I have always been a very positive person and my reaction to my diagnosis was one of relief more than anything else. For a year beforehand, I had lost the use of my right arm and hand, which had a significant impact on my life. But getting a diagnosis meant I could start treatment, and this opened up opportunities for me.
During the first few years of living with Parkinson’s, I hoped, rather naively, the medication I was prescribed would completely restore my health and I could get back to living my life. Drug treatments have given me a platform to build on, but I soon realised my own attitude and approach to my condition was just as important as the medication I was taking.
I never saw myself as ‘sick’, or ‘ill’. I saw myself as a healthy person, despite the physical challenges that Parkinson’s presented. Taking responsibility for my state of mind gave me enormous personal strength – it taught me I am not a victim to the condition, I do not need to be passive. To me, that was very empowering.
I started by asking myself, ‘What can I do?’ This was my way of taking responsibility. It also let my healthcare team know I would make my own choices and my own informed decisions, about my health, my condition and ultimately about my life and the way I would live it.
I was forced to acknowledge my own personal tragedy, but Parkinson’s has also taught me to look around and see what I can do and what I enjoy doing.
From that starting point, I have found different strategies and ways of thinking that have helped me live with Parkinson’s these past 20 years or so.
Don't hide away
An early choice I made was not to hide from life – in fact, getting my diagnosis propelled me in the opposite direction! I was forced to acknowledge my own personal tragedy, but Parkinson’s has also taught me to look around and see what I can do and what I enjoy doing. As part of this, I also made no attempt to disguise my Parkinson’s – why should I? I know what I look like and I do not give weight to the opinions or thoughts of strangers. Of course, we all have moments of feeling sorry for ourselves, but I am quick to recognise the difference between self-pity and self-sympathy.
Be it physical or mental, I stay active. Over the years, I’ve discovered it takes discipline and motivation to do this regularly and make it a part of my daily routine, but I’ve stuck with it. I find it energising and gives me the drive to carry on. I’ve had to get to know my own body and know my limits, and I’ve found mindfulness really useful with that. It’s been particularly helpful when I am having an ‘off’ phase and am frozen or if I am in pain.
When circumstances change, I let go of what I cannot do and move forward with what I can do. I don’t want to embody something that is a source of anger, bitterness or hatred.
Taking up challenges and indulging passions
Challenges have given me the opportunity to try something new or get better at something I enjoy. And with Parkinson’s, challenges come in all shapes and sizes – some welcome and some not. Finding my way through a difficult day or not letting myself get depressed when I am feeling unwell is a test, but the sense of achievement of simply getting through the day is one I take more pride in than when I am well.
I love photography, poetry, blogging and my ‘dobies’, my Doberman dogs. My passions remind me life is worth living, so I indulge them.
Parkinson’s was the start of a very personal relationship with myself that has evolved and grown through living with the condition. It’s when I go through the very difficult periods that come with Parkinson’s, the times when I have been confronted with my infirmity, my fragility, my vulnerability, that this relationship is most obvious.
My Parkinson’s is a part of me and through this relationship I have come to accept and nurture this part of me. When circumstances change, I let go of what I cannot do and move forward with what I can do. I don’t want to embody something that is a source of anger, bitterness or hatred, so for me, accepting my reality has been, and continues to be, the most important factor in living with Parkinson’s. I did not choose to get Parkinson’s, but I have chosen how I will live with it. I chose life and life has rewarded me with so much in return.