(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. 

(8) PD & dexterity: go left, right?

Why is it right?

QUESTION: Does my right hand know what my left hand is doing? ANSWERS: (i)Yes. (ii)I suppose so. (iii)Maybe. So, what about dexterity?

The Latin word sinistere refers to "left"or "improper". In English sinister means something "evil". When considering hand dominance, there's also mixed-handedness (where one can play sport with the left hand but write with the right hand) which leads to the notion of dexterity. But, let's return to the matter at hand, namely, how Parkinson's Disease (PD) hijacked my dexterity! A geneticist or neurologist could shed light on prevailing theories on hand dominance.

At varsity, a student in class had an accident just before exams. She fractured her right hand, her writing hand. She sat for exams a few weeks later but wrote with her left hand. She was the very first ambidextrous person I had come across and I was impressed. However, there was a time when she would have been discouraged from doing so because of the "sinistere" stigma.
 
I was born right-handed. At high school, StephenF and RenukaV, both of whom were left handed, always gave me a run for my money when we played table tennis. As a right-handed player I had to be shrewd as a ball returned by a left-hander would spin differently. I had to be observant. Fast-forward to 2016 and I noticed something else regarding dexterity and hand dominance.

PD & shifts in dominance

Sometime during 2016, I observed that my right side was struggling, so that my right hand and leg actions were less fluent. At the time I did not consider PD tests, including a dexterity test, such as the simultaneous tapping of the thumb and forefinger. Currently, I am only able to sustain such a tapping movement, at regular and increasing speed, with the left hand. My right hand is able to start the tapping, but, after a few seconds, the action falters and stops.

A good idea for parkinsed people is for a social worker to assess their level of independence. If you have not done so, then please consider the possibility. I did so a few months ago and wondered why I had not done so earlier. I was probably in Egypt, in denial (pun...).    

I have observed hijacked dexterity when washing pots, plates, dishes and cutlery. For the past few years I have used my right hand to hold items to be soaped and the left to hold the soaped sponge. However, pre-PD, I used to hold items to be washed in my left hand while soaping them with a sponge in the right. With the advent of my PD, it has been deemed necessary by the command centre - my brain and other systems - that my hand dominance should be shifted, probably to make more efficient use of the remaining systems.

Another example of hand dominance shift is my driving a vehicle with automatic transmission. My wife observed a few years ago that my right hand had gradually become passive and often rested on my right thigh while the left hand controlled the steering wheel. One-handed driving is an unsafe technique especially long distance. Putting on a shirt provides another challenge: first I put my left arm into the left sleeve followed by a gargantuan struggle for the right shoulder and arm to get into the right sleeve. By 2019 my wife needed to help me get my arms into sleeves. 

PD doesn't have to cost an arm & a leg 

The onset of PD and increase of right side involuntary tremors has meant that tremors in my right leg and arm have also increased in intensity. This has also meant that my right side coordination and muscle activity has also started to decrease, leading to loss in muscle tone and strength. I believe this has also resulted in a generally painful right shoulder and upper right arm. I was aware of the onset of Bradykinesia but not of the shift in dominance.          

I discovered recently that my sore shoulder could be sorted through Biokinetics or regularly attending Dance for Parkinson's sessions. During my search for drug-free remedies I came across Sensoria's work on smart socks that also attracted the Michael J. Fox Foundation to sponsor their clinical trial. The idea of smart socks telling one to lift up heels or toes led me to a simpler option, namely, wrist weights on either wrists or ankles. They did not cost me an arm and a leg and work 70% of the time.

TIP FOR ME: I realised that when walking, the PD hijacking of my internal communications had resulted in me dragging my right foot. One remedy was spending a few thousand rand on Sensoria socks while another would be to wear a wrist weight. Wearing such a weight on either my right foot or leg on alternating days of the week is a physical reminder for me to lift up my right foot or to swing my right arm when walking. This is done in conjunction with corrective messaging described in a previous post. This works quite well most of the time. These weights are not allowed aboard a plane but may be in one's stowed luggage. Wearing my watch on my left wrist also reminds me to swing my arm but is less effective because it is lighter in weight.       

With apologies to Beyoncé 

TIP FOR ME: to the right! American singer Beyoncé Knowles has a song called Irreplaceable, the introduction to which has the now popular phrase: "To the left, to the left: everything you own in a box to the left". During the past two years one of my dexterity corrective messages when washing dishes has been: "To the right, to the right...". However, I have discovered that reliance on corrective messaging is not always effective, so I wash with left dominance and rinse with right dominance. Also, during rinsing I ensure that my right hip is forward and closer to the sink than the left one. 

When driving I use the corrective message "both hands on the wheel" when I notice any one handed driving. So far that has helped. 

Till next time when I'll share my thoughts on why typing and the cold weather may be a challenge for parkinsed people.   

(7) Balance and PD

The balance  

I've had a few memorable falls since being diagnosed with Parkinson's Disease (PD). Each is 'memorable' because I have a vivid recollection of them and each has helped me figure out what to avoid in the future. One fall was when we were camping (I stumbled backwards and bent a tent pole), another in our bathroom (I stumbled backwards into the shower), a third was embarrassing and at OR Tambo airport (I tripped and fell in international arrivals), one in a Durban mall (I tripped on the stairs) and the sixth was in a packed Port Elizabeth restaurant. Each fall is a reminder of my dis-coordinated self. (Do Victoria or Niagara have PD?) 

Getting up and off a chair in a confined space is one of my challenges, because I am struggling to perform three actions simultaneously. First I have to stand up, next push a chair backwards, then balance in a semi-standing position while slowly walking backwards as I move away from the table. When a table cloth obscures the position of a table leg, then that can catch my foot and cause me to stumble backwards. This is why I fell backwards in a busy Port Elizabeth restaurant. Luckily, as I move slowly, a patron sitting behind me predicted what was about to happen and caught me before I hit the concrete floor. Phew! 

   

When I start a backwards movement - either consciously or not - I believe PD has made it difficult for me to control the momentum, so I keep going backwards. Hence, walking or stumbling backwards, often leads to my falling over or onto something I am unable to see or may have forgotten is there. It feels like an animated version of me falling in slow motion, with the 'other me' observing with amusement. So, I avoid walking backwards.

TIP FOR ME: besides doing a thorough check of my environment, I have discovered that to stand up from a chair, it helps if I first look at a spot (more of this "spotting" action below) in front of me, at eye level, before telling myself to straighten both knees. Then, when I stand, the result is a fairly smooth action where I can stand up, confidently balanced, while sliding the chair backwards. Naturally, it also helps when the floor has a smooth surface. Outdoor seating on a beautiful gravel surface is terrible for a parkinsed person!

However, falling on stairs - either ascending or descending - is likely due to poor concentration and little to do with PD.

Train spotting

A long time ago I was a modern dance instructor. A cool strategy for introducing a dance turn - also known as a pirouette - was to teach students spotting during their training. When attempting a quick turn, one's body tends to be unfocused and wobbly at the end of a 360 degree turn. Initially, it can also lead to dizziness. To correct this, one should focus on a spot at eye level on a wall, or focus on a person in front of you. One's head should whip around slightly before the body does. After the 360 degree turn, the head and the eyes must return to fixate on the same person or spot on the wall. Then, the whole turn is less wobbly and one should not be dizzy. I have found a different reason to train myself to use eye focus.

One of my many frustrations is dressing, specifically, putting on shorts or underwear, as I need to be seated at the edge of the bed in order to very slowly angle my foot inside the pants' leg. I was unable to do this from a standing position - unless I was leaning against a wall - as I tended to fall over. Then I tried part of a spotting procedure. Holding the shorts in front of me while standing, I focus on a spot either on the wall in front of me or on the floor.

TIP FOR ME: when dressing, I have discovered that if I stare at a spot, I am able to raise one leg and can balance fairly safely and confidently, in order to put one foot into the shorts without staggering or falling over. I follow the same procedure to get my feet into sandals or shoes from a standing position. I have noted with interest that even getting up from a chair or the bed - as described above - is easier and I am more confident when I stare at a spot in front of me.

PD & predictability 

Seven years ago, if someone had asked me to predict the future, I would never had thought about a virus causing a pandemic resulting in a lockdown, or about the Aeromobil being exhibited at a car show. The same applies to my being parkinsed and how I would cope without taking PD meds. A large part of the impact, mentioned in an earlier post, is how this intruder has hijacked my body and systematically eroded my confidence. PD stages and symptoms are generally similar but the impact of chronic PD meds on individuals is not predictable. Like the GDNF trials or Levi-dopa in the movie Awakenings in earlier posts, different PD meds appear to have different results on different people. 

Composing these posts on Blogger has been a confidence booster. I also rejoined FaceBook after a two year absence. But underlying the posts is the biggest confidence boost of all: I am gradually learning how to use both my left and my right hands to type. All my life I have been right-handed, until five years ago when I slowly became left-hand dominant. I will return to this in the next post.