(50) Parkinson's Disease: challenging PD with a PhD (PART 1).

First PD "diagnosis": 2013

My first visit to a neurologist was in 2013 in Pretoria. My GP recommended it, because since 2012 I had complained of a tremor in my right leg whenever I urinated. The neurologist subsequently requested an MRI scan. 

A few weeks later, my wife and I entered his consulting rooms. He had a brief chat and then he asked me for the MRI images. I gave him the envelope and waited in anticipation. He spent a minute studying the scan then asked me to walk across the room and back to my seat. Then he observed:

1. The MRI scan was "clear", so he could rule out any other conditions, such as a tumor;
2. However, my walking action indicated that I had Parkinson's Disease (PD): I was dragging my right leg slightly, not swinging my right arm and PD could be the reason for my "leg tremor"; and
3. He prescribed chronic medication for my PD - I accepted the diagnosis but indicated my unwillingness to use the prescription, due to generally unpredictable side effects of PD drugs.

Early daze 

The neurologist's 2013 diagnosis based on my walking got me thinking. I was at the pinnacle of my career after 36 years in higher education. I had 13 years' experience in the theatre (M.A.), 10 years in computer-assisted education (M.Ed.) and after 7 years' reflective practice I had developed an instrument to assess writing (D.Ed.). Could I draw from this higher education experience to fight my PD? Maybe...

Also, I was a "practitioner researcher", generating personal theory from my actual practice (my PhD has this evidence). Could I challenge PD with a PhD 😊? Could I, as a practitioner researcher, eventually generate personal theories based on my own observations of PD? Maybe...

Many challenges emerged, based on the familiar (stuff I would have known for a long time) and with what I was comfortable (stuff that would not lead to confrontation). If I were to be a PD warrior, then there appeared to be four, proactive challenges before my retirement in December, 2017. 

 

1. Could I strengthen my mental capacity in order to challenge my PD before my retirement?
2. Would improved physical ability help me attack my PD before my retirement? 
3. Could I shield my state of health and slow down my PD before my retirement? 
4. Could I generate personal theories in support of my experience as a PD warrior?   

Warrior training 2013-2017

After the "walking" diagnosis I decided to avoid taking PD prescription drugs for as long as possible and to actively seek alternative approaches to fighting my PD. I would try to use my PhD to fight the PD for as long as possible. Let me unpack two of the four areas of warrior training in this post. 

1.  Mental Capacity 

I started to have short-term memory lapses in my mid-fifties. I came across colleagues with similar issues and we often talked about the challenges associated with ageing and how it could impact our own teaching and learning. We wondered about using technology to help our tired brains, so, instead of typing maybe we should use "Siri" or "hi Google". However, we all agreed that this could lead to greater reliance on technology and less on brain power, so that was not a solution but likely to have the opposite effect. 

So I decided to try the following technology-free approaches, some of which were work-related and ideal tools to build my mental capacity to wage war on my PD.

MIND MAPS As a professional development specialist (2002-2017), I was a facilitator of teaching, learning and assessment skills for academic staff but in 2009 I shifted my focus. Instead of using a laptop or tablet to record minutes of meetings I used pen and paper-based mind-maps to select main, sub-ideas and details! As secretary of two university committees as well as a professional body off-campus, I had opportunities to practise. By 2010 I had become proficient at this form of note-taking and my confidence may have helped me confront my PD. I continued using this skill till 2017.

PECHA KUCHA This is a reductionist technique developed in Japan to reduce a paper's length or to introduce new concepts in under seven minutes. A Pecha Kucha limits a presentation to 20 PowerPoint slides each on a timer (20 slides X 20 seconds per slide = 400 seconds per  presentation)! Attached is a link to a Pecha Kucha template. I have presented two papers as Pecha Kuchas and the one on Boyer (2013) is available online. This form of presentation focuses on key points, avoiding detail. In 2014 I was requested to develop a training programme to prepare staff to convert their papers into Pecha Kuchas for an international ICDE conference in 2015. The programme continued till 2017 and was a confidence booster for me!

14 November 2023

HANDWRITING Up until my retirement I always enjoyed writing by hand and I wonder what impact this had on my confidence: could it have affected my fight with PD? In September 2022 I published Post 36 of my Blog in which I shared thoughts on handedness and some samples of my handwriting. In November 2023 I wrote my granddaughters' names on three envelopes (see picture). I did not rule any lines and used a felt-tipped pen. As a 71-year old person who is PD drug-free, I still enjoy handwriting!

It is significant that I type slowly with my left hand and complete 95% of my daily activities with my left too but, occasionally, I am still able to write legibly with my right hand. Hmm! PD only has a negative effect on my handwriting, when I have to fill out a full-page form by hand using a clipboard!! 

Apparently there is a lot going on in the brain whilst we're writing. There is also useful research on note taking and the advantage of handwriting compared to a keyboard, dear reader. 

 

2. Physical Ability.

Most people with Parkinson's know that on multiple fronts, exercise can "help both motor (gait, balance, strength) and nonmotor (depression, apathy, fatigue, constipation) aspects of Parkinson's disease as well as secondary complications of immobility (cardiovascular, osteoporosis)" (van der Kolk & King, 2013). I agree: the more I avoid daily exercise, the harder it is to fight against my PD. Sigh! 

Between 2013-2017 I walked at work daily at lunchtime, used stairways 90% of the time, daily, between the third floor (my office) and the sixth floor (seminar room) and monthly I used the stairs between the third and the eleventh floors (Director's office). In 2016 I discovered if I strapped wrist-weights above my ankles they would "remind" my feet to move when I walked at work. I shared this with other people with PD.   

A few friends who were diagnosed with PD in 2018, have managed to maintain regular, intense exercise with swimming and long distance hiking regimes while on PD medication. I stopped power walking in 2015, retired in 2017, stopped going to the gym in 2019 and stopped driving in 2022. Now I go for short walks and cycle indoors twice weekly. My exercise habit is broken and I have weakened significantly. 

The last two warrior training observations will appear in Post 51. Till then, Happy Holidays!

(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...

(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.