My name is Jacques Seguin. I’m a husband, a father of four incredible daughters, and a proud grandfather to seven grandchildren. I spent much of my life in education – as a teacher, vice-principal, principal, and superintendent – always surrounded by people, learning, listening, and leading. I’ve also always loved staying active through racquetball, Tai Chi, pool, and even the occasional pickleball game when I’m feeling adventurous. 

But the most meaningful part of my life, especially since Parkinson’s entered the picture, has been something even more powerful than movement. It has been connection – the relationships that have carried me through uncertainty and helped me continue living fully. 

Telling the people I love 

When I was diagnosed with Parkinson’s in December 2003, it felt like being hit in the forehead with a two-by-four. That same day, I told my daughters.  

Sharing that moment with them was one of the hardest things I’ve ever done, but it was also the beginning of something important. We faced it together. My family was always my foundation, and over the years their love has reminded me repeatedly that Parkinson’s could change my life, but it wouldn’t take it away. 

I will always strive to be a person, father, and grandfather living with Parkinson’s – not someone controlled by it. 

Losing independence and finding support 

By May 2004, I had to stop working. My body simply could not keep up. For someone who had spent his life supporting others, it was incredibly difficult to suddenly feel like I needed help just to manage daily life. I even stopped driving for a time because of vision issues and dry eyes, and that loss of independence was painful. 

What carried me through those moments was knowing I wasn’t alone. I had people beside me – family who supported me, and eventually, a wider community of people who understood what it meant to live with Parkinson’s. 

The power of shared understanding

Over time, I began to rediscover myself through movement. Racquetball made me feel like I had my old body back. Tai Chi helped me stay grounded. Exercise groups reminded me that I could still participate fully in life. But just as important as the activity was the community around it – people who understood without needing explanations. 

I also created a personal rule I call my “five minutes a month.” For five minutes, I let myself cry, scream, and feel jealous of the life I used to have – without guilt. And then I move forward. I haven’t needed those five minutes in over a year, because connection has helped me cope in deeper ways. 

Mentoring, volunteering, and giving back 

One of the most transformative decisions I made was undergoing deep brain stimulation (DBS). It changed my life – I could drive again, see farther, and feel more like myself. Now, I speak with others who are preparing for DBS, offering reassurance and honesty before surgery. 

I also lead a Parkinson Canada support group in Orléans. It’s a small group – maybe six to ten people – but the conversations are powerful. Sometimes the greatest support is simply sitting with someone who understands. 

I truly believe our time is the most valuable thing we can offer. That’s why I volunteer, mentor, and share my story – because this is not the end of my story. It is simply a new chapter. 

Letting people in 

If I could offer one piece of advice to someone newly diagnosed, it would be this – don’t keep it to yourself. People may not always know what to say, but give them the chance to walk with you. Open the door and let them in. If they don’t come in, that’s okay too. But give them the opportunity. 

Parkinson’s is part of my life, but it is not all of me. What defines me is love, family, friendship, and community – the relationships that continue to hold me up. Because in the end, we don’t get through this alone. 

And I’m still here. Still living. Still connected.