Parkinson's doesn't just affect the old

Published on Monday 18 April 2011 11:48

Joel Houck used to dream of having a child. In his imagination they would spend weekends tearing up Calton Hill, racing each other as fast as they could, before catching their breath at the top.

There Joel would sit the youngster on his knee and point out all the landmarks of the Capital skyline, before deciding on which attraction they would clamber back down to explore.

It is a dream that has only half come true for the 50-year-old. For while Joel boasts a beautiful son, soon to turn five, he also has Parkinson's disease, a condition that means any trek up Calton Hill will be a long, slow, and likely painful one, the journey back down equally as laborious.

"I think if my son weren't here though, it would actually be very easy to 'suffer' from Parkinson's," he says.

This month Parkinson's UK has been battling for more awareness of the condition that causes tremors, rigidity and slowness of movement owing to a shortage of the chemical dopamine, lost through dead brain cells.

It is not a terminal illness, but such symptoms do get worse over time.

Scientists revealed last week they may have made advancements in drug treatments to help deal with the symptoms, but there is still no cure or known cause. This means the 120,000 people in the UK with the condition - one person in every 500 - are still playing the waiting game.

And among them is Joel, who first noticed symptoms of Parkinson's in 2004 when he was an otherwise healthy man in his early 40s. He now has little movement in his right side and usually walks with a stick. When his right hand began to slow and work colleagues noticed he was talking increasingly longer to get to the office coffee machine, he knew he had to face up to the fact something was wrong.

Doctors at his Charlotte Square surgery broke the bad news to him and his wife, who were living on Granton Road at the time, adding him to a list of people to have been affected by the disease at a young age. It includes actor Michael J Fox who was just 30 when he was diagnosed, and Diane Hastings, the wife of Scottish rugby legend Gavin Hastings, who was only 39.

"People think of Parkinson's as an older person's disease. But I think one in ten people in the UK with it are actually under 40," Joel says.

Four years ago he helped found the Edinburgh Younger Parkinson's Group which meets once a month at the Bruntsfield Hotel, offering friendship and support for any young person with the condition, as well as their family and friends. He started off with five members at the first meeting yet now has around 50 people on his books, all agreeing to meet on the first Thursday of every month to "enjoy life".

The cynics may roll their eyes, many people with Parkinson's may say such "support" meetings are not for them - Joel certainly would have when he was first given the devastating diagnosis, but now he gets a lot from the group. It makes him feel "normal" he says. "It is very common for people with Parkinson's to be in denial," the father-of-one, who now lives in Fife, explains. "The condition affects everyone differently, with usually one side of the body going first. With me it was the right side, which is unfortunate as I am right handed.

"But, I have taught myself to use my left hand and it is like my right hand is a tool now, used for clasping things instead.

"The biggest difference with me is my walking as I now use a cane, not so much because I need it, but so people know there is something wrong with me and that I am not actually drunk.

"I would never have used this at the start - there is no way I would have wanted anyone to know anything was wrong."

It is hardly a surprise. US-born Joel, a keen fencer and theatrical fight choreographer, had arrived in Edinburgh one summer for the Festival to help with a show a team of American actors were putting on. Through his job he had always been an outgoing, healthy, fit and confident man who loved nothing more that being on stage, or watching from the wings, but always among the action.

One evening at an Argentinian tango class at the Blind Poet, on West Nicholson Street, through the crowds of festival revellers he spotted the "most beautiful woman in Scotland" and the next week, at the same dancing class, he plucked up the courage to talk to her. She quickly became his girlfriend and then his wife - his life was perfect.

Just weeks after his doctor told him he had Parkinson's, his beautiful Scottish wife discovered she was pregnant.

"It was such wonderful news," he says, "but in my heart of hearts I was worried about my child as there is a small risk Parkinson's can be inherited. Also, I worried about being able to do things with the child as they grew up.

"Now I try not to think about what I used to be able to do. It's not so much that I cannot do them now, it's just that it takes me longer. The past is the past, but I do get frustrated as even just walking across a room can be hard work."

On medication for his tremors, and to help with his rigidity, Joel may no longer be able to be the theatrical fight choreographer he once was, or take the classes he once held at Queen Margaret University, but he continues to write for the stage as well as be an active father.

He has two productions, Mary of the High Seas and Southern Freud Chicken, due to be performed in Edinburgh later this year.

"The drugs work for me, but I would never rule out any other forms of treatment in the future," he says."Luckily, when my son was born I was still active and did everything I could. But after a couple of years things changed. He knows I have something called Parkinson's and he often tries to show me how to walk. We sword fight together and he quotes Shakespeare while he is doing in it. He's great.

"Doing things with him can make them easier. When we walk, I can hold his hand, which really helps."

• The Edinburgh Younger Parkinson's Group meets on the first Thursday of every month at 6:30pm at the Bruntsfield Hotel Bisque Bar and Brasserie. Visit www.parkinsons.org.uk for more information.

CASE 2

When he walks, Jamie Love is aware his left leg is dragging behind him.

He sees the stares, the side glances, the furrowed brows as passers-by try to work out what is wrong with him, or if indeed he has just had one too many in the pub.

"I'm sure a lot of people think I'm drunk," the 54-year-old from Roslin explains. "That is the hardest part for me.

"I wish I could have a huge banner above my head saying 'Just excuse me - I have Parkinson's Disease'."

He was diagnosed when he was just 50 after his left hand began to tremble uncontrollably and moving heavy items around his home that Christmas became excruciating.

Jamie, who works for a biotechnology company, was just starting a new job at Edinburgh University when doctors gave him the bad news - and it came like a hammer blow for the ambitious and outgoing man.

"I had plans to be in the biotech industry for the rest of my life. I still will be, but just not as actively," he says.

Four years on and he has come to terms with his condition, continuing to work and live as full a life as he can, while taking medication for his symptoms.

Any tasks that involve dexterity, particularly in the kitchen, are a struggle because of his trembling and weakness, but he battles on, and every month he makes the meeting of the Edinburgh Younger Parkinson's Group.

"I'm the type of person who understands this condition medically, so I saw no reason to treat it socially at first," he says. "But the group has been really helpful. Just to meet other people and their families is good.

"Some days I think Parkinson's is worse than I thought it would be, other days I think it's not that bad. I am lucky to have a wife who gives me a lot of back-up and reminds me to stay happy and not fear the future."

CASE 3

Former firefighter Scott Wilson was just 41 when he was diagnosed with Parkinson's disease - but he still counts himself lucky.

"I can still get out and about," he says. "And I refuse to let it take over my life."

The father-of-two, now 44, a regular at the Edinburgh Younger Parkinson's Group, was told by doctors in November 2008 that he had the condition and that he was young to be diagnosed. "I must admit, it did not hit me like a tonne of bricks, simply because I didn't know much about Parkinson's, except that Margo MacDonald, Michael J Fox and Muhammad Ali all have it," he says.

The condition has affected the Biggar father hard and quickly, causing him to stop work at his local retainer fire station as well as quit his gardening business.

He struggles to keep his left hand steady and although he is prescribed medication, the drugs are not working, so later this year he is hoping to begin a procedure known as Deep Brain Stimulation.

The process involves surgically implanting a neuro-stimulator in the body to deliver electrical stimulation to targeted areas in the brain that control movement, hopefully blocking any of the abnormal nerve signals that cause the symptoms of Parkinson's.

"I can't say I am excited about getting the treatment," he says. "But I have to try it - the medication is just not working for me.

"I just try to live a normal life and be straight with everyone. If I go out for a drink with my friends, I just tell people who don't know that I have Parkinson's.

"It's nothing to be ashamed of after all, I would rather it was out in the open and the public knew more about the condition."