Well this is my last blog for wearingoff.com. After 4 years and 102 blogs on my life with Parkinson’s disease (PD), I am slightly sad that it has come to an end, but then all things do! I can trace my PD symptoms back about 15 years, but I was only diagnosed 10 years ago. For the first 3 years after diagnosis I was, like many at the outset, in denial. Whilst I did research all things PD I shied away from any contact with any other sufferers. With hindsight I think my relentless research in those early post-diagnosis years were more a search to disprove the diagnosis, even if only at a subliminal level. I am not sure what I was hoping for instead. Maybe a small benign tumour that could be removed and all my symptoms would suddenly be gone. Maybe a neurological condition that was acute rather than chronic. Perhaps also something that wasn’t idiopathic. At least then I could, maybe, take some action to slow the illness down. After all, a PD diagnosis is never a definitive diagnosis: only an autopsy can absolutely confirm that what we refer to as PD was to blame for our symptoms. Usually, however, a misdiagnosis results in something no better than PD or even worse. At the end of this 3-year stage I had to give up working. I was only doing simple office work by this stage (Membership Secretary at my local golf club), with no physical content, but my fatigue attacks were by then both frequent and unpredictable.
In the 4 years that followed my leaving work I devoted most of my time to PD advocacy. I set up one of the first PD patient internet forums and linked up with a national charity. I attended PD meetings, organised patient get-togethers, including a trip that 7 of us made to Paris for 4 days, and spent long periods of every day trying to help other PD sufferers (especially those who were newly diagnosed). When I started the PD internet forum there were no Facebook (FB) PD group pages to provide support (there are now over 50). Those early years after diagnosis, especially young onset diagnosis, can be a desperate and lonely time. I spent 4 years at the PD advocacy and patient support coal face but, ultimately, it took its toll on me just as work had done before. Fatigue attacks became more frequent and I clearly needed to ease off from my PD activities.
The last three years I have selfishly devoted to me. I started a BA in English and History in September 2011, and my final exam is imminent. I did carry on with my PD activities, but at a much less intense level than before. I moved our PD internet forum from a private web site to a Facebook private group page and I carried on writing these blogs. I also continued to get involved in low level PD research fund raising but mostly on a local basis. To make a forum or FB group page successful there needs to be at least one active enabler. Since devoting most of my free time to my BA, our FB group page has slowly faded away, partly because the original members are mostly now 10 years plus since diagnosis and weary of all things PD. But, as I said earlier, there are now over 50 FB group pages, and the charity Parkinson’s UK has a very successful forum linked to their web site, which is particularly useful for the newly diagnosed.
So the last 15 years of my life… 5 years suffering symptoms with no diagnosis, 3 years in post-diagnosis denial, 4 years of advocacy and support and finally 3 years of making the brain cells work hard on a BA. What comes next? Well that is currently undecided, but PD is making the options narrower and narrower. Finally a big thank you to all those who have contacted me via Twitter and FB, since these blogs started. Your positive feedback has kept me going with the blog writing. I have enjoyed my 4 years blogging here, and I hope I have helped other PD sufferers and their families along the way too.
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