'you feel invisible': as its president, he led bcit to excellence. now he struggles to speak
8 minute read
brian gillespie, a former dean of bcit, and his wife beverly at their home in coquitlam. gillespie is losing his ability to communicate because of progressive supranuclear palsy.
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“ideas are like fish. if you want to catch little fish, you can stay in the shallow water. but if you want to catch the big fish, you’ve got to go deeper.” — david lynch
there is nowhere brian gillespie would rather be than standing on a wooded dock in kyuquot sound, surrounded by sitka spruce, the briny smell of the ocean, and at his feet, an array of salmon, halibut and green ling cod, the beautiful catch.
in a gleaming, neatly kept port coquitlam condo, gillespie struggles to find words to express how his life has been impacted by progressive supranuclear palsy, an incurable, rare, neurodegenerative condition that is always fatal.
five years after his diagnosis, he can see the words in his head like fish under water, but cannot pull them out.
gillespie speaks slowly. “i have words,” he says. “i can’t catch them.”
dysarthria, a motor speech disorder, is one of the hallmark features of progressive supranuclear palsy, or psp, along with movement disorders, including loss of balance, muscle weakening and cognitive impairments.
as with fishing, sometimes the best thing to do is sit and wait. the words will come.
but sometime in the near future, they will stop. gillespie will become non-verbal long before he has run out of things to say.
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although he has been losing his ability to walk, and relies on a walker, the loss of the ability to communicate has been the deepest cut.
“it’s like you are not whole. you feel invisible,” he says, finally.
brian gillespie with his wife, beverly miller, at their home in coquitlam.
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gillespie, a former president of the b.c. institute of technology, has lived a life steeped in ideas, communication and education.
during his 45-year career at bcit, gillespie served as dean of the school of health sciences, vice-president of education and, from 1995 to 2000, as president.
he led the institution to new levels of excellence, introducing research and development, international education, marine training, the downtown campus, distance education and bachelor of technology degrees, as well as serving on provincial and national committees, including the science council of b.c., and the board of vancouver general hospital.
in a recent letter to postmedia, composed with the help of his wife beverly miller, he wrote: “i can no longer navigate on my own, nor use a computer, nor write my name. i have difficulty recalling words and uttering them clearly, and yet i understand all that is said. my greatest loss is not my mobility, nor fishing, nor golf, nor my independence. my greatest loss is my inability to communicate clearly and say the words i want to say.”
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gillespie was never averse to the delights of technology, or rapid, tech-aided problem solving and learning.
yet, during the progression of his illness, he has learned to value what most of us take for granted: conversations. inclusion. human connection.
“as human beings, we are meant to interact,” he wrote.
all around his apartment are small picture books to jog his memory when words fail.
the booklets are communication aids filled with names, family photos, reminders of a life filled with adventure, ideas and meaning.
gillespie and miller married in 1988, blending families after gillespie’s first wife died.
since his diagnosis, they have downsized to a condo retrofitted with bars and rails for gillespie to grasp for balance, and stocked with mobility aids.
his walker. his wheelchair.
he will eventually lose his ability to walk and feed himself.
a higher level of care than what miller can provide will soon be necessary.
brian gillespie and wife, beverly miller, chat on a video call with their grandson jayke moore. using technology helps bridge the gap when words fail.
jayke moore
the long road to diagnosis
the first indication something was not quite right came five years ago, when gillespie felt himself tilting backward into a fall.
“you could see increasingly that he didn’t have balance,” said miller. “he was becoming very slow in moving and decision-making, and very fatigued. his speech was becoming a bit slurred.”
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“and my eyes,” said gillespie, “my eyes would go back.”
vertical supranuclear gaze palsy, or the inability to control the direction of the eyes, is a hallmark of psp.
the couple’s family doctor referred them to a neurologist.
“they diagnosed him with parkinson’s,” said miller.
the misdiagnosis of parkinson’s is common for those with psp, often delaying correct diagnosis for months or years.
psp and parkinson’s share similar symptoms, including changes in gait and muscle weakness, but psp patients do not have the tremors characteristic of parkinson’s, and symptoms progress more rapidly, which makes early diagnosis more important.
gillespie did not respond to levadopa, the primary parkinson’s drug.
“they said this is not parkinson’s,” said miller.
there are no definitive diagnostic test for psp, no blood-based biomarkers or characteristics measurable by brain imaging.
psp is considered random, affecting six to 10 people per 100,000, according to curepsp, an international research organization. although it is more common than als, it is less well-known.
this lack of awareness, even among the medical community, means many people may be living with psp, undiagnosed. patients often wait months or years before getting a correct diagnosis.
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a 2023 study based on autopsies showed that the incidence may be up to 50 times greater than previously believed.
“a late diagnosis deprives those affected of the limited resources and support there is available,” writes gillespie in his letter.
once gillespie’s diagnosis was determined, the neurologist was direct.
“they said it was incurable, and the lifespan was maybe five to 12 years,” says miller.
bob brett (top right, with brian gillespie and beverly miller) is the facilitator of the progressive supranuclear palsy support group with group.
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a small support group has become a lifeline
support group facilitator bob brett lost his wife marion to psp in 2016.
“we went to three neurologists, all of whom said they didn’t know what it was she had,” said brett. a fourth finally gave them the correct diagnosis. she died just over two years later.
“there is no treatment. there is no cause. there is nothing that reverses it,” said brett.
for 12 years, he has done it on his own, with no support, no grants, no health authority funding.
there was also no support group.
brett decided to create one. he typed up a letter, which he sent to 44 neurologists throughout the province, including his email and phone number. elim retirement village in surrey donated a room for once-monthly meetings.
“it’s a lonely diagnoses,” said brett.
people came. to talk. no matter how long it took to get the words out.
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one day, gillespie and miller came through the door.
brett, a retired bcit instructor was stunned to see his former colleague, and becomes emotional talking about it.
“he walks in and i had to lay the groundwork for him about what his journey would be like. it was tough.”
brett gives everyone a road map: they need a case manager from the health authority. they need an occupational and physical therapist. and they need to contact caya , or communication assistance for youth and adults, a b.c. organization that helps with assistive communication technology).
the support group isn’t just for those with psp, but also for their caregivers.
nothing is off the table: practical matters, like how to handle a choking incident, personal care, even loss of intimacy.
“you have to be truthful. people with psp are very vulnerable to all the discourtesies that life can give to you,” said brett.
the first piece of advice brett gives is a single word: acceptance.
“if you resist, you are on your own. get support.”
armed with information from the support group, miller and brett reached out to caya.
while nothing can be done to stop the progression of the disease, augmentative and alternative communication technology can help when words fail.
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caya is a provincial service program that operates on grants, funded by the provincial government, and it doesn’t require a doctor’s referral.
lois turner, a program manager at caya, communication for youth and adults, shows examples of adaptive technologies for people losing their speech and other cognitive challenges.
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“we see people on the worst days of their lives,” said lois turner, the group’s program manager.
its speech language pathologists match people with equipment from a loan bank, which could be as refined as a tablet system where users point with their eyes, or as low-tech as gillespie’s booklets filled with words.
“we do booklets, boards, communication cards and technology, and we teach the client, the family and people around them how to use it,” said turner.
only someone who has lost the power of speech knows its power, said turner.
“when you can’t talk quickly, people start to talk around you, or talk as if you are not there. our clients tell us they feel they are not even in the conversation.”
it’s one of the reasons gillespie wrote the letter.
“this loss leads to isolation, a sense of ‘nothingness,’ and sadness as the world around me shrinks.”
research will bring hope
dr. silke cresswell, director of the pacific parkinson’s research centre at ubc, calls psp “an orphan” due to a lack of awareness and a lack of research funding.
“it’s a heartbreaking condition,” said cresswell.
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in 2024, the research centre was designated a curepsp centre of care. the affiliation connects b.c. to other international psp research projects, including treatment trials. that gives cresswell hope.
“research is the only way to change the situation,” she said. research is focused on the accumulations of tau proteins in the brain, which are associated with psp as well as alzheimer’s and parkinson’s, and trying to develop biomarker testing and treatments.
dr. silke cresswell says psp is a ‘heartbreaking condition.’
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the centre has a biobank to collect and store brain tissue for future research, and runs a donor-funded online program that doesn’t require a doctor’s referral. the b.c. brain wellness program address gaps in care for those with chronic neurological conditions, including psp, with physical exercise classes, caregiver support and other interventions.
for anyone who suspects they or a loved one has undiagnosed psp, cresswell said, “you are not alone. reach out. get the information. get involved. ask your gp to refer you to a movement disorder clinic.”
that may not be as easy as it sounds. with the aging population, there simply aren’t enough movement disorder neurologists in canada to meet the demand when something as challenging to diagnose as psp develops, said cresswell.
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the orphan disorder has not had the attention that als has received, thanks to the viral 2014 ice bucket challenge, despite being more common.
“we need another ice bucket challenge,” said cresswell.
or take up the challenge gillespie makes in his letter.
connect with others. say what is in your heart. drop a plumb line down to deeper waters, where words still swim, bright and alive.
“please remember the value of speech, the joy of facing one another with emotions on your face, the pleasure of touch. please continue to cultivate this blessing before it is lost to you through disease, or is crowded out by rapid advances in technology.” — brian gillespie
for more information on the psp support group, write to curepspbc@gmail.com.
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