Charlotte Chen was a new mum in her early 30s when she first noticed some aches and pains.
It was a lot of minor things – strain in her shoulder and soreness in her arm.
She thought it was maybe a trapped nerve and was referred for an x-ray but then fell pregnant with her second child.
Dealing with a difficult pregnancy, she put the fatigue she was feeling down to that and when it continued after giving birth, she was sure it was just part of being a mum of two young children.
But soon, others started to notice Charlotte, Wheaton Aston, Staffordshire, was struggling and moving abnormally due to being in pain.
Going back to her GP, she was put through a series of tests and was shocked when she was diagnosed with Parkinson’s at 35.
Parkinson’s is a condition which causes parts of the brain to become progressively damaged over many years, leading to tremors, slow movement and stiff and inflexible muscles.
It is the fastest growing neurological condition in the world, and currently there is no cure.
Most people are diagnosed in their 60s, with only 1.2% of those diagnosed under the age of 50.
Charlotte says: ‘Parkinson’s never entered my periphery. I thought it was an older person’s condition and I was only in my 30s. I was completely shocked.’
Two years before the diagnosis, when Charlotte started to notice some problems, she thought it would go away in time.
She explains: ‘It was non-tangible symptoms. I was working in the financial sector and was getting things like pain in my arm using a computer mouse and I had some shoulder pain. I thought it was a repetitive strain injury.
‘I couldn’t really put my finger on it but over time it was starting to impact things like brushing my teeth.
‘I was seeing my GP about something else and I mentioned it and he offered an x-ray because he thought it could be a trapped nerve.
‘But by the time that came around, I was pregnant with my second child.’
It was after her son was born that things really deteriorated and led to her diagnosis.
She says: ‘I was moving slowly and rigidly. Things like dressing or changing the baby were becoming more difficult. A few people commented on it and I realised I needed to get it checked out.’
Going back to her GP she was given more tests, which came back normal, so she was referred to a neurologist to do some movement tests.
Most tests came back normal, but after three months, she was told it was Parkinson’s.
She says: ‘At that stage I didn’t really understand it, but I knew it didn’t sound good.
‘It wasn’t something I could have an operation for or something – it would be with me forever.
‘It took a long time for me to digest the diagnosis.’
It was three months before Charlotte was able to see a specialised Parkinson’s nurse.
Charlotte adds: ‘Having that gap was hard. It was a really long three months.
‘The neurologist just give me a prescription for a drug called Madopar, a referral to see the nurse and a website to look at.
‘There was a lot of anxiety in that time trying to understand myself what it all meant.
‘Seeing my nurse made me realise that the future wasn’t as bleak as I thought. She explained there were options and it wasn’t a death sentence.
‘It is a slow progressing illness and there are lots of things we could do to try to manage it.’
One of the biggest difficulties for Charlotte after her diagnosis was finding support relevant to her.
Charlotte adds: ‘There are support groups out there but mainly for older people. It was quite isolating to start with.
‘I did find a group for younger people but I am the youngest in that group. In the last five years, I’ve been in touch with other mums of my age and now we have a little Facebook group where we can chat.’
Her age also meant people didn’t expect her to be someone with a disability but Charlotte has always been determined to talk about her diagnosis and never wants it to be a ‘dirty secret’.
She says: ‘Sometimes it’s things like when I’m at the checkout and I have to ask them to slow down a bit because I have Parkinson’s.
‘I have had to use an accessible bathroom and people will say “you don’t have a wheelchair” but I need the extra space or handrails sometimes.’
Sadly, the illness meant she had to give up her career shortly after diagnosis as although she tried to return when her maternity leave ended, she found it was difficult to manage being a mum, working and her condition.
In the years since, her symptoms have worsened and she now experiences dystonia – where a person’s muscles contract uncontrollably – in her toes and left leg, and dyskinesia – uncontrolled, involuntary movement – in her right side and leg. It also takes her a while to fall asleep.
She is now hoping to take part in a trial for a new drug but if it does not help, she may try deep brain stimulation surgery, where a device is placed in the brain to send electrical impulses through it.
She says: ‘My symptoms can be triggered when I am doing simple activities like cooking. When I go out for a walk, I have to take regular breaks and sometimes I can’t do it at all.
‘A couple of weeks ago, I needed some fresh air and left my house at 8 in the evening for a five minute stroll around the block. I got halfway through my walk and my legs froze. I managed to walk back home eventually but if someone had seen me, they would have thought I was drunk.
‘In another incident, I popped to the post office and my arms were flapping because of the dyskinesia and I was very conscious of it. I couldn’t wait to get back home.
‘I worry I can’t keep up with my children on my own so only drive them to school and stay local.’
She is incredibly grateful for the support provided by Parkinson’s UK as well as the research they do into the condition.
To show that she is remaining positive, she has set up an Instagram page @YoungHappyParky and online brand selling hand printed clothing, with funds going towards the charity.
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