Not wasting a single second

October 2023 Good News

When Jeanette Fisher Pynn suddenly found she could not flatten her foot during a run, she visited her doctor for advice. For many years following this incident, her medical team treated her foot problems with orthopaedics and topical creams. Only when the entire left side of her body seized up following a jump into the Adriatic Sea during a vacation did alarm bells go off indicating that something more significant was happening.

Until that point, the Bowen Island mother of three had been an enthusiastic runner, having completed one full marathon and several shorter races in her life. Knowing something was wrong, Jeanette went back to the doctor, where she underwent numerous tests that delivered a shocking diagnosis: multiple system atrophy (MSA). A close cousin to Parkinson's disease (PD), this condition differs by the fact that most diagnosed individuals pass away from the illness within a decade.

After fully grasping what the diagnosis entailed and coming face to face with her own mortality, Jeanette knew she had to find a community of support to overcome the biggest challenge she had faced yet. She saw Larry Gifford on Global News, talking about his PD, as well as starting his podcast, When Life Gives You Parkinson’s, with his wife, Rebecca. Jeanette thought to herself, “I have to meet them.” In the spring of 2019, Jeanette and her husband Barry travelled to Vancouver because they read Larry and Rebecca would be at Parkinson Society BC’s Annual General Meeting. This encounter marked the beginning of a years-long friendship.

Two years after her MSA diagnosis, Jeanette’s friends, including Larry and Rebecca, urged her to get a second opinion due to the lack of progression of her condition. Their persistence resulted in an appointment at the Djavad Mowafaghian Centre for Brain Health at the University of British Columbia, where her new neurologist said that it was certainly Parkinson’s disease, not MSA. Jeanette recalls crying tears of joy. “The MSA diagnosis had me planning for my death, and the Parkinson’s re-diagnosis had me planning for my life,” she says.

Jeanette after DBS surgery

For five years, Jeanette had been successful at keeping her PD symptoms at bay with a combination of medication, exercise, the support of loved ones, therapy, and a general positive attitude. However, when things began to change, her neurologist asked her if she’d considered Deep Brain Stimulation (DBS) surgery, as she was a great candidate. Jeanette ended up having the surgery on April 11, World Parkinson’s Day, in 2023. Before her DBS surgery, she was only sleeping two to three hours a night, every night. She was unable to enjoy the things many individuals take for granted, such as drinking a cup of coffee, dressing independently, or driving. Compounding these challenges, Jeanette faced stigma in public because of her profound dyskinesia. And the progressing symptoms of PD also took from her what she valued dearly: her ability to run. After DBS surgery, Jeanette says she has her quality of life and “mojo” back, and is running again, upwards of six kilometres at a time and gradually increasing the distance.

Jeanette says she can’t imagine how hard facing Parkinson’s would be without a support network. Friends and family have always meant the world to her. Jeanette’s community of faithful supporters have not hesitated to show her that they are behind her every step of the way. This year was the fifth Parkinson SuperWalk Jeanette has participated in, and she surpassed her fundraising goal because of the generosity of her loved ones. “I don’t think I would have had the strength to keep going on without every single one of them,” Jeanette says.

She says she is living proof of the life-changing benefits of DBS and is grateful for the advocacy work Parkinson Society BC has done to make this surgery more accessible for British Columbians, including helping make possible the hiring of a second neurosurgeon to perform this procedure. As Jeanette reflected on her journey, she realized the new lease on life DBS gave her made her want to spend her time wisely, surrounded by the love of those she treasures most. “I don’t want to waste it – not one single second!”