With Huntington’s Disease there is a 50 per cent 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. I’d had experience with the condition through my Aunt, and my Mother was diagnosed a couple of years before me, which 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 them since at that time Andrew was still asymptomatic.
Having worked with the Neurosciences Unit and Huntington’s Western Australia (HWA) 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 with MSWA’s support.
Andrew's journey with the NDIS
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 Kaylah now comes two hours every week, and together we make spaghetti Bolognese and several other dishes,” Andrew said.
Symptoms affecting Andrew now are memory loss, jerky movements, anxiety and difficulty planning things. He can no longer go for long bushwalks by himself or ride a two-wheeler bike, but he’s adjusted his lifestyle to suit his needs including riding a tricycle and walks with friends. He recently completed a sponsored tricycle ride from Bassendean to Mandurah.
Andrew’s life has dramatically changed since his diagnosis. He had to retire from teaching in 2014 which he still misses, but now enjoys having the time to write, volunteer at the ‘Men of the Trees’ conservation organisation and he routinely visits the Perth Zoo. He is grateful for the chance to show his teenager sons that you can still enjoy life with Huntington’s.