Three years ago, in late March, I was in Paris with six members of my Parkinson’s disease (PD) patients forum for three days of sightseeing, PD support and friendship (I should confess that I was the token male and the other six were all females). All bar one of us had met before and most of us have met on more than one occasion since. PD is an unusual illness, in many ways, and there is definitely a bond between fellow suffers which I think is borne out of this unusualness as much as adversity. Our illness marches on slowly, usually without dramatic changes, but sadly it is insidious and relentless. I was reflecting recently on whether now, three years on, I would still be able to embark on three days of city break sightseeing, and had to conclude that the answer is a definite no. In fact, today my wife and I cancelled a worthy Baltic city cruise holiday and replaced it with a Mediterranean cruise involving plenty of lounging by the pool in the sun. However, I don’t especially feel that my life is any more restricted now than it was three years ago in Paris. However, clearly these examples suggest that it is, so why did I initially decide otherwise?
My conclusion was that it is the insidiousness of the illness. It gives us time to adapt, compensate and accept. Decisions are made gradually over time about increasing or changing medication, and about adjusting mentally to what we can physically no longer do. This all led me on to thinking about the profile of my illness now (sorry I am a relentless analyser, apparently a frequently observed PD personality trait). In some areas my Parkinson’s symptoms are actually under more control than they were 8 years ago when I was first diagnosed, and even 11 years ago when my undiagnosed PD symptoms first appeared. This is partly down to medication which has been quite effective for me on my motor symptoms; for example I walk better, I limp less and my balance is better. However, most of my non-motor symptoms are much worse and I have new symptoms to contend with that were not there 8 years ago. The wearing off of my PD medication was also much less of an issue back then. As well as the medication helping, I have adapted in many ways: I rest frequently; I don’t stay on my feet for longer than 15 minutes at a time; and I manage my pill and meal timings very carefully. I do still try and live my life to the optimum and I try not to invite failure. For quite a while I failed miserably to do this and my life was largely empty apart from my immediate family and my PD network. Pre–PD, I was always a very busy boy, unstoppable in fact, and probably unbearable in pursuit of trying to pack too much into my life. It took me a few years to adapt to PD but then there is no blue print for coping with this critical illness.
I am clearly a lot more incapacitated by PD than I was 8 years or even 3 years ago, and without my PD medication my life would be grim. However, by adapting, compensating, managing, medicating and to some extent accepting what has to be done, I still have a reasonably good life. My wife told me today that I wring every last drop out of my life and I am glad that she thinks that as being a PD carer is no more fun than being a PD patient. I must also remember that PD does not only affect me but also those around me. If nothing else they deserve my best possible response and resistance to our insidious intruder!
I was diagnosed with Parkinson’s disease (PD) in February 2004 at the age of 51 having experienced undiagnosed symptoms for at least 4 years prior to that. My wife and I have five adult children and three grandchildren. We are fortunate in that we live in a lovely rural part of the east of England, with King’s Forest situated nearby for my much needed, therapeutic dog walks. I spent most of my working life involved in electronic, mechanical manufacturing management within the Worldwide Broadcasting industry and I am extremely lucky to have travelled extensively through my work. Since I was diagnosed I have dedicated much of my time to researching all aspects of PD and trying to both support others with this illness and raise the profile of PD. As well as writing a blog on this website, I administer an internet patient forum for people with PD which I set up in September 2008 and it currently has over 150 members. I also administer the forum’s Facebook, Friends Reunited and Twitter pages. My younger son recently ran in a half marathon race to raise funds for the Cure Parkinson’s Trust. I am currently studying for a BA (Hons) in English and History as a mature student.