When he was diagnosed with the incurable, progressive neurological condition Parkinson’s Disease at the age of just 41, Simon Laverick, 47 “allowed himself a fortnight to cry”. But now he believes the diagnosis was just the start of a new chapter in his life. At the start of Parkinson’s Awareness Week, Simon shares his inspirational story in a bid to give hope to other sufferers – and say thank you to the Parkinson’s Advanced Symptom Unit (PASU) that has been a “lifeline”.
A patient of the Parkinson’s Advanced Symptom Unit (PASU) at Redcar Primary Care Hospital has described the service as “a lifeline” while sharing his experience of living with the condition during Parkinson’s Awareness Week.
Simon Laverick was just 41 when he received the devastating diagnosis he had Parkinson’s Disease.
The engineer first noticed his right thumb was moving on its own, and initially put it down to a trapped nerve.
But when the symptom began troubling him enough that he decided to see a GP, he was quickly referred to a neurologist.
“At first, I didn’t think it was a big deal at all and I was surprised when the GP said I needed to see a neurologist,” said Simon, now 47, from Darlington.
“The neurologist asked me to walk across the room while he observed me. After I had stopped walking, he asked, “do you realise your right arm doesn’t swing,” which I had no idea about! Following some further simple tests, he went on to say, “Unfortunately, you have Parkinson’s Disease”. He went on to try to explain but I couldn’t really understand or hear anything after that.”
Simon admits he ‘gave himself a fortnight to cry and get upset’ about the condition and the likely impact on his future career, family life and hobbies he once enjoyed.
But after that he told himself “I can’t continue like this forever” and began to try looking at his situation in a different way.
“It wasn’t easy, but I started to think, “right, what can I do now” instead of focusing on the diagnosis and the negative ways it was going to affect me,” said Simon.
“One of the first things I decided to do was raise money for Parkinson’s Disease and this has kept me focused and helped me to learn to live with my condition.
“I managed to convince 16 friends to row the channel, which was great. I didn’t do it myself because I didn’t want to – I get seasick. Instead I paddled across Scotland in a canoe with five friends between Inverness and Fort William.
“Some of the views were fantastic, and one day, when we were sitting at the side of a Loch, my friend said “I’m glad you’ve got Parkinson’s Disease because otherwise we’d never have done this”.
“I felt like throwing him in the Loch – but I knew what he meant.”
That moment marked a huge turning point for Simon in helping him accept his diagnosis.
His positive nature and determination to focus on what he can do, rather than dwelling on what he can no longer do, has also seen him take up new hobbies and discover new talents, such as photography.
Some of his best work now has pride of place in the award-winning Parkinson’s Advanced Symptom Unit, which has been “a lifeline” to him.
Simon said: “At first I was having real trouble with the medication I was taking. I was having difficulty sleeping – it had become the norm that I just didn’t sleep on a night – and my quality of life was not very good.
“I was invited to come here within a week of calling the specialist nurses.
“Once here, I spent an hour with a team of people – not just the neurologists but a team of different disciplines and we all came up with a solution. It was absolutely unbelievable. I can’t thank them enough.”
Thanks to PASU, Simon’s quality of life got better and better – and also helped his family to cope with his diagnosis, as it gave them the confidence he was getting the extra support that he needed.
“My parents really struggled with my diagnosis, but have always shown me support,” said Simon.
“To coincide with Parkinson’s Awareness Week, my mum is going to abseil down the Transporter Bridge in Middlesbrough. She is 77 years young and my hero.”
At the same time as learning to live with Parkinson’s, Simon himself has raised more than £40,000 for the Cure Parkinson’s Trust, as well as replacing one hobby he can no longer do with a different passion.
Simon said: “Cycling used to be my hobby and I have realised that if you can no longer do one thing you enjoyed, you have to fill that gap with something else.
“As a result photography has come into my life and helps me to see the world in a different way.”
In fact, Simon believes his whole experience – not just his camera lens – have helped him focus on the positives in life.
And although sometimes this is easier said than done, with the support of his loving family and the team at PASU, Simon remains upbeat and positive about the future.
“When I was told I had Parkinson’s, I broke down,” he said.
“I thought my life had ended. But I realise now it was just the beginning of something new.”
Neil Archibald, consultant neurologist at PASU and The James Cook University Hospital in Middlesbrough believes Simon is an “inspiration” to other patients with the incurable and progressive neurological condition, which causes numerous symptoms including tremors, eye and sight problems, sleep problems, speech and communication issues.
It also affects muscles resulting in conditions like Restless Legs Syndrome and can lead to psychosis and other mental health issues.
While Simon was diagnosed with the condition at just 41, Dr Archibald has seen patients in their late twenties, desperately requiring the kind of multidisciplinary support for the myriad symptoms associated with the disease that only PASU currently offers across Teesside and North Yorkshire.
Dr Archibald said: “Despite the fact that it is such a complex condition which can result in numerous different types of symptoms, most patients with Parkinson’s Disease get 15 minutes every six months for us to see them.
“We found that there were a lot of things we couldn’t fix in 15 minutes, and so with the help of the Health Foundation, we started running longer appointments in parallel with the usual six monthly ones.
“Patients were able to self-refer for one of these longer appointments if they were struggling with a particular symptom or problem with their Parkinson’s medication.”
That appointment involved different specialists, neurologists, nurses, physiotherapists and others to solve a patient’s particular problem – and this developed into PASU, which opened in September 2015 and incorporates mental health specialists from Tees Esk and Wear Valleys NHS Foundation Trust.
Neil says: “The feedback from patients and carers about PASU has been excellent.
“The service enables people to feel more engaged in managing their own Parkinson’s Disease, which is really important when living with the condition and remaining as independent as possible.
“Across the board, it’s been very successful and on the back of that, we have been recognised with two awards – the Patient Safety Award in 2016 and a Parkinson’s Excellence Network Award earlier this year.
“We’re delighted to receive this recognition for a service which has made a significant difference to improving patients’ quality of life.”
This year’s Parkinson’s Disease Awareness Week, which runs from April 10-16, focuses on the theme “It’s time to stop Parkinson’s in its tracks.”
The Parkinson’s UK campaign is highlighting research taking place around finding a cure for the disease; and asking the public to support the cause by helping to raise awareness of the condition as well as funds for a cure.
The awareness week also coincides with World Parkinson’s Day on Tuesday 11 April – which marks the 200-year anniversary since Parkinson’s was first recognised as a medical condition.
Parkinson’s UK and the European Parkinson’s Disease Association are to mark the day with various fundraising events and the #UniteForParkinsons campaign.