Taking a chance with Huntington’s Disease

03 December 2018

Foresight is a gift worth treasuring because it allows one to know what the future might hold. Andrew Francis often circles this concept when thinking about how different his life could be. From a young age, he knew about a hereditary gene that might, or might not affect his life, and future generations. It wasn’t until 2002 that Andrew got his answer.

Huntington’s Disease is a neurodegenerative disorder with no cure and a 50 percent chance of being diagnosed if the gene is already present in the family. With this in mind, Andrew started working with a Perth neurologist to document his journey, and it was during this time he started displaying symptoms including twitching hands and feet, dropping things and his thoughts slowing down at the age of 45.

“I was shocked when the doctor confirmed I had Huntington’s. I thought I had evaded the gene by that stage in my life. My Aunt was already living with the condition and also my mother, who was diagnosed a couple of years before me. That prompted me to go ahead with testing,” Andrew said.

Andrew and his wife Sophie decided to tell their young sons John and Greg when they were old enough to understand in 2011, after Andrew’s mother passed away. That put the condition into context for them since at that time Andrew was still asymptomatic. Having worked with the Neurosciences Unit and Huntington’s Western Australia and then linking in with MSWA, the Francis family found a new sense of ‘normal’ and felt reassured they would be able to manage the condition’s progression.

Through the help of the experienced MSWA staff and the implementation of a National Disability Insurance Scheme (NDIS) plan, Andrew started accessing occupational therapy through MSWA’s home visits, respite at MSWA’s City Beach facility, and domestic support at home.

“Thanks to MSWA, family and friends, I’ve retained my independence and kept my mind and body active. I enjoy the MSWA Outreach activities we take part in, and the chance to connect with other people living with Huntington’s. I used to love to cook but it took too long after my symptoms worsened. MSWA suggested some help around the home and a support worker now comes two hours every week, and together we make spaghetti Bolognese and several other dishes,” Andrew said.

Andrew is just one of the many Western Australians who benefit from MSWA’s support for people living with a neurological condition.

“Over the last 11 years we have invested more than $13.9 million into research for MS and other neurological conditions. This year alone, our contribution was a record $3 million into neurological research. This unprecedented investment is only made possible by the people of Western Australia’s ongoing support,” said MSWA CEO, Marcus Stafford AM.

“MSWA is committed to developing a growing network of facilities which provides services and support for people living with neurological conditions across Western Australia. To manage the ongoing demand over the coming years we have a major building program planned, both in metropolitan and regional WA, with an $8 million high-support accommodation and service facility opening in Perth’s northern suburbs soon. As well as bricks and mortar we also want to continually increase the types of services, and hours of service we provide to our customers who need it.”

“We are committed to improving the quality of life for people living with neurological conditions and today and every day, MSWA are proud to support families like the Francis family. And, it’s something we want to continue to do for many years to come,” added Mr Stafford.

Andrew’s life has dramatically changed since his diagnosis, but he is grateful for the chance to show his sons that you can still enjoy life with Huntington’s.

Today, we celebrate International Day of People with Disability with the aim of increasing public awareness, understanding and acceptance and celebrate their achievements and contributions.