

One participant described her balance as “unpredictable,” suggesting she could no longer trust her own judgment. Even though falling was a major issue among the participants, of equal concern was their declining ability to get up on their own when they did fall. Some adults Horsman interviewed said they felt doctors didn’t understand the full consequences of their disability.

“The medical community often doesn’t talk about the secondary conditions associated with cerebral palsy,” she says. “For instance, doctors wouldn’t necessarily say fatigue or certain types of pain are related to a patient’s chronic disorder, and it is vital to recognize this when looking at different treatment programs.” Treatments to address the disorder’s secondary effects range from speech and language therapies to assist with fine motor skills such as writing and speaking, to exercises for arthritis such as swimming, which increase joint mobility and coordination, as well as helping with depression.

While many take for granted getting dressed in the morning, for those with a disability daily activities can be a struggle if the right supports aren’t in place. Yet Horsman says community supports need to go further than just facilitating the basics.

“We still tend to go by the old-style medical model of dressed, cleaned and housed and forget the rest,” she says. “But there are many facets to being supported such as having access to adequate homecare, which gives one the freedom to perform everyday activities, pursue job aspirations, go on outings with family and friends, and maintain overall health.”

Most study participants believed they would maintain their abilities longer if they had greater access to therapies. Horsman gives the example of an existing B.C. government program, which increases independence by allocating a certain amount of money to those with a disability to hire a healthcare worker on their own.

Horsman’s enthusiasm to shed light on adults living with cerebral palsy and the additional challenges aging brings has made an impression on her thesis advisor Prof. Susan Harris. “She is neither a physiotherapist nor occupational therapist,” says Harris. “Yet as someone who has lived with a disability and rehabilitation throughout her life, she has taught me a lot.”

After graduating this November with a Master of Science in Rehabilitation Sciences, Horsman plans to use data from her study as material for public presentations. Her passion for women’s issues and specifically women with disabilities grew early in her academic career while she was completing a bachelor’s degree. She intends to make this her focus once more when speaking to community groups.

“Those with cerebral palsy would like to be seen as individuals beyond our disabilities,” she says. “Not as ‘wowsers,’ those who ‘wow’ because they function with their disability and manage to get out of bed in the morning, but as the people they are with their abilities.”