When I was first diagnosed with Parkinson’s 13 years ago I had a chat with the Leader of the local support group who said that whatever I did I must stay optimistic as a way of accepting my condition. Instead of asking myself “Why me?”, I should ask myself “Why not me?” At the time, I was still stunned by the diagnosis and not very receptive to this advice. I didn’t feel the least bit optimistic and I thought it grossly unfair that I’d been dealt this card. I wrote in my diary that this nasty disease was going to “cramp my style, crush my spirit and isolate me”. At the time there was very little support in our neighbourhood and no access to a Parkinson’s Nurse, so I was very much on my own. It was hard work keeping my job as a teacher and trying to maintain the morale of my students when mine was so undermined.
However, once I was on a stable medication regime my confidence began to return and I started to accept that Parkinson’s was not going to rule my life. I knew that I could not stop the progression, but I would attempt to cope with the infinite challenges it brought. But the most profound improvement was in self-esteem and I stopped seeing myself as a victim. I set up a young onset support group, became less self-centred and I adopted a positive attitude. Instead of casting other people down with negative thoughts about the future, I would demonstrate to the newly-diagnosed how life with Parkinson’s had not cramped my style and we still had opportunities.
Optimism is an attitude that doesn’t develop naturally, but must be cultivated. First, you have to recognise those activities that improve your mood. For me, keeping active makes me feel normal, and every day I make sure I get out and have some exercise. This may be informal exercise such as walking into town or doing some gardening or perhaps more formalised through Pilates and hydrotherapy classes. But, without exception, participation in exercise raises my spirits and makes me feel physically better.
During the last two years I have belonged to a singing group. This is an informal gathering in the sitting room of a friend of mine, where about 15 of us sing a variety of music from classical to pop accompanied by a very talented pianist and baritone. Even though he works us hard for two hours, which involves a lot of strenuous singing and standing, I am still going strong by 9.30 pm when normally I’m burning out and going off. On Monday evenings I could party all night! It seems that a pleasurable activity such as singing releases endorphins, which are mood-enhancing. The more singing I do the better I feel. From what I have read, controlled breathing, articulation and social enjoyment are all reasons why singing is so beneficial and its effect long-lasting.
Optimism also stems from having things to look forward to in the future. In 2014 I will become a grandparent, which is a thrilling prospect. There is nothing like a new baby for making us reflect on the great things in life. Until recently, my one fear was that I would never see my grandchildren or I may not be able to play with them because of my physical limitations, but this no longer applies. I am not yet a shaking wreck, I can still walk even though very badly at times and I’m quite able to look after grandchildren up to a point.
“Why not to me?” is a question that I now appreciate, and I realise that some close friends who are ill have to bear far greater suffering than me and their prognosis is much worse. Picking out the positives, Parkinson’s usually progresses very slowly which gives us time to cope with new symptoms. It could all be so much worse and I have learnt to live with the uncertain future and to enjoy the present.
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