(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.   

(41) Parkinson's thoughts & some resources.

Lending a hand...

Whether you are asleep or resting on your bed, sitting down or standing up, writing or typing, eating or drinking, showering or in the bath or brushing your teeth: if you have early onset or advanced Parkinson's Disease (PD) then, sooner or later, you will need some assistance. This generally comes in the form of medication (drugs or drug-free), people (spouses, partners, caregivers, your GP), reading or even tools (purpose-made or adaptive). In this post, I'd like to share available resources and where some may be purchased.

Regarding resources, do look online for what's available in your own country first, before searching elsewhere. In South Africa, I have not had a problem with shopping (returns or refunds) at Takealot.com. Further afield, during the past 18 years I have never had a problem with shopping (including big ticket items over $1,000) or returns/refunds at Amazon.com. Naturally, shopping overseas from South Africa, I would also need to (i) add the currency exchange rate, (ii) shipping costs and (iii) import duties that are excluded from the listed price. 

So, a PD assistive tool listed in US dollars for the equivalent of R200 will cost nearly R500 to be delivered to my door. By the way, I discovered that same R200 tool advertised "locally" by a company called NineLife, SA, was much cheaper than Amazon's. However, upon investigation, according to customers on the Hello Peter complaint forum, this is a scam! After 18 years, dear reader, Amazon still gives me peace of mind. NB! According to Hello Peter complaints, AVOID buying from NineLife, South Africa!

Shopping online or paying for an online service generally requires a valid credit card and then you are prone to the possibility of being scammed by a range of (even "legitimate", "familiar" but) bogus service providers. So, do your homework by asking friends and family for advice and/or assistance before shopping online, dear reader! Most SA banks are vigilant regarding your financial activities outside the country, and will flag and query these.

        

PD assistance

Let's return to the notion of 'assistance'. Some of what follows has been covered in previous posts so I will give you my opinion again. 

* MEDICATION (drug/ drug-free). This is very personal. The obvious decision is to be diagnosed by one or more neurologists, who, once your life-history, physical tests and diagnoses have been completed, will prescribe a pharmacologically manufactured drug with a standard dosage. You may be also be requested to make lifestyle and dietary changes. A follow-up appointment is likely to be requested of you in order to re-examine your symptoms and dosage. You should also read up (some links are below) on drug-free approaches to fighting Parkinson's. There are possible alternatives (also see Post 21) depending on how advanced one's PD has become.     

* PEOPLE (spouse/ partner/ GP/ others with PD) It's critical to talk to people close to you about the diagnoses, in order to get a few opinions and options as they might offer more objective advice. If possible, then connect with people who have already been diagnosed with PD to find out about support systems. Remember also, too many opinions are equally confusing!

* READING (online/ hard-copy books or articles) It is critical that you have a bird's eye view of Parkinson's, preferably before starting any particular regime. It's generally easier to go online to get the bigger picture regarding causes, diagnoses, symptoms, projected stages, etc. BUT, before doing an online search, if possible consider avoiding Google and use a search engine (that does not track your search and predict your perceived interest), such as DuckDuckGo! If that's not possible, then just google it and let it work for you. An explanation follows.

(Excerpt from Post 2, April 2020) "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."  

* SOME ALTERNATIVE/COMPLEMENTARY APPROACHES 

Do check out the following online (I have tried those marked with an asterisk*): 

• Big therapy;
• Biokinetics*; 
• Aerobics; 
• Walk for Life; 
• Swimming; 
• Dance for Parkinson's*;
• Photobiomodulation*; 
• Chinese remedies/regimes & Qigong exercise; and 
• Ayurvedic remedies/regimes*. 

TOOLS (purpose made/ adaptive) 

There are many pages of assistive "tools" for Parkinson's Disease at Amazon. Here are a few illustrations without prices: it's for you to see what's available in your area then to source what's realistic and affordable either locally or elsewhere. I hope you find some inspiration. Some could be made locally. 

For those of us with tremors or stiff joints, there's weighted cutlery as well as curved cutlery.

For those of us who tremor, there are fat pens (they work). But look around your local stationery store, too.

This auto cane assists us to get into and out of the passenger seat of a car, as long as your car has a U-shaped or square steel piece in the door frame (see pic) and not a flattened "stud" for the auto cane to slot into. 

A rubber wrist and hand strengthener. (Even simple rubber bands stretched across flexed fingers generates good exercise.)

A "keywing" to make it easier to insert and/or turn a key in a lock.

A nail clipper that is easier to use than a standard one.

A spill-proof plate.

A two-handle mug - easy to hold and spill-proof.

Do not ignore the simple therapies, such as this kind of book. Or word games and puzzles to keep the brain relaxed yet active.

Or this book, one of thousands.

I love the idea on this t-shirt! Consider other, similar wording.

A cleverly constructed device to assist with sitting down and standing up, with an accompanying video (once the site opens, look at the bottom left side of picture and click on "3 videos"). 

Concluding thoughts

There's an innovative product available in South Africa called a revolving swivel seat, to assist a PD passenger to get into and out of a car's seat. 

  

If you can afford one (in South Africa the price ranges from R300-R3,000) and depending on your health, consider investing in an electric toothbrush: it will represent one more efficient tool in your PD armory. 

Here's a Parkinson's Foundation site with thoughts and audio clips on exercise.  

I am still enjoying my Threshold sports mini bike that I use while seated on a chair. It is available locally. 

And finally, till next time dear reader, on a sound note, here's a site with fourteen musicians with PD! Stay well...

(40) PD: a Movement Disorder "interview".

NB || the content regarding a drug, Park Ensonz, is pure fiction || NB

IN "THE STUDIO"

Hello and welcome to a new year! This is Ari Naidoo in the Durban studios of Radio ZABC. We're halfway through January and I hope you are prepared for an industrious 2023.

Our studio guest today is Dee Zees, son of the well-known international nerve disorder manufacturer, Park Ensonz. Dee Zees produces customised movement disorders and supplies these to millions of customers, who range from the ordinary, like myself, to famous boxer Muhammad Ali, actors Alan Alda and Michael J. Fox, singer Neil Diamond, Rev. Jesse Jackson, comedian Billy Connolly, as well as millions of others worldwide. 

I will try to keep the interview as open-ended as my producer will allow.

THE "INTERVIEW": PART 1 

Ari: Good day, Mr Zees, and welcome to ZABC.

Dee Zees: Thanks for having me - and please call me Dee.  

Ari: Ok, Dee - welcome to South Africa! What brings you to Durban?

Dee Zees: Well, as you know, my dad - Dr Park Ensonz - and I are always looking for new business opportunities, and there appears to be some potential in your beautiful country. 

Ari: Great! Firstly, Dee, for those listeners who might not know, what does your product do and are there side-effects?

Dee Zees: Okay, in a nutshell, we manufacture a movement disorder product called "Park Ensonz" (yes, named after my dad), and we distribute it at no cost to the user. This product causes parts of the user's brain to deteriorate. Essentially, it slows down users' movements, introduces tremors and causes problems with their balance, etc. We are so confident of our product that we offer a lifetime guarantee! It can also be customised to include add-ons, such as an inability to swallow, a weakened sense of taste, impact on sleep patterns, to name a few. But, for example, when it comes to hallucinations, we do not take responsibility for side-effects resulting from a user's choice of accompanying drugs - that is to be sorted between the users and their neurologists, not us.       

Ari: That's impressive, Dee! But explain to us how you can afford to distribute Park Ensonz at "no cost to the user"?  

Dee Zees: Well, our product targets and kills specific nerve cells in a part of the brain called the substantia nigra, that's responsible for making dopamine, a chemical responsible for regulating the body's movement. Our product, Park Ensonz, attacks these dopamine-producing cells, thereby limiting its dopamine production. Then, (and this is genius) Park Ensonz has an arrangement with pharmaceutical companies to manufacture dopamine substitutes. These are sold to neurologists who, in turn, prescribe them for people who get our product, Park Ensonz, free! It's a win-win situation for us all.

Ari: Okay, but WHEN does someone decide to "get your product" Park Ensonz? That question's been bothering me, Dee, so... 

Dee Zees: Our researchers have found that there are millions of traumatised people, worldwide. Some may have had work-related traumas (for example, court cases), family traumas (especially divorces and deaths), accident related traumas (especially head injuries), or some may have been exposed regularly to chemicals at their places of work, or spent significant amounts of time in the vicinity of crop spraying on farms: all these trauma candidates are eligible for lifetime supplies of Park Ensonz! It's a golden opportunity for us. 

Ari: Hmmm...okay...it sounds logical. You said at the start of this interview that there was potential for business in South Africa. Please elaborate...

Dee Zees: Sure! There is evidence in certain parts of South Africa, of communities who believe that a movement disorder is associated with witchcraft and that such people should stay at home and not be treated. We need to convince such communities that it is not witchcraft or evil magic. We must encourage them to seek assistance from their local clinics, where we would be assisting, mostly, with the supply and sale of PD drugs. Having said that, South Africans appear to be having their fair share of traumas at work, on the roads and at home. So, maybe we can also assist with the supply and distribution of Park Ensonz.

Ari: That's a reasonable argument, Dee. Right now, though, we need to have a break, dear listener, so please click on Rob Georg's Parkinson's Awareness song and we'll be back after Rob's song. Enjoy it!

THE "INTERVIEW": PART 2 

Ari:  Welcome back to the second part of our interview. Our studio guest, today, is Dee Zees, businessman and son of movement disorder manufacturer, Park Ensonz. During the break, Dee, you mentioned research into a non-motor impact of Park Ensonz such as new, physical surroundings. Would that include getting used to a new environment when going away on holiday? I spent a week away from home in December and I'm still recovering from the experience! 

Dee Zees: Yes, exactly that! Our researchers have anecdotal evidence of many parkinsed people (I'm using your term, okay) struggling to adapt to changed or new surroundings. For instance, we are aware of the following issue: "If furniture is moved around in the home or a familiar space, then people with Parkinson's Disease (PD) may experience anxiety when adapting to a new walking path or new seating area. The same applies to experiencing the unfamiliar (for example, new chairs and floor surfaces, using the bathroom, getting in and out of the bed, etc.) in new accommodation when on vacation." Ari, do these observations above, echo what you have observed over the years?

Ari: Yes, they do! Absolutely! Have your researchers indicated why this might be happening to parkinsed people?

Dee Zees: Well, our researchers suggest the following: "One reason is that PD people may become used to deploying specific motor skills and relying on familiar visual clues to determine a set of actions, executed quite confidently when at home. That same confidence is not present when they are on holiday and out of their comfort zones. Even leaving shopping bags or suitcases on a walking path at home may be a potential source of visual frustration for a parkinsed person". I can confirm to listeners that this kind of break in confidence has also been Ari's experience.  

Ari: Thanks for that, Dee. Vacation accommodation can be a source of frustration for us PD people. 

Dee Zees: Sadly, that is the case. The impact is probably similar to having one's PD medication or dosage changed. Such a change can disrupt what one's body has become accustomed to, thereby creating havoc - I guess you've not experienced this because you're not taking any conventional PD drugs, right, Ari?   

Ari: (Hey, who's conducting this studio interview, Dee? :-) Yes, you're quite right. Since my diagnosis in 2013, I've avoided all PD drugs, opting instead for a complementary therapy. In January 2022, exactly a year ago, I started taking alternative medicine as part of an Ayurvedic regime for PD, consisting of three natural remedies, one of which contains an extract of Mucuna Pruriens, a natural source of Levodopa in a tiny dose. The regime was preceded by a three-month detox and serious lifestyle change, mainly weaning myself off stimulants and certain foods. To date (it is now January 2023) my mental capacity remains good but my physical capacity has been gradually deteriorating - for instance, my tremors often get in the way of my carrying out an action. BUT, there are no unpredictable side effects! So, I am extremely grateful. And I am also respectful of all those parkinsed people on a conventional, PD drug regime!

Dee Zees: Good going, Ari - you should be proud of yourself!  

Ari: I am! And, thanks for making the time to come in to the ZABC studios - we appreciate it. Safe travels, Dee. Next week, dear listeners, we hope to interview Albert Zheimer, the forgetologist. 

Well, everyone out there, we're almost at the end of our studio time, so I'm going to end with a second PD reflection, the Mitch Faile song, "Blame it on the Parkinson's". If you have five minutes, I do recommend that you watch the whole story unfold, as the music and the visuals are great! Till next time, this is Ari Naidoo signing off...have a great week. Bye! I'm out...

(39) Parkinson's advocacy: persistence & results

Being diagnosed with a life-altering movement disorder like Parkinson's Disease (PD) is physically exhausting because it represents, in my case, a three-pronged attack: (1) testing my ability to cope with a movement disorder, forcing me (2) to reroute my reality to deal with a new normal and (3) to adapt & attempt to slow down this degenerative disease. <ari.naidoo@gmail.com>

The indefatigable Fox!

I have only had PD for ten years and in the past five years have had four falls (the last in February 2022) that did not result in serious injuries. I cannot imagine being Michael J. Fox and first to have been in denial for seven years and then to fight PD for another 24 years! During the latter period he has had his fair share of PD medication as well as serious injuries sustained during falls, some resulting in major operations. 

On a positive note, his vision and advocacy for PD since 2000 has led the Michael J. Fox Foundation (MJFF) to raise a staggering $1,5 billion to fund Parkinson's research into cures, early diagnosis, alternative therapies and accompanying support. The Foundation has also played a role in the recent Parkinson's lobby in the US Congress, where there is now, for the first time, a National Plan to End Parkinson's Act, sponsored by both a Republican and a Democrat. This plan, if adopted, will attempt to slow down the human suffering of increasing numbers of US citizens and decrease the billions of dollars spent annually to fight PD.   

As far as notable awards are concerned, in 2010 Fox received an honorary Doctorate in medicine from the Swedish Karolinska Institutet. This was for raising funds for PD research via the MJFF and for generating an awareness of PD. Most recently, he received an honorary OSCAR: the Jean Hersholt Humanitarian Award presented to him in November, 2022 for his humanitarian work and fight against PD.    

USA and RSA

Michael J. Fox's persistence has carried him through a constant fight against his own symptoms since the 1990s. His firm belief in a bigger picture, has led to the success of the MJFF to raise funds and broadcast PD advocacy since its establishment in 2000. It started as something personal and has bloomed into an initiative embedded in the idea of a public good, available to all Americans. 

I have to remind myself that the USA is a first-world country with a different set of advantages and accompanying challenges for a person-with-Parkinson's (PwP) compared to us in South Africa. In 2020 there was an estimated 1,073,894 PwPs in the USA. I wonder if such a specific estimate of PwPs has ever been made in South Africa besides general research and data on PD in Africa (this article also describes stigmas related to PD)? Below is an excerpt on PD stigmas followed by two anecdotes on PD. 

According to a 2015 document on the MJFF website, regarding The Stigma of Parkinson's Disease, 

"...aspects of Parkinson's -- visible and invisible -- can be misinterpreted, causing a stigma sometimes associated with neurological disease.  Slowness of movement or speech may be perceived as intellectual disability, imbalance as intoxication, masked facial expression as an unfriendly demeanor, and tremor as nervousness. Internalizing these judgments or trying to hide the disease to avoid discrimination only make symptoms worse."

ANECDOTE 1 A friend - a PwP - shared a disturbing story of a KZN supermarket manager, a fortnight ago, who accused him of being intoxicated because of his imbalance and slurred speech. It was the first time I had heard, first-hand, of such an ugly and painful experience in KZN: a customer was merely querying an issue regarding his purchase. Such insensitivity might occur in other provinces of South Africa, too. 

ANECDOTE 2  In 2020, while preparing to sell our Gauteng flat before moving to KZN, a contractor noticed my tremors. When I described my PD and explained that I was part of a support group he was surprised. He then explained that his younger brother displayed such symptoms for years but it was regarded by his family as some form of "evil magic" and they had kept him at home. This appeared to be young onset PD! I believe there may be many cases like this across the country but they are housebound because of this stigma. There may be a similar scenario in South Africa for those with epilepsy. 

Back to the bigger picture.  According to the Davis Phinney Foundation, there are over a dozen different types of Parkinsonism, an "umbrella term to describe a group of neurological problems", yet only about 10-15% constitute actual Parkinson's Disease as described in my Blog. The six types of Parkinsonism listed (besides PD), are:

• Drug-induced Parkinsonism; 
• Dementia with Lewy Bodies;
• Multiple System Atrophy;
• Progressive Supranuclear Palsy;
• Vascular Parkinsonism; and
• Corticobasal Degeneration.  

I am of the opinion that we are not vocal enough in South Africa regarding the complexity, treatment and identifying this neurodegenerative disease and that PwPs should make PD more public! There is a Presidential Working Group on Disability - established in 2019 - but their focus is not on advocacy of persons with disabilities but on their economic empowerment, as repeated in President Ramaphosa's 2021 address. So, we PwPs, require concerted advocacy to raise public awareness of Parkinsonism to ensure our rights. And using the MJFF approach, persistence will be the key to any success.

KZN Parkinson's support

(Now, I am going to repeat myself.) Between 2018-2019 I was part of a weekly Dance for Parkinson's  (DfP) group in Pretoria :-). I also belonged (and still do) to an online support group called Movement Disorder Support SA. When we moved to KZN, in 2020, I found a branch of the DfP but located a two-hour return drive away from Durban :-(. There were websites for two PD support groups in Durban but their telephone numbers still "do not exist". I also attempted to start a support group through the laser therapy clinic (see Posts 10, 11, 13, 14) but that did not materialise.

Then, in September 2022, a friend sent me a newspaper article of the launch of Parkinsons ZA (PZA) in Durban. I was excited! Their weekly occupational therapy workshops were going to be held in a venue five minutes drive away from me. To date they have run 15 two-hour workshops covering issues related to mobility, sleeping, speech, diet and writing for a PwP. Each workshop starts with a good warm-up and ends with cool-down exercises. It's been a godsend for the approximately two dozen regular participants.  

The task ahead for PZA in 2023 is to focus on fundraising and advocacy. They also want to run workshops in other parts of Durban and the surrounding areas. Maybe they'll follow the MJFF route and have successful short, medium and long-term strategies and reach greater numbers of us parkinsed people. 

   

Conclusion

I started the post referring to my three-pronged strategy. I will return to it in my next post. I wish you well over the next few weeks, dear reader. Be safe!  

(38) MY PD: positive reflection & activities.

😀 Smile with me: Tremor Knower 😀

Because of my tremors, the following rumours are not true:

(:-) The local SPCA is hiring me to pat their dogs; and 

(:-) a local fireworks company is hiring me to light matches quickly.

Labeling my PD

Parkinson's Disease (PD) rattles me on a daily basis. My monthly Parkinson's Disease (PD) out-poring in this blog releases part of my agitation, the completed post being the equivalent of a mild sedative. (Sigh!)  

When trying to define a PD moment or to describe my response to it or to share a strategy, it is authentic. What I'm grappling with is a broad label which will aptly describe this. Are there such labels? Does it matter if there aren't and I or you create them? Let's go down this rabbit hole, dear reader, to see if...

YIN & YANG My PD is something cold and dark inside me. In previous posts I have described my PD as experiencing a terrorist strike on my health and having my body hijacked. It's a scary space in which to be. While such thinking about my PD becomes a source of negative energy representing a cold, dark part of my life, writing this blog from a first person perspective (that is, subjectively) also allows me to view my PD from a distance (almost "objectively") and to accept my circumstances! 

In short, my Blog transforms the stark, dark, cold reality of my PD into stories that are a source of positive energy, that make me feel bright and warm when published. Maybe I'm reading too much into my writing but what I'm expressing is a set of feelings that exist as a pair of opposites, like the notion of Yin & Yang.

In the principle of Yin & Yang, where positive and negative elements always coexist (like the PD in me), the ideal is to find a balance between the dark (Yin) and the light (Yang) as an increase in the one means a decrease in the other. I have found the semblance of balance via a monthly blog, that sort of falls into the category of Yin & Yang! There certainly is a co-existence of the 'positive' and the 'negative'! So maybe this is apt...            

 

PINKY & BRAIN In Post 16 I assumed my PD struggle was represented by laboratory mice, where my PD is "the character Brain, while my resistance and fightback is represented as Pinky. The more PD (that is, a Brain) tries to convince me that I am on a downward spiral, the more I resist and present a conscious fightback so that my muscle memory (driven by a Pinky) responds appropriately." 

This appears to be another label and it resembles Yin & Yang. In addition, the Pinky (alter ego = "other I") & Brain (ego) analogy connects the "subjective", first-person perspective of me, as information source and a parkinsed person, to the "objective" nature of the the completed product, this Blog.    

I will allow you, dear reader, to decide whether Yin & Yang or Pinky & Brain is the more appropriate label to describe my PD. (While both are apt, I'm leaning toward one. If you have an opinion, then PLEASE EMAIL IT TO ME, together with the request below.) The reason I am engaging you in this process is my growing sense of frustration with my hijacked state. Walking is increasingly becoming an issue so I have to use greater amounts of will power each week to walk outside and to exercise inside. And, remember, I have been more sedentary this year! 

REQUEST: paint-by-numbers project

I'm still prone to procrastinate, something that you also may be experiencing, so let me make this request. A month ago I bought my first paint-by-numbers kit - containing numbered pots of paint with corresponding numbers on a printed picture on canvas - and it is still on my bookshelf. I'd like to complete this project before my next post. Sharing this info may energise me into doing it, so please read on! 

👀  REQUEST: PLEASE EMAIL ME this following question BY 30 NOVEMBER 2022: Ari, is your paint-by-numbers project complete? Each reader who sends me this reminder (just put the question in the Subject line of your email) will receive a copy of the completed picture by email. OK?  <ari.naidoo@gmail.com> 👀   

MY PD: November 2022

I'm frustrated and still trying to be realistic about being parkinsed. I understand that I need to deal with this new reality. 

I'm proud of my academic qualifications, namely, five degrees and a diploma. However, after I retired, these qualifications and the title of "Dr." are not part of my new context of a parkinsed husband, father and grandfather. Facilitating learning in classes of academic staff, both online and contact, is part of an expired reality that is in the past. My new reality is learning how to survive with Parkinson's and without drugs, so let me PRESS THE RESET BUTTON now and get "undepressed". 

Let me share some observations that, upon reflection, make me feel a whole lot better. Some activities have been mentioned in previous posts but let me re-remind myself and you, dear reader. I will start with the video of an exercise song (please turn up the volume) sung by Julien the lemur in the movie Madagascar. His picture is below.

Here's my list of observations involving a range of my activities in which I have 'to move it'.

PHYSICAL ACTIVITY: Walking

As described in post 37, I try to walk outside for at least 10/20 minutes three times a week. Outdoor walking with my caregiver is followed by 20 minutes of stretching indoors. When the weather is poor then I cycle indoors on my mini bike (reviewed in post 19). 

PHYSICAL ACTIVITY: Facial
It's a good idea to do face stretching exercises daily to attempt to counter the standard, expressionless "angry face" worn by those of us with PD. It helps if you are able to do these facing a mirror, preferably while seated. When you start to "feel" you are on the right track you can also do them lying down, with someone watching you if you are prone to choking. Naturally, the number of repetitions will depend on what is manageable. 

I like to start with (1) an exaggerated smile with closed mouth, cheeks pulling upwards, followed by (2) an exaggerated sad face pulling my lips and cheeks downward (not pouting), after which I will (3) puff up my cheeks by filling them with air (lips still closed) and repeating (1) and (2) with air-filled cheeks. Then (4) frown as hard as possible creasing the forehead followed by (5) un-frowning and finally (6) moving both ears backwards and (7) forwards, which can be more difficult than it app'ears'. REPEAT>>   

Then I do few tongue exercises by (8) sticking out my tongue straight ahead without curling the tip, followed by (9) stretching the tongue to the right, to the left, upwards and downwards. REPEAT>>

PHYSICAL ACTIVITY: Stretching

These are standard but the transition time of each set and the time between (1) and (2) as well as (3) and (4) will depend on how much strain is placed on various muscles and how well you cope. 

(1) Both arms are stretched in front of me in line with my shoulders ensuring I look at my hands with outstretched fingers then (2) both arms stretched above my head while tilting my head upwards to look at my hands with outstretched fingers. Then (3) both my arms (hands with outstretched fingers) on either side of my body (right/left arm to my right/left side) till they are parallel to my corresponding shoulders. Then I move my wrists so my hands move first in (4) a clockwise then (5) an anticlockwise direction.   

PHYSICAL ACTIVITY: Hands

The simplest is for me is to (1) stretch both arms out in front of me then (2) at the same time quickly close the fingers of each hand tightly after which I then (3) open both fists quickly by flicking out all fingers on each hand and flexing them simultaneously. This action must be done using as much speed and energy as possible. REPEAT>>

Another is to repeat the above (1) but (2) I slowly move the thumbs inwards so they are touching each palm, then slowly move the second fingers so they cover the uppermost part of the thumb followed by slowly doing the same with the third fingers, ring fingers and pinkies, slowly making a fist. Then slowly reverse the action by moving the pinkies outward and straightened, followed by the ring fingers, third fingers, second fingers and thumbs until both fists are open hands. This action must be done using slow, deliberate movements. REPEAT>>

PHYSICAL ACTIVITY: Feet

In a seated position I straighten the knees and (1) raise both feet out in front of me and off the floor. Then I (2) curl the toes then point and stretch them. I repeat (1) and (2) and then rotate my ankles so my feet move first in (3) a clockwise then (4) an anticlockwise direction.   

MENTAL ACTIVITY:

All my current mental online exercises have been described in post 37 and I'm still enjoying them.  

CUEING: standing & walking from a seated or stationary position

Here I remember the name of a shampoo called "Head & Shoulders" as part of my cueing phrase ("cueing" was covered in post 27). Standing from a seated position is by far the most challenging action for me to complete. Floor covering (carpets, tiles, gravel) is critical as is the kind of chair and its weight. The greater the resistance between the floor and me seated in a chair, the greater my effort and level of anxiety to complete the action of standing up. 

In order to stand from a seated position, I ensure (1) my thighs are as far forward as possible on the seat with my bum at the edge and (2) my feet are as far back under the chair as possible. Then (3) I use the sides or armrest of the chair as a support surface to move myself forward, continuously saying to myself head-over-shoulders then head-over-heels and I initiate the intention to stand. To complete this intended action, before I stand (4) I fixate on a mark/spot/line/pattern on the floor or wall in front of me. This is called "spotting" (covered in post 7 - to assist me with balance when dressing). Often, I stand and walk. 

If I'm stuck then I use the popular emergency exit recommended by occupational therapists, which is to rock forward and backward until I have enough momentum to lift myself up and then initiate "spotting".    

"Cueing" has also become valuable for unfreezing me. When in the shower there are times when my right hand (my right side is the slower side) is unable to reach under my left armpit. So I have to say to my right hand "unfreeze" and without fail, it does! Another instance is when I stand up and turn to walk. My movement is jerky and unsure. I have noticed that, once standing, if I "cue" the right foot to move first and I indicate its direction and then do the same for the left foot, I do not falter in my steps when walking.  

Conclusion

At what stage of PD am I? I can only guess that it's advanced and I'm s-l-o-w-i-n-g down. No sweat, the worst case scenario is...errr...that it's advanced, so, let's keep fighting the good fight, right? 

Oh, you owe me an email before or by the end of November. I look forward to it (even if it's not in English). Till next time, dear reader, I... 

    

(37) Dissecting PD, one assumption at a time

😟ACKNOWLEDGEMENT😟

I tend to repeat incidents and observations across my Blog posts. This is because there are overlapping contexts in which my experiences are rooted and, occasionally, they reinforce ideas. I apologise if this appears to be careless repetition. Remember, we can also chat at <ari.naidoo@gmail.com>.

Sit-t! Stay-y!

For most of my teenage life I would walk or cycle everywhere! When I was 40 years old I started power-walking, an exercise that had less impact on my joints than jogging had. I only stopped power-walking when I was 62, because of Parkinson's Disease (PD) and poor balance. And, as I have flat feet, I've been wearing corrective inner soles in my footwear since 2004. 

PD brought about physical change. My right side was affected first and because I started to drag my right foot slightly (2013-2017), colleagues thought I had gout. At work I often wore wrist weights on my right ankle and wrist, to remind me to move them during long walks on the large campus. After I retired in 2017, I lived in shorts and sandals, as it became difficult to tie shoelaces and to put on my socks. By 2020, when we moved to KwaZulu-Natal, I was sedentary (i.e. seated) most of the time. My exercising was reduced to 10-20 minute indoor sessions three times a week in front of a computer and from the comfort of a chair! 

That signalled the end of all outdoor activity, except, occasionally pushing a shopping trolley for extended periods in a large mall. Even trolley-walking wasn't ideal during the Covid pandemic (2020-2021) as I had to wear a mask which hampered breathing. In 2022 we moved to another apartment (see Post 35), so, more sitting and moping while I grew accustomed to the new space. The constants during rare walking occasions were my sandals and my walking aid.

The essence of the above is that between 2013 (PD diagnosis) and 2017 (retirement) I accepted and internalised the notion of having PD which, I think, resulted in my body becoming inactive. More and more muscles - especially those on my right side - became stiff after moving to our new road-level apartment, as there are no flights of stairs to be climbed. My body started to slow down because I believed I was slowing down, with muscle memory probably responsible for most muscle "damage". With hindsight, retirement created the perfect environment for PD to take root. 

Theory & rationale: avoiding PD drugs

THEORY I acknowledge that I may have fertilised my mental and physical fields for the PD forest to flourish. By accepting that I was parkinsed, I encouraged PD - like an alien, invasive species - to invade my mind and body. By believing that I was sick, I encouraged my mind to respond to and reinforce Parkinson's symptoms. The projected symptoms became manifest in me and I became a perfect Parkinson's sufferer. (Sigh!)

RATIONALE After a neurologist presented me with a positive diagnosis of PD in 2013, my response may appear naive: TO COMPLY with decades of medical and pharmaceutical research that recommends drugs with unpredictable side-effects (anecdotal and researched) and accept that gradual drug dosage increases will be the norm, OR TRUST MYSELF to seek out alternatives that might or might not be mainstream? I opted for the latter, the most radical alternative being cannabis oil (2015) that did not work for me. 

During recent visits to two neurologists (Ni and Nii) and a physician (Pi) the following is their take on my condition (details of Nii are in Post 23).  

• Ni (2020): "we can make a difference in your life with weekly, photobiomodulation via low-level infrared, laser treatment". I tried it because the neurologist was not judgemental, the procedure was non-invasive and I was PD-drug-free = I believe it made a huge difference to my brain and my body, even if there was a placebo effect determining my belief.  
• Pi (2021): "no drugs for 10 years - you have had amazing gains in your life! But Ni offers untested treatment (and he sniggered) - also, there's no clinical trial to support this." Then he recommended a mainstream neurologist, Nii = I accepted the recommendation. 
• Nii (2021): after a thorough examination he asked what medication I was taking, and his response to my answer was: "No drugs for 10 years - but, WHY? And you tried Ni (he also sniggered)? Here's a script for the gold standard in dopamine replacement. We will start with it twice daily then increase it to thrice daily, later" = I did not use the script and cancelled my follow-up appointment.  

I believe that we are able to control much of what the mind tells the body to do if it is done methodically and purposefully. For instance, 20 minutes of daily transcendental meditation lowers your heart rate when done correctly (I can vouch for this). Also, there is the notion of the body being able to renew itself, for instance, see Brandon Bays' The Journey and Joe Dispenza's You are the Placebo. There appears to be something built into our bodies that will regenerate it if we care to seek it out and harness it. I have also written about neuroplasticity (see Post 28) in a similar context.         

A kick-start?

After 10 years of being PD-drug-free, I have dodgy balance, I look angry and I take a long time to eat, to shower, to dress and to walk. I'm also self-conscious when in public spaces or meeting people for the first time so I tend to tremor excessively for a while. However, I'm convinced that my 70 year old brain is less "fuzzy" and working more effectively since 2020.

Regarding academic work, my last journal article was published in 2013, my last conference paper was presented in 2015 and then publically accessible writing ceased until my first Blog post in April 2020. My old confident self returned and I have been able to focus on my composition and writing ability. I have isolated five factors that may have kick-started this confidence and, possibly, slowed-down my PD.

Let me unpack these five factors for you, dear viewder (viewer+reader).

1. Photobiomodulation A concerned relative sent me a link to a January 2020 Carte Blanche programme featuring low-level infrared light treatment for PD, and the clinic offering Bioflex Laser Therapy was in Durban! I was intrigued as I watched it. Soon after, during the height of our COVID level 5 shutdown, I started my laser therapy. I opted to continue with the weekly, hour-long treatments for just over a year. I believe it triggered a series of positive reactions in me, something I am unable to prove, bar my personal testimony of it as a positive, lasting experience. My headspace was rejuvenated.

2. Ayurvedic treatment for PD I had been thinking about this approach for a few years so I consulted a doctor who has a practice close to where I live. The downside is that I am unable to recover my medicine expenses through medical aid but the upside is that doctor TRG is familiar with PD and has Ayurvedic medicines. After a three-month detox in 2021, in January 2022 he prescribed three medicines, one of which contains nature's equivalent of levodopa. I've had to give up my daily coffee, my favourite single malts and most meats but it is worth it. Complementing the medication is meditation and breathing exercises. There seem to be improvements in my response times to physical actions.

3. Mental Games (a) Word Challenge and (b) Wordle (New York Times version) challenge my ability to guess five-letter words through a process of elimination - there are only six chances to guess the right word. Both games provide scores and track progress but Wordle has sophisticated tracking and scoring systems. (c) Solitaire is based on the classic card game where one sorts and organises cards according to sequential numbering and card type. (d) Lumosity is a set of computer-based games testing problem-solving, memory, visual perception, language, logic and maths designed by neurologists. Some games are scored according to mouse-response speed (a challenge for my left hand) but most are not. There is a free as well as a premium version. I believe all 4 games have made a contribution to my mental agility.

4. Caregiver LM arrived in July 2022. She's confident about her job and provides care and assistance for me during the week. Besides tidying my space and attending to at least two meals she conducts and supports my exercise routines. I've been walking in sandals, for 15 minutes around the apartment block, at least thrice a week since she arrived. I'm also walking up and down stairs as a warm-up before my short walks. Also, from August I've been walking without my walking aid, which is good for my confidence! And on 27 September she put on my socks and walking shoes, and I went for a 20-minute walk around the block. What a thrill to walk in footwear with appropriate support! I kept the shoes on the whole day 😀. 

TIP FOR ME I've discovered that my balance improves during my walk, if I'm gently holding small stress balls in each hand. They allow my shoulders to relax and encourage me to focus on the act of walking!   

5. PD support For nearly three years I've relied on the brilliant online support of MDS based in Gauteng. However, I miss the face-to-face, warm-bodies' support. A few weeks ago, Parkinson's ZA was launched in Durban. To date they have run four, weekly two-hour long Occupational Therapy workshops that have been most useful. There have been illustrated handouts to support each weeks' activities, from dressing, to entering or alighting from a vehicle, to handwriting: all practical and applicable. Each session starts and ends with appropriate exercise. Naturally, LM accompanies me to these workshops.     

I hope this post has kept you curious, interested and perhaps informed, dear "viewder". Till next time, stay safe. <ari.naidoo@gmail.com> 

(36) My Parkinson's positives: 2013-2022

Words, words, words...

In 1958 I went to the The Good Shepherd, an English-medium primary school in the Eastern Cape. The mother-tongue of the children was either English, Afrikaans or Gujarati and I also learnt to read and write in Tamil at home (I cannot, anymore). Then, I attended an Afrikaans-medium high school. At university I majored in English and Drama (including courses in Afrikaans and German). I completed an Honours in Drama as well as a Master's degree on Adam Small, a South African playwright who wrote mainly in Afrikaans. 

My first teaching post was at the University of Zululand (1980), where I was sensitised to isiZulu and how different it was to English. Most important was the impact of one's mother-tongue, such as isiZulu, on one writing in an acquired language, such as English.

As I had been exposed to a number of languages in my life, I became critical about the impact of English on speakers of other languages, so I focused on language and writing in my career and research. Between 1988-2001, I explored ways of facilitating the English writing process for undergraduate students, whose mother-tongue was not English. From 2001, my focus shifted to assisting academic staff with their writing, leading to a PhD in 2007.

Literacy skills - particularly reading and writing - have always fascinated me, which is why I am grateful that, after having Parkinson's for ten years, I am still able to think, compose and type. Today, we will zoom in on my "handedness".

Incidentally, the Tamil script equivalent of my full name, "Arungasen", is "அருங்கச்சென்" (courtesy of a website). It looks vaguely familiar, dear reader, but I am unable to verify this, so...

Optimism: what's left to go, right? 

From the time I was diagnosed with Parkinson's Disease (PD) in 2013, I opted to stay Parkinson's-drug-free. At the time, I read extensively on the subject and was concerned with the possible and unpredictable side-effects of PD drugs. 

As PD appears to facilitate one's stress and anxiety, I have been consciously trying to focus on purely feel-good moments while also celebrating the gains in my PD life. Some positives (+) are below.

+ Positive News site. In keeping with this thinking, I subscribe to the Good Things Guy, a South African good news site. I get a weekly email with links to South African news to warm my heart. 

+ This Blog. Another positive is my typing, specifically related to learning to type with my left hand (a function that includes five left fingers and at least one finger from my right hand). This skill has developed over the last four years, and is worth noting, considering that I was born with a dominant right hand (see Neuroplasticity in post 28). The most productive thing I have done since retiring is to have produced this blog that has attracted people to visit the site regularly. Two general observations follow.

1. Numbers. During the past 28 months, since the launch in May 2020, there has been a total of 1701 views of my Blog (these are views as I have to assume they have read either part or all of my posts). Each of the 35 posts' viewership has varied between 20 and 60. 
2. Location. Most of my viewers are local and the rest are overseas. During August 2022, for instance, out of a total of 49 viewers, about 37% (18) are overseas [Russia (14), Ireland (2) and Greece (2)] while about 63% (31) are in South Africa.      

+ Handwriting. This is something I have valued as one who used to love to write and collect pens and pencils. Neurologists observe handwriting to determine whether one has a movement disorder such as PD. A simple test consists of writing a sentence, e.g. a nursery rhyme, and drawing an Archimedes spiral. Another is a comparison of writing or letters of the alphabet on lines and without lines. These tests are done in the context of Parkinson's tremors, stiff fingers and involuntary quivers.  Below are a few examples produced at home, seated at my desk, relaxed.  

1.  The paper is only 7.5cm square and I used a ballpoint pen for the writing and the Archimedes spiral. Enlarged, the writing appears to have been done with a shaky hand. 

OBSERVATION: I struggle to fill out forms in public, unless I'm able to control the lighting and surface on which I can write as clipboards are terrible! At home I am relaxed, while I am anxious in public. For instance, this week I attended a Parkinson's ZA occupational therapy workshop in Durban. My caregiver had to fill out the one-page registration form for me as I was unable to do this on a clipboard. (Sigh!)  

 
  

2. I wrote this last month using a Yoken felt-tipped calligraphy pen. I used to enjoy calligraphy but do not appear to have the patience for it anymore. I used a ruler to draw the lines, each one 4cm wide, on which I wrote. The paper is a normal A4 size sheet 21cm X 30cm. 

OBSERVATION: I surprised myself when I produced this, one line a day over five days. I was curious about my ability to write neatly and now it has been satisfied! Again, it was done at my desk and I was relaxed.    

 

+ Hand "dominance". There is a documented notion of mixed-handedness or "cross-dominance" which may describe what is going on with me (see Posts 8 and 28) regarding my left-right hand use. However, this describes a negative attribute when it occurs in children. These labels describe one favouring either the left or right hand, often in sport, leading to a "slowing" down of the brain function. Consequently, such labels often have a negative connotation when associated with children whose brains are still forming. 

In my case, a 70 year old adult, the following are estimations of my present state of handedness, where "LH" refers to my left hand, "RH" refers to my right and "pre-PD" refers to my condition before diagnosis in 2013. Below, is my list of the not-so-magnificent seven acts, monitored over the past seven years! I have listed these seven acts as they are based on my long-term observations.

• HANDWRITING.............:  RH (exclusively).................(pre-PD: same) 
• BRUSHING TEETH........:  LH (80%) + RH (20%).......(pre-PD: reversed)
• BRUSHING HAIR...........:  LH (80%) + RH (20%).......(pre-PD: reversed)
• SOAPING MYSELF........:  LH (80%) + RH (20%).......(pre-PD: 50%/50%)
• DISHWASHING..............:  LH (mostly).......................(pre-PD: reversed)
• TYPING (KEYBOARD)..: LH (80%) + RH (20%)........(pre-PD: reversed)
• MOUSE (COMPUTER)..:  LH (exclusively)..................(pre-PD: reversed)

The handwriting and ability to write has remained a constant, probably because of the complex processes connected to the act of writing. The handedness of the other six acts has been changed by my PD: what I like to call my "hijacked dexterity" 😒.  

   

Without PD chronic meds, what's left?

Well, if "chronic" means something that is persistent and generates effects that are long-lasting, then PD fits the bill. Being parkinsed also means that most PD people should take chronic medication for a long period. That also means that PD people taking chronic medication have to endure the possible side effects of such medication. NB: I respect and admire the courage of all my PD acquaintances who are on chronic medication!!!   

It is well documented that the most commonly prescribed drug for Parkinson's Disease is L-dopa/ Levodopa/Carbidopa/Sinemet/etc. This drug encourages the brain cells to convert its ingredients into dopamine, which, as we know, is in short supply due to the presence of Parkinson's. The result of such a conversion is that our dopamine supply is restocked so that we return to some form of normality. 

 In the world of nature's alternatives to drugs, there is a tropical bean, called mucuna pruriens. I've mentioned this before in posts 24 and 35. These beans contain natural levodopa that, unfortunately, is poisonous if ingested in its pure form. However, it has been extracted and used in ancient Chinese and Indian medicine for many centuries, including Ayurvedic regimes. For the curious reader, there are two research papers that look into this (Paper 1 & Paper 2). 

That's all for now, dear "viewder" 😁.  Till next time, take care.