Interview: Bryn and Vicky Williams - living with Parkinson's Disease

Published on Thursday 15 July 2010 20:18

WHEN Vicky Williams heard her husband, Bryn, sobbing in the bed beside her she decided to take drastic action. Admittedly she was grouchy having been woken in the early hours by the weeping. But she decided she wasn't going to let Bryn wallow in self-pity any longer. "Are you going to cry for the rest of your life?" she snapped at her shocked husband.

• Bryn and Vicky at home in Bearsden with their daughters Ella (8) and Rebecca (6). Picture: Jane Barlow

It was a Sunday night in September 2007 – or rather the early hours of the Monday morning. On the Friday lunchtime Bryn had received a phone call from his consultant, giving him the devastating diagnosis that he had the incurable neurological condition Parkinson's Disease. Bryn, a patent agent for the Glasgow office of legal firm Marks & Clerk, was then just 36 and was struggling to cope with the news.

The couple from Bearsden had spent the weekend crying in each other's arms and worrying about the future, how they were going to cope emotionally and financially while raising their two young daughters, Ella, now eight and six-year-old Rebecca.

But by the Sunday night, Vicky decided enough was enough and Bryn was going to have to pull himself together – for all their sakes.

Biomedical scientist Vicky, now 36, smiles at the memory of that night and says: "It must make me sound a bit heartless. And admittedly I'm the sort of person who needs their sleep so I wasn't pleased about being woken up. But I'm pragmatic. I gave him the weekend to feel sorry for himself and then told him he had to get on with life."

Bryn remembers: "Vicky didn't want me to waste time being down rather than enjoying the time we had. During ten years of marriage we've always stopped each other from feeling down about things and this was no different. It was the kick I needed to start to break out of my depression. At the time her stern words shocked me, but by the morning I knew it made sense. It wasn't easy dragging myself back up but I knew deep down it was what I had to do."

Bryn, who was back at his office desk that Monday and fought to get himself back on track, is full of praise for his supportive employers and still works full-time.

Now, remarkably he sees the last three years battling Parkinson's as the best of his life. He took up running, started writing a blog and launched a website Wobblywilliams.com offering a positive site for people with Parkinson's.

Alongside many friends and supporters he's run marathons, half-marathons and 10k races, proudly sporting a Mr Jelly T-shirt, and raised more than 140,000, primarily for the Cure Parkinson's Trust charity.

"It was the worst day of my life when I was given the diagnosis," says Bryn. But his eyes sparkle when he reveals: "But the past three years have been the best years of my life thanks to the people I've met and the fun I've had. This has given me a focus and it's given me the opportunity to make a difference to others' lives.

"The biggest symptom of Parkinson's is depression. If hope goes out the door depression comes in. That's why we want to give people optimism and hope. You just have to get on with life, no one knows what the future holds."

Vicky adds: "I'd say we're happier now. Before we both had lots of little worries but now we just have the one big one, but we're happier. This puts everything else in perspective."

Parkinson's is a progressive neurological condition affecting movements such as walking, talking, and writing and affects around one in 500 people in the UK. It's named after Dr James Parkinson, the London doctor who first identified it as a condition.

It occurs as a result of a loss of brain nerve cells responsible for producing chemical dopamine which allows messages to be sent to the parts of the brain that co-ordinate movement. With the depletion of dopamine-producing cells, these parts of the brain are unable to function normally.

Symptoms can include a tremor, slowness of movement and muscle stiffness. It mostly affects the over 50s, but one in 20 diagnosed each year will be under 40, and there are around 6,000 people like Bryn, under 40 living with the condition in the UK.

Bryn is the youngest of a family of five girls and two boys from Northern Ireland. He met Scot Vicky when he was a student at Glasgow University and she was at Caledonian, when they worked in a squash club bar. They didn't get together until six years later, but then they were engaged within months.

Bryn's symptoms began with a tremble in his right hand back in October 2006.

Vicky recalls: "I remember him holding a cup of coffee and his hand was shaking so I joked, 'I hope you don't have Parkinson's Disease' and we both laughed. I didn't know much about the condition and didn't of course think for a moment that was what was wrong. He went to the doctor that December who reassured him he was far too young for Parkinson's."

But Bryn was eventually referred to a consultant and in August 2007 discovered he could be facing the prospect of either a brain tumour, multiple sclerosis or Parkinson's Disease.

"If I'd had to pick one I would have opted for the brain tumour," says Bryn. "I naively thought, 'Then it will either be over quick or they'll operate and I'll be okay'. I had no idea what Parkinson's or MS were."

He'd pressed his consultant to phone with results of scans and in September his world came crashing down when he received the call telling him he had Parkinson's.

Once at home with Vicky, Bryn began the task of phoning round relatives and friends with his news.

Vicky explains: "It was like someone had died. Then Bryn phoned his step-dad who's always been hard of hearing. Bryn tried to explain and his step-dad replied, 'You've met Michael Parkinson?'"

The pair still smile about that moment. A sense of humour had already played an important part in their relationship before the news but after Bryn's diagnosis the pair decided laughter would help pull them through.

Vicky says: "At first I wondered what we had done wrong for this to happen. I told myself, 'We're good people, we go to church. Why us? It's just not fair.

"But then I had to go to pick up Rebecca from nursery and Ella from after school club. Life had to go on. It's not the end of the world. He was still the same after the diagnosis, he didn't suddenly change, his condition didn't suddenly worsen.

"We're both the same people we were when we married ten years ago. Whenever I felt down or hormonal in the past, Bryn would tell me to get a grip. We love each other but we've never let each other feel sorry for ourselves."

The couple were open with their children, then just five and three, and the girls have accepted their dad as having a wobbly arm. Rebecca even does a good jelly-like impression.

Bryn introduced the girls to friend Tom Isaacs who has battled Parkinson's for 16 years and now shakes continually – and his daughters weren't fazed.

Vicky explains: "Tom's wife Lyndsey told me, 'Look at Tom – all he is doing is shaking. That's all it is.' It made me realise, so what if Bryn starts moving all the time?

"Tom was on an aeroplane and the stewardess thought he was having a fit when she saw him shaking and asked if there was anything she could do. 'I'm fine as long as you don't want me to fly the plane', he joked."

But it's even the simple tasks that might prove problematic one day for people with Parkinson's. One of Bryn's biggest fears is that he won't be able to walk his daughters down the aisle or give a speech at their weddings in the future.

Vicky says: "I told him they might not even get married, so we'd cross that bridge when we came to it. Nobody knows what their future holds. He said the girls would never know him without Parkinson's. He wanted them to remember what he was like without the disease. But he isn't any different. I don't see any difference from the man I met – although he's a bit slimmer now because of the running!"

Nevertheless, Bryn has started writing and recording his wedding speeches now.

"Parkinson's is not the worst thing that can happen to you," he says. "I used to play darts with my right hand – so I've just started playing with my left. I used to be a planner, but now I take each day as it comes."

So far his condition isn't that obvious. When he walks his right arm hangs down and doesn't swing naturally. Occasionally there's a tremor in his hand, and just a simple gesture of placing his hand on a table results in a slow, deliberate movement. He simply can't do it any quicker. His friends tease him that when he runs he doesn't even wobble enough.

The pair don't look too far ahead, although Vicky has completed her MSc so that she has the potential for future promotion and advancement in her career. She sees her future role as potential breadwinner rather than full-time carer.

"In the future I'll care for him just like any wife or partner cares for their loved one. But I don't see myself becoming a carer," she says.

Bryn has a video clip on his phone of a trial of the drug GDNF in Bristol showing quite dramatic results of increased movement in Parkinson's Disease sufferers and it gives him hope for the future.

Vicky is also positive. "I'm hoping there's going to be a cure around the corner. If we could just stop the condition from getting worse now," she says.

"We don't know why he got it. But we have to enjoy life rather than always looking for something better. I still sometimes think, 'It's just not fair'. Bad things happen to good people and sometimes nothing bad happens to horrible people, that's just life.

"Parkinson's is not going to kill Bryn – it's just going to make life a bit more challenging."

• A charity Wobbly Banquet is being staged on 30 September at the Grand Central Ballroom in Glasgow, coinciding with the World Parkinson Congress which is in Glasgow from 28 September to 1 October.

• For more information go to www.wobblywilliams.com

10 facts about parkinson's

1. Parkinson's disease is a neurological condition which causes increasing levels of disability.

2. The majority of people who develop the disease are over 50, but it can also affect younger people. Around one in 20 Parkinson's patients is under 40.

3. People with Parkinson's do not have enough of a chemical called dopamine because nerve cells in their brain have died.

4. Without dopamine, people can find that their movements become slower, so it takes longer to do things.

5. The main symptoms of Parkinson's are tremor, rigidity and being slow in movement. Other symptoms often include tiredness, pain, depression and constipation.

6. The symptoms someone has and how quickly the condition develops will differ from one person to the next.

7. Some of the symptoms can be controlled using a combination of drugs, therapies and sometimes surgery.

8. There is currently no cure for Parkinson's and it is unclear what causes people to develop it.

9. Parkinson's doesn't directly cause people to die, but symptoms do get worse over time.

10. One person in every 500 has Parkinson's – about 120,000 people in the UK.