Self-Pity is a Useless Emotion

Posted: July 17, 2012By: Chris Boughton

Parkinson’s disease (PD) is often described as a ‘designer illness’.  This is because it causes a very wide variation of symptoms that not all sufferers experience. Whilst there are Parkinson’s symptoms that are pretty much universal, such as slowness of movement and rigidity, there are many more symptoms that are suffered by some and not by others. For example, PD is generally associated with a visible tremor but I do not have one and I was diagnosed with PD over 8 years ago. Apparently around 10-20% of people with PD never get a tremor. Most of us will eventually get dyskinesia, whether we have a tremor or not but that is something completely different. Dyskinesia refers to involuntary muscular movements, particularly in the limbs, and is not linked to a tremor.  I suffer terribly with severe fatigue but I know many PD patients for whom fatigue is much less of an issue and in some cases, not a problem at all. My general motor symptoms are fairly well controlled by my medication but this does nothing to ease my fatigue.
Similarly I experience a range of autonomic symptoms. These are actions that our bodies have no conscious control over. For me these include high and low blood pressure, urinary frequency, urinary urgency, tachycardia, irregular heartbeats and reflux. Once again not every PD patient has all or any of these symptoms and some have other autonomic problems that, so far, do not affect me. All in all, PD is a very complex illness that is extremely difficult to definitively diagnose or give any sort of reliable prognosis for. In some patients the illness progresses slowly and in others, much more rapidly. But the common denominator is that it always progresses relentlessly.

In my personal case, the motor-based symptoms have so far progressed reasonably slowly, whilst my non-motor-based symptoms, such as my autonomic problems, have progressed much more rapidly. It may just be that my medication masks my motor symptoms, but does very little for my non-motor symptoms. The severity of my non motor symptoms can also be spasmodic; that is, I get periods of intense problems of particular symptoms. For example, urinary frequency and urgency dominated my daily life for several months last year, but now appears maybe a couple of days a week. Currently, severe fatigue, reflux and high blood pressure are big problems, alongside my regular cocktail of challenging symptoms. Previously low blood pressure was a problem. None of my non-motor symptoms ever completely go away but they do vary significantly in their intensity and the intense periods can last for several months.

All in all, PD is a very difficult illness to manage for all concerned, and sometimes the sheer range and number of symptoms can be overpowering. I like to think that generally my mood holds up reasonably well, despite what PD throws at me, but the last two weeks have been particularly tough. There is no one symptom in particular that has brought me down, but there are currently too many symptoms at the same time.

I have lunch with one of my sons, at his golf club, most Fridays and he always asks how my PD is and not just out of politeness; I know he is genuinely interested. He knew I wasn’t at my best last week and it was pointless pretending otherwise as he knows me far too well. Anyway, he threw back at me, light-heartedly, one of my favourite sayings: “self-pity is a useless emotion.” I think somehow we got the father-son relationship the wrong way around there, but anyway he is absolutely right. I sent him a text later that afternoon thanking him for his guidance and concluded by saying my glass is half full again, not half empty.

I passionately hate PD!

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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