Julie Parker from Morcott will tackle Great North Run to support Huntington's Disease Association
When Julie Parker stands on the start line of the Great North Run she won’t be trying to beat any records, but an illness which has had a devastating effect on her family.
Having lost her first partner to Huntington’s disease when he was 48, she has recently found out her 32-year-old son has inherited the same condition.
Huntington’s Disease is a genetic condition which affects people both physically and emotionally. Initial symptoms can include behavioural changes, such as depression and mood changes.
It was a bout of depression which led to Julie’s first partner, Gordon, being diagnosed.
“I was in my 20s when I first came across Huntington’s, seeing Gordon’s mum, who was in the mid stages of the illness, having to cope with jerky physical movements and not being able to do much for herself,” said Julie.
“When Gordon was diagnosed, the Huntington Disease Association was a great support.
“It put us in touch with a family support group where we could attend monthly meetings to talk and share experiences with people going through the same difficulties we were facing. It proved to be a big help to us and met some very caring people who understood the condition.”
Huntington’s is a complex illnesses both physically and emotionally. In the late stages of the condition people require 24-hour care and has been described as being similar to motor neurone disease.
The Huntington’s Disease Association helps to pay for research into finding a cure, as well as physical therapies to help people with the disease lead more comfortable lives.
Julie has heard it said that if scientists can cure Huntington’s disease, that could help other neurological conditions such as motor neurone disease.
In addition to seeking a cure, the Huntington’s Disease Association also funds support for people who have the condition. This includes therapies to help with chewing and swallowing, which becomes problematic as the disease progresses, as well as promoting continued physical activity.
Julie, who lives in Morcott, has completed the Great North Run once before - in 2009 - and ran the London Marathon in 2019, raising about £2,000 for the Huntington’s Disease Association. This time she hopes to reach a £500 target.
Julie can be sponsored through her JustGiving page.
What is Huntington’s Disease?
Huntington’s disease is an illness caused by a faulty gene. Every child conceived naturally to a parent who carries the Huntington’s gene has a 50 per cent chance of inheriting it.
It is detected through a genetic test.
The disease affects the body’s nervous system – the network of nerve tissues in the brain and spinal cord that co-ordinate the body’s activities.
Huntington’s can cause changes in movement, learning, thinking and emotions.
Once symptoms begin, the disease gradually progresses, so living with it means having to adapt to change.
Living with Huntington’s disease can be very challenging and support is vital.
People can live with the faulty gene for years without symptoms, but they will develop at some point, usually between the ages of 30 and 50.