If there is one word to describe Valerie Garneau, it would be ‘relentless.’ Valerie along with her husband Joel serve on the board of directors for Defeat MSA/Vaincre AMS Canada.
The members of her tight-knit, French-Canadian community would certainly agree with the descriptor of Valerie as ‘relentless.’ There, she is all about making a positive difference. Over the years, Valerie has been seen on the board of the local Chamber of Commerce, has served on the school board, and has pioneered as the first female president of The Corporation of Thanatologists of Quebec, a professional organization dedicated to something special to her: the family business.
“We have a weird dynamic,” Valerie’s sister Marie said, chuckling.
Indeed. Valerie, Marie, and their 73-year-old father run the family funeral home business, with Valerie serving as the financial director. The business has chugged along for decades, providing a valuable service in their community. Somehow, Valerie finds the time to be a mother to three children, aged 22, 19, and 16.As 2018 came along, Valerie began to notice a few behaviors forming that seemed out of the ordinary. They were little things, mostly. She would trip out of nowhere. She would try to go through a doorway and hit her shoulder on the frame. Her writing skills were not quite the same, with the words often slanting diagonally across the page.
What Valerie was actually experiencing was micrographia, a common affliction among MSA patients that causes handwriting to askew.
As these incidents grew in occurrence, Valerie and her family wondered what might be causing these odd behaviors. Much like with many MSA patients, Valerie was first misdiagnosed. Doctors reasoned she was suffering from a hernia that was crushing nerves in her spine, which would explain her motor troubles. As such, Valerie underwent surgery to fix the perceived ailment, and was told to be on bedrest and move sparsely for four months.
“During that period was when she went downhill,” Marie said.
By September of 2019, Valerie struggled to get into cars. Her speech, one of her most powerful attributes, began to suffer.
“We would try to rationalize what was happening. ‘Oh, she just had surgery, it’ll improve.’”
But no improvement came. By December, Valerie began to undergo nearly every test under the sun. Unfortunately, but not unsurprisingly, Valerie had even brought up the possibility of her having MSA to her doctors, but they told her it was not, flat out, that she did not have MSA. It was so rare, they said, that the chance was minute.
But by March of 2020, the diagnosis was in. Valerie indeed had Multiple System Atrophy all along. Just as the diagnosis came in, so swept in the global pandemic we all know and disdain. Her trips to Hawaii and Germany canceled. Her time in public now limited. Worst of all, getting in to see a doctor became that much harder.
But, as her family has come to learn, there is not much that can derail Valerie. Since her diagnosis, and since the pandemic, her relentless spirit and will to spark charge remains as strong as ever. In addition to being a patient representative for the Defeat MSA/Vaincre AMS Canada, Valerie has become determined to raise awareness of MSA in her local community — an area where little is known about MSA, in part due to the disease’s rarity, and in part due to the French language barrier.
Valerie has been in French newspapers, on national radio with FM 93’s Dupont in the Morning, and has even received the high honor of the Medal of The National Assembly, an award given to her by the President of the Assembly and Member of Parliament Hon. François Paradis — all in the name of raising awareness for MSA.
In addition to her media runs, Valerie has taken her mission a step further by organizing a foundation to raise funds amongst friends and community members. The hope is that the foundation will raise awareness on a local basis, with the funds going towards building the larger MSA Canada. A French-Canadian voice, naturally, is important to her. After all, Quebec is where she calls home. The place where Valerie has spent decades contributing to the community.
The fight is far from over. So of course, Valerie just keeps working. Every day. Even, at points, at the behest of her family.
“Sometimes we say ‘why is she doing that,’ she needs to think of herself,” Marie said. “But that’s just how her brain is programmed. She’s pushed to do that.”