6 minute read
Living with MND - Chantal's Story
Chantal is 64 years old and first experienced Motor Neurone Disease (MND) symptoms around 16 years ago. It took three years to confirm her diagnosis which she received in 2012. Her doctor didn’t give her much information and instead told her to go home and research MND. She found that she had an average of 2.5 years to live. At the time, she had no idea just how much her life was about to change, nor that she would defy medical expectations and continue living with the disease for over a decade and a half.
Chantal is French and studied to be a chef from the age of 15, a career she enjoyed until the age of 21 when she met her husband Kendall in France while he was on a church mission. Six months later she was on a plane down under to get married to the love of her life. They built a life together, raising two children, Angelique and Steven, and later welcoming five grandchildren.
Chantal’s journey with MND has been one of resilience, adaptation, and an unyielding determination to make the most of every moment. Despite the challenges that have come with the disease, she remains an inspiration to those around her, demonstrating strength and perseverance in the face of adversity.
Her symptoms started subtly. She used to walk daily with her husband Kendall and started to feel her left foot flicking. She played basketball for 20 years and thought her issues may have stemmed from a back injury and even had surgery for it, which didn’t alleviate her symptoms.
Chantal saw around 20 doctors and specialists from 2009 to 2012 and went through a series of tests resulting in her MND diagnosis in 2012. Like many who receive an MND diagnosis, she didn’t know much about MND. “I had no idea what it was, absolutely none!” she told us.
“The doctor said, ‘You go home, you go on the computer, and you will be horrified.’ And I thought, ‘My goodness what is this?’ You know, no explanation, nothing! And it was very scary. So I went home and then I verified everything. I couldn’t believe it!”
When asked how her diagnosis has impacted on her, Chantal responded “I just tried to live my life. I didn’t change anything because I tried to be positive. I have so many friends, a lot of family. I found myself being busy. You don’t think about it.
But that’s me. I just keep going. Nothing will stop me, and it doesn’t.”
Chantal leaned on her loved ones for support, including her husband Kendall, who was by her side every step of the way. However, life had another cruel twist in store, Kendall was diagnosed with liver cancer in 2014. This came as quiet a shock as he lived a very healthy lifestyle, never drinking or smoking. After eight years of chemotherapy treatment - while continuing to care for Chantal - Kendall passed away.
Living with a progressive, debilitating disease like MND has it’s challenges. Chantal shared “It can be very depressing. You see your body changing every day. Some days are okay, some days are not when it comes to your strength. And you’re thinking, ‘Maybe tomorrow my respiratory is gonna give up. Maybe tomorrow I won’t be talking.’ So you think about all this, but for myself, I’m thinking, ‘Okay, I know it’s not that. It won’t be tomorrow; it won’t be today.’
Over the years, Chantal’s MND symptoms have progressed quite slowly. She used a walking stick for a while, then a walker, then progressed to a scooter, but she now relies on an electric wheelchair for mobility.
Her hands are very weak and she can’t hold things anymore meaning she can no longer enjoy her passion of French cooking. Thanks to the NDIS, Chantal has 24-hour in-home care. She enjoys passing her culinary skills along to her carers and family.
Despite physical limitations, Chantal has found ways to continue pursuing her passions and interests. She has developed a deep appreciation for writing and social media, sharing her stories and using them as outlets for expression, emotional wellbeing, connection and education. Inspiring others to be better in their own lives.
Having a positive attitude towards living with MND is one of the reasons Chantal believes she’s managed to live beyond initial expectations. She’s a joyful person and loves life. Other things keep her going too. She said “I go to church on a Sunday. I have a lot of friends. I teach on a Sunday. I do the newsletter for the whole congregation. I try to keep busy. I have lots of friends that come for dinner, family… When you have distractions, it distracts you from what you have, what you’re feeling, pain, or whatever. You forget about that. So, for me to have friends around me makes me forget what I have.”
She also acknowledges the role that organisations like MND Queensland play in helping people navigate the complexities of the disease. From emotional support to practical assistance, these services can make a world of difference in the lives of those affected.
Chantal has seen a great evolution in MND
Queensland and the services we provide since she first contacted us in 2012. One of the most valued services we provide Chantal is short-term equipment hire for her annual family holidays in Canungra where around 100 of the Pitman clan gather.
When asked what she’d say to MND Queensland’s donors and supporters that make our work possible she said “Thank you. My message is, continue, do not stop. And let’s put it out there that you need to keep doing what you’re doing. And even better!”
While MND remains a progressive and incurable disease, Chantal continues to face each day with unwavering determination. She hopes that increased awareness and funding for research will one day lead to better treatments, and ultimately, a cure.
For now, she focuses on what she can control— cherishing the time she has, staying connected to loved ones, and finding joy in the everyday moments. Her story is a testament to the power of resilience, love, and hope in the face of life’s greatest challenges.
We asked Chantal what advice she’d give to someone newly diagnosed with MND and she replied “Don’t give up. It’s not the end. People will help... MND Queensland... You can get everything you need with the NDIS… Get the right people to help you. That’s the main thing, get the right people and very quickly.”
Chantal’s journey is an inspiration to all who hear it. Her strength serves as a reminder that while MND may take away many things, it can never take away the spirit of those who refuse to be defined by it.
