(42) My PD & I: cueing and observations!

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☺2138 "viewders" between April 2020 & April 2023.

☺Readers' countries = 1. South Africa (majority), 2. Russia, 3. Europe, then Australia, Canada, India, USA, New Zealand and Indonesia.  

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Introduction 

😁 There has been a gradual increase in the readership of this Blog as well as their countries of origin: South Africans represent the majority, Russians second, a growing number of Europeans (presently 9 countries) and others are curious. This is heartwarming and makes the exercise of conceiving, developing and writing these posts a pleasant task! Thank you all, dear readers, for your sustained interest. 

😐 My Parkinson's Disease (PD), however, is making me unhappy. It's becoming an annoying part of life, gnawing away at my body and occasionally at my brain. As you know, I first noticed my right leg quivering early in 2012 so my PD has been around for at least twelve years and it's getting stronger and more dominant. Two years ago I was advised to stop driving = I listened. Last year I was also advised to hire a caregiver = I listened. I was advised by two neurologists (2013 & 2021) to take PD medication (most recently, Sinemet), but some of the side-effects I had been reading about were disturbing, so = I did not listen. 

I did not listen as I wanted to explore. I found one alternative in the natural remedies of the Ayurvedic approach (where their medicines are extracts of herbs and spices). Late in 2021 I engaged with an Ayurveda specialist and then started my PD treatment. Also, I gradually unearthed a range of customised PD exercises online (such as Gentle Chair Yoga, 5 minute Tai Chi), weekly Parkinson's ZA occupational therapy and cycling but one issue persists, namely my poor balance and dizziness. It is likely to be the result of my PD and/or my low blood sugar and/or an ear issue (I've ruled out high blood pressure). 

Today I wish to revisit cueing and spotting in the context of my PD support system. (See cueing in posts 27, 28, 38 and spotting in posts 6, 7, 38, 27). 

Reflecting on cueing strategies

As you know, in March 2020 we moved permanently to Durban into a third-floor apartment with four flights of stairs from the ground level to our front door. Initially, the stair-climbing was doable. When PD started to slow me down in 2021, I started to struggle on these stairs. I had already been using spotting as an external cueing strategy when dressing as it assisted my poor balance (coupled with my weakening arms and legs). In the context of PD, this 'weakening' is also referred to as "passive limb movement". As my balance issue had responded positively to spotting, I wondered if sequences of phrasing -- such as saying to myself "heel-toe heel-toe" -- could assist me to walk down and up the stairs in a measured manner: it did! This was my cueing, version 1.0, and I was walking confidently on stairs.

Later, I substituted the words with numbers. So, during late 2021, my "heel-toe" cue, a concrete concept to encourage my feet to move, evolved into my saying "1-2 1-2" which was more abstract. I was impressed with this adaptation to version 2.0 and believed that my using numbers (i.e. an 'abstract' representation to activate my movement) was superior to using words (i.e. a 'concrete' representation) when on the stairs. But, my reasoning was flawed. 

Moving from concrete to abstract was a mental exercise but it was not helping my motion. During February/March 2023 I noticed that when walking outside I would freeze or slow down quite often and I had no rhythm although I was walking at road-level. Actually, I had had more "rhythm" in 2022 when I navigated four flights of stairs at the old third-floor apartment! Grrr... 

👀OBSERVATION 1: what I neglected to consider was that a shift in my hand dominance (see post 8) might have affected my feet too. I was born with right hand dominance but since PD has weakened my right side, and that dominance has shifted to the left hand for most actions except handwriting! I even type with a dominant left hand! So, my left foot might have become a functioning right foot, as it were, resulting in internal confusion when using numbers ("1-2 1-2") for cueing rather than words indicating an actual foot ("right-left" or "heel-toe"). As soon as I changed my cueing to a clearer interpretation for my mind to interpret and execute, my walking rhythm returned. Also, for short periods I began to swing both arms rather than just the left arm.    

👀OBSERVATION 2: a walk around all three wings takes fifteen minutes but if I walk continuously without a break, then there's a tendency for my legs to go into festination mode where I'd be taking quicker, shorter steps and having difficulty in stopping. It is a scary result of being parkinsed! So, my solution has been to always take short breaks in order to break the rhythm of walking, especially down slight declines or slopes. And that helps. There are useful observations in gait re-education.

My cueing procedure has adapted and in the process I think I have learnt more about the inherent challenges facing the trial-and-error process of treating PD in a drug-free approach, as discussed above.  

My PD - almost a teenager! 

My PD is now 12 years old, technically an adolescent and almost a teenager. This errant child is showing signs of rebellion and bad behaviour and I wish I could ground it!  Why? Well, it thrives on being in me but independent of me, and is a know-it-all! 

👀OBSERVATION 3: the confusion might stem from my being on drug-free treatment. So, when I'm "well", then my brain responds to the Ayurvedic regime as something normal. But, when I'm really "sick" and take drugs (e.g. for a few weeks in March 2023 I had a severe cold with excessive dry cough resulting in my GP prescribing antibiotics - hence the delay in this Post 42), then my PD symptoms tend to worsen. I'm less mobile, I tremor more and tend to be more dizzy. And like a teenager, PD will not listen to me...

I should develop a cue for my PD to take a long walk on its own and never return! Till next time, dear reader, do take care.