(2) Parkinson's, mind games & "I"

The internet and mind games

One of the mind games I have experienced is when one does a Google search, for instance, on Parkinson's Disease (PD). It will produce millions of hits. However, in this case, most of the content will be associated exclusively with either a medical or a pharmaceutical context. This does not help the few of us who are not taking PD medication. Seldom are you invited to consider alternatives, unless you specify search terms such as "drug free", "natural remedies" or "PD exercises". If you visit the Fighting Parkinson's Drug Free site it states: "Whether you are fighting Parkinson's without medications or fighting Parkinson's with medications, everybody is welcome here!" 

In all fairness, I must acknowledge that Google will always search and then find information in response to my query. The resultant activity is a tailored response to that query, allowing Google to track and assist me in the future. This filtering system provides an enormous number of similar results rather than alternatives. Unfortunately, this can be simultaneously overwhelming and depressing. 

        

Possible diagnosis and early symptoms 

In my case, I may have been parkinsed as a result of traumatic brain injury. When I was a child, during the 1950's, I fell out of a moving car. I was told later that I had spent a number of days in hospital before being discharged. Fast forward to 2008 and I spent a night in hospital because of an intense headache. In between there was another possible trigger: the death of our son in 1999. This is my attempt to stitch together a series of personal traumas that may have led, directly or indirectly, to the lowering of my dopamine levels and the resultant PD. 

During the 1990's I was a power walker but by 2011 I had difficulty with my co-ordination so I was forced to stop walking outdoors and on uneven surfaces. Around 2012 I noticed that my right leg would tremble whilst urinating when standing. I ignored it but my wife insisted I see our GP who recommended I see a neurologist. After having an MRI to eliminate other possibilities, the neurologist declared I had PD. From then I have been conscious of PD, an intruder, often masquerading as another "me". This other "me" is frequently responsible for mind games!   

Regardless of these events - the 1950's car incident, the death of our son and their possible unintended consequences - from 2017 I started to vegetate indoors. It has been disturbingly fascinating to be aware that often I would feel the need to exercise yet the other "me" would convince me to rest. I wish I knew where to get a restraining order on "him".

Go left, right?   

By 2016 I started to favour my left hand during household chores, when driving and even when typing. I have been consciously trying to reverse this as I am a naturally right-handed person. Yet another mind game to make my left side, that currently represents my more confident side, the dominant one.

I believe that as the PD started on my right side, the diminished use of my right arm, and by default the right shoulder, has led to the intense right shoulder pain that used to wake me at night. In 2018 I started having monthly physiotherapy for that right shoulder pain. While it was always pleasant, its effect was short-lived. In 2019 I found a rehabilitation centre offering the BIG programme. While the exercise programme is rooted in sound principles, it is quite expensive so in 2020 I sought an alternative, namely, Biokinetics. The customised regime appears to be effective for me, especially when exercising under supervision and using the right equipment, rather than at home on my own. 

Another useful and constructive activity is dance. In 2019 my wife came across a Dance for Parkinson's class and I joined it. Emanating from the USA, this is for those who are parkinsed as well as for their caregivers. The class I have been attending in Gauteng, South Africa, has a few dozen participants many of whom are on some form of medication. However, they are all competent participants who make the class a stimulating one. Most importantly, I have observed that I am unlikely to be woken by a sore shoulder during the night following a dance class or Biokinetics! 

In my next post, I will examine two examples of PD treatment. The one is from a 1990 movie, set in the USA and ostensibly about movement disorders. The other, is a 2018 documentary about a recent clinical trial in the UK. From the perspective of one who is parkinsed, I will provide a context and some reflection on both examples.