(59) PD cueing revisited

Connecting dots

In April 2023 (Post 42) I reflected on specific issues, such as spotting, a dance strategy, that was useful when dressing and trying to maintain my balance. By 2025 this has become irrelevant as, sadly, I am presently unable to dress myself. I also made observations on cueing (as well as in Posts 27, 28 and 38) and unpacked the concept (see extract below).

Post 42 (April 2023)"...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." 

In today's post, dear reader, I want to revisit my understanding of cues and introduce prompts.

Prompting for access

The words prompts and cues appear to be synonymous but for us Person/s with Parkinson's (PwP) they are not.

A PwP, like myself, sometimes needs a reminder and to prompt myself to remain aware of hazards when negotiating spaces. An example would be my approaching a narrow space where there is nothing stable to hold onto. What makes my action dangerous is that I have to walk sideways. When I concentrate on balance I prompt myself to be cautious the whole time, for instance, I talk to myself in full sentences: "OK, slowly, watch it now...". Consequently, I feel confident and safer as a result of the prompt. In one such narrow space at home (at my desk/computer) I have fallen twice in two years, so I always prompt myself to be cautious there. Fortunately, I only have to navigate this narrow space when it's blog time. 

Another action requiring a prompt would be when being seated in one of three different chairs in the lounge. There are specific prompts for these chairs, namely, (A) a recliner, (B) a recliner/incliner and (C) a dining chair. Prompts are always required when I walk towards one of these three chairs. I stand still, facing one of them, before prompting myself to slowly turn before carefully moving backwards (the dodgy part) to flop down onto one of them as gently as possible.  

A fourth chair (D) is one that needs to be slid out from under my desk in my bedroom. Then I need to prompt myself to shuffle slowly and carefully sideways into the ±45cm space between the desk and the chair in order to get seated. This is challenging because of the sideways access with nothing to hold onto, like I have in the shower. But, before sitting down in front of my computer, I still have to shuffle forward, my knees bent under the desk, while pulling the chair under my bottom: a potentially hazardous procedure! Oh, and I have a movement disorder, too 😓. 

So, where were cues and prompts first used?  

Well, in the theatre a prompter reminds actors of their lines. Prompters are a critical part of rehearsals as they allow the cast to put down scripts and to focus on acting. When the actual performance is underway, prompters help actors who might panic and forget dialogue.

Specific lines spoken at specific parts of a scene are a reminder of what other actors are supposed to be saying and/or doing at that exact time and these reminders are called cues. Specific lines can also be cues for lighting changes or music or for actors to enter or exit a stage.

PD's cues

Cues used in the context of movement disorders, specifically for PD represent a form of external stimulus generated by the PwP in order to facilitate some form of repeated movement, such as walking. This cue is created to substitute what is absent due to PD and may include rhythmic sounds, music, counting or following patterns/shapes on the floor.

Lim et al. (2005, p.696) cite Cools' definition of cues as "contextual or spatial stimuli which are associated with behaviour to be expected through past experience." For further clarity, Lim et al. (2005, p.696) cite Horstink et al. in order to distinguish between cues and stimuli: "cues give information on how an action should be carried out...more specific than simple stimuli".  

Nieuwboer, (2015) indicates the need for further research into cueing based on the fact that "...gait and balance impairments...in Parkinson's Disease...are not well-controlled by levodopa" while "cueing has an immediate and sustained effect on gait...". One drawback in cueing, is that not everyone who is a PwP has a sense of rhythm to sustain a repeated cue due to their "inflexibility and lack of perceptual rhythmicity..." (Nieuwboer, 2015). This is yet another good reason for us PwP to exercise regularly, right?

My cue to exit...

A constructive way for a PwP to consider cueing is to work with a therapist you trust and then experiment with different modes of cueing. I have found that some therapists have approaches that do not click with me, so do your homework. Check out this easy-to-read link and video of a physiotherapist in Luxembourg which may give you an idea. 

Till next time, dear reader. {Exit, Ari. Fade lights and background music. Cue cast for curtain call.} 

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

BLOG STATISTICS

☺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.  

☺Top referring URL = Facebook.     

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.   

(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.