1. Somebody I know - The problems of stammering

The Problem - How can I possibly pull two mountains together?

My mind is a fluent, non-stammering mind. My voice is a stammering voice. When I think I do not stammer. It is only when I attempt to verbalise my thoughts does the stammer intrude.

In the past I saw myself as separated from myself; one part of me, my mind, was standing on top of a mountain surrounded by a thick covering of cloud, invisible to all but myself. The other part of me, my voice, bathed in horrible sunshine, was standing on top of another mountain miles away from the first mountain.

My mind in fluent despair saw the ideas I carefully constructed and sent to the other mountain become shredded and degraded by my stammer; each idea my mind sent across lost its essence and fell away. As a result I did not recognise my external voice as a valid representation of my mind, the distance between the mountains was too great. Therefore, I was split in two. I was fluent and I stammered at the same time. I was confused. Terribly, destructively confused. How can I have two separate voices at the same time?

I lost myself in the gap between the mountains. This led to a very painful circular argument; my fluent internal voice undermined my external stammering voice and my external stammering voice undermined my internal fluent voice. So, whenever I tried to locate my identity either internally or externally it was undermined by the other contradictory voice. I ended up being nowhere. I couldn’t form a stable identity as I oscillated between my separate voices. It was very disorientating and very painful.

Because the emotional response I had to my stammer was so much more intense than my reaction to my internal voice I kept reacting to my stammer and eventually all I heard was the explosions of stammering blocks. I pushed myself towards the inside edge of my face and I existed very near the surface of my speech. I lost my inner identity and literally became my speech problem. All I heard of myself was my stammer.

My stammer had other consequences too. I felt that it was seemingly beyond the control of my mind (I never knew when I would step on a stammering landmine or how to bandage the wound when I did) and therefore every time I stammered it dismantled the value of my intelligence and my mind. I also felt alone in my head because I perceived that nothing of me (e.g. my thoughts, my consciousness) was getting through my stammer. I felt cut off and isolated; only my stammer was being seen and heard. Even when I was talking (no, stammering) with someone I felt isolated. Therefore, my “natural” state was to be alone with my thoughts.

Allied to thoughts of isolation was the fact I blamed myself for my stammer; it seemed logical to me that whatever came out of my mouth belonged to me. If I insult you then I would have to take responsibility for engaging and moving my mouth to form the insulting words. It was also my mouth that formed the stammer. Therefore, I was responsible for my stammer. If I was to blame I must truly hate myself to inflict such pain on myself. I concluded I deserved the punishment of loneliness for being unable to conquer my stammer. Why would anybody want somebody like me who was incapable of saying mere words (any infant spoke better than me)? I perceived myself as simply not being good enough to overcome my stammer. I couldn’t be me; instead I was something (my stammer) that I hated. Why would anybody want me if I didn’t want me?

Please read part 2 and 3...

2. Somebody I know - The turning point?

For all my life I have felt great comfort being with my family and I was given the freedom to explore and develop my own interests. It was through this freedom and these interests that I found ways to express myself outside of my stammer (e.g. as I was growing up school work became my means to express my mind). In particular, Science gave me a way to understand the confusing world around me. Importantly it gave me answers to where I had come from and who I am. Also, Shakespeare, in his astonishing use of language to verbalise the inner emotions of his characters, taught me that words and voices could contain the ideas of the mind. Maybe, just maybe this applied to me; the gap between the mountains perhaps wasn’t that great.

Then after I completed my Masters course I had a nervous breakdown. It simply emptied me out; like a water balloon thrown against a wall, I burst and leaked depression everywhere. It took me two years to patch the balloon together and only after this time did I dare to fill it with emotion again. I learnt to never fill it to bursting again.

In many ways going through a breakdown teaches you the depth of your determination and fortitude; choosing to move through the howling storm of depression and finally to emerge from the other side wipes the blackboard clean but still with the former words faintly visible. The depression is still there but it is less intense; you can write over the faint words with new understanding while always referring to what you have been through.

Please read part 1 and 3...

3. Somebody I know - learning to live alongside difficulties

Possible steps to a solution

One of the main lessons I learnt from my breakdown was acceptance of the many challenges of my life. If I could meet the challenge of severe depression then I can overcome anything! So, I decided to take on the challenge of scientific research, which was something I had wanted to do and a goal that had survived my breakdown. I applied for research assistant jobs and to my surprise I was offered one in Oxford. I did say I liked challenges! I moved to Oxford on my own and I was successful as a research assistant. I gained a huge amount of confidence. After 3 years I was offered the chance to do a doctorate (DPhil) at Oxford University. Of course I said yes! I like a challenge!

During this time I attended a speech course with speech therapist Dr David Ward. He taught me a technique called “the slide”. I have difficulty moving from the first sound of a word (e.g. “f” in forty) to the vowel sound (e.g. “f” to the “o” sound in forty). I would say the “f” sound but get stuck in the transition to the “o” (e.g. “fffffffffff…ffffffffff…”). The slide is designed to ease the transition (e.g. “fooooooorty”). In essence it is deliberately stammering but in a controlled manner. When I used it I could get past the block and link up with the rest of the sentence I had in my mind. Then it hit me like a cold shower that becomes warm: for the first time in my life I could hear my voice!!! I could recognise my mind within my voice! I could be me! This had a profound impact. The explosion of stammering blocks no longer deafened me to myself. When I stammer now I have a better perception of the fluent parts of my speech. I can hear me and not just the stammer.

During my DPhil I felt the pressure and expectation and worked very hard on my project and as a result fell into depression again. I went to the University counselling service where I met a brilliant therapist, Ruth, who introduced me to Cognitive Behavioural Therapy (CBT) and the philosopher Martin Heidegger and his book “Being and Time”. In particular, Heidegger’s idea of thrownness: we are thrown into the world in a particular state but we are not to blame for this state; we did not choose whether we are male or female, have two eyes or have a stammer… Hang on, did you say I’m not to blame for my stammer?! It was a revelation! I wasn’t to blame for my stammer! This had a huge impact!

Another idea of Heidegger that complemented this was his notion that the process of being thrown into the world had a special type of momentum. Although our specific thrownness is fixed we have the potential to use the “tools” of thrownness (the structure and varied function of our body) to do a huge array of things; and we can choose how to use the tools. We live in a world where there is always something left to do.

I then read Kant’s “Critique of Pure Reason”. In it Kant develops the idea that how we view the world determines what we see. We impose a structure onto the world in the way we think about the world. This gives us great power in determining the meaning of our world.

I could bring these various strands together to weave self-compassion and acceptance into my life. I could hear my voice, I wasn’t to blame for my stammer, I always had something left to do in my life and I could interpret the world how I wished. This led me to conclude that I could be my voice, there was no reason to hate myself for something I wasn’t to blame for and there was no need to be dragged around by my stammer or depression anymore; I could take control in how I reacted to difficulties.

The two mountains have been brought closer together.

Parkinson’s disease

During the last two years of my DPhil I was unknowingly suffering the onset of Parkinson’s disease. Again, through determination and fortitude (and the invaluable support of my family) I managed to finish my DPhil despite suffering from Parkinson’s (not many people who graduate from Oxford can say that!). When the Parkinson’s diagnosis came I was grateful to my stammer and depression for teaching me how to cope with a chronic, incurable disease; unknown to me, I had been in training all my life! Thanks to my equally brilliant current therapist Angela I also found space for me within Parkinson’s like I found space within my stammer and depression.

I now see the immense value of the process of life. It isn’t about the goals we have set ourselves: it’s about how we live our life. Achieving something teaches me what I already know already; the process teaches me what I didn't know. This is possible because there is always something left to do in this life...


Please read part 1 and 2...

Overexposure

When you take a photograph you have to allow enough light to hit the film or sensor in the camera to form a correctly exposed image. However, photos can be underexposed, which means not enough light has been collected, resulting in photos that fail to show any details; or they can be overexposed, too much light has swamped the film or sensor and bleached out the details. It is like when you quickly glance at something and only take in the outline and miss the details or you stare at one thing for ages and fail to notice anything else.

When thinking about Parkinson’s (and any disease or disability) you need to take a correctly exposed photograph of it. By ignoring it you aren’t taking in enough light to understand it and deal with it. On the other hand, by focusing on it to the exclusion of everything else you are collecting too much light and overexposing its effect. It’s a difficult balance but as with taking photos finding the right exposure (experiment with emotionally unfolding yourself and risk pushing your boundaries outside of the disease) will allow you to deal with Parkinson's in a more even way.

"We would rather believe in nothingness than not believe..."

Nietzsche, “On the Genealogy of Morality”

We are fundamentally set up to know things. We have five main senses that constantly capture snapshots of the world and the billions of nerve cells in our heads are there to interpret, edit and create a seamless experience based on these sensations. Every waking moment is spent experiencing the world and ourselves; we incessantly gather information and try to make a coherent picture out of everything we experience. We must know.

However, there are limits to our knowing; the way we sense and build a world is limited (e.g. we only see the world in colour), we have an imperfect point of view (we can never experience perfection since a perfect view point requires us to experience another person's point of view, which is impossible), we are limited to experiencing the present and only know the past (the future is more or less inaccurate predictions). Therefore, when there is a barrier to understanding, instead of accepting that we may never know and living with the uncertainty, we try to fill the void with such spurious notions as God, the "afterlife", contacting the dead, assigning causes to unrelated effects (e.g. I am to blame for my Parkinson's), seeking to control things outside of our influence (e.g. praying).

We are not scared of the unknown; we are terrified of not knowing. We simply must know, even if it is knowing nothingness (or things we cannot experience such as the perfection of God). This impulse to know at all costs can make us vulnerable; the nothingness we believe often has conditions that must be fulfilled (e.g. we must believe in God otherwise we go to hell; but two nothings do not make a something!); nothingness, being nothing, must justify itself.

We should live with the uncertainty of not knowing, but instead we cram our lives full of spurious, unverified “knowledge” outside of experience; we replace the lack of certainty with the certainty of nothing…

When do we become who we are?

“Yes, once I was a hero but
The bombs began to fall…

"Posthumous Autobiography" by Vernon Scannell (Collected Poems; Faber and Faber)

At what point in our lives do we become ourselves? When are we the hero and when the villain? Scannell, in his wonderfully ambiguous poem (a poem that refuses to offer an easy answer), suggests to me that we can claim we are all “heroes” through our imagination and by our inaction. However, by doing something we risk and are then stripped of our ideal; the world intervenes to render us vulnerable, confused and scarred by life. We reach out, in vain, for some comfort in the hero we thought we were but we see we are in a muddled, random and painful world (when “the bombs began to fall”).

However, when we do engage with the world there is a possibility,

“when the storm enraged the grunting sea
into a foaming epileptic fit,"

that we find ourselves in our reactions and the process of replacing

“the captain on the howling bridge,
staring the tumult out”

and riding “safely home”. But not as a hero, as ourselves. We are our reaction to what knocks us down in life; we are the ones who find joy in the gaps between the falling bombs; we are the person who picks themselves up and stares out the world again; we are the resolve we show and the determination we have in seeing there is always something left to do in this life. There is immense value in the process of doing just one more thing. When we stop doing this, we can then say,

“once I was alive…”

When do we become who we are? We are ourselves at every step of the process of life.

Losing what you never had

There was once a calmness in my body, a stillness I didn’t even realise was there; I saw through it like it was a transparent plastic sheet wrapped around me. That is what Parkinson’s takes away. It rips that sheet from you and exposes you to the awareness of what can be lost only after you have lost it.

Parkinson’s compels you to mourn something you didn’t know you had. You can’t hold it one last time and say goodbye; it’s like your wife divorcing you when you didn’t even realise you were married. Mourning such a loss can feel very strange!

Switching on a light to solve the puzzle - finding a Parkinson's cure PART 2

...To cells...

Understanding the symptoms and progression of Parkinson's in patients is vital. However, it can only hint at the cause at the level of cells and genes. Work has to be done at the molecular and cellular levels to work out why nerve cells are dieing and therefore what can be done to counteract this. This would form the basis of a cure.

To work on nerve cells affected by Parkinson’s in the lab requires the development of reliable cells. Amazingly, human cells can be grown outside the body in single layers on the bottom of a petri dish. Even more amazing, skin cells can be grown and then converted into nerve cells that produce dopamine. Dr Elizabeth Hartfield has successfully produced and tested nerve cells grown from Parkinson’s patient skin cells. The nerve cells are equivalent to those cells that die in Parkinson’s. This is a very impressive feat and forms an invaluable resource to understand the proteins and processes inside cells that go wrong in Parkinson’s. Studies are underway investigating alpha synuclein and mitochondria (the energy factories of the cell), both implicated as causes of nerve cell death.

As with each torch that researchers use they have advantages and disadvantages; cells grown in layers are in two dimensions whereas the nerve cells in my brain make connections in three dimensions. This connectivity likely has important consequences for how nerve cells pass messages to each other.

...To the brain...

This is where another torch comes in: studying the next level of complexity in the brain relevant to Parkinson’s, the basal ganglia. Nerve cells in the substantia nigra send out long projections from their cell surface (called axons) to activate (via dopamine) another region in the basal ganglia called the striatum. This structure is important in initiating movement. In Parkinson’s sufferers there isn’t enough dopamine to activate the striatum resulting in movement problems.

Dr Stephanie Cragg presented fascinating data showing that there is more than one route taken by substantia nigra axons to activate the striatum. After a nerve cell is stimulated by an electrical impulse, dopamine is released from the end of the axon and receptors on nerve cells that make up the striatum grab hold of dopamine. As a result an electric impulse is generated in these initial striatum nerve cells, which is subsequently passed to other nerve cells in the striatum and beyond. Dr Cragg’s team has identified new receptors on striatum nerve cells that form an access point to the alternative route. It is hoped that this newly discovered route can be used to get more dopamine to the striatum to restore movement in Parkinson’s sufferers.

...To animal models...

Again, this torch has a disadvantage; the necessary focus on the striatum misses the affect on other parts of the brain and ultimately on movement and behaviour. Luckily, the link between what happens in the brain and its affect on complex movement can be addressed in model organisms such as mouse. Dr Richard Wade-Martins demonstrated that a human gene (e.g. alpha synuclein) can be inserted into mouse DNA and the resulting mouse will express the human gene. If the gene is faulty it will form the classical movement problems of Parkinson’s. Amazing! This allows researchers to follow what is happening in substantia nigra nerve cells and the affect this has on the movement of the mouse.

Animal models of Parkinson’s form a crucial stepping stone between understanding what’s happening in Parkinson’s affected cells and the movement symptoms in Parkinson’s sufferers like me. Work in animals like mice link the other three torches to make a powerful collective beam of light.

...To patients again...

Of course, humans are not big mice so any understanding extracted from the mouse will have to be tested in humans before the puzzle is solved and a cure given.

The road to a cure is long and complicated. But each piece that is added to the Parkinson's jigsaw by researchers like those at the OPDC, the closer a cure will become.

Please support research and Dave the worm! http://www.davetheworm.org/

OPDC http://opdc.medsci.ox.ac.uk/

Switching on a light to solve the puzzle - finding a Parkinson's cure PART 1

Imagine you are in a windowless room that is plunged in darkness and the task facing you is to complete a giant jigsaw puzzle; the puzzle, once completed, will form a cure for Parkinson's. It's a fiendish puzzle too because not all the pieces will fit and the final picture will change as you put pieces together. It is highly unlikely you will finish it by groping in the dark and randomly putting the jigsaw together; indeed you won't even know when you have finished if you can't see the pieces!

Luckily we humans have the scientific method that provides the batteries to power four different torches to illuminate the different pieces of the puzzle. There's a torch to see inside nerve cells, another to see what's happening in the brain, one to look in model organisms such as mouse and finally one to look in human patients.

All four torches must be brought together if there is any hope of solving the puzzle.

The Oxford Parkinson's Disease Centre (OPDC) at the University of Oxford recognises the value of this multi-torch approach. The OPDC brings together Consultant Neurologists, mouse geneticists, biologists who are experts in how the basal ganglia works (the part of the brain affected in Parkinson's) and cell biologists to ensure the flow of knowledge from genes to nerve cell to brain to patient is as complete as possible; the intensity of light from four torches is higher than any one torch alone.

From patients...

The first piece of the puzzle that needs to be laid down is an accurate definition of Parkinson's disease. This provides the necessary context for all research and frames the target that a cure needs to aim for. Such a comprehensive definition will also help to identify individuals with Parkinson's before the emergence of symptoms (someone diagnosed today has already lost about 70% of dopamine producing nerve cells in the sustantia nigra). Dr Michelle Hu, a Consultant Neurologist, is leading a major effort to recruit 1000 Parkinson's patients in the Thames valley area (and subjecting them to a wide range of movement, behavioural and cognitive tests) to understand the disease in greater detail. It is hoped that the data generated can also address a crucial question: are the many and highly variable symptoms currently grouped together as Parkinson's disease in fact several diseases? This could prove vital to work out if there is more than one jigsaw puzzle to solve.

A related aim of the study is to find so called biomarkers (i.e. signs of the disease expressed by the body possibly up to 15 years before symptoms emerge). Currently there is no presymptom or diagnostic test for Parkinson's. Dr Hu presented two promising approaches; preliminary data shows that cells in the gut in some Parkinson's sufferers have the same accumulation of protein (called alpha synuclein) that is seen in nerve cells that die in the brain of sufferers. Gut cells are easier to analyse and if the accumulated protein is present in the gut it is likely to also be in the brain where it will eventually cause Parkinson's. Therefore, identifying diseased gut cells before movement symptoms occur will enable earlier intervention to improve quality of life.

A less invasive and potential large scale approach could be to record a person's voice online or over the telephone and a computer program would look for any early signs of tremor in the vocal cords. This could revolutionise and simplify diagnosis.

SEE PART 2 TOMORROW!

Please support research and Dave the worm! http://www.davetheworm.org/

OPDC http://opdc.medsci.ox.ac.uk/

I remain intact

I'm surprised at myself but it's also a feeling of liberation. I'm starting to not care about my stammer. I've travelled so far with the burden of trying to climb outside of my thrownness and be a fluent speaker; I tried to escape from my own skin; I was terrified of the means by which I talked and neglected to appreciate the process of formulating a thought and being me. I cared about my stammer and I forgot to care about me.

Now I realise no matter how well or badly I express my thoughts, their value remains intact. As I stammer my value is preserved. I'm not located in my listeners comprehension of me; I am located right here in my thought and in the openness I show. Can you see me? Do you approve of me? I am beginning not to care about such things.

If I want to focus on my stammer and miss the rest of me that's a choice I can make but in no way does my own choice diminish me. I persist.

If you want to focus on my stammer and miss the rest of me that's a choice you can make but in no way does your choice diminish me. I persist.

This can lead me to loneliness or togetherness, happiness or sadness, contentment or agitation; wherever it takes me I realise now that my stammer does not dismantle me. I remain intact...

A sense of duty – should I take part in clinical trials?

Recent reports of possible advances in Parkinson’s treatment have brought to mind the importance of clinical trials as a means to scientifically test the benefit and risks of such treatment. Inevitably clinical trials need sufferers to take part, which has posted through my door a big moral dilemma: is my sense of duty towards the Parkinson’s community who will potentially benefit most from new treatments or towards myself as the preserver of my health? I do see that I might benefit from being in the clinical trial (assuming I’m not on the placebo) or from a positive outcome of the trial (assuming there is one) but the main issue for me is the safety of clinical trials.

Potential new treatments are experimental, that’s why they need to go through clinical trials, so therefore they carry a greater risk of the unknown; of course any treatment (but in particular drug treatment) has gone through extensive testing before it is accepted for use in humans. But the unknown risk is a stumbling block for me. I am a scientist you see (I have a DPhil in Genetics) and I simply cannot go into something without looking at the current state of knowledge in the scientific literature. I am lucky in that I have acquired the skills to understand the science and I know (because I’ve done it) that research also deals largely with unknowns. Again, I hear the objection, “if you don’t take part in clinical trials we will never know”.

For me it comes down to this: with the current state of my Parkinson’s being fairly tolerant of periods of good movement I have too much to lose if something went wrong and it is my sense of duty to myself to preserve my health for as long as possible that stops me from signing up. I imagine in the future when the extent of my decline shifts the emphasis to “I’ve got nothing left to lose” it will break down the barriers and I will be game for anything; inject me, probe me, scan me, break me, mend me! But, for now, I don’t want to risk the life I have at the moment; I want to enjoy it while it lasts. Is this selfish? Maybe. Understandable?

Complete works

Imagine it is the first day at school and at the very first registration we are handed a book. The book is entitled “Complete Works” and contains everything we will do and all our achievements in life, every word we will ever write, from shopping list to school essays, every exam we ever take, every picture we draw, every photo we take, perhaps even a book we will write or songs we compose. It is all laid out for us; the journey we take in life; all achievements achieved; this is what we are and will be; a journey already travelled for us.

Also, imagine we had no free will and we had to follow the path as dictated by our “Complete Works”. Would it be a fulfilling journey? Would it be a journey at all?

I am coming to the realisation that our goals in life have less value than the journey that gets us there. The journey we embark on, the failures, the happiness, the difficulty, the contentment, the pain, the love, the diseases and our health share equal credit for moulding the person we are. Take away the journey; be given our “Complete Works” before we start and the achievement becomes nothing: we are not given a chance to learn and become. That’s the true value of the journey; we can make mistakes, learn our lessons and choose what to do next.

Achieving our goals teaches us what we already know. The journey, however, teaches us what we do not know…

The perfect beach ball

It sometimes feels like our task in life is to blow up the perfect beach ball. We are constantly bombarded with images of the perfectly rounded life, a saintly life, a celebrity life, a corporate brand life, a supermodel life, a perfect body life, an eternal life, a perfectly healthy and happy life. When we try to inflate our lives and compare it to such perfection it is inevitable we will feel disappointed. But that’s the point of these empty projections of the perfect beach ball; they make you feel inadequate so you compensate by subscribing to their belief or buying their product. It’s as if someone is punching you in the face and saying, “follow me, I know how to stop the punches…” and you follow!

All lives are messy, half inflated, punctured and repaired beach balls. There is no such thing as perfect; it is a fallacy of reason: to know perfection is to view a perfect thing perfectly but we have a limited point of view (our point of view).

We should never take our beach ball for granted, we should bounce, treasure and enjoy it now (with repair kit in hand!) because something like Parkinson’s will come along and try to spoil the fun…

Parkinson’s cold calls

“Brrrrrrring, BRRRRrring…BRRRRRRING, BRRRRRRING…”

The telephone is ringing. Your Mind shouts out in frustration “I’m trying to have my dinner!” Your body gets up to answer it, “Oh, its Parkinson’s yet again…yes…a tremor on the way…does it have to be now?…ok I’ll tell Mind…”

Living with the daily challenges of Parkinson’s is like overhearing your body talking to Parkinson’s on the telephone but you only hear your body's

side of the conversation. You try to extrapolate what Parkinson’s is saying through the reaction of your body and how it negotiates with Parkinson’s. Sometimes your body is reverential to what is demanded of it and surrenders to the symptoms. Other times it is defiant. As you overhear this it is your job to persuade yourself that the edicts of Parkinson’s are not set in stone; your body has to listen to them but your mind can interpret what they mean, mould them like clay into any shape you like. Once this is acknowledged you can then tell your body what you want it to do. Again, sometimes it is reverential and other times it is defiant. But, at least you are influencing your body again.

A familiar stranger in a strangely familiar land

It's a strange feeling to go back to where you used to live (especially your childhood home); you feel like a stranger in a familiar place, as if the place itself has moved on while somehow staying the same. But, of course, those surroundings haven’t changed, you are the one who has moved on and helped to redefine yourself; those old surroundings define who you were in the past.

It is even weirder to feel like you haven’t changed but your body has moved on without you. That's what Parkinson's has done to me; I'm a stranger in my own body. I have been trying to become acquainted with my new surroundings and crucially reacquainted with myself but my body looks at me suspiciously and I plead with it to give me back my identity.

My body, in particular the conscious control I have over it, forms the fundamental basis of who I am; when that control starts to go, I start to go and I end up perpetually running after myself in surroundings I don’t recognise. That's what Parkinson's feels like to me...

Diplomatic immunity

Sometimes its great being an adult; true, you have to be responsible, look after yourself and a significant other, be a good member of society, get married, deal with diseases such as Parkinson’s, look after children, work in a job you don’t enjoy… But sometimes its worthwhile going through those teenage years: Exhibit A, you ask?

I’ve just made three banana and chocolate chip American pancakes, smothered them in Cadbury’s chocolate Philadelphia spread and placed a scoop of double chocolate ice cream on top…and had them for my dinner. That’s right, a dessert instead of a main savoury meal. Every kids dream dinner! And I have diplomatic Adult immunity from prosecution; nobody can tell me off for stuffing my face with such sweet deliciousness!

This is the pivot that my Parkinson’s attacks so effectively. It takes away my ability to do spontaneous things like having sweet instead of savoury or jumping in a car and travelling to London just because I can. It doesn’t take away the idea or impulse to do these things but devastatingly will eventually simply remove the link between my conscious will and my ability to accomplish such things; my pancake making days will be over. This is the cruelty of Parkinson’s; you gradually give up the privileges of being a functioning adult and you have to hand back your diplomatic Adult immunity.

There is a problem I suppose with being an adult; eating all that food has given me a belly ache and when I say, “My tummy hurts,” no one is going to listen to me! Sometimes its rubbish being an adult!

"All was as cold as any stone..."

I used to think of myself as the surface of a block of marble: as if I was dragged towards the outside limit of myself and became my surface by the opinion of others. I was mistaken. I am also the figure within the marble but I am free to be in any part of my interior. I see this thanks to the presence of Parkinson’s in my life. It has chipped away at the exterior of the marble and revealed parts of me I never knew existed (e.g. courage, even greater stubbornness and a fighting spirit). As in sculpture, taking away something can also be a means to add something.

The tragedy of Parkinson’s is it doesn’t stop chipping the marble away…

It neither proves nor disproves my worth

I sat down and turned to face the interview panel. I was nervous, my palms were sweaty and there was a knot in my stomach.

"Ok, Jonathan, tell us a little about yourself..."

Deep breath, "well..." Before I could finish Parkinson's, who had sneaked into the interview room behind me, screamed at the top of his lungs and then ran up to each interviewer in turn and slapped them hard in face. Tables were overturned and coffee cups were thrown on the floor. Before sitting down next to me Parkinson's shamelessly defecated on the floor.

I continued, "Whatever I say you are going to judge me how you wish. You are going to selectively listen to me and try to make me into the person you want me to be. Of course I don’t know what you want so I’m not going to play that game anymore. I’m just going to be me. Whether Parkinson’s defecates on your nice clean floor or not…"

“Whatever Parkinson's does, it neither proves nor disproves the value I or anybody else can see in me. Parkinson’s is part of me for sure but I am bigger than its influence. Other people can choose to see only the symptoms, they make Parkinson’s noticeable…”

Row of black eyes

“I feel ill, I’m going back to bed.” I drag myself to my bedroom and upon opening the door I see a huge spider scuttling around on my bed. It must be a metre wide. The spider hears me, stops its scuttling and turns to face me. It’s row of black eyes look at me intently and as it nervously moves its legs says: “Sorry, there’s no respite for you, nowhere for you to go to get away from Parkinson’s. I am always going to be there, crawling over your body and through your mind, spinning my sticky, silken webs to ensnare you.”

I turn away and leave the bedroom but I hear behind me the scuttling of legs and then the feeling of those legs on my back. I momentarily stop walking. “Hello again…” I continue on my way…

To one side

I feel like a little corner of my world has unfolded like a tiny flower: when I think about Parkinson's I no longer get the overwhelming, anxious, despairing feeling that it will always be my dreaded companion and will eventually rob me of myself. Feelings can be changed by thought and I am free to think whatever I will about Parkinson’s.

It might be the stage I'm at in coming to terms with my diagnosis or the effectiveness of the medication but I no longer hold Parkinson's preciously, constantly in both hands; I can occasionally put it to one side, maybe for a few minutes. How will I best use this opportunity?

I finally see space beyond Parkinson’s that can be shaped and occupied by me. I want to use the tiny flower in my landscape to generate pollen that will help grow other tiny flowers in the lives of other sufferers. I want this opening up of understanding to be the legacy of my Parkinson’s. It is an expression beyond the confines of my disease and comes from the very heart of me. I want to write a book, a chronicle, of my journey to this point…

The tragedy of self awareness

Othello foresees the consequences of Iago’s poisonous uncoupling of his jealously, he recognises that if his love for Desdemona is proven to be cheap and empty, “Chaos is come again”. When Othello’s jealousy develops into a murderous hurricane this awareness is subsumed by the chaos; only to re-emerge at the instant before he murders his innocent wife; he catches sight of himself but realises he has travelled too far into the chaos that he and Desdemona cannot escape its consequences, “It is too late”. Once Desdemona is dead and Iago’s deception is made clear, Othello’s awareness of the horror of what he has done consumes him. Iago remains silent about his reasons for his deception, despite being the very vocal manipulator of the play’s action (Iago is almost the writer of the play, not Shakespeare) because they were expressed in Othello’s jealousy.

Othello’s tragedy is his awareness of the chaos within him and his inability to contain it. Without self awareness, Shakespeare’s greatest tragic characters (Hamlet, King Lear, Othello, Macbeth) would not carry the tragedy with them.

Like Othello’s awareness of the coming chaos within him, my tragedy is the awareness of the approaching chaos of later stage Parkinson’s disease. Desdemona is the future and Iago is the prognosis of Parkinson’s; he whispers in my ear that Desdemona is corrupted, that she loves not me and has escaped me to lie with Parkinson’s. Iago unleashes my jealously that Parkinson’s has stolen my future. It is my awareness of this corrupted future that is my chaos…

The triumph of self awareness

But it is not too late for me. I am not subsumed by the chaos as Othello is. I retain the ability to be in the audience of my own thoughts, which provides a distance and a counterbalance to my approaching chaos (Othello needs to recapture this but gives Iago, the very poison, his place in the audience of his thoughts). Awareness is both a tragedy and a triumph; it informs you of the chaos of approaching danger but also gives you the opportunity to deal with that danger. I am trying to be alongside the perception of a corrupted future and with this awareness purify and recapture my present…

"A spoon full of sugar makes the medicine go down...": taking the time to listen to you

A crucial aspect of my treatment for Parkinson’s disease has been a medical professional (whether my Consultant, Parkinson’s Nurse, Occupational therapist, Physiotherapist or GP) sitting down and taking the time to listen to me and help me explore my disease.

Obviously, I haven’t had Parkinson’s before so getting the opinion, the undivided attention, of an experienced professional has been psychologically of great comfort. I have felt I wasn’t alone in the daily battle with my disease. Of course my family and friends give me incredible support but it is that detached, objective support that a medical professional gives which is also of benefit.

However, this aspect of my treatment has started to be overlooked. I have been told I can no longer see my Physio and Occupational therapist; it seems I have used up my NHS tokens. I see my Parkinson’s nurse and then my Consultant at 6 monthly intervals (meaning I see each of them at yearly intervals). I can e-mail my Parkinson’s nurse and I appreciate this but her reply is just pixels on a screen. There is nothing like seeing the concern and determination of a person in front of you.

I believe that living with a chronic, incurable progressive disease requires the feeling of not being abandoned by the NHS and the medical profession. Reducing the waiting time between appointments, having regular appointments scheduled (if spaced apart) with a Physio or Occupational therapist, having consultants and Parkinson’s nurses attend more Parkinson’s UK meetings or holding open days at medical or scientific conferences for the general public would engage patients more and help them understand. This is the crucial point – feeling abandoned is being unable to teach yourself about what is happening to you and what you can do about it. Treatment is not only about taking tablets; it is about empowering patients with knowledge so they can be, in the day to day challenge of a disease, something like their own doctor.

“Eyes without a face”

Inspired by the Georges Franju film

Parkinson’s disease stole my identity and took my face from me. To cover up the loss and to prevent anyone seeing the horror of what was left behind I wore a Parkinson’s mask of expressionless white; only my eyes betrayed the grief and loss I felt. Without an identity I could fit into the gaps in the world and I hid myself away. I was then free to rely on others to give me a person to be; my self-worth was tied up with what they thought of me and I would graft their opinion of me onto the mask I wore. I felt satisfied with the role until I met someone else; then I had to graft another face onto mine. In such tiring anonymity I lost myself in my disease.

However, I knew I remained the same beneath the scared muscle and bone of my stolen face. It was curiosity that made me peel off the Parkinson’s mask; curiosity of what was left of me. Standing at a mirror, mask in hand, I looked at my eyes first and saw the spark of me. I dared to move my gaze around the contours of my face and with a rising heart I recognised every part. Parkinson’s had changed me, for sure, but I could still be me and I could see the light and the dark passing through me. I dropped the mask…