(6) PD, muscle memory & a new normal

Muscle memory and muscle forgetory

In my last post I shared some thoughts about the likelihood of lowered dopamine resulting in 'unclear messaging' in my body. Losing some of my muscle memory - I like to call it my muscle 'forgetory' - has probably led to my poor coordination and 'bumbling gait'.  

In keeping with the notion of my being a practitioner researcher, described in detail in an earlier post, I decided to examine what was happening to me, how it has impacted and what remedial procedure might be applied. 

Let's start with getting dressed, specifically, putting on sandals. While this procedure might be banal for those without Parkinson's Disease (PD), it is likely to represent one of the many frustrations experienced by those who have been parkinsed. 

An Aha moment 

Nowadays, I seldom wear shoes as I struggle to slip them on before tying the laces. On the rare occasion when I do wear shoes, I have to use a shoe horn to get them on. Otherwise, for a retiree, a good pair of sandals are a great substitute. By 'good' I mean well structured sandals with good support from heel to toe, as I have flat feet. Also important, is the rear design of the sandals as I wear customised orthotics that should not slip out while I am walking. 

Bearing in mind that in 2013, the PD started on my right side, the right limbs are generally under utilised. My right arm and leg, generally, are less mobile than those on the left side. In the morning, my sandals are generally on the floor where I would have left them the previous night. Points, 1. and 2. represent the original process while the last two describe what is current. 

1. Leaning against the wall or holding onto something, I would first balance on the left leg, then point the right foot in the direction of the back of the sandal before quickly sliding my right foot in. PROBLEM: for the past few years, my right foot would go into a slow motion movement, then freeze, so I would be unable to slide my right foot into the sandal. I started to accept the action as normal as I had been parkinsed. 
2. During the 'freeze' action that would last up to twenty seconds, I would become irritated and the resulting frustration would reinforce the inaction and freezing. PROBLEM: I started to be concerned that, after regular occurrences, the slow motion action would be reinforced and then stored as the new normal during any attempt to wear sandals. Also, the action would gradually slow down to a freeze! What then? 
3. One morning, out of sheer frustration, I shut my eyes, then cursed, and slid my right foot slowly into the right sandal, and it went in without freezing! Yay! PROBLEM: for my foot to slide into the sandal while my eyes were closed, I had to be leaning against or holding onto something. I know it wasn't, but it felt as if it were a brand new action and I felt so confident. Later, I discovered that I could comfortably slip on my sandals while seated or standing while holding onto something, and keeping my eyes closed.
4. CONCLUSION: I needed to test the action of closing my eyes when dressing with other similar actions to test my new theory. CONCLUSION: Closing my eyes appears first to redirect then to remodel a previous normal memory, i.e. pre-PD, stored for such an action. Consequently, I had modified an existing action into a new normal, i.e. a during-PD memory, for wearing footwear. 

Discovery: I must close in order to open

My sense of points 3. and 4. above, is that my muscle memory appears to be guided, as well as triggered, by what my eyes are looking at during the start of a specific action. If I need to wear sandals, looking at a sandal or a shoe and then my foot, seems to trigger a muscle memory response (A), what may be regarded as the 'previous normal'. 

However, the PD has resulted in unclear or absent messaging, so response (A) has deteriorated to a slowed response (a). As (a) is unacceptable to me in my PD drug-free state, I hunted for and, serendipitously, found a corrective action, response (A+). During the (A+) action, I am performing an action familiar to my body's systems, but with my eyes physically closed. With regular practice, (A+) with any limbs, is slowly becoming my 'new normal'. I had to close my eyes in order to open my mind to new possibilities. I had to modify an existing function in order to reroute it.      

Closing my eyes in order to open my mind appears to allow me to modify a once familiar action from the 'previous normal' to the 'new normal'. It also works for me in other similar situations, where I need to get a limb through a narrow opening. Other examples would be getting my feet into shoes, or pushing my arms through both long and short shirt sleeves. It works so much better when I close my eyes. And this modification does not require me to hunt for any neurological theory to back it up: it works for me! 

Next, I will share what I have discovered how to improve certain balance actions. 

  

(5) PD, my theory & my corrective messaging

Name & tame 

Parkinsons's Disease (PD) is a 'progressive disease of the nervous system'. It is 'neurodegenerative' and arises as a result of 'a dopamine deficiency'. The jargon does not help me understand why, as a parkinsed person, I struggle to stand, to walk, to put on underwear or footwear, or to eat. Actually, it is just a miserable movement disorder.

Let's put this struggle into context. As a baby I learnt to roll over from my back onto my tummy and back, then to crawl and finally to stand unsteadily before attempting to walk. Such actions would have required a good sense of balance. All of this was positively reinforced: physically through my repetition and emotionally by my parents and others. Gradually, my muscles would have remembered what to do in order to complete these actions. It is likely that as a new walker, my age, weight and capability would have been key calculations that needed to be stored as some form of memory.

Similarly, as an active adult who gyms, jogs or is part of amateur team sport, I would need regular practice to stay fit and competitive in order to gradually improve. If I were injured or went on an extended work-related trip, such regular practice would lapse. Consequently, I would have become unfit but, once healed or back at work and old routines, I should have been able to return to previous levels of fitness. Here, the notion of muscle memory would have been a critical part of my fitness and recovery plan.

So, what happens to parkinsed people? Why can't my muscle memory save the day?

My PD theory 

It is reasonable to assume that lowered dopamine levels have led to my bumbling gait, loss of coordination and poor balance. Dopamine is the so-called 'messenger molecule' actively assisting in my body's general communications, feeding into and supporting the nervous system. So, my lowered dopamine levels have led to unclear messaging or even its absence. Years ago, computer programmers would have called this garbage-in-garbage-out: I'm unable to walk as I used to because my body and infrastructure cannot apply corrective measures, hence the bumbling gait!

Nowadays, my nervous system recognises my bumbling walk as my normal walk. My poor sense of balance, especially when going from a seated to a standing position, attempting to walk backwards or walking forward in cluttered spaces, has also become normal. And without corrective messages from my nervous system, I believe this data is stored in my muscle memory as the new normal. 

As a PD drug-free person, I assume that the range of PD prescription drugs available will attempt to regenerate such messaging in the body of one who has been parkinsed.

Some rehabilitation

In the past two years I have attempted to correct my awkward walk by speaking silently to myself regarding a step by step (pun intended) procedure. It started with my repeating "right-heel two-three toe-two-three, left-heel two-three toe-two-three" when I started to use a walking stick in my left hand. (I am using a collapsible, camera monopod that doubles as a walking stick: a tip from a buddy in Bali.) It is important to note that I first had to see my abnormal walking, in order to reintroduce the mechanics of my walking differently.

This process was assisted first by my counting to develop a rhythm and then by silently humming a waltz tune in order to sustain my "new" walk. Fortunately, I often have tunes playing in my head, so this has been easy. I guess this procedure simulated a kind of rehabilitation in the form of corrective messaging. In confined spaces, which is most of the inside of our flat, I still walk by dragging my right foot. However, when there's some space, for instance down the passage leading to the front door, I walk as a retiree. Shopping malls, while tiring, offer the perfect straight-line spaces.   

Also, I have observed that my Biokinetics regime is a hundred percent better with the appropriate equipment and under personal supervision, compared to doing it on my own at home. There is a strong need for emotional reinforcement, like I probably received as a baby trying to stand, balance and walk. 

Next I'll analyse then unpack my tips and tricks for dressing and for balance. Till next time and the next post, dear reader.

(4) PD clinical trial of GDNF

REVIEW: The GDNF trial

The BBC documentary entitled The Parkinson's Drug Trial: A Miracle Cure?, a two-part series, captures what a group of parkinsed people in the UK endure to be cured of their Parkinson's Disease (PD). The GDNF trial documents the invasive surgery in all its goriness. I have a copy of the complete documentary on my PVR, but have been unable to locate it again, bar online snippets.

In 2013, neurologist and chief investigator in the GDNF trial, Dr Allan Whone, acknowledged that in the field of PD research they had "good symptom improving therapies that work for some of the people some of the time...". Again, this further reinforces the notion of the 'conundrum' in the L-dopa Conundrum article referred to in my previous post. Around 2017, Dr Whone and the team proceeded with the GDNF trial involving 41 volunteers undergoing GDNF infusion.

GDNF, an abbreviation of glial cell line-derived neurotropic factor, is a protein produced in the brain and promotes the growth of brain cells including those lost as a result of PD. The GDNF, discovered in the 1950's and first trialed in the 1990's, would be introduced via tiny, catheter-like mechanisms surgically inserted into the brain and then accessed via an external port drilled into the skull. The monthly infusions of either GDNF or placebo would be via this port into the volunteers' surgical implants that, over a two-day period, would be dispensed to the appropriate area inside the brain.

In 2019 Dr Whone (open link and scroll down for his YouTube lecture) presented the procedure as well as the results of the trial. Unfortunately, volunteers' results (this site also has a link to the Journal article) of the clinical trial had fallen below the required threshold. As this had not complied with what had been scientifically determined, the trial was to be discontinued. Consequently, the pharmaceutics company withdrew its support, much to the immense disappointment of the volunteers. It is interesting to note that the trial result images also showed that GDNF, with varying degrees of significance, appeared to have revived brain cells damaged by PD. Sadly, this form of evidence was insufficient for that trial to have continued.

Reflection

The reality check for a viewer who has not been parkinsed is the impact of the documentary's in-depth recording of the lives of a small sample of the 41 volunteers. The documentary goes a long way to bridging the gaps between merely reading about PD and actually seeing its debilitations manifest in real life. One bears witness, first-hand, to what the intruder is capable of doing when allowed.

There were times that I cringed, seeing how parkinsed people were treated during the documentary. GDNF volunteers' levels of anxiety - visibly that of Tom Isaacs - appear to have been raised when in hospital rather than being lowered. Here, I refer to certain triggers for parkinsed people that exacerbate anxiety and accompanying tremors.

Both the movie Awakenings and The Parkinson's Drug Trial: A Miracle Cure? are depressing, real life accounts of experiments and possible cures. In both instances, one can conclude that medical science and pharmaceutics companies invest enormous amounts of time and resources to achieve their goals. This is especially cruel for the GDNF trial because one has to assume that all volunteers, seduced by the possibility of a cure for PD, will now spend the rest of their lives with these implants (I hope I'm mistaken here!).

Also one may deduce, in the case of PD, that science marches on in search of new funding, new collaboration and new journal articles. Sadly, in the centre of the GDNF trial are the brave 41 who pinned their future on hope and faith but will remain parkinsed: flotsam at the edge of the world of PD and science.

Next, I will examine how I started to adapt to my growing affliction. In the words of Peter Quince in Shakespeare's A Midsummer Night's Dream I should say: "Bless thee [Ari], thou art translated...".

          

(3) PD experiment in a movie

Me and PD

My life with Parkinson's Disease (PD) - and it is reasonable to assume that it applies to others - has both comic and serious undertones. It is not an elegantly crafted Shakespearian play but contains elements of a soap opera. 

Like a soapie, I have recurring status and play different roles. Some days I am Ari, fighting the effects of Bradykinesia. This term refers to my slowed movements, shuffling, dragging my right foot when walking, constant tremors, occasional rigidity and freezing of actions. When I see my reflection in a shop window or full length mirror, I resemble an actor attempting to mimic someone who's had a stroke. Also, I have been asked why I am angry because, of late, I often have little or no facial expression. 

Regarding the recurring status, on other days I am a parkinsed person wrestling for seven years with Ari and his damned alternative, drug-free approach to PD. This involves my practitioner-research approach to PD where I first observe a PD-related issue, then try to figure out a practical solution based on my experience and common sense before trawling the internet or probing medical research. One example would be how to deal with the freezing of movement when dressing, by examining the role of muscle memory and association: but more of that later. Let me describe two experiments which you might find interesting and informative.

REVIEW: AWAKENINGS, the movie   

I have come across two extreme examples of the unpredictable nature of PD. The first is Awakenings available on pay-TV channels, a memoir of neurologist and prolific author, Oliver Sacks, that was a book made into a movie in 1990 starring Robin Williams and Robert De Niro. The second is a BBC documentary  entitled The Parkinson's Drug Trial: A Miracle Cure? First let's look at the movie.

The movie Awakenings (1990) is about seemingly catatonic patients in a psychiatric hospital in New York. The patients are mostly victims of encephalytis lethargica, an epidemic that might have started sporadically across Europe during the early 1500s and was then identified and labelled in the early 1900s. This neurological syndrome presented itself in two phases, the latter clinical phase resembling PD, which may explain why a PD drug was used on the patients.

The movie starts with a young boy gradually becoming dysfunctional and one sees the impact on his life as a teenager. Fast-forward about 50 years and that child is one of a group of adults, played by Robert De Niro, who appears to be displaying PD-like symptoms in a psychiatric hospital. In an attempt to bring him and others out of their catatonic state, an experimental drug called L-dopa is prescribed by Dr Sayer, played by Robin Williams, who has already made startling observations of some of his patients. Although L-dopa was developed specifically for PD, the symptoms presented by patients with encephalitis lethargica are similar, hence the doctor's decision to prescribe it. Dr Sayer, prior to joining the psychiatric hospital, was a medical doctor and serious researcher with a healthy regard for what is measurable and, consequently, what may be accepted as evidence.

What is evidence?

In his new job at the psychiatric hospital, Dr Sayer appears to turn a corner in his career. He starts to question the notion of evidence when, in an attempt to justify the need for L-dopa to be prescribed, he is reminded by his manager that the patients have been immobile for many years. Dr Sayer responds stating "...that people are alive inside...". The manager warns Dr Sayer not to expect the hospital to fund the L-dopa "trial" that would cost around $12,000 per month. However, hospital support staff, encouraged by his humane approach and his persistence, start donating small amounts of their own money for the "trial" to begin, which appears to put pressure on management. Hence, the manner in which evidence is gathered, structured and accepted, differs from fraternity to fraternity.

The L-dopa conundrum   

Unfortunately, once his patients take L-dopa it is obvious in the movie that Dr Sayer is unable to calculate a prescribed dosage required by each patient. It is interesting to note that in 2013, a journal article entitled The L-dopa Conundrum questions the presence of L-dopa and similar drugs by asking: "Should newly diagnosed patients delay taking L-dopa as long as possible or seize the day?" The question is being posed more than 50 years after the launch of the PD drug!

Next we'll examine the clinical trial and the use of GDNF and indulge in some reflection on both. 

      

       

(2) Parkinson's, mind games & "I"

The internet and mind games

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. 

        

Possible diagnosis and early symptoms 

In my case, I may have been parkinsed as a result of traumatic brain injury. When I was a child, during the 1950's, I fell out of a moving car. I was told later that I had spent a number of days in hospital before being discharged. Fast forward to 2008 and I spent a night in hospital because of an intense headache. In between there was another possible trigger: the death of our son in 1999. This is my attempt to stitch together a series of personal traumas that may have led, directly or indirectly, to the lowering of my dopamine levels and the resultant PD. 

During the 1990's I was a power walker but by 2011 I had difficulty with my co-ordination so I was forced to stop walking outdoors and on uneven surfaces. Around 2012 I noticed that my right leg would tremble whilst urinating when standing. I ignored it but my wife insisted I see our GP who recommended I see a neurologist. After having an MRI to eliminate other possibilities, the neurologist declared I had PD. From then I have been conscious of PD, an intruder, often masquerading as another "me". This other "me" is frequently responsible for mind games!   

Regardless of these events - the 1950's car incident, the death of our son and their possible unintended consequences - from 2017 I started to vegetate indoors. It has been disturbingly fascinating to be aware that often I would feel the need to exercise yet the other "me" would convince me to rest. I wish I knew where to get a restraining order on "him".

Go left, right?   

By 2016 I started to favour my left hand during household chores, when driving and even when typing. I have been consciously trying to reverse this as I am a naturally right-handed person. Yet another mind game to make my left side, that currently represents my more confident side, the dominant one.

I believe that as the PD started on my right side, the diminished use of my right arm, and by default the right shoulder, has led to the intense right shoulder pain that used to wake me at night. In 2018 I started having monthly physiotherapy for that right shoulder pain. While it was always pleasant, its effect was short-lived. In 2019 I found a rehabilitation centre offering the BIG programme. While the exercise programme is rooted in sound principles, it is quite expensive so in 2020 I sought an alternative, namely, Biokinetics. The customised regime appears to be effective for me, especially when exercising under supervision and using the right equipment, rather than at home on my own. 

Another useful and constructive activity is dance. In 2019 my wife came across a Dance for Parkinson's class and I joined it. Emanating from the USA, this is for those who are parkinsed as well as for their caregivers. The class I have been attending in Gauteng, South Africa, has a few dozen participants many of whom are on some form of medication. However, they are all competent participants who make the class a stimulating one. Most importantly, I have observed that I am unlikely to be woken by a sore shoulder during the night following a dance class or Biokinetics! 

In my next post, I will examine two examples of PD treatment. The one is from a 1990 movie, set in the USA and ostensibly about movement disorders. The other, is a 2018 documentary about a recent clinical trial in the UK. From the perspective of one who is parkinsed, I will provide a context and some reflection on both examples.  

      

(1) Parkinsons Disease & I

Introduction and context

I have been in South African higher education all my working life. During the latter years, since 2002, I provided teaching and learning support for academic staff till 2017, when I retired. My research has been on language issues as well as how to develop strategies in writers for whom English is another language.

I am also a practitioner researcher. This means that I attempt to solve a problem first by analysing the issue, then to draw on personal experience to provide a familiar context in order to consider possible solutions. Only after developing a solution will I delve into the possibility of underlying theories and broader schools of thought.    

In my career I enjoyed facilitating workshops, often requested to assist outside the social sciences, for instance, in science and engineering. However, since I was diagnosed with Parkinson's Disease (PD) in 2013, standing in front of any group of people - either academics or family and friends - has generated much discomfort that generally results in visible tremors. 

Being parkinsed (I hope you approve of my new descriptor) is like having my body under siege. My nervous system, muscles and accompanying organs all appear to have been hi-jacked and then used to hitch-hike, undetected, through me. The intruder is shrewd, as its goal appears to be to create doubt when I execute simple actions. This doubt leads to a breakdown in my confidence. Rather than give in, I decided first to analyse this siege and then attempt to deconstruct the war plan.

My response

I have come to the conclusion that being parkinsed is a mind game between the intruder-cum-hi-jacker and I! Should I fight back or roll over and play dead? That is why I have chosen Hamlet's opening lines of the fourth soliloquy in Shakespeare's Hamlet (Act 3, Scene 1) in my blog title.

"To be, or not to be: that is the question. 

Whether 'tis nobler in the mind to is suffer

The slings and arrows of outrageous fortune, 

Or to take arms against a sea of troubles,

And by opposing end them?"

I am attempting 'to take arms against [PD]' and 'by opposing' to stem the intrusion without PD drugs. Yes, I have not been on any drugs since my diagnosis in 2013. The mind games are exhausting and unpredictable and little appears to be known by pharmaceutical companies about, specifically, how to 'take arms'.

In forthcoming blog posts, dear reader, I will be sharing PD tips and tricks I have discovered. I will describe my attempt to counteract muscle memory, one of the greatest challenges to one who's been parkinsed. I will also provide food for thought regarding a recent international PD trial (2018) using GDNF and a movie about movement disorders called Awakenings (1990).