I love you just the way you are

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.

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 observed his symptoms daily and noted that they 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 is slurred and difficult to understand. His coughing and choking frighten both of them and Nicole realizes that he may just choke to death.

The 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.

Day-to-day life brings changes and routine is needed to help ground people with Parkinson’s. They share meals and conversations, and make it a point to laugh every day. Each Friday is Family Day and they set up a video call at 5PM with family members. When the weather permits, they go to a mall to walk indoors, and Andre is more aware of his limitations. Long road trips are no longer possible as some hallucinations occur unexpectedly and stopping on the highway is not always possible.

In 2016, Nicole 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 with 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.

Andre 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, arranged for the numerous steps that will have to be taken to transfer Andre from Shawinigan to Trois Rivieres then 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 donate.parkinson.ca/goto/stopPSP program.

“I wish we could find more ways to educate people on PSP and to build awareness around donating your brain to science as well as to collect money,” adds Nicole.

As a care partner, Nicole is keenly aware that she needs to take care of herself too. She loves to cook and to read. Andre 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 Andre 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.”

I said I love you and that’s forever
And, this I promise from the heart
I could not love you any better
I love you just the way you are”

Billy Joel, 1977

For more information, listen to this Parkinson Canada webinar – Dr. Connie Marras, Toronto Western Hospital Movement Disorders Centre. www.parkinson.ca/event/psp-and-multiple-system-atrophy-signs-symptoms-and-treatment/

Questions? Contact us at 1 800 565 3000 – we are here to help – no matter what.