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Hope Dignity Awareness
Huntington’s Victoria is the leading specialist service that supports individuals impacted by Huntington’s disease.

Carer Profile: Michael

With Carer’s Week fast approaching (16-22 October), it is timely profile one of our wonderful carers. I would like to take to opportunity to thank Michael for very kindly sharing his story. 

Michael’s wife Sue came from a large family of 9 children, 4 of whom tested gene positive. Sue was the first one diagnosed out of her siblings when she started getting movements and the GP in Moe suggested that they see a Neurologist. Michael recalls the experience as "terrible and shocking".

HD has changed Michael’s life in a several ways, one of which was that Sue’s diagnosis precipitated his early retirement. Providing care for his wife and two sons, who both have disabilities, became his new full time job. Although the couple had a hard time adjusting to the impact of Sue’s diagnosis initially, they both made a decision overall to stay positive and focus on the present. This has enabled them to maintain control over their lives and enjoy their time together.

Michael’s devotion to his family is unwavering. “I love my family” was his response when asked what keeps him going as a carer. His daughter in particular is a great help with cooking and general household tasks. Sue also receives support at home which provides respite for Michael, allowing him to have a break from his caring role and take time for himself. Despite training Sue’s support workers well, he maintains that no one can do the job like he can.

In 2014, after a friend nominated him without his knowledge, Michael received a Disability Carer Award. Michael described receiving the phone call and letter inviting him to attend the award ceremony, where he recalled hundreds of people in attendance. Much to his surprise, Michael heard his name announced as a winner of the Victorian Carers Award. He was later flown to the Gold Coast for the National Award Ceremony.

Michael is a firm believer in the importance of recognising carers' work and urges you to nominate dedicated carers you may know. Michael believes that it takes real devotion to care for someone with HD. In the truest sense of phrase “family first”, he has clearly exhibited this devotion to his family over the last 16 years.  When asked what he wants others to know about HD, Michael looks toward the future and reminds us that there is hope for a cure someday.

Did you know that anyone can nominate a carer for a Carers Award? If you know a devoted carer who you think is eligible for the award, don’t hesitate to nominate them! Click here for more information.

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