Today is a day with some considerable meaning, for me. It was exactly one year ago, today, that I met with my Neurologist and was diagnosed with Parkinson’s Disease. On that day I felt a mixture of relief at finally getting the clarity of a conclusive diagnosis after a twenty year search for answers, versus feeling a sense of terror at what this new reality would mean for me.
What an incredible year it has been. There has been the joy at finally being prescribed medication that has helped me regain some of myself; some of my ability. There, too, has been the ongoing deterioration in so many ways and, although this has been an ongoing deterioration over twenty years of symptoms, the pace at which that deterioration is happening has increased significantly in the last couple of years. I take nothing for granted today; for each thing I am capable of in any given day is a blessing.
Then, there is the way that family, friends, neighbours and colleagues have all shown me support, love, kindness and compassion. That has been truly uplifting and I cannot thank everyone enough for the words of encouragement, the moments of kindness and for the general consideration for what both Kevin and I, face together.
Life has changed so much year on year but the pace of change is fast, now. The people who have supported us through the very bad days that happen, and will continue to happen, cannot truly know how much their support and kindness has meant to us both.
Parkinson’s has brought me some good things, unexpectedly, too. I have found a new strength within me; a motivation and I am doing things that I would otherwise have just put off. For example joining a gym and making going to the gym a part of my life. Who would have thought?!
New people have come into my life, from around the UK and the world; a Parkinson’s community. Such an array of wonderful people all united by this common factor between us. Some have become incredibly good friends and I now cannot imagine my life without them.
The future remains a very scary place to think about. This disease gradually steals so much from you. When I consider how affected I already am, at age 46, I feel quite shocked. That said, to cope, I focus on what I can do and not what I cannot and I just live day by day, week by week, doing the best I can. As I deteriorate in more ways, I use every opportunity to grow and develop in some other way and so I keep my life enriched, full and rewarding.
Fortunately, my illness is largely not visible; thanks to my medication at this time. You would not know that I have Parkinson’s upon meeting me, although you would notice that I use a walking stick. I am still very active. I still run a busy counselling and psychotherapy practice, I study and I manage to lead a busy life.
So, how do I feel one year on from diagnosis? I feel in some way at peace. I have accepted that I have this disease. I feel determined to fight for maintaining as much of my ability as I can, for as long as I can. I feel scared. The future is filled with potential change that I am unwilling to countenance; though I know it awaits.
I am, however, happy.