My name is Matt.

I am a positivity activist.

I have Parkinson’s disease.

Not that unusual: I'm middle aged, I’m a white male – the absolute stereotypical Parky man according to Dr Google.

However, being diagnosed with this chronic neurological degenerative disease as a young boy of 7 most definitely isn’t.

I do consider myself to be very lucky though, I cannot remember NOT having Parkinson’s so everything I have managed to achieve, I have done so despite it. I have nothing to compare my life with, it has been ever-present in my life.

The fact is I didn’t choose Parkinson’s, rather it chose me.

Ideally, I wanted to be the next Jacques Yves Cousteau and sail the seas looking after marine life, but circumstances conspired against me. It’s a double blow really as I’m a lifelong West Ham United fan and that hasn’t been easy either.

Promoting positivity

I am now in a unique position to be able to pass on my experience and knowledge not only of living with Parkinson’s but also the communication difficulties people living with Parkinson’s face daily.

I like to believe I will change the way you can live with a chronic neurological illness by promoting positivity while not forgetting the seriousness of the condition

Parkinson’s disease can and indeed does control every aspect of my daily life from getting up in the morning to go for a wee, staggering to the bathroom and trying not to slip over while having a shower to falling off the bed while getting dressed. It’s not very dignified but amusing to watch, according to my wife, and that’s how day continues until I go to bed at night.

I had deep brain stimulation (DBS) surgery** in September 2006. It’s like having a brain pacemaker fitted. After that I became more and more involved in raising awareness of Parkinson’s, particularly in younger people and this in turn led to numerous media opportunities through Parkinson’s UK and their press office and the Cure Parkinson’s Trust.

Radio interviews

Beginning with BBC North West Tonight, and local radio interviews, my portfolio expanded to national TV appearances, interviews in the Mirror, Express, Sun and The Independent, The Times and radio interviews. Last year I even spoke in Lambeth Palace Gardens, the private residence of the Archbishop of Canterbury.

I now work for the healthcare communications agency Havas Lynx Group as Head of Patient Voice where I ensure patients’ worries and concerns are heard and subsequently catered for in patient communications developed by pharmaceutical companies.

My advocacy work spans the globe having spoken at events hosted in Japan, Australia, USA, to conferences and podcasts in Bulgaria, Belgium, Denmark, Germany, Spain, South Africa, and Switzerland. This obviously includes the United Kingdom too where I have spoken at a Government Science Advisory Committee meeting and written an article for Science in Parliament Magazine for the need to invest in the future of Neuroscience. In 2020 I was awarded the British Neuroscience Association Award for Public Engagement of Neuroscience and also was shortlisted in the National Diversity Awards as Positive Role Model – Disability  

Communication

I am super-proud of what I do and the fact I can help others cope with what life has thrown at them. Communication and having a voice in healthcare is absolutely vital if you are to have access to the most appropriate treatments and care you can. Taking responsibility and being proactive rather than reactive in the way you view your personal health is vital to your own longevity and happiness.

Communicating effectively with your doctor is key. If you struggle to tell the whole story, then your treatment may be compromised. A doctor can only treat what he can diagnose or see and there is rarely a scenario however bad you may perceive it to be that a doctor hasn’t heard before be as open as you can.

My top tips for living with a chronic neurological degenerative disease a – never ever be embarrassed about going out and showing your symptoms in public. It's not a weakness to show vulnerability, it’s a strength. Never be afraid to ask for help. Be bold, be positive be you!

*Dyskinesia - uncontrolled, involuntary movement that may occur with long-term use of levodopa, a treatment for Parkinson’s disease.
** Deep brain stimulation is a type of surgery used to treat Parkinson’s.