Burnley wife's quest to raise awareness of disease that affects one in 500 in the UK

The devastating news that her husband had a life changing illness, that affects one in 500 people in the UK, was a hammer blow to Helen Robinson.

Tuesday, 19th June 2018, 3:24 pm
Updated Tuesday, 19th June 2018, 3:40 pm
Helen Robinson and her daughter Eleanor are taking part in a sponsored walk to raise awareness of Parkinson's disease.
Helen Robinson and her daughter Eleanor are taking part in a sponsored walk to raise awareness of Parkinson's disease.

The diagnosis of Parkinson's disease came out of the blue for 60-year-old Graham, Helen's husband of 20 years, who just thought the aches and pains he had been experiencing were all part of growing old.

Helen said: "We were in shock at first because although I have heard of Parkinson's Disease I didn't really know much about it.

"We were given the news and I felt like we were just told to go away and get on with it."

Parkinson's disease is a condition in which parts of the brain become progressively damaged over many years.

The main symptoms are: involuntary shaking of particular parts of the body, known as tremor, slow movement, stiff and inflexible muscles.

A person with Parkinson's disease can also experience a wide range of other physical and psychological symptoms, including depression and anxiety, balance problems which may increase the chance of a fall.

Sufferers can also experience loss of sense of smell, problems with sleeping and loss of memory.

Experts believe the disease is caused by a combination of genetic and environmental factors

There are an estimated 127,000 people in the UK with the condition and most people with Parkinson's start to develop symptoms when they're over 50, although around one in 20 people with the condition first experience symptoms when they're under 40.

Men are slightly more likely to get Parkinson's disease than women and printers, Graham's profession, are also more prone to it.

Conducting her own research into the condition Helen found a top consultant in Leeds who Graham is now being treated by.

And while the couple and their two children, 15-year-old Eleanor and Joe, who is 12, are living day to day with Graham's illness, Helen, who has just celebrated her 40th birthday, is on a mission to raise awareness of Parkinson's and also let people know what help is available to them.

She said: "There is very little publicity for Parkinson's or information about what support is available and I wanted to do something to help change that and let people know they are not alone.

"The news turned our world on its head but then to not be pointed in the direction of what could happen, how it could develop and what support and help there was available was a double whammy.

"Luckily I am outspoken so I made inquiries about what the next step was for us but there must be many people who receive this diagnosis who may just go home and hope it all goes away."

Although there's currently no cure for Parkinson's disease, treatments are available to help reduce the main symptoms and maintain quality of life for as long as possible.

Parkinson's disease doesn't directly cause people to die, but the condition can place great strain on the body, and can make some people more vulnerable to serious and life-threatening infections.

However, with advances in treatment, most people with Parkinson's disease now have a normal or near-normal life expectancy.

And the charity Parkinson's UK is striving towards finding a cure with a series of fund raising events.

This Sunday Helen, who works in publicity for the music industry, and Eleanor will take part in the Walk for Parkinson's Calder Valley. The route is along the Rochdale Canal through the Calder Valley into Hebden Bridge. All the walkers will be raising funds and also awareness of the condition as they will be wearing t shirts emblazoned with the slogan Change Attitudes, Find a Cure, Join Us.

The duo have raised £280 towards their £500 target and if anyone would like to donate go to https://www.justgiving.com/fundraising/hmel78.

The local adviser for East Lancashire for Parkinson's is Jan Whitehouse who can be reached on 0344 225 3747 or email her at [email protected]

Jan can give information about Parkinson's cafes and also support groups for sufferers and carers.

There is a also a free confidential helpline available Monday to Friday from 9am to 7pm and Saturday 10am to 2pm. The number is 0808 800 0303.