Young Parkinson’s sufferer’s shock at diagnosis

AS he sat in the cinema eating popcorn, there it was again – the little twinge in his right index finger he had first noticed when ­trying to pick up a coin from his bedside table.

Martin Taylor and wife Fiona pull funny faces as part of their #funnyfacechallenge, where cash is donated to charity and people are nominated to pull their own funny face. Picture: Greg Macvean

Although innocuous, 32-year-old Martin Taylor was worried enough to have it checked with his GP, who then referred him to a neurologist in Glasgow, near to where he lived at the time, last spring.

Doctors initially carried out an MRI scan as well as blood and nerve tests, fearing it could be motor neurone disease.

So when the first batch came back negative, Martin and his new wife, Fiona, set about ­married life together.

The couple, who were wed in April, moved to Gorebridge in the summer so Fiona could start a job as head of modern studies at George Watson’s and Martin continued his banking role for HSBC.

But their world was turned upside down when Martin went to see another consultant neurologist at Spire Shawfair Park Hospital. Further tests proved devastating – revealing he had the progressively neurological condition Parkinson’s, a disease which more typically presents in the elderly.

“As soon as he saw me, he knew it could be Parkinson’s and recommended I go for a subsequent scan,” said Martin.

“The test came back positive on December 30.

“I’d been off for Christmas and came back to work and found an e-mail from the consultant informing me the ­results of the scan were abnormal. It was a bit of a shock. I went from having just a twitch in my hand to having full-blown symptoms, but I think a lot of it might be in my head because of what I’ve read.”

The illness causes uncontrollable shaking, slower movement and muscle stiffness, as nerve cells in part of the brain die. Although the cause is ­unknown, patients with Parkinson’s have reduced levels of a chemical – GABA – in part of the brain known as the subthalamic nucleus. The disease affects 120,000 people in the UK, mostly in the over-50s. There is no cure, although drugs and deep brain stimulation can reduce symptoms.

“At the moment there’s a tremor in my right hand and right foot, basically a resting tremor,” said Martin. “I notice it when I’m in bed at night. I’ve lost a lot of power and strength in my right arm as well. I can still pick things up and move them, but the movement is quite slow. What annoys me more than anything else is how much I will be affecting Fiona.

“She is being really supportive and great, but it does eat me up inside that she’s going to be hurting.

“She knows I’m suffering a bit and I know how I would feel if it was the other way around.

“Mum and dad are blaming themselves, saying they should have spotted it, but it’s not their fault. It’s just something that’s occurred and it’s how we deal with it.”

But rather than let his recent diagnosis get him down, Martin has come up with a good ­humoured way of raising awareness – and money – for charity Parkinson’s UK.

He has seized on the popularity of a the Ice Bucket Challenge with his own take highlighting one of the most distressing symptoms for sufferers – the loss of facial expression.

Within just a few days, #funnyfacechallenge has already amassed nearly £1000 with people posting videos and photographs of themselves pulling faces on ­social media, before donating £5 to the cause. They then nominate other people on Facebook, and so the craze builds.

“One of the long-term debilitating effects of Parkinson’s can be loss of facial mobility so as a reaction against that I’m ­encouraging people to celebrate they have expression by using it,” Martin said.

“It only started a couple of days ago and is on the cusp of going viral already as my friends have been nominating people all over. We will sit down to think of ways to make it go further. It would be great for it to go as big as possible.

“I just want to give hope to people and raise awareness of the condition, raise money to help treat it and hopefully eventually cure it as well. They’re my motives for doing it.”

Breakthroughs in treatment are leading many to hope a cure will one day be found, with Swedish scientists recently carrying out research using stem cells to heal the damage in the brains of rats caused by Parkinson’s disease. And Martin hopes that by raising funds for research, it will give renewed hope to sufferers, many of whom have endured symptoms for many years.

“My whole viewpoint on it is to stay optimistic and believe in the prospect of there being progression,” he said. “From what I’ve read, there’s genuine hope, particularly around stem cell ­research and that they will be in a position to start medical trials for a cure in five to ten years. If in some small way, I can help towards progression, finding better treatments and a cure, that’s what I want to do.”

Paul Jackson-Clark, director of fundraising at Parkinson’s UK, welcomed his simple idea.

He said: “I’d like to say a big thank you to Martin for helping us to raise awareness of Parkinson’s through his Funny Face Challenge. We are incredibly grateful for his support. I hope Martin’s story will inspire others to take part in a fundraising activity or event for the Parkinson’s UK in the future.”

• You can sponsor Martin at www.justgiving.com/funnyfacechallenge.

ANALYSIS

By Dr Conor Maguire, Chair of the Lothian Parkinson’s Services Advisory Group

Parkinson’s is a condition that is caused by the loss of dopamine producing nerve cells in the brain. These cells produce less of this neuro-transmitter which smooths out the movements in arms and legs and muscles throughout the body, so as these cells progressively deteriorate, a person can develop symptoms like a tremor, a slowness in movement, reduced facial expression, difficulty getting out a chair or starting to walk.

It can also alter how a person sleeps, they are more likely to be prone to getting depression or anxiety, a large percentage have some mild cognitive impairment and some will develop dementia or chronic confusion. Often people have constipation and problems with their waterworks.No two people with the condition are the same because of the way it affects the brain – no-one presents in the same way. Some people present with a mild tremor, some don’t have a tremor.

I often quote Margo MacDonald to people because she had it for many years and seeing somebody like her was a great comfort to a lot of people with Parkinson’s since she was still in the public eye, doing a great job.

When Billy Connolly appeared at the Commonwealth Games on film, I had people with Parkinson’s tell me it was great to see him doing so well.

It is important to remember in the Lothians we estimate there are between 2000 and 2200 with the condition.

Every person who is given a Parkinson’s diagnosis in Lothian is followed up in the long term and we have a great team with three Parkinson’s nurses in Edinburgh.

There is an active Edinburgh branch of Parkinson’s UK that has a lot of activities and does terrific work.

Not only the elderly who are struck down

ONE in every 500 people has Parkinson’s – about 127,000 people in the UK.

Most people who get Parkinson’s are aged 50 or over but younger people can also get it.

While it is commonly believed Parkinson’s only affects older people, one in 20 of the 10,000 diagnosed each year are under 40.

One famous example is Canadian actor Michael J Fox – diagnosed with the disease when he was 30.

The Back to the Future star has since become an advocate for research toward finding a cure and created the Michael J Fox Foundation.

Another is former champion boxer Muhammad Ali who was diagnosed with Parkinson’s in 1984 at the age of 42, and is one of the most high-profile people battling the condition.

He started showing symptoms of the disease soon after retiring from the boxing ring in 1981 although his condition was not diagnosed until three years later.

By this time, Ali had developed tremors, his speech was slurred, and his body movements had become slow.

It was revealed that actor Robin Williams was suffering from the early stages of Parkinson’s disease at the time of his death, as well as anxiety and depression.

There is no cure and it is not known why people get the condition. It doesn’t directly cause people to die, but symptoms do get worse over time. While mainly affecting older people, children as young as seven have been found to have the condition.