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Very different ways Parkinson’s is affecting two Northern Ireland families

Singer Neil Diamond and DJ David 'Kid' Jensen have both recently revealed they have Parkinson's. Stephanie Bell talks to a Belfast man with a slow form of the disease and the wife of a Banbridge man who has a much more severe condition

Neil Diamond fans across the world were devastated when he announced he is to retire from touring, after a diagnosis of Parkinson's disease.

The singer, who has just turned 77, was midway through his 50th anniversary tour when he cancelled his March concerts for Australia and New Zealand on medical advice.

And the Canadian-born former Radio Luxembourg, Radio 1 and Top Of The Pops presenter David 'Kid' Jensen also recently went public about how he had been diagnosed with Parkinson's five years ago because he wanted to boost awareness of the disease.

The revelations again put Parkinson's in the spotlight, a disease which in Northern Ireland alone affects nearly 4,000 people.

Parkinson's is a progressive condition in which the brain becomes damaged. It can lead to tremors, difficulty moving, speech changes and eventually memory problems.

Parkinson's UK has support groups across Northern Ireland and country director, Nicola Moore, says that it's important that sufferers and their families access support.

"We are very sorry to hear that Neil Diamond has been diagnosed with Parkinson's," she says.

"He is joining 3,716 people in Northern Ireland affected by the condition.

"Parkinson's is a progressive, fluctuating condition that affects everybody differently, and can change on a day-to-day, or even hour-to-hour basis.

"The symptoms that someone might have and how quickly the condition develops differ from one person to the next. Many people can live for years with the condition and live a full and active life. However, it does affect some people quickly and severely.

"The important thing is that there is plenty of support available."

The wife of a Parkinson's sufferer and a man who has lived with it for eight years today share their very different experiences of the disease.

Anyone needing advice about Parkinson's or support can call Parkinson's UK on freephone helpline 0808 800 0303 or go to www.parkinsons.org.uk

‘To look at me you wouldn’t think I had the disease, but I feel it’

David Spence (65) is a retired civil servant. He lives in Belfast with his wife, Jennifer (66), a retired retail worker. David was diagnosed with Parkinson's in 2009 and has a slow form of the disease. He says:

It started for me with a tremor in my right hand. I went to my GP who didn't feel it was anything serious. I wasn't happy and pursued it with him and eventually he agreed to refer me to a neurologist.

It was about two years after I first went to the GP that I saw a neurologist and he asked me to walk down the corridor and then told me I had Parkinson's. Apparently I was dragging my right leg and wasn't swinging my right arm as I should be and these are classic signs. Based on that he was able to diagnose me.

He didn't give me any information about it or suggest I contact anyone for help, and that was it. I went home and went online to try and find out about it.

All I knew about Parkinson's was that it caused the shakes. I came across the Michael J Fox organisation in America and then I found the Parkinson's UK website and there was a fair bit of information on that.

I hesitated about going to one of their local information meetings and when I decided to go I sat outside debating whether I should go in because I wasn't sure that I wanted to see from others what lay ahead for me.

In the end I did go in and it was the best decision I ever made.

I learnt so much from talking to other people and especially that it affects everyone in different ways.

I am now on the committee of the Belfast group and am also a member of a new Parkinson's choir, Parsonik, which we set up three years ago. The choir has about 35 members and we meet every Saturday and put on some performances.

I've been fortunate in that mine is a slow downhill progression.

If I forget to take my medication the condition will become quite painful and I will start to feel very stiff and rigid. I also get cramps in my legs before I go to sleep and when I wake up in the mornings.

"The tremor is not there all the time, but if I am stressed it will start. You learn to sit on your hand to hide it.

To look at me you wouldn't think I had Parkinson's, but I feel it. It also affects you mentally and I wouldn't be as sharp as I used to be.

I also get quite stressed if I am somewhere I am not familiar with.

I had hoped to do a bit of travelling when I retired but because of the Parkinson's and for other reasons that hasn't happened.

We used to also have a dog but he died a couple of years ago. I really loved having that dog and miss him so much, but I don't think I could manage another dog because of the Parkinson's.

Exercise and singing can help and as well as the choir, I've recently started going to 'movement to music' classes.

Also last month, for the first time in Northern Ireland, a PD Warrior class opened. PD Warrior is a series of exercises specifically for Parkinson's which are supposed to help rewire the brain and slow down the progress.

My advice to anyone living with Parkinson's would be to talk to someone else who has it. You might find it is not as black as you think it is. A friend of mine has a saying that I like - 'I have Parkinson's but it doesn't have me'.

Also I would encourage people to go along to their local support group or talk to their local Parkinson's UK support worker.

"I think it is important to try and keep as positive an outlook as you can.

Parkinson's can make you prone to depression and the worst thing you can do is isolate yourself.

I am a fan of Neil Diamond and have been to a few of his concerts, and when I heard about his diagnosis I posted a message on Facebook welcoming him to the international club that nobody wants to join ..."

'Clive was the most gentle, kindest person ... the change in him is heartbreaking'

Clive James (74), a retired civil servant from Banbridge, has a rapid form of Parkinson's. His wife Katie (63), an office worker, talks about the struggle to get him medical help and the devastation of watching his condition deteriorate. She says:

Clive first developed a tremor in his hand in January 2011. I asked him about it and he said he was just shivering but it set alarm bells ringing for me. He then had two heart attacks and the second one was followed by 12 weeks in hospital when he had to have a quadruple bypass.

We asked in the hospital about the tremor, but no one seemed to be sure what it was. I pushed for an appointment with a neurologist. We got one, but it was cancelled twice. Eventually we booked a private appointment and Clive saw a consultant in September 2011 and was diagnosed.

He was on different medications which seemed to work for a while, but for Clive Parkinson's has progressed very quickly. Last year was just awful and he spent it in and out of hospital. I was worried about the effects of one of the drugs he was on and kept raising my concerns. His behaviour became very erratic and he was hallucinating.

I kept saying I thought it was the drugs.

Last March he was so ill that I was told he only had a short time to live, which shocked me. He is supposed to see a neurologist once every six months and that just isn't happening and it's really not acceptable.

We had a neurology appointment for last July but it was cancelled last minute because the consultant was off sick, and he is still off sick.

Clive's behaviour had just got worse and worse. He had become aggressive, was refusing to take his medication and spent some time in the Bluestone psychiatric unit at Craigavon Area Hospital. The day he was admitted there was the most awful day of my life. The psychiatrist told me he suspected that he had borderline schizophrenia and he prescribed anti-psychotic drugs.

Clive was the most gentle, kindest person you would ever wish to meet and the change in him since his Parkinson's diagnosis is heartbreaking. His speech has become really bad and his tremor is severe.

Parkinson's doesn't just affect the patient but the whole family. It is hideous, I wouldn't wish it on anybody. I've been told there is nothing more they can do for Clive because of his heart problems.

You wouldn't want to see an animal suffering the way he is. He used to be so active and was always out walking the dog and gardening, and he loved going on holiday twice a year. It devastates me to see him the way he is. He now has to have two carers in four times a day.

It is the most terrible disease. People don't understand, they think it is a tremor but can be an awful lot more than that."

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