(9) Another PD bond: shaken and stirred.

"Words, words, words."

The above response of Hamlet to Polonius has been ringing in my ears for years (I have tinnitus too) but let's contextualise this before continuing with my Parkinson's Disease (PD) story. 

I believe I am a wordsmith. For example, after a 2014 road trip from Gauteng to the Northern Cape to see the Namakwaland daisies in their magnificence, our journey included 160km of gravel road between Calvinia and Sutherland: a tiring, two hour trip! When I returned to Gauteng and started writing our daisies trip story, I created the word "gravelling", combining long distance "travelling" with "gravel". The Oxford Dictionary office responded to my email query about this word, stating it had not been used in that context before. Naturally, I was chuffed. In this post I introduce "trevers", combining "tremors" with "shivers" in the PD context. 

While there is a distinction between essential tremors (ET) that often occur with ageing and resting tremors as a result of PD, the product of each is similar: tremors that are debilitating and draw attention. There is also primary dystonia, that generally leads to repetitive turning or twisting movements in body posture: it presents as an abnormality similar to but is not PD. In addition, I sometimes have mild tremors followed by sweating which is the result of low blood sugar.

I used to cope well with cold weather in Gauteng until the arrival of my PD. Since 2018, I have spent winters at the KwaZulu-Natal coast where it is warmer than Gauteng and my tremors do not morph into 'trevers'. Naturally, going to the Drakensberg region at any time of the year can trigger bouts of 'trevers'. Tremors and shivers tend to be sympathetic and the result is that 'trevers' can be more intense and less controllable than resting tremors. 

"I'm all shook up, Mm mmm oh..."

The challenge for me as a parkinsed person is my tremors draw attention to my abnormality. It is almost like left-handedness but more conspicuous. I have seen motorists and cyclists staring at me bumbling across pedestrian crossings in Gauteng, on the rare occasions when I have walked to a shop. Not confident, unfit, stooped and rigid, their stares made me more self-conscious. Even my claim of being a wordsmith could not rescue me when crossing a road. So, all I can do in such a situation is to keep moving and to start a song in my head. One that provides a constructive distraction was recorded by Elvis Presley and called "All shook up". It is a quirky way of coping, and most of the second verse lyrics are appropriate:

"My hands are shaky and my knees are weak 

I can't seem to stand on my own two feet
Who do you thank when you have such luck?
I'm in love
I'm all shook up
Mm mm oh, oh, yeah, yeah!"

Observation, tips and tricks

My resting tremors manifest as a visible activity under my skin. I can actually see it in my limbs when I am still, I can see a resting tremor being generated. It occurs just below the skin and looks like a continuous wave-like action. If unchecked, I believe my muscle memory would increase the intensity of such a repetitive 'shaky' action into a 'new normal' action mentioned in an earlier post. This is concrete evidence of the intruder having hijacked my system.

When it is very cold, my body needs to constantly contract and relax my muscles resulting in shivers that produce heat. The whole body shivers visibly. 'Trevers' represent the combined presence of shivers and tremors. As both activities are similar, in my opinion, they feed off one another, almost forming a symbiotic relationship. I have observed that the shivers across my whole body gradually disappear as I warm up, while the tremors in my limbs remain for a longer period. 

TIPS FOR ME: Identify and eliminate triggers caused by unfamiliar environments. For instance, meeting doctors for the first time, standing in queues, watching horror movies, etc. Such events create tension leading to tremors in my limbs. (1) For relief when seated, I do repeated shoulder hunches as far forward and as far backward as possible. Then, I raise my feet off the ground to knee height, or constantly cross one foot over the other to ease the tension. (2) If I am standing, then I constantly shift all my weight from one leg to the other. This is easier with a walking stick. (3) Merely holding or touching a small stress ball in the palm of my hand without squeezing it, gradually eases my tension and reduces the intensity of my tremors. 

Next time I will share my thoughts on photobiomodulation therapy, also known as low-level laser therapy.