6 minute read
Living with MND - Stella's Story
Stella is 61 and lives in Cairns with her husband, Kevin. She’s a mum to four children and a grandmother to three including Leo who is three years old.
She said “It is important to note how valuable my time with Leo is as his mother passed away suddenly when he was 10 weeks old and I have been helping care for him and my grief stricken son since then.”
Stella noticed a slight lisp in March last year and she had no idea it was the beginning of a journey that would change her life.
Her tongue felt swollen, her speech was slightly slurred, and she was experiencing involuntary gasps of breath. A video message to her brother in the UK prompted an urgent reply: seek medical advice. By the time her GP could see her, the temporary drooping of her mouth had passed, but Stella knew something was wrong. After weeks of tests, a neurologist delivered a diagnosis that was as life-altering as it was devastating: motor neurone disease.
“On first diagnosis, I was in shock,” Stella recalls. “These things happen to other people, not me. How could I have a terminal disease? I felt fine apart from my speech problems. Surely the diagnosis was a mistake.”
The tears and fear followed quickly, particularly as she grappled with how to break the news to her children. Stella wanted to understand the disease and how it would progress. While her neurologist provided some information, it was MND Queensland that truly stepped in to help Stella regain a sense of control over her life.
“The value of MND Queensland is vastly underrated,” Stella says. “They have taken control against this disease, giving me some say in my life again and greatly reducing the emotional stress.”
MND has brought a series of debilitating physical changes to Stella’s life.
“My speech deteriorated quickly from a slight lisp to now only making grunts and sounds. Not even my husband can understand me anymore,” she shares.
Eating has become a challenge, as Stella has lost much of the use of her tongue and often bites her cheeks or tongue. She carefully manages small bites of mushy food, pushing them around her mouth with her fingers.
“I often bite my inside cheeks as my facial muscles have become lax,” Stella adds. “Drinking is another struggle. I have to sip liquids slowly, or they pool in my throat and choke me.”
Stella’s mobility and physical strength have also declined.
“My walking is becoming difficult. I am slow with small steps and tire easily. My stability is frail, and I’m always nervous in company as I fear being knocked off balance. I’ve already had a few falls,” she explains. “Even sleeping is hard. Depending on my position, I can struggle to breathe.”
Stella has experienced painful cramping spasms, especially in her feet, and an increase in nasal and saliva secretions.
“I can’t lie flat or I start to drown in my own saliva,” she says. “I permanently have a hankie for my runny nose and constant saliva. It’s exhausting.”
“The worst thing to me is the inability to kiss my husband any longer,” she says. “Just a simple sign of our love for each other has been taken away by the loss of facial muscle use.”
For Stella, the emotional toll of MND has been just as profound as the physical symptoms.
“Often, people commented that I looked fine. That they wouldn’t know I had anything wrong except for my speech,” she says. This visual judgment made it hard for some medical professionals to take her seriously initially, leaving Stella to advocate for herself despite her declining ability to speak.
“I’ve had to fight to be taken seriously. Some doctors even ignored me and spoke to my husband instead,” Stella recalls. “My husband often had to correct their behaviour.”
The emotional strain of being misunderstood and overlooked has been overwhelming. Stella is deeply grateful for the psychological support she receives from Bernie, her psychologist whom has lived-experience with MND.
“The physical changes can be adapted to with assistive technologies, but the emotional changes are hidden and hard to treat,” Stella explains. “Psychology is vital. Bernie has helped me value the time I have left in the best way possible and understand how to support my family as they come to terms with my condition.”
Psychology has also helped Stella process the trauma her family is experiencing.
“My husband is now faced with being on his own in retirement, and all his plans have been forcibly changed,” she says. “The burden is enormous for him, but Bernie has given us both tools to cope.” MND Queensland has been a cornerstone of support for Stella and her family. Her support coordinator, Justine, has helped Stella navigate complex systems like the NDIS, ensuring she has access to essential services and equipment and even connected her with Bernie.
“Justine’s wide-ranging support has been incredible. Without her help, my quality of life would be in total chaos,” Stella says. “The limited time someone with MND has left should be productive and valuable, not just for them but for the family they leave behind.”
Stella appreciates how MND Queensland’s team offers compassion, expertise, and a willingness to learn and adapt to each client’s unique needs. Through their guidance, Stella has found new friend- ships, assistive technologies, and a sense of community.
“MND Queensland has had my back without ever knowing me,” Stella shares. “They stepped in and gave me a level of support I never knew any society or group could be capable of.”
Stella’s journey highlights the urgency of raising awareness about MND and the need for greater government support. Despite MND Queensland’s vital role, the organisation does not receive regular government funding - a fact that Stella finds appalling.
“This disease is growing in numbers, and the demand for assistance will grow alongside it,” she says. “The government must support services like MND Queensland and fund research into this devastating disease.”
To those who donate to MND Queensland, Stella offers her heartfelt gratitude. “Thank you for being compassionate and empathetic. Your support makes a difference in the lives of people like me,” she says. “I can never fully explain how much it means to my husband and me to have MND Queensland by our side.”
Stella’s story is a powerful reminder of the importance of services provided by MND Queensland. As the organisation works to introduce a new psychology service in 2025, your support is more critical than ever.
This Christmas, give the gift of hope and dignity to Queenslanders living with MND. Donate to MND Queensland’s Christmas Appeal and help fund the services that empower people like Stella to live their remaining time with respect, care, and the best quality of life possible.
To donate, visit www.mndqld.org.au/campaign/90/ christmas2024 or call us at 07 3372 9004. Your generosity makes a world of difference.
