I was diagnosed in 1988 when I was 47. I had just achieved a reasonable position in the London Stock Exchange and for the first time in my life was financially comfortable. I enjoyed my work, so much so that I looked forward to going to work even when on holiday.
Of course, like others who have Parkinson’s, I did not believe the diagnosis. It seems to be quite normal to live in denial about the change to your health and life for the first year. I carried on as normal, putting Parkinson’s to the back of my mind, took my pills and hoped it would go away. This worked quite well until the stock market crash in 1989 when, along with quite a few others, I was made redundant.
I assumed wrongly that somebody would soon employ me but as time went on I started to worry. I applied for lots of different positions only to be turned down time and time again. Often the initial interviewer would be more than keen and local managers told me that I was just what they wanted, but from Personnel would come a ‘no thank you’. When I enquired as to why they did not want me they would never say. I think some of these rejections were because I had Parkinson’s and also my age. I was approaching 50. Having worked in the Stock Exchange for over 20 years, I was not really qualified or experienced in anything else.
This was my first setback and I became more and more demoralised. I started to feel unwell, my sleep pattern became irregular and I became depressed, and probably very difficult to live with. This lasted for nearly 12 months until I gained employment with an insurance company. It was not work that I enjoyed; the hours were long and unsociable and most evenings I did not get home until 10 pm. I was not the best salesman they had and the money was nothing like I or my family were used to. That job came to an end after seven years in 1997 and I realised that I was unlikely to find paid employment again.
But I did find something that helped fill a part of my life. I was already a member of the Parkinson’s Disease Society UK (PDS) they had helped me find better and cheaper car insurance. But with my working life coming to an end I began to understand what a complicated condition Parkinson’s was and that perhaps I could be of a little help to other families similarly impacted.
This was 1991 and I wanted to raise some money for Parkinson’s. I decided that now I had the time, I would like to run in the London Marathon. So with great determination I began to improve my fitness, began a training programme and ran every day. In 1992 the PDS entered a marathon team (including me) for the first time. Since then the PDS Marathon Team have raised millions of pounds for Parkinson’s and I have completed 18 marathons in all (including two in New York and one in Dublin) and have raised over £54,000.
I have always enjoyed being busy and was a very social animal. Being unable to work because I had Parkinson’s and unable to provide for my family as I would have wished really was a bitter pill to swallow (along with the many that I take on a daily basis!). So being able to contribute in this way has helped me. It has given me a focus and, when in training, a reason for getting up every morning when it would have been easier to take it slowly and ease myself in to the day.
In 1998, Jean (my wife) and I were invited to speak at an EPDA conference in Barcelona about Parkinson’s and how it had affected not only me but also Jean and the children. Although we both approached this new venture with some trepidation, it in fact turned out to be one of the better things that we became involved with.
We have since become a ‘part of’ the EPDA attending their annual conferences around Europe and helping onsite with anything we can. We enjoy being considered as useful EPDA members and have met some extraordinary people from around the world. They have inspired me by their courage and on occasions I have been overwhelmed.
This public engagement became the first of several. Jean and I have been invited to talk about Parkinson’s to companies who want to educate their staff on what Parkinson’s really is, how it affects not just the person but the whole family and how at times it can be difficult to bear, as well as the changes that have to be made within the family to adapt to the ‘invader’ that has come to stay.
I have been fortunate to gain some recognition over the years and have received two Mayor’s awards from Havering, Essex, for my voluntary work and also Honorary Life membership from the PDS. I have been lucky and have carved out a life for myself with the partnership of Jean. It is not the life we would have chosen but I can still get about quite well most of the time. Many other people with Parkinson’s can’t and they deserve a medal every time they manage to leave the house.
See also EPDA Plus Issue 2 & EPDA Plus Issue 7
