Age 21, Nicky Doyle, noticed that her hand started to shake.
At the time, she was working as a finance manager and in her spare time, loved running and exercising and thought she was just stressed by her busy lifestyle.
She made trip after trip to see her doctors and was given a whole range of explanations.
She had no idea that the shake in her hand was the first sign of Parkinson’s – a progressive neurological condition, which means the brain slowly deteriorates over time.
It took 13 years for Nicky to finally get her diagnosis, at the age of 34.
Nicky, from Brierley Hill, Dudley, was told she has early onset Parkison’s as the condition usually happens in people over the age of 50 – just 4% of cases each year are younger.
Nicky tells Metro.co.uk: ‘I first noticed a little tremor to start with but I thought it was just stress.
‘I went to the doctors and they diagnosed me with an underactive thyroid, which seemed pretty minor.
‘It was gradually getting worse and I was told it was dystonia, which is a type of uncontrolled muscle movement.’
Dystonia is associated with Parkinson’s but Nicky’s condition was not linked because of her age.
By 26, Nicky was fed up with the tremor that was gradually getting worse and she again went to the doctor for more tests.
But before she could be referred further, she found out she was pregnant with her daughter Olivia.
She explains: ‘Throughout the pregnancy, I didn’t shake once. I felt fabulous. It was great. And then the minute I had her, it all came flooding back and I was even worse.
‘I couldn’t really feed her, I couldn’t bath her. It was really horrendous.
‘It was a really difficult time as a new mum. I cried so many times, I think my eyes dried out.’
With her tremor now having a huge impact on her life, she insisted on further investigations into the cause but she was told again it was just dystonia.
What is Parkinson’s?
Parkinson’s is a progressive neurological condition. This means that it causes problems in the brain and gets worse over time.
People with Parkinson’s don’t have enough of the chemical dopamine because some of the nerve cells that make it have died.
The main symptoms include:
Slowness of movement
And muscle stiffness
‘I was trying all sorts of things – alternative therapies, yoga, hypnosis, supplements, exercise and meditation. You name it, I did it – but nothing was helping.’
Eventually, four years ago, Nicky was referred to a neurologist and she asked for a DAT scan – a test used to diagnosis Parkinson’s by measuring the level of dopamine receptor cells in the brain.
She says: ‘I think, by then, I knew it was Parkinson’s. I just knew my body.
‘I wanted an answer. I was sick to death of feeling awful all the time.
‘As a young woman, I just wanted to be normal.
‘I was so anxious about going out because people would come up to me and think I was drunk or on drugs. It got to the point where I hated leaving the house because of the stares.
‘People don’t realise that young people get Parkinson’s – they see it as something that happens to older people.’
At the end of the test, Nicky looked at the technologist and said: ‘I’ve got Parkinson’s, don’t I?’
She wasn’t able to give Nicky an answer as the diagnosis comes from a doctor but she told Nicky ‘What will be will be.’
Nicky adds: ‘I just knew I had it. Two weeks later, I got the phone call to say I needed to see the doctor. I was like a woman possessed. I made the doctor tell me over the phone.
‘Three days later, I went to see the doctor to talk about it. I went on my own because I didn’t want to deal with anyone else’s emotions.
‘I actually just dealt with it. I just asked what I had to do and what tablets I had to take. After struggling for so long, it was a relief to know what it was.’
But although Nicky was now able to take medication to slow down the progression of the condition, it still had a huge impact on her life.
She explains: ‘At the time I was running a construction firm with my ex-husband but is was so difficult.
‘I’ve given up work now. I’m only 38 and I find that really hard to deal with.’
For Nicky, one of the most difficult times was at Christmas as she feels she wasn’t able to do some of the things that make this time of year special.
She says: ‘Wrapping Christmas presents was one of the things for me because my hands would shake so much, my mum has had to do it for me for years.
‘I can laugh about it because I will say I’d say I could do it but I’ll end up going through a whole roll of wrapping paper and wouldn’t have wrapped one present. It was upsetting.’
Nicky uses medication and regular exercise to help with her symptoms but her condition cannot be cured.
She says: ‘It has helped as if I didn’t take medication, I wouldn’t be able to walk, talk or function properly.
‘I do need help and every day is different but it is working for me at the minute.’
Being a mum to Olivia and William, now six, Nicky says it is hard being a mum and dealing with the condition.
She says: ‘Some days it’s just those little things like fastening buttons or tying your child’s shoelaces.
‘There’s very little support for kids who are watching their mum, dad or grandparent slowly deteriorate.
‘My kids have never known any different but one of the worst things I have heard my little girl say is “Mummy, is Parkinson’s going to kill you?” I was in bits.
‘It is very challenging and it affects every element of my life.’
She adds that in a way, she is glad it took so long to get a diagnosis because she thinks if she had known when she was younger, she wouldn’t have had children.
‘They are such a blessing and I couldn’t imagine life without them but it would have been very different if I had been diagnosed when I first had symptoms,’ she says.
Despite everything, Nicky has remained positive.
She says: ‘I actually count myself really lucky because there are people who are much worse. At the minute I am doing ok and I take it day by day.
‘I do believe that anything is possible with some help and support.
‘It is really hard for my family and we don’t really talk about it because I am their daughter and they are looking after me.
‘My mum comes in and helps me with cleaning and cooking and is like my carer. Without her, I would be lost.’
Nicky is the face of the Parkinson’s UK campaign and she works with the charity to raise awareness of the condition.
She adds: ‘They’re doing amazing work both in getting the message out there about Parkinson’s and helping people understand but also in raising money for research.
‘I hope that this money they raise over Christmas will go towards better treatment.’
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