Parkinson's Diagnosis from Age 8: PD Avenger Matt Eagles Secrets to Living with Parkinson's
Matt Eagles was diagnosed with Parkinson's disease at the age of eight. He has spent much of his life struggling with the disease. He works as a photographer after having electrical implants fitted into his brain to control some of his symptoms (deep brain stimulation). Matt's story has been covered by the national press and he has appeared on ITV and the BBC. He has shared his experience about living with Parkinson’s disease. Matt has published several articles, most notably in Parkinson's Europe and in Primary Care Today. He has written a series of articles for Parkinson's UK in their Quarterly Journal. We sat down with Matt to learn his secrets and his story.
Learn More about Matt-Link to article
1. Tell us about your life being diagnosed with
Parkinson’s disease at such a young age?
I have lived with Parkinson’s disease for as long as I can remember and according to my GP’s digital records summary , which I only managed to access about five years ago, it has been since 1975 . This would trace back to my 7th birthday. There was also evidence of Parkinson’s on another entry in 1977 . I wish they had told me back then what the problem was— as it might have saved me later in life from endless weeks in the hospital undergoing countless tests and needles stuck into my arms.
I used to watch the show Coronation Street on a small wooden chair in the communal lounge in my pajamas. I was usually on my own waiting for one of the nurses to bring me a hot chocolate and some buttered toast; before bedtime. They usually made it by the time the closing credits of the show were streaming by on the TV screen. I would then trudge back to my room which was a hospital partition. It had glass sides and glass front and it was above waist height so the nurses could keep an eye on me. I had my comfort blanket with me. I used to rub my blanket underneath my nose for hours as the smells reminded me of home. I often had a cry before I finally went to sleep. The hospital environment was frightening for me .
It must have been particularly awful for my parents as the hospital, Booth Hall Children’s in Blackley , North Manchester was not close. It was 30 miles away from our house and my mum wasn’t a confident driver. In fact, she tried to avoid motorways at all costs .
2. What did you learn about the importance of
receiving an accurate and timely Parkinson’s
diagnosis?
This might sound like a strange thing to say, but I guess I’m a little bit jealous of persons with Parkinson’s who remember EXACTLY when and where they heard those four dreaded words, “ you have Parkinson’s.“ As far as I can remember I have not had that conversation. No one ever sat me down and said, “I’m sorry Matt but you have PARKINSON’S” and in some bizarre way I feel like there is a vital piece of my life experience missing. I appreciate that a diagnosis is an important stop on the journey.
3. How did you go from a blank birth certificate to
a full life?
I don’t know where or what time I was born. I was a ward of the courts until I was 18 weeks old. On my birth certificate it just says born, Liverpool North. I desperately wanted to belong to someone. I was luckily adopted by two wonderful people who became my parents. They shared in my burden as I have had Parkinson’s for 45+ years .
I was never allowed to dwell on the fact I was ill or was suffering from any condition. In fact I was chastised for crying from dystonic pain or when I couldn’t stand on one leg whilst my mum attempted to clip my toe-nails . This may well sound extremely harsh, but I had always been a mischievous child, so my parents didn’t know whether I was messing about or not. I was never made to feel different and my expectations were thus the same as my peers . I was encouraged to do everything —piano lessons , speech and drama lessons , junior sport , the Church choir , the school choir , school trips, cub scouts. In many respects I did far more than the average child and this has helped me as a core value I use in my Parkinson’s journey— always be up for a challenge . One great success was in 1977 I came first in the Alderley Edge Speech and Drama Festival.
Today I feel the same way as I have all my life spiritually, but I am not as robust as I used to be and get tired more easily.
4. What is the most important message you have
learned from your experiences?
The most important message I have learned over the years is to not become frustrated— enjoy the little wins – remember you didn’t chose this path . Be brave , be resilient and be yourself !
Below is the interview conducted by Indu Subramanian MD that was recorded for her PMD Alliance wHolistic series.
5. What is the secret sauce to living well with
Parkinson’s disease?
My secret sauce is not a secret to anyone that knows me— it’s positivity.
I smile and laugh a lot , often at my own expense but it really helps me cope. There are many times when I fall over and my my wife looks down and says “what are you doing down there?” Rather than get cross, which is a natural response to such a flippant remark, I make up an excuse…. and I say something like “oh I’m just looking for some money I dropped.” For me this is a coping strategy. It helps to diffuse the embarrassment and some of the pain.
In short , "I’m not very good at being sad so I choose to smile and I choose to be happy. Parkinson’s dictates so many things that you cannot control, but I can always smile and enjoy life!
Yes, that is Matt Eagles in the picture!
To read more books and articles by Michael S. Okun MD check Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonBedside and https://www.tourettetreatment.com/
He also serves as the Medical Director for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.