TIM Collins is rapt his men’s shed friends want to learn a little more about the disease racking his body – a disease even he does not know a lot about.
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Ballarat East Community Men’s Shed will host an open awareness talk about Huntington’s Disease on Saturday. They will use the event as a fundraiser for research into the genetic neurodegenerative disease for which there is no cure.
Shed president Alan Davies said the talk was important to try and help one of their own any way they could.
Visits to the shed are a big part of Mr Collins’ week. He has just stepped this up to two days each week, relying on family to ferry him to and from the shed.
Huntington’s disease occurs as a result of a faulty gene which causes brain cell death. Mr Collins said the attack was inconsistent.
“It picks and chooses,” Mr Collins said. “For me, my head’s all right but my body is not doing what it wants to do. In my brother, his body is fine but it has affected his temperament.”
The most common symptom of Huntington’s disease is jerky movement of the arms and legs and difficulty with speech, swallowing and concentration.
Huntington’s disease has robbed Mr Collins of his independence. He does not like being managed, so has taken up practising mindfulness to help prevent this getting him down.
“The shed gives me something to do,” Mr Collins said. “I am able to get up in the day with a purpose, even though I am a bit slower at getting up compared to most.”
Huntington’s disease has similarities to motor-neuron disease and Parkinson’s disease, both which have higher profiles than Huntington’s, which was also a key reason why Ballarat East Community Men’s Shed wants to raise more awareness of it.
Shed members are encouraging the community to come along for the talk and stay for scones with jam and cream, made by the shed chef, for a gold coin donation.
Ballarat East Community Men's Shed is on Eureka Street. The talk, featuring the Huntington’s Victoria chief executive officer and Mr Collins, starts at 10am.