Almost Time to Say Goodbye

Posted: May 27, 2014By: Chris Boughton

When I was diagnosed with Parkinson’s disease (PD) in February 2004, I was already suffering fatigue episodes and finding it difficult to walk properly. On reflection, I think my illness went undiagnosed for probably as long as 5 years. Looking back with the knowledge I now have about PD, I had several classic symptoms long before a diagnosis led me to some relief via PD medication. It was, however, about 6 months before the optimum treatment was established for me, contributing to a very tough first year. Medication working effectively is one of the major, if not the major, indicators for a PD diagnosis. There is no absolute diagnosis for PD, and it is established through eliminating other more definitively diagnosable conditions, symptomatic observation and response to PD medication. Part of the reason for my long-overdue referral to a neurologist was that I lacked the classic PD tremor. This is something I have since discovered is missing from around 30% of people diagnosed with PD. There are around 150,000 people currently diagnosed with PD in the UK, and spreading these across the 60,000 GPs means that most see very few cases. If you add to that the variation of symptom combination, the lack of definitive diagnosis and the insidious nature of the illness then you have an illness that is difficult to pin down. The advantage to me of diagnosis was the eventual assistance that the medication gave me. It does not stop the progress of the illness, which is currently relentless and incurable, but it does mask some of the symptoms.

It has been a difficult 10 years for me since diagnosis, but it would have been a great deal worse without my PD medication. PD made it impossible for me to continue with my career, but I am close to completing a 3-year BA in English and History. PD has taken away my leisure pursuits – golf, fishing, swimming and hiking – but I can walk my dog when I am at the peak of my medication cycles. These dog walks are absolutely vital to me. It is the only exercise I get as any strenuous physical activity rapidly fatigues me. I also need the motivation to get outside and engage with the world while hopefully topping up my vitamin D level (something many sufferers are short of). My dog Rolly terrorises me at least twice a day until I walk him. I know there have been many days since he arrived, 7 years ago, when I would not have ventured out if it had not been for him.

Now the really bad news. Three weeks ago Rolly ruptured the cruciate ligament in one of his hind legs, and there have been no walks possible since then. Fortunately he is insured and was operated on last week, but he will not be able to attempt any walks for at least another month. Consequently he is going crazy stuck in the house, hopping around on three legs, and I am resorting to vitamin D tablets and whatever walks I can motivate myself to do without the emotional blackmail that the dog normally inflicts on me. Anyway I do not want to walk alone. Apparently his operation was quite complex, involving a titanium plate, a pin through his knee and a bone graft. He is 14 years old, although he looks a lot younger, so I have to hope that his ageing body can deal with all this.

This is my penultimate blog as wearingoff.com has decided not to pursue the project any longer. It has been four years of my life with my PD laid bare here, and I will miss the cathartic effect it strangely has on me. I hope some of the visitors to this site have found the blogs useful in their own PD journey. I did consider starting a private PD blog but, for whatever reason, the motivation is currently not there. I now need to think of an appropriate theme to sign off with in my last blog.

Chris Boughton

Chris Boughton

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.

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