A sense of onlyness

Parkinson’s makes me feel like the American President on a state visit; an army of bodyguards controls where the President goes, when he eats, what he does, whom he meets… For the most powerful man in the world the President has very little personal control; he sits in the eye of a storm alone, feeling a sense of onlyness and disconnection from the world. Who is more powerful, the President or the bodyguards controlling access to the President?

Similarly, I feel a sense of onlyness as I am surrounded by my Parkinson’s and feel increasingly cut off from the world; each symptom is a bodyguard shielding me from view and escorting me from place to place. Each plan I formulate and each move I make is carefully scrutinised and controlled by a symptom bodyguard. I feel detached and alone, surrounded by a closed circle of symptoms that control me more and more…

Navigating your landscape

Living your life (whether it is with a disability or not) involves walking around and learning to navigate your internal landscape. As you explore the physical world you also become familiar with the various landmarks and provinces of yourself; happiness is by the sea, depression is located in the dark forest, Parkinson’s is a mountain range, your intelligence is a deep lake, stammering is an icy path... As you gradually build a map of yourself, you recognise places you’ve been to before, which enables you to turn away from the path leading to the depression forest or take the easier route through the Parkinson’s mountains or stay a while in the warmth of a sunny meadow. Sometimes you will get lost or find yourself in a new part of your landscape. Sometimes you will have to redraw your map completely. You are constantly moving around your thrown landscape, trying to find the right path and coming to terms with the terrain and the place you inhabit.

The prognosis trap

Aristotle developed a system of logical inductive argument that we still use today. It takes the form: all birds are feathered, a robin is a bird, therefore a robin has feathers. The conclusion is dependent on the preceding two conditions being true. Such an argument can be applied to Parkinson’s. For example, Parkinson’s patients in the past gradually lost control of their body, Jonathan has Parkinson’s, therefore Jonathan will lose control of his body. This is the logical trap set by the prognosis of Parkinson’s.

Logical inductive arguments fall apart when they are applied to the future; they are undone by the unpredictability of future events. The first condition (e.g. all birds are feathered or Parkinson’s patients lose control) may not apply in the future. For the conclusion of an inductive argument to be valid at all times, the future has to be known. But a prognosis deals with a possible future based on what happened in the past. Therefore, the prognosis of Parkinson's is only a prediction and not a fact. No argument is future proof.

Losing control of my body

My perception of the progress of Parkinson’s disease is that I am gradually losing control of my body. Is this justified? What control do I have? What does it mean to lose this control?

Heidegger argued that we only know the truth of objects by interacting with them. For example, a description of what a hammer does is incomplete without actually holding a hammer and using it. In other words, we are the essential mediators of truth. Heidegger saw there are two types of object, those we can interact with and truly know (called ready-at-hand) and those beyond our reach (called present-at-hand).

For instance, I am interacting in a specific way with the computer in front of me to type these words and as such the computer is ready-at-hand for me. This is possible because the computer is designed to be useable within the limits of my thrownness (the state in which I exist); for example, the screen produces light in the visual spectrum and the keys are designed to be pressed down using the strength of the muscles and tendons in my hands and arms. Indeed, all things designed for human use must fall within the boundary of our thrownness if they are to be useful.

Natural (non-man made) objects can also be ready-at-hand, in that they are exploitable within our thrownness. It is wrong to assume such objects were designed to be this way. If our thrownness happened to be different then the range of objects that are ready-at-hand for us would also be different. It could be argued that our success as a species is down to the wide range of objects that are ready-at-hand for us.

However, there are many objects that we cannot interact with; these are merely present-at-hand. For example, although we can see light reflected from the surface of Mars (only the light is ready-at-hand), we cannot interact with or truly know the objects on the surface of Mars; they remain present-at-hand until we experience them directly.

Our thrownness includes the ability to control our body through its interaction with our conscious will, thereby making specific movements of the body ready-at-hand (e.g. moving the many muscles and tendons required to type these words). However, most of the processes of the body are devoid of direct conscious interaction and therefore are present-at-hand. Nonetheless, consciousness can indirectly influence some of these processes; for example, heart rate is controlled unconsciously but going for a run increases heart rate.

Parkinson’s interferes with the interaction between consciousness and the body; therefore, the progressive loss of control in Parkinson’s could be seen as a shift from the body being ready-at-hand to becoming increasingly present-at-hand. 

If interaction is key to knowing, it follows that as the interaction is curtailed in Parkinson’s the possibility of knowing the control and movement we had before is also curtailed. But the mind interacts with itself and Parkinson’s interferes much less with this relationship; therefore, as control of the body is lost the mind continues to know itself and retains the ability to indirectly influence the symptoms of Parkinson’s. 

Intentionality within disability

Vincent Van Gogh is one of the most famous artists in the world with a very distinctive, recognisable style. He is also one of the most famous people in history to suffer from mental health problems. Van Gogh's suffering can overshadow his artistic achievements; as if his mental problems had sole possession of his paintbrush. How much of his success in art was generated by an intentional, developing artistic program implemented by Van Gogh and how much was determined by the imposition of his mental health problems? This raises a more general question; how much conscious intent is possible within a disability?

To take Van Gogh as an example, he was a highly intelligent, open and articulate person. In the letters he wrote to his brother he describes many times his artistic intentions and the forging of his artistic voice; his paintings were not random splashes of paint, they served an artistic purpose. Therefore, even within the mental problems he had, Van Gogh could articulate and carry out an artistic program. He was able to develop a new visual language and through this language express his emotional state in his paintings; which I believe became the meaning of his art.

The efficiency and effectiveness in which he carried out his intentions was probably affected by his health. This may have also impacted the efficiency of the thought process Van Gogh went through to formulate his artistic intentions but (as evidenced by his letters) not the content of that thought.

I believe that within disabilities that allow at least periods of lucid thought (e.g. Parkinson’s) there is a difference between the intact formulation of intention and the lack of ability to carry out the intended act. Indeed, the disparity between formulating a reasonable intention (e.g. getting a glass of water) and being unable to fulfil its demands may be a measure of the impact of the disability. Of course, within a disability affecting the content of reasonable intention this logic does not apply (e.g. a delusional person); the content and act are both missing.

It is wrong to assume that Van Gogh or a person with Parkinson’s lack conscious intention within the physical and mental confines of their disability; either when the perception or actuality of the disability masks that intention.

"Take these broken wings and learn to fly..."

Parkinson’s beats you up and breaks your wings, sending you crashing into the ground. Once the dust settles you sit there, head bowed, gingerly moving your wings and nursing the shooting pain from the fractures. You have to walk on the ground while looking, with envy, at those people soaring overhead. As you grieve you start to bandage your wings with acceptance and emotional support. Depression makes your wings ache so you overhear it and apply ointment to soothe the pain.

As you start to fix the emotional fractures, your wings become set in a different shape and move in an altered, uncoordinated way. Frustrated, you give up moving your wings because they are no longer what they were… But something makes you use your wings again; you concentrate on moving one, then the other and gradually learn the new range of movement and coordination. You repeat the lessons over and over again until you are ready to attempt your first flight after your wings were broken. Flapping furiously, you begin to lift off the ground but tiredness hits you so you don’t get far. After a rest you try again and this time you fly for longer, albeit not as high as you could before but at least you are flying!

Parkinson’s disease breaks your wings and requires you to adapt and learn to fly in a new way.

Taking things for granted

When you stop reading this and inevitably turn your attention to something else you will leave my Parkinson’s behind, allowing it to recede into the background. Parkinson’s has a strong but limited physical sphere of influence within the body of a sufferer and as such there is a clear boundary beyond which it has no influence (i.e. it cannot “infect” non-sufferers). This means when you go my Parkinson’s remains with me; there is no edge to the disease for those suffering from it. Even when I stop thinking about my disease, it remains in the symptoms I feel; for example, in my tiredness and depression. Parkinson’s is part of me and of course I accompany myself wherever I go! This is the chronic nature of Parkinson’s.

Of course there may be no emotional edge to the empathy felt for a sufferer and I am very grateful for this support. But I am also pleased you, as a non-sufferer, can physically leave my Parkinson’s behind; you have that freedom and choice. I beg you don’t take that freedom for granted. Live up to its immense value. Try your best and enjoy what you are capable of doing. Don’t waste the potential your freedom of movement gives you. I took movement for granted before my Parkinson’s emerged. If the genetic shuffling of the cards was slightly different you might have ended up in my position.

I may be in the process of losing control of my body but this has taught me the value of my mind and the wonder of having a thought. What a marvellous thing to do! I am trying to live up to the value of thinking by continuing to learn and encouraging understanding in others.

On the edge of exhaustion

Parkinson’s has pushed me into the precarious position of constantly functioning on the edge of exhaustion. Prior to the emergence of my symptoms I used to lower my cup into the well and fill it right to the brim with cool, refreshing energy. Now the cup emerges from the well with barely a drop of energy in it. The reliance I once had that my energy reserves matched the activity I wanted to do is no longer there. It’s as if I’ve suffered a power cut and the only way I can see is using a dim torch.

A lack of energy undermines everything, including my movement. It renders my effort into either short bursts or dragging myself along the floor. Exhaustion also has a psychological impact; it removes the confidence I had that if I start something I will finish it. It makes me strictly ration whatever energy I have, thus causing a narrowing of my life.

While most 34 year olds are building relationships and marriages, having and looking after children and forging careers I’m left wondering whether I have the energy to get showered and dressed on a morning. It feels like I have the energy of a 70 year old without the fruits of 70 years of effort or the knowledge of how to manage gradually diminishing energy.

Along with the difficulty of my movement, Parkinson tiredness (which is closely linked to initiating and completing movement anyway) has become a major challenge.

“What the hell is happening to me?” – the first encounter with depression

I’ve suffered multiple bouts of depression during my life but my first encounter was the hardest. It is an incredibly confusing time because you know something isn’t right but you don’t know the source. You have to go through depression to know it is depression that is affecting you. Therefore, the first time depression hits it has probably been building for a while and you’ve missed the warning signs (for me, I wanted to cry all the time, I couldn’t sleep and I was numb to happiness) so the force of it can feel overwhelming; as a result I thought at the time, “What the hell is happening to me?” Depression is one of the most challenging emotional states you can experience. It is internal to you but feels something out of your control; it represses emotion and narrows thought. Depression convinces you it is the only way you can think.

It is important to seek medical help; you are not alone in your suffering and although it doesn’t feel like it at the time there is a way through. Depression is a process and not a permanent state. Working through malignant sadness the first time teaches you a huge amount about who you are and what you can do; it teaches you to listen to yourself, it shows your depths of resilience and determination, it arms you against depression so if it starts to build again you can catch it earlier and know how to deal with it.

Parkinson’s UK “Dave the Worm” campaign – why study worms?

Parkinson’s UK have launched a campaign to raise money for research into worms. What have worms got to do with Parkinson’s?

Dave’s website
Facebook
Twitter

The problem with studying the human brain is its bewildering complexity; it has around 100 billion nerve cells and is said to be the most complicated structure in the known universe! This creates a difficulty when trying to understand the basic causes of diseases like Parkinson’s; because the brain is so complex and contains a vast number of processes and individual components, it is very difficult to identify in humans those components responsible for Parkinson’s. Future treatment will target these malfunctioning components so it is crucial to identify them and study their effect on individual cells and also networks of nerve cells.

What is needed initially is less complexity. Luckily for us, we are related to an organism with a simple nervous system that shares many of the components found in our brains. This relative is C.elegans, a 1mm long worm! C.elegans has only 302 nerve cells (including dopamine producing nerve cells) and we know the “tube map” of what each cell connects to and its role in controlling the movement of the worm.

If something goes wrong with a nerve cell in C.elegans it develops movement symptoms; because of the worms relative simplicity the symptoms can be more easily traced back to the nerve cell and specifically to the component that has gone wrong. Also, the effect of the malfunction can be followed along the tube tracks of the nervous system of C.elegans to understand why the symptoms develop. Not bad for a 1mm long worm!

Basic research such as that in C.elegans is crucial in understanding the basis of diseases such as Parkinson’s, it forms the foundation of knowledge and sets the questions to be answered in more complex organisms, including humans.

Parkinson’s UK recognises the value of basic research and has launched a campaign to raise £250,000 for C.elegans research by sponsoring one of our worm relatives. Follow the links for further information and to help cure Parkinson’s:

Dave’s website
Facebook
Twitter

Is Parkinson's outside or inside?

The opposing views held by Plato and Aristotle has dominated intellectual discourse for 2,500 years. Plato maintained that every object we see has an ideal example, outside of the changing world we live in, that is never destroyed; for example, when we see cows in a field we know they are cows because we have access to knowledge of the ideal cow. For Plato, knowledge is imposed from the outside. Aristotle disagreed; he held that the person viewing the cows plays an active part in knowing they are cows. Learning and experience teaches us the defining characteristics of the objects we see. When we come across such objects again we use our learnt template to see if the object fits; if it does then we know the object. For Aristotle, knowledge is generated inside us.

Our confrontation with Parkinson’s can be framed in a similar way. Parkinson’s can be seen as being imposed from the outside, forcing the sufferer into a passive role while under siege by the disease; Parkinson’s becomes the ideal opponent. Alternatively, you can see the disease as part of you and recognise the much more active role you can play in finding ways to counteract the symptoms; Parkinson’s becomes malleable.

Why do nerve cells die in Parkinson's?

Parkinson’s disease is caused primarily by loss of dopamergic (dopamine producing) nerve cells in a structure of the brain called the substantia nigra. This results in reduced levels of dopamine and inefficient activation of networks of nerve cells that initiate and control movement. Why do dopamergic nerve cells die?

Analogy

Imagine a party is underway and all the components of the cell are happily dancing to the music. Mitochondria, who are waiters at the party, are handing out ATP energy drinks to keep the guests going. The organiser of the party, DNA, is pleased with how the party is progressing and plays another record. The cellular components continue to dance. Then something goes wrong. Mitochondria start serving drinks spiked with reactive oxidative species and the guests gradually get drunk; they no longer dance in a coordinated way. One group of guests at the party, alpha-synuclein, gather together in big clumps on the dance floor and prevent other guests from moving freely. Eventually DNA becomes intoxicated and plays increasingly erratic music; the guests dance wildly. This behaviour just won’t do! The apoptosis police are called into action and they start to shut down the party; guests are stopped from dancing and are arrested; DNA breaks down and the music fades. The cell dies.

What is happening in cells?

Dopamergic nerves cells in the substantia nigra consume lots of energy. As a result they require the power plants of the cell, mitochondria, to work hard replacing the lost energy. A by-product of energy production are “oxidative reactive species”, which are highly reactive chemicals that could damage DNA and proteins. Therefore, dopamergic nerve cells are said to be under “oxidative stress” because there are lots of oxidative reactive species in these cells; if anything went wrong they are more susceptible to damage.

All cells have a fail-safe mechanism called “apoptosis” (or programmed cell death), which has evolved to prevent malfunctioning cells from accumulating damage to DNA and proteins that could potentially lead to uncontrolled cell division and other toxic affects. Once damage is detected and apoptosis is triggered, a cascade of events takes place within the cell to cause its self-destruction.

It has been shown in Parkinson’s disease there are two main causes identified so far that increase oxidative stress, damage cells, trigger apoptosis and ultimately results in loss of nerve cells. Inherited mutations or environmental agents that disrupt the function or physical structure of mitochondria can increase oxidative stress. Similarly, accumulation of the protein alpha-synuclein in Lewy bodies, a common feature of nerve cells in Parkinson’s, can lead to increased levels of oxidative stress and cellular damage. 

Adapting to a life with Parkinson's

The extent of your disability is related to how well adapted the environment is to your needs. This applies to everyone; for example, if your TV projected UV light it would be ill suited to the need we all have of seeing only in the visual part of the spectrum. Therefore, we all adapt our environment to our needs and buy TVs that generate visual light.

It is important to apply the way we adapt to everyday things to the challenges of Parkinson’s. I’ve made the following adaptations with the help of my Occupational Therapist:

Bathroom

I use an electric toothbrush.

I have a perching stool so I can sit and do my teeth.

I go to the barbers to have a shave.

I have a raised toilet seat to help me descend from my throne.

I use moist toilet paper to speed up wiping.

I have a bath chair so I can take rests when showering.

I use anti-dandruff shampoo to fight my dry skin.

Holding a sponge is challenging so I use a bath mitt.

Kitchen

I have a perching stool so I can sit and prepare meals.

I use a chopping board with a clamp to help me open bottles and jars.

When I can I buy ready-prepared and chopped vegetables and meat.

I use one-handed scissors.

I use light weight cutlery with big handles.

I wash up using rubber gloves with attached scrubbing pads.

Living room

I have my laptop on an adjustable table.

I find holding a book challenging so I use an eBook. 

Clothes

I use slip on shoes.

Adaptation is a delicate balance between challenging yourself and doing things with a little help. It isn't about doing nothing; its about enabling you to do something you otherwise wouldn't do or making that something easier. For example, every time I leave my flat I could spend 10 minutes tying my shoe laces or use slip on shoes and put the time and energy saved to a better purpose. The adaptation of using slip on shoes doesn't cause me to stay in my flat, it makes it easier to go out.

My aim is to save as much energy as possible to do what I want to alongside my Parkinson's.

Reconciling ability and disability

It took me a long time to see my stammer, depression and Parkinson’s as part of my thrownness (the way I exist) and the person I am; I always tried to push these things away and live my life as if they weren’t there. I grew and nurtured expectations of what my life could be based on the absence of my disabilities. As a result I never really adapted myself to my thrownness or knew how to react in a helpful way, especially to my stammer and depression. The emergence of my Parkinson’s has finally made me confront my status as being disabled. How much of my non-disabled expectations are curtailed by the reality of my thrownness? Is the conflagration of my stammer, depression and Parkinson’s the perfect storm generating my isolation (being communication, emotional and physical disabilities)?

It is difficult to reconcile the lack of ability inherent in the meaning of stammering, depression and Parkinson’s when I have the ability to achieve a DPhil at Oxford. My disabilities set the default in me of facing the world with an introverted, closed stance. Completing my DPhil required a closed obsession and determination that I learnt from dealing with my disabilities so achieving my doctorate was compatible with adopting a closed stance. On the other hand, breaking through isolation requires an open, mutual obsession that is the antithesis of my default position.

I can ultimately see both my ability and disability as me because they are separate configurations of my thrownness. The term “disability” has a leaky meaning and tends to spread and obscure the abilities that a disabled person also has.

A particular configuration of your thrownness is influential in your life because it sets up an automatic, default position for you to inhabit. Despite this, you have the chance to mobilise other parts of your thrownness to react to and resist your default; this is made possible by recognising your stance as only one part of you and not, as I did, try to disown and ignore that part.

Open 24/7

I am like a shop that is open 24 hours a day, 7 days a week. I can take no holidays; I must be at the tills ready to serve my customers. Strangely enough, I only have one customer; a surly, rather overbearing, ill-tempered gentleman I think by the name of Parkinson. Parki, as I call him behind his back, turns up throughout the day and when he does he lets the whole shop know he’s arrived. He grabs at a basket, knocking the rest of the neatly arranged baskets to the floor. Storming into the shop with flailing arms and resounding footsteps, he shouts and screams, “Where’s this?!” and “Where’s that?!” and “I want this, now!”. It’s infuriating! He even wanders along the aisles, arm outstretched, knocking everything on the floor. I try to catch up with Parki, putting all the produce back in its correct place but it’s impossible; a real mess!

Parkinson piles his basket high with energy, confidence, contentment and future among other things from my shelves; and I promise you this is true, he walks out without paying! Very rude! I try to tidy up and restock the things he takes but it is difficult to find suppliers. Parki is a bad customer! O no, here he comes again! Mr Parkinson, please leave that alone…

Keeping my mind active

I love to think and understand and learn; following new thoughts and also new implications of old thoughts until I reach unexplored vitas and places in human intellectual history in which I can set up camp and stay awhile. Socrates said, “To know that you don’t know is to be wise”. His was an adventurous, fearless spirit! It is one truth that knowledge is never finished because answers inevitably lead to more questions; the pursuit of knowledge is the nature of knowing. Those who adhere to one belief as somehow the only truth confine themselves to one corner of the vast human intellectual heritage available to us. It’s like looking at a painting and focusing on a millimetre square of paint, claiming this to be the truth while missing the rest of the painting.

The value of intellectual exploration has increased for me as my Parkinson’s has made physically exploring the world more difficult. I am grateful to my Parkinson’s for leaving my mental capacity alone. Keeping this capacity engaged and active has prevented me from collapsing in on myself after my diagnosis.

Be fearless, be determined, be open to challenge, be prepared to work to extract knowledge and be curious in your pursuit of new questions!

Parkinson's is as much a mental challenge as a physical one

It is my experience of Parkinson's that the biggest challenge isn't the motor symptoms or depression, it is finding a way to live with the impact of the motor symptoms and depression. There is a difference between a list of symptoms and the experience of having to live with them. On a good day my symptoms are less of a problem because they don't impinge on what I want to do. On a bad day my symptoms are a problem only because they limit what I can do; not because they happen to be there. The crucial thing that needs to be tackled and addressed in advice is the impact the symptoms have on daily life; saying you have rigidity, tremor, slow movement and depression isn't enough.

For example, I was never told that living with Parkinson's is a complex balancing act between being active and taking rests to preserve energy, that it involved knowing when to push boundaries and when to consolidate. No strategies were offered to help me balance my new life or to deal with the mourning process after diagnosis. I had to grope in the dark by trail and error to cobble together a strategy myself. Indeed, I learnt the need to balance my new life because I pushed myself too far and passed out from exhaustion. I understand it is impossible to offer advice on the particulars of every case but there is an issue of making advice so general that it applies to no one.  Of course listing symptoms is important but the practicalities of the impact these symptoms have on daily life should then be addressed. Sufferers should be asked what they found useful and advice should be partly based on that as well as medical opinion. We are a largely untapped resource!

Living with the symptoms (and not necessarily the fact of the symptoms) is the major challenge of having a chronic disease.

Non existent future events

One of the hardest things to resist in Parkinson’s disease is the prognosis, the seemingly inevitable deterioration into dependency. The prognosis is valid as a description of a progressive disease but it does not dictate the future; the rate of change is unknown in each individual.

When predicting the future with a disease it is natural to reach for the worst possible outcome, almost as if by thinking it first you are forearming yourself to gain some sort of control over the situation. But such imagined scenarios are non-existent future events. The future merely consists of more or less inaccurate predictions of events that may never occur. Parkinson’s is hard enough to cope with in the present, never mind adding imagined situations that might not happen. Indeed, predicting positive future events is equally valid as negative ones, but with the advantage of making you feel better in the present.

We should recognise that we live in a series of “nows”, and such insight provides the best opportunity to gain control. The past has gone and the future is currently non-existent. Trying to reach into the past or leap into the future makes the present even more difficult. Living in the present recognises our ability to act and react now to the situation we currently find ourselves in.

The Parkinson Earthquake and Tsunami

When the first dopamine producing nerve cells are lost in the substantia nigra it is the start of a slowly building earthquake. The earthquake occurs in the middle of the ocean so it is not initially detected. However, it does cause waves to emanate one after the other from the earthquake’s epicentre; first small waves are produced that gradually increase in size as the earthquake intensifies; eventually tsunami-sized waves are generated. It could take years for these waves to hit the shore and the earthquake to be noticed.

As the first small waves arrive at the coast, Parkinson symptoms begin to flood the land. More waves follow, causing larger parts of the land to become flooded. Once the symptoms are recognised as Parkinson’s and treatment started, costal defences are built to prevent further flooding. As bigger waves come ashore these defences are breached, requiring bigger barriers to be built further in land. Thus begins the fight to keep the flood in check as bigger waves hit the land.

There is an obvious need to prevent the earthquake from happening or to at least minimise its effect. Failing that, better coastal defences should be designed and built to preserve as much of the land as possible.

This essay was inspired by Nicola.

Problems are pebbles

When you are faced with a problem it can feel overwhelming; as if it were a vast, snow capped mountain that you have to climb. However, all problems can be broken down into their component parts: a problem is a pile of pebbles. Picking up each pebble and dealing with it in turn is easier than trying to pick up a mountain.