Support, Care and Love
When Bruce was diagnosed with MND in 2021, his youngest child, Shauna asked, “Are you going to die?”. There aren’t many questions tougher to hear, let alone answer. Bruce simply responded with “No, I’m not going to die now. There’s plenty of wiggles in this worm left. There’s plenty of good living to happen.” – And that’s exactly the attitude Bruce, his amazing wife, Natalie and their two children, Lincoln and Shauna, have lived with ever since.
Two and a half years on, the family have remained committed to supporting each other and living in the moment. Bruce says, “All the plans of working hard towards retirement and travelling, the thinking changed. It’s more about day-to-day for me now. It’s getting the most out of each day and doing what I can. Keeping in a routine.”
For MND Victoria’s 2023 Christmas Appeal, the family wanted to share their story to hopefully inspire others to live every day with a positive outlook and highlight the importance of “support, care and love”. Bruce and Natalie know that without the huge amount of support they have around them, life would be so much harder. As well as the many incredible friends, family members, neighbours, colleagues, and many others they have met within the MND community, Natalie is immensely thankful for all of MND Victoria’s services because as a family, they have utilised each one.
Please take a moment to watch their inspiring story.
One of our newest services is our Carer Support Programs. At MND Victoria we realise that it’s not just the person living with MND going through the journey - it’s also their loved ones who provide varying levels of care and support, depending on how advanced their MND is. The programs provide carers with the information, support and assistance they need to manage the caring role.
As Bruce says in the video:
Caring for me as an individual and caring for my family who are my carers I think is a real thing that MND Victoria does that sets them apart.
Natalie absolutely adores caring for her husband; however, she understands the importance of taking a break and treating herself to something that fills her cup - and that’s what our Carer Programs enable. Natalie recently attended one of the programs funded by our Carer Programs initiative and said, “I went to the Carer Wellness Program in Mornington, and it was fantastic. I met four other ladies, and we got a WhatsApp group going. We check in on each other every now and again.
We did painting, relaxing, sharing and some laughing – and I did some crying. It was a great day, really powerful. I could see it was a relief for the other ladies to just come and do something and meet people who do understand what it’s like to care for a loved one with this disease. Because if you’re not going through it, you don’t understand.”
If Natalie and all the other carers (who certainly didn’t ever imagine themselves in this position) aren’t supported or don’t have an avenue to look after themselves, it makes it so much harder on the person with MND, and the family and friends around them.
Along with the support Natalie provides Bruce, he says he couldn’t live as well as he is without MND Victoria being in his corner each and every day. He says, “It’s a really critical service. Understanding what we need and how we like to roll, and then being able to fit in with that and get the right person or service for me or the family, is pivotal.”
Bruce has his own MND Victoria Advisor & Supporter Coordinator who walks the journey with him. He is also a huge fan of our world-class Equipment Service that allows him access to all the various assistive equipment he will require as the disease progresses. At the moment he loves his recliner chair and special table that allows him to continue working from home whilst remaining as comfortable as possible.
As stoic and inspirational as Bruce is, he says he has learnt a lot about perspective. “I’ve always been someone who looks at things from someone else’s perspective. So, the key thing I’m concerned about is: ‘What’s my impact on other people’. But then it really boils down to that thing that I’m no longer a burden. I will ask for help. I’m on this journey and there’s a whole lot of people on the journey with me, and they’re supporting me and lifting me up and carrying me.
We're on this journey together. But I’ve also got to be careful and understand that not everyone can do it all.
This Christmas, we are asking for your support.
If you’re in a position to donate, please know it will directly help people impacted by MND. People just like Bruce and Natalie. MND Victoria is currently supporting 503 people living with MND, plus their loved ones. The reason our support services have continued to increase and improve since our inception in 1981 is thanks to the generosity of our supporters. We receive limited Government funding and rely heavily on donations to ensure people living with MND can live as well as possible for as long as possible.
We asked Bruce why he wanted to share his and the family’s story for MND Victoria’s Christmas Appeal to help raise funds for others impacted by MND and he said, “It’s the services. It’s the individual care. It actually impacts my life and changes it for the better. The other fundraising around finding a cure is important and great to have, but MND Victoria actually impacts the day-to-day lives of people living with MND. They change it to a positive. A cure may come, and we need to spend money on it, but we also need to spend money on the well-being of people with MND and what we can do now.”