Nicole Therrien could not have known what was to come when accepting a blind date over 20 years ago.
For André Guimond, it was love at first sight and their lives changed rapidly as they moved in shortly after that first meeting. Living in Montreal, they shared a passion
for life and travelled the world. He taught her how to play golf and she helped him explore camping. Their love for each other was obvious, to the great joy of family and friends. Life seemed perfect.
In 2015, their careers took them from Montreal to Shawinigan, about 160 kilometres north and just outside of Trois- Rivieres, Quebec. It was an exciting time, moving into their new place surrounded by a peaceful forest.
However, one month after the move, André was diagnosed with Parkinson’s disease at the age of 68. “The first symptoms were typical of Parkinson’s disease: small handwriting, freezing of gait, stuttering, eating lots of sugar,” says Nicole. After several months of research, and copious note-taking, Nicole realized André’s daily symptoms were developing too quickly. As luck would have it, they could access specialists more easily in the Shawinigan area than would have been the case in Montreal.
Everything for a reason
In August 2016, André was diagnosed with Progressive Supranuclear Palsy (PSP), an uncommon neurodegenerative disorder caused by damage to nerve cells in specific areas of the brain that can mimic Parkinson’s disease in the early stages. The day after meeting with the specialist, André was in such shock that he could not walk at all for 24 hours.
More resources were sought. Medications were tested. Symptoms changed. His speech was slurred and he became difficult to understand. His coughing and choking frightened both of them and Nicole realized that he may just choke to death. Their support team grew, thanks to referrals from healthcare specialists to personal support workers and other services provided by the CLSC (Centre local de services communautaires, Local Community Service Centre)—free clinics run and maintained by the provincial government in Quebec.
In 2016, Nicole also contacted Danielle Blain, Managing Director of Parkinson Canada’s Quebec office. Over the next 2 years, they would share a lot of resources and experiences, including the fact that Danielle’s mother passed away from a neurological disease. Nicole was introduced to the Douglas Bell Canada Brain Bank, one of the rare brain banks in North America, with over 3,000 samples from people who suffered from different neurodegenerative diseases such as Parkinson’s disease, Alzheimer’s disease, and other dementias, as well as diverse mental disorders, including schizophrenia, major depression, bipolar disorder, and substance use disorders. “If you do not have the brain samples to work with, research will not progress towards better treatments,” says Nicole. André agreed that donating his brain would be an important step towards finding a cure, so others would not have to suffer. Together, they gathered the information, applied for acceptance into the Bank, and arranged for the numerous steps that will have to be taken to transfer André from Shawinigan to Trois-Rivieres then on to Montreal, after he passes.
It takes a village to support people with Parkinson’s and their families. It takes funding to perform the life- changing research into therapies that will improve quality of life today and eventually, provide a cure.
Nicole is organizing a fundraiser to support PSP research and refers to this as “making noise” to raise awareness. Her fundraiser is organized with tools provided through Parkinson Canada’s Fundraising Your Way http://donate.parkinson.ca/ goto/stopPSP program. “I wish we could find more ways to educate people and to build awareness around donating your brain to science as well as to collecting money,” adds Nicole.
Day-to-day life brought changes and it became clear that following routine helps ground people with Parkinson’s. Nicole and André shared meals and conversations, and made it a point to laugh every day. Each Friday is Family Day and they set up a video call at 5PM with other family members. Long road trips are no longer possible so when the weather permits, they go to a mall to walk indoors, and André is more aware of his limitations.
Self-care matters
As a care partner, Nicole is keenly aware that she needs to take care of herself too. She loves to cook and to read. André goes to bed fairly early and she has time to enjoy
a hot bath and a good book. She is surrounded by family and friends, and support workers who help ease the pain of watching André get progressively worse. On the difficult days, she showers often so the tears won’t show.
“I am angry at PSP but I feel privileged to support André. Our love is strong and we are surviving this terrible storm together. Thank God that André is still in my life.”
Adapted with permission from the e-Parkinson Post.
