It was my six-monthly consultation with my neurologist a couple of weeks ago and as usual I turned up armed with my meeting agenda and symptom analysis sheet. It was generally a good review, although he did tell me that he thought I had slowed up a bit since he last saw me. His suggestion was that I consider a small increase in my medication when I become symptomatically aware of it, which I am currently not. My main and most disabling Parkinson’s disease (PD) symptom has always been fatigue and sadly we have never found any medication or therapeutic means of easing this. Mentally I feel as sharp (or blunt!) as I ever was and if anything, I feel slightly sharper, as my wife has done wonders with my vocabulary over the past 11 years (she is a dyslexia teacher). Medication is clearly essential to controlling the motor symptoms of PD but I know I have reduced the impact of my illness in many other ways too. Particularly, I push myself mentally every day with my PD research, crosswords and quizzes. I have also been learning how to build websites gradually over the past two years and also write a weekly article on angling for our local newspaper (circulation about 40,000). It was my birthday in early March and my wife bought me a digital SLR camera which has given me a new mental challenge. The idea is that I will be able to take good quality pictures to accompany my angling articles and put together a library of photos of my two year-old grandson. So I am currently a menace, compulsively taking snaps of everyone and everything. But the only way to learn is to use it, and besides, I justify my compulsion by saying it is part of my PD therapy! Then there is my PD forum to administer and participate in, and that is still going well, as well as my PD Twitter and Facebook pages. So all in all, I have plenty to keep me mentally on the ball.
My new year’s resolution was to socialise more and to stop saying “no, I cannot go to this or that because………”. So far, this is going well and has had a marked effect on my mood swings (according to my wife) and works wonderfully well as a distraction therapy. The main issue with the new sociable me is the potential for provoking fatigue attacks, but I am aware of this and I am trying to incorporate sensible strategies to cope, rather than my previous approach of just staying away. For example, a couple of days ago I headed for a local complex of lakes to play with my new trusty SLR. I was determined to stay for at least three hours and set my strategy out accordingly. First and foremost, my medication was timed to accommodate the endeavour, as were my meals, and I planned lots of rest breaks, taking particular note of what my body was telling me. It is a very scenic location with six lakes transformed from holes in the ground created by peat extraction over the past 15 years. The fertile soil has resulted in the establishment of a wonderful array of bankside and water vegetation and has created a haven for wildlife. My eldest son was working at the fishery on the day, helping rebuild some fishing platforms, and as an unexpected bonus a close friend was also there fishing when I arrived. Add to that an unseasonably warm (17°C) sunny and windless day and you have the almost perfect PD antidote. After an hour resting on the bed at home I even managed a short walk in the forest with my dog late afternoon.
PD may not have gone away but neither has my thirst for life.
25th March 2011
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