“It’s a bit of a mystery how Steve got it,” remarks Ann Wyatt, speaking of her husband Stephen’s Huntington’s disease diagnosis.
Huntington’s disease is a genetic condition, in which an elongated Huntingtin gene is passed down from a parent. In Steve’s case, he is the first in his family to have been diagnosed with the condition.
The couple suspect that Steve’s dad passed the gene on to him. However, Steve’s dad lived until he was 91, which would be unusual for someone with Huntington’s disease, adding to the puzzle.
“His neurologist has concluded Steve just developed it. It’s still a mystery,” explains Ann.
Steve’s neurologist is based at the Neurosciences Unit (part of WA Health), a facility that offers support and free predictive testing for a long Huntingtin gene. Steve is thankful that the other members of his family, including his brother and Steve’s three daughters, have all tested negative. The gene will stop with him.
Steve and Ann raised their daughters – Jennifer, Ashleigh and Courtney – in their gorgeous family home of 30 years, in Bull Creek. Over the years, Steve’s work as a Certified Practicing Accountant in the offshore energy industry gave the family the opportunity to live and travel in Europe. Steve spent time working in Aberdeen, Houston and New Orleans.
It was in his early 50s that Steve started experiencing a twitching in his eyes, then some involuntary arm movements. Investigations by the GP and various psychiatrists put it down to stress. Due to the lack of family history, no one picked up that it might be the result of an underlying neurological condition.
It was six years later that Steve was finally diagnosed with Huntington’s, aged 58. His speech had begun to slur, which prompted a visit to a neurologist and a DNA blood test. Neither Ann or Steven had ever heard of Huntington’s disease – or ‘Huntington’s chorea’, as it used to be known.
“We got in touch with MSWA straight away,” says Ann.
“I looked into the management of Huntington’s disease and MSWA offered the most specialised help. The physios, OTs and speech therapists all know how to treat neurological conditions.”
“They’re excellent,” adds Steve, who attends the MSWA Services Centre in Wilson. His NDIS plan covers his services and support needs, something the couple are hugely grateful for.
“I do hydrotherapy with Ashleigh, and physio with Marga. She puts me through my paces every time!” says Steve.
He recently received a ‘ThevoCalm’ mattress – a special mattress that absorbs the involuntary movements while Steve’s asleep, made in Germany and originally designed for people living with Parkinson’s. “It’s fantastic,” says Ann. “If it wasn’t for Colette, Steve’s OT at MSWA, we wouldn’t have known about it.” The expense has been covered by his NDIS plan.
The main symptoms that affect Steve currently are speech and swallowing difficulties. He also has problems with balance, however this has been largely resolved with medication.
“The medications through the Specialists at the Huntington Unit help a great deal,” explains Steve. There is no known cure for Huntington’s but there are various treatment options that target symptoms.
Steve retired a couple of years earlier than planned, aged 58. He loves walking and is a big footy fan – his two good mates take him to all the Dockers’ games, something they’ve done for years.
Ann, who works as a Policy and Research Officer in the public sector, recently went down to a four-day working week, to allow her Fridays at home with Steve.
The pair recently celebrated their 41-year anniversary which coincided with all their daughters being in Perth for the first time in a while.
On weekends, they love spending time with their two young grandsons, Odin and Ivar, and say they choose to look at the positive side of Steve’s condition.
“We were actually quite lucky not knowing for so long,” says Ann. “We might have been reluctant to do all the things we’ve done.”
“Every day’s a victory,” declares Steve.
If you'd like to find out how MSWA can support people living with a neurological condition, call us on 1300 097 989 or fill in the below form.