In her small community of 200 outside of Yarmouth, Jackie is affectionately called the “unicorn.” Her endurance and optimism while battling a rare combination of diseases, including Parkinson’s, continue to baffle her medical team. As early as six years old, she recalls her fingers going numb and toes curling under. Then the choking began. Today at age 43 and mother to 17- and 13-year old daughters, she leads a support group of over 30 people and has become the voice of Parkinson’s within her community, and beyond. Here is her story.
Jackie Landry excelled in history, science and French studies. She loved to dance and wanted to share her passion for life through teaching. She completed her Masters in Rural Education and would teach history for 15 years in advance classes for gifted students.
She was doing the work she loved and yet, something was not right.
As Jackie got progressively weaker, she stopped teaching and worked in administration for three years. She completed her PhD in history when she had to stop working and studying altogether and go on disability.
Jackie found out through her medical team that her Parkinson’s probably began as early as age 16. “You have Parkinson’s disease,” her family doctor told her in June of 2014. Jackie was 39 years old and in disbelief as “only old people get Parkinson’s disease.” Then she felt somewhat relieved, as no one had been able to confirm with certainty the cause of her suffering. All she knew was that she had three neurological diseases, dystonia, epilepsy, bouts of choking, and no mental illness.
The official diagnosis brought on a flood of emotions, from grief to anger to sheer denial. Jackie felt isolated in her little village of 200. It was difficult to be around family and friends. She cried a lot as the symptoms progressed quickly.
Jackie found the strength to fight and was smart enough to know early on that she needed help and soon. She had never heard of Parkinson Canada before and reached out. She devoured the publications and other online resources Parkinson Canada provides. She asked lots of questions. She shared her findings with her caregivers and medical team. In time, she became a Parkinson Ambassador, as she was determined to become a strong voice, a fundraiser, a Parkinson SuperWalk participant, and a support group leader while on her own very personal journey to healing.
Life was getting harder, finances were a challenge and she became weaker as the Parkinson’s progressed and began to erode her independence.
It is harder to walk and her driving was limited. Jackie recently underwent surgery to remove five growths on her vocal chords. She suffered daily from choking and is grateful that the surgery was a success. She can speak and eat again. To ease the pain, the hospital team gave her fentanyl and she was already on Valium for her seizures. She is determined to lessen the 52 pills she takes daily and heal naturally, through yoga and dance. Sadly, Jackie is not a candidate for deep brain stimulation surgery.
Through Parkinson Canada, she spoke with several doctors including Dr. Joseph DeSouza, Associate Professor, Psychology Department, at York University. Parkinson Canada funded DeSouza’s research on the benefits of dance therapy for people with Parkinson’s and hopes to prove that structures of the brain activated by dancing are also connected to movement. If so, using dance or deep brain stimulation in those areas might relieve the motor symptoms that make it difficult for people with Parkinson’s to walk and to control movements. Next month, you can view Dr. DeSouza’s webinar online at Parkinson Canada’s Knowledge Network.
“My original goal was just to bring awareness so others don’t feel alone as I did….. But I desperately need a cure so that I may see my two beautiful daughters graduate.”
Jackie received several nominations, as an Everyday Hero of Parkinson SuperWalk for 2018. Her nominators recognized Jackie’s zest for life, great sense of humour and generosity of spirit throughout her journey with Parkinson’s disease. Jackie and members of her medical team and support group will be present at SuperWalk in Yarmouth on September 16, her third so far!
Register today to walk with Jackie and others like her in your community.
Parkinson SuperWalk takes place this September in locations across Canada. Join Jackie and other Everyday Heroes from coast-to-coast-to-coast as part of a cross-Canada movement of communities committed to changing the course of Parkinson’s in Canada. Join 10,000 participants bonded by their vision of a world without Parkinson’s.
To find out more about Parkinson Canada, SuperWalk, We are Family, Become an Ambassador, and other resources, visit parkinson.ca.