Margaret Doyle had never really given her inability to ride a bike much thought. She certainly didn’t think her general lack of balance was anything to worry about.
But with the benefit of hindsight, Margaret and her family can slot together pieces of a jigsaw that all point to the early onset of Parkinson’s disease.
While she wasn’t diagnosed until she was 57, it’s very likely that Margaret had Parkinson’s for a lot longer than she or anyone else ever realised.
And that means that by the time she was told, much of the damage had already been done.
With no cure and a tendency to get progressively
worse, Parkinson’s can feel like a cruel and unstoppable force of nature.
It’s caused by the loss of brain cells that produce dopamine – the chemical needed to send signals back and forth to the brain allowing us to perform smooth and co-ordinated movement.
Sufferers don’t just feel depressed because they’re trying to deal with an illness that won’t go away. One of the major side-effects of the disease itself can be depression and anxiety.
For Margaret, it brought a premature end to her teaching career and the loss of the active life she once enjoyed so much.
Despite it all, she insists she’s never felt self-pity.
‘I’ve grown used to it,’ she says. ‘I’ve not thought “Why me?” I don’t think that I’ve ever thought that.’
Yet the past nine years have been tough and a crucial part of Margaret’s journey has been finding the right programme of medication. Most Parkinson’s sufferers rely on drugs as well as physio and speech therapy.
Margaret’s now on a strict regime and takes tablets every two and three-quarter hours. As the effects gradually start to wear off, both she and husband Mervyn can tell when it’s time for the next dose.
But at the beginning, Margaret admits she tried to conceal the symptom that first alerted her to the fact there might be a problem.
She was working as a supply teacher at the time and remembers catching a glimpse of her reflection in a glass door panel when she noticed that her left arm didn’t swing freely.
‘I was aware that I wasn’t moving my arm backwards and forwards and I was trying to hide it,’ she adds.
‘I thought of several things it could be but not Parkinson’s. I suppose I didn’t know much about it.’
Stiffness can be a symptom of Parkinson’s and Margaret’s GP immediately thought of the disease. An appointment with a consultant the following week confirmed their fears.
At the time, Margaret was also juggling an emergency with her mother, who’d had a fall at her home in Wales.
‘It was just a really horrendous couple of weeks,’ says Margaret, from Drayton.
‘I had to go to Wales and once I got there I didn’t fall to pieces.
‘Fortunately I had relatives who supported me, and my daughter as well.’
She adds: ‘I didn’t know what to think. I went into a shell. I didn’t want to go anywhere, or eat, or do anything.’
As well as a lack of co-ordination, Margaret gets very tired and has problems swallowing.
While she didn’t know much about the disease or the symptoms before her own diagnosis, she now meets plenty of other sufferers through her work with the Portsmouth and district branch of Parkinson’s UK. And one thing that’s surprised her is how different everyone’s individual story is.
The mum-of-two has been the group’s vice-chair for the past two years and gets a lot out of the support and friendship on offer.
To mark Parkinson’s Awareness Week, the group hopes to highlight the disease and the way it affects them and their families.
Commonly thought of as a disease that only affects the elderly, it’s a chance to raise funds for the charity and educate people about the symptoms and side affects.
Everyday tasks like going to the supermarket can be particularly stressful if others don’t appreciate how a sufferer is trying to cope.
‘I have difficulty getting money out of my purse,’ explains Margaret. ‘It takes me longer. I feel bad that people are being held up.’
As a consequence, she doesn’t tend to go shopping any more.
Once an avid cook, she now bakes when she’s got enough energy. And she’s had to make plenty of similar adjustments over the years.
‘I used to be very active in the church and was on the social committee. I used to be very busy, doing lots of cooking. I have to do it in small doses now. If I do too much I collapse in a small heap.
‘I’ve tried to push myself as much as I can, but sometimes I can’t do it.’
While getting her medication sorted has helped her establish day-to-day routines, Margaret knows that the disease won’t get any better.
Yet she’s determined to enjoy life and proudly shows the photos from her daughter’s recent wedding.
As for the future, she says: ‘I try not to think about it. I live for each day.’
The Portsmouth and district branch of Parkinson’s UK celebrated its 10th anniversary last summer.
On the second and fourth Wednesday of each month, its members attend coffee mornings from 10am-noon at Cosham Community Centre.
And on the second Friday of each month they get together for talks or other events like a quiz, bingo or a strawberry tea.
‘I went along and didn’t feel I was ready,’ says Margaret, now 65.
‘I went back three years ago and ended up on the committee. I thought I’d give it another try. The coffee meetings can now attract more than 50 people.’
Parkinson’s nurses run therapy sessions including yoga, tai chi and reflexology.
For Margaret, it’s a welcome chance to get involved.
‘I still feel I can be needed in some sort of way. I don’t have anything arduous to do, I welcome people, chat to them, sit there doing my knitting.’
The awareness week runs until Sunday and there are other groups in the area. The Hayling Island support group meets on the first Tuesday of each month at St Mary’s Church Hall, in Church Road, while the Fareham branch gets together on the first Monday of the month at Crofton Community Centre, Stubbington Lane.
For information about Parkinson’s UK, log on to parkinsons.org.uk or call the helpline on 0808 800 0303.
To find out more about the Portsmouth branch, e-mail email@example.com
Parkinson’s UK launched its biggest in-depth research study this week in a bid to find a cure for the disease.
The charity used the awareness week to announce a £1.6m investment to track the progress of Parkinson’s in sufferers.
It wants 3,000 volunteers – both people diagnosed with Parkinson’s within the past three years and those aged under 50 at the time of diagnosis, and their siblings – to take part in the ground-breaking clinical study. Southampton General Hospital and Romsey Hospital will be involved.
Parkinson’s is caused by the gradual loss of brain cells that produce dopamine. A person with Parkinson’s will only develop symptoms once around 80 per cent of these cells are lost – so they may have had the condition for some time before problems come to attention.
Early signs can include constipation, daytime sleepiness, a decreased sense of smell and disturbed sleep.
Among the first movement problems to be noticed are a fine tremor, or clumsiness in one hand.
With time, the disease may become more difficult to control and less responsive to drugs. Other problems such as depression and dementia may also set in.
There are around 120,000 people with Parkinson’s in the UK and as many as 10,000 are diagnosed every year. The disease is progressive and usually diagnosed in those aged 60 and over, although one in 20 will be under 40 when they are diagnosed.
A lot can be done to relieve the symptoms by using drugs to replace the dopamine in the brain. And occupational therapists and physiotherapists help people manage their condition and provide advice on how to maintain independence in everyday life. Speech and language therapists help with communication or swallowing difficulties.