How My Childhood Parkinson's Disease Diagnosis Transformed Me Into an Advocate

I never planned to become a patient engagement advocate. Quite the opposite, in fact. I always wanted to be the next Jacques Cousteau and sail the oceans in my own boat. Having Parkinson’s disease from the age of 8 rather scuppered my chances of a career at sea, but gave me a completely different set of challenges, many of which have made me stronger, but more importantly have taught me how to engage and communicate effectively with healthcare professionals.

What is Parkinson’s Disease?

Nowadays I’m committed to giving something back to the healthcare industry that has given me so much over the years. I am dedicated to promoting a culture of absolute honesty within healthcare, to encourage patients not to be ashamed of who they are and what they have been through — to tell their full story “warts and all.” And work in partnership with health care professionals towards better outcomes.

My journey began before the diagnosis of idiopathic Parkinson’s, when I spent many weeks traveling to and from Booth Hall Children’s Hospital. During my appointments, I used to sit on a plastic chair swinging my legs back and forth, my eyes gazing round the room but not seeing anything, my mind thinking I would rather be elsewhere and my reverie only broken by the voice of my mother saying, “Matthew, the doctor is talking to you.” I didn’t really understand why I was there in the first place, apart from the fact that for some unknown reason, I couldn’t balance properly and kept falling over.

The regular outpatient appointments quickly turned into inpatient stays which lasted for weeks, as the medical staff struggled to identify the strange symptoms I was exhibiting. Monday to Friday I spent on the ward being tested and assessed, and at the weekends I was allowed to go home. Many of the beds on the wards were in individual rooms separated with glass walls, giving a degree of privacy — but it didn’t cut out the cries of angst from young children in adjacent rooms further along the corridor, frightened and alone. Many a night after watching “Coronation Street” I had a glass of milk and cried myself to sleep.

A breakthrough in communication on my part came after visiting a doctor at the Manchester Royal Infirmary. He offered me 50p if I agreed to try a particular medication – now he was talking my language – I agreed and quickly stuffed the coin into my pocket! I was prescribed a drug proven to help elderly patients cope with the onset of Parkinson’s Disease. It worked to an extent, but as I entered my teens I was referred away from the safety net I had got used to at Booth Hall, to a hospital in London that specialized in movement disorders.

Under the specialist care of Professor David Marsden and subsequently Professor Niall Quinn, I became the patient of choice in teaching seminars which included invited doctors and students from all over the world. I knew the drill; I knew the questions they were going to ask and I knew the tests they would perform. I actually felt quite smug and wore a huge grin during these seminars, happy in the knowledge that I knew more than them about my condition, that I was the expert.

In 2004, aged 34 and with the amount of medications still rising and other options exhausted, the possibility of having deep brain stimulation surgery was discussed. This was a big deal. The surgery was new and groundbreaking, but I trusted my specialist implicitly; such was the relationship we had built up over my then–20 years of attending the hospital.

The surgery was a success and its effects were life-changing. I was able to get up in the middle of the night and go to the bathroom without crawling on the floor and weeing in a pot. It gave me my dignity back! I have since become a brain stimulation advocate, speaking to patients considering the surgery to help them make an informed choice of their own.

Having just entered my 41st year living with Parkinson’s, I now focus on helping building relationships between patients, healthcare professionals and pharmaceutical companies – making sure everyone is speaking the same language and communicating with each other as “experts” in our own right. Sharing my experience has become an important part of my journey, whether that be helping doctors understand my condition, or sharing my experience with fellow patients. I believe when we communicate, we learn, and those lessons will help us all to fundamentally improve the way healthcare is delivered.

Honesty can and does help healthcare professionals make appropriate treatment plans to benefit all concerned. Without it, healthcare will never improve to its full potential.

Thinkstock photo by Monkey Business Images.