Honesty

You mustn't be yourself, they say. You must follow our path, for it is the right one. They lie. You must avoid yourself and consume as we do, for it is good. Hide from yourself and be thankful for the hiding places we provide, they declare. Meaning is meaningful only with us. We will take your responsibility and answer for you, they answer. Emptiness is fullness at our table, they disassembling say...but, I reply, my heart remains hungry for something more.

Verily quoth I, the meaning of the world and those in it is equally unsubstantiated, untestable and meaningless as the perception of it. Authority is inconsequential pageant for, quoth I, all equally afear the dark of an indifferent world and their unjustifiable position in it. They all cry, "what is left?" 

I say unto you, "Honesty".

Take off the masks we wear, take back responsibility, learn to be yourself in all you are, learn to make mistakes because in their meaninglessness we can make of them as we wish. Does the burden of the childhood question "why?" scare you? Good, be scared! They scoff and laugh, "You don't know that?!" I say, "I'm glad I don't know your answer!" To pretend to know is to deceive yourself and close off your nature. Learn to say, "I don't know ". Question everything because there is no absolute reason we can wrap around our curse of consciousness to give us comfort. Your answer and your comfort is equally as made up as mine. We are in this together, not separately.

Question everything! There is no more honest way to be than with "I don't know". Only then can we know ourselves!

What makes the possible actual?

There are endless possibilities but seemingly only one actual world that we can experience. Where are these possibilities if not in the actuality of the world? What makes the possible actual?

It is only with hindsight that we can truly know whether a possibility can be made into an actuality in the world. Therefore, an observer is needed to verify at this moment if a possibility has occurred and become actual. However, human observers are limited in that we think one thought after another and are therefore stuck in the present; the future is unknown to us. We can predict what might happen in the future by assuming what happened in the past will continue to occur in the future. But the further we try to leap from the present the more unlikely we will be able to predict what actually will happen. This is because of the vast number of variables in the world, including the free will of others. If we avoid the present, we are left with only a world of possibilities.

As observers we are the ones who introduce possibility into the world; we create it to enable us to navigate a path through our complicated world. But the world is a series of actualities and takes little notice of our possibilities even when we try to impose our free will onto the world (unexpected things happen and unexpected consequences of our actions can occur). In other words, possibilities are only predictions located in our heads as actual thoughts; the world is not a possibility, it can only be actual. Thought seems to detach us from the immediate sensory input we are receiving and in its place enable us to sense possibilities; we do this by taking all we have learnt, chopping it up into its component parts and being free to glue these parts back together in any configuration. For example, the idea of "seal sister" isn't actual (I don't have a seal for a sister) but its component parts ("seal" and "sister") are things in the world I know about. We become lost in the thick forest of these sorts of possibilities.

We can manipulate the world to make things like computers and phones but we can't change the laws that govern such things; we can only discover them. The discovery can be made actual. Similarly, we can live a life but we can't choose the state in which we exist; it is only a possibility glued together from the component thoughts "we create things", "I was created" therefore "I created + myself". Thoughts only influence other thoughts within ourselves. Thought can influence something outside of yourself if it is translated into action. However, in this translation process the possibility is reduced down to an actuality of the world.

Therefore, living with Parkinson's requires me to focus on the actuality of the disease and not get lost in the possibilities, which are just thoughts with limited influence. Using the actual as the basis of my response I have more chance of successfully changing the context of the disease to cope better with it. For example, I can stubbornly ignore the presence of Parkinson's in my life but this makes the symptoms worse because I am not adapting to them.

One crucial aspect of thought that is supremely beneficial in dealing with difficulty is the privileged access we have to our thoughts. We have the ability to think different thoughts, which can trigger many different trains of thought. For example, when I was diagnosed I could have thought, "My life is over" and closed myself down. Instead, I thought, "There is space for me in my disease", which opened up thought and the world again.

We cannot change the fundamental actuality of the world but we can think and act to achieve a closer, more beneficial relationship with it. 

The richest person in the world

Material wealth is immaterial to the true value of the state of your existence. In a world devoid of internal justice the worth you place on yourself is not determined by how much of the world you own nor is it the power you have over other people. These are fabricated social constructs; diamonds are just another form of carbon, gold is just another metal, political power is illusionary, heaven is just a noble lie to protect the lie of a just world.

According to the World Health Organization (WHO) 57 million people died in 2008. Assuming that figure is typical, it means that today around 160,000 people will die worldwide. The certainty of our own death one day means that we only ever lease our material wealth.

Therefore, what do we truly lose when we die? We lose the ability to do one more thing. No matter if the next thing you do is to buy a diamond ring or buy an onion ring what is valuable is the act of doing. So, when you are opening your gifts today appreciate the contents of the gift and the loving thought behind it; also appreciate the ability to open a gift. Don't take that for granted. Treasure the gift of doing one more thing! It makes you the richest person in the world!

Fade out and Fade in again

It is a particular feature of Parkinson’s disease and the medication (Levadopa) I am taking that my symptoms initially ease when I have a tablet but about three hours later my Parkinson's suddenly comes roaring up to me like a vicious dog. I shrink back from my body as my Parkinson’s, with bared teeth, takes over. I feel as if I fade out into what is called an “off” period: the boost in the levels of dopamine supplied by the medication is used up my body. As a result the levels of dopamine I naturally generate isn’t enough to control my movement and that’s when I freeze up. It's as if I am walking against a very strong wind. I literally have to fight control of my body back from Parkinson’s. When I take a tablet again I slowly fade in and can take relative control of my body again. The strong wind goes away.

The oscillation between “off” periods and “on” periods has become worse in the past few weeks. Before I would go down a gradual decline into an “off” period. Now, at the end of a dose I am literally falling off the cliff of the “on” period into the freezer of an “off” period.

At the moment my life consists of fade out…fade in…fade out…fade in…fade out… Try dancing to that rhythm!

An emotional hand grenade with the pin pulled out

I’ve had to deal with the aftermath of three major emotional explosions in my life. All three involved a period of deep mourning for the loss of who I perceived I was and eventual reconciliation with myself. It turns out the explosions took away a perception I had of myself that wasn’t really part of me; like a sculptor who creates by chipping the marble away.

The first explosion occurred when I was 16 and in the final year of secondary school. I had been going to speech therapy throughout my childhood in the hope I would get rid of my stammer. I had unwavering faith in this. I had to get rid of my stammer so I could cope with being an adult, or so I thought. I constantly asked myself, "How could anyone function as a grown up with a severe stammer?" Also, I heard that it was easier for a child to get rid of their stammer and much harder for an adult. Therefore, I had to catch the last boat to Fluent-ville and I was already running late.

I attended speech therapy as usual one day when my speech therapist handed me an emotional hand grenade with the pin pulled out. She told me "I am going to pass you on to a therapist who deals with adults who stammer".

I thought, "Sorry, what did you just say?" I said, "Sssssssssssssss..." and stammered, both verbally and emotionally.

And that's when the hand grenade went off. I was dragged into adulthood before my time and in the process lost hope and lost my perceived fluent future. I simply wasn't ready to be called an adult nor was I ready for the realization that I would have to live the rest of my life with a stammer. I felt I had failed myself in the worst possible way. I had failed to give myself the means to be myself.

I saw myself as horribly disfigured from that explosion and the ringing in my ears deafened me to my voice for years. It took 12 years of emotional turmoil to come to terms with being an “adult who stammers”.

The second hand grenade I had to deal with was my depression and nervous breakdown. The explosion blow away my flesh so I was just a skeleton; it drove away everything except my bare bones. I had to layer each muscle back onto my skeleton and repair each nerve fibre and tendon. I had to rebuild my emotional wellbeing one cell at a time. It took two years.

The third hand grenade that was handed to me was Parkinson’s disease, “You might have Parkinson’s disease”, my disease said and dangled the pin from the hand grenade in front of me. The wait was agonising to find out whether the hand grenade would explode or not. It eventually did and separated my mind from my body and catapulted me into the clutches of a prognosis which tries to dictate to me, “you will be severely disabled”. I’ve been trying to glue my mind and my body back together ever since.

Ultimately, the three explosions have enabled me to know how determined and resilient I can be in my life. The aftermath has helped me to refine how I see myself and become a lot more realistic about who I am. I’ve learnt to be alongside the problems I have. Each explosion taught me something new and gave me the opportunity to learn and challenge my perception of who I am. I’ve slowly emerged from the marble…

Fragile suspension

After years of driving on rough ground with three heavy passengers riding in the backseat (stammering, depression and Parkinson's) my suspension has started to wear out. Whenever I am in a pressurised situation my problems put on weight and become prominent, causing the weakened suspension to buckle; therefore making the journey more uncomfortable and the car likely to break down.

Recently my speech and depression has suffered with the burden of worsening Parkinson's symptoms. Why does Parkinsons have to attack such a weak spot as my stammer and depression?

I have spent quite a bit of time in the cognitive behavioural therapy garage getting my suspension repaired. I’ve been using the tools I’ve learnt to carry out the repair; the idea of thrownness (I am blameless for my problems but I can do something about them by reacting to them); my future is unwritten; I’m savouring the slice of cake I have (stop asking for the rest of the cake, you have got the whole cake!).

I am sat in the garage taking a break from the repairs, drinking powdery hot chocolate from the drinks machine they always have in the reception. I look towards my body on the car ramp and I think, “We’ve been through a lot together! Hang on in there and I’ll try to repair you to get you going again!”

Where am I?

I get off the train and I don't know where I am. I am nowhere...

I get off the train again but this time I am now here... I am where I've arrived (no matter how I got here) and I am here right now

The suffering of a Parkinson’s sufferer

Parkinson's disease is a slow violation of your life; an inexplicable, unstoppable, defining yet indefinite disintegration of everything you have built in your life. The suffering comes from the awareness of the violation and the lack of power to intervene. It comes from the burden of "should have done more in the past" and what I can't do now and in the future. It is knowing when the violation is over there will be nothing left of me. A life in ruins. 

Yet I can admire a ruined building and what a life leaves behind. That is my aim now: to live a life in the present to the best of my ability and ensure through the process of living something of me remains.

Hold on tight to our Shiny Red Balloon

I

We all tightly grasp,
The string we attach,
To our shiny red balloon

The red skin is stretched,
Over dark flesh and bone,
We are that red balloon

We mustn't let go,
Before we can know,
Whether we will go pop

We keep ourselves close,
For fear of that stop,
But instead we must let go

It is only then,
Can we possibly know,
Of new fields we can sow

II

It is with Parkinson's lead,
That we float to the floor,

But we must trust,
We are more than our rust,

We can only be free,
If we float in the air,

So enjoy the view,
From high in the sky,

Because...

Control melts like purest snow,
When we grasp it so

Resisting fear

One of the hardest things to come to terms with when you are diagnosed with a progressive disease is fear of the future. It can plague your every move and throw you into the future while you miss the present. 

Fear is useful when you are faced with an immediate threat; it focuses your attention and prepares you to fight or flight; it is a mechanism for self preservation. However, with the evolution of self awareness and imagination fear began to turn inward and prepare us physiologically to fight or flight from the idea of fearful things; we react to fearful ideas perpetually because we cannot take flight from the idea of fear (we are tied to our self-awareness of the fear) and fighting it is fighting our self.

Fear doesn't change the nature of the external object we are fearful of; fear is just a thought and thoughts have a limited sphere of influence. This is even more applicable to abstract objects of thought. For example, fear of a Parkinson's future is fear of nothing actual except thought itself since the future is not real yet (and thoughts do not create the future).

A way out of this fear of nothing is to acknowledge thoughts can be replaced by other thoughts; the idea of fear can be challenged by other ideas. We have an extraordinary ability to create thoughts and this gives us immense power in understanding and dealing with the external world and the world of thought. We can carry out a similar analysis to the one I did just now: the idea of fear is fearful about nothing except itself and elicits a perpetual physiological response normally reserved for the instant of being threatened by things in the external world.Thoughts change and with it the idea of fear can change.

We can choose to live in a world of fear, which is really a world in our imagination or use thought to limit fear to the immediate experience of external objects that threaten and resist carrying fear beyond the object to objects of thought.

Opening your Christmas gifts with Parkinson's hands

The excitement bursts all around you like the sun moving from behind a cloud. It is Christmas morning and a pile of presents, wrapped in shiny multicoloured paper, is before you. Santa's been! You kneel down and pick up the first present...but that's when the problems start. Your tremor starts again and it is difficult to move your rigid fingers. You try to hold the present in your left hand and tear at a loose bit of wrapping paper with your right hand but every part of you moves so slowly (except the tremor; such is the dichotomy of Parkinson's!) that you eventually drop the present. "I'll try another one, it might be easier". But the same thing happens; the present, unopened, drops on the floor. As you try to open more gifts the pile of untouched presents diminishes and the attempted but unopened pile of gifts increases.

This isn't just on Christmas morning, it is every morning. Living with a disability is easier if the gifts of life are not gift wrapped (which sometimes removes the excitement of the discovery) but at least life is made user-friendly by adapting the way you live to your difficulties. That doesn't mean becoming your disability and not approaching the gifts of life; it means making the gifts more accessible to you.

Merry Everyday Everyone!

What my depression feels like

My life is like a carefully woven ball of wool. To live my life I use the ball of wool to create all sorts of garments; in the past I’ve made a DPhil jumper and currently I am trying to make a pair of writers trousers. I need the wool in a neat ball so it unwinds without getting tangled, allowing me to live a smooth and contented life.

However, I am currently going through a bout of depression related to my worsening Parkinson's symptoms. The effect of my depression is to unravel the ball of wool so it ends up in a tangled mess on the floor. It is very difficult trying to find the exposed end of the ball of wool to enable me to knit a garment and get through the day; I spend ages untangling the wool before I even pick up my knitting needles.

The longer the wool is left on the floor the quicker it becomes frayed and damaged, making it harder to knit the necessary clothes to function in daily life. Even when I manage to knit a garment it falls apart because of the damaged wool. The unused wool then becomes scattered around my life and my feet get caught in it and I continually trip over.

In the absence of new clothes to replace the old, the clothes I am wearing become faded and drop off me. I am left exposed to the cold winds of the depression storm.

I need to see the ball of wool as unraveled and not accept its tangled state as something normal.  I need to gather together the wool again and make sure it is wound into a neat ball. I need to recognise again the range of garments I can make. I need to be me again...

Losing and gaining hope

Losing hope is caused by not being able to see the possibility of your free will influencing the outcome of an event. In our random, unjust world it is a constant battle (mostly filled in by religion and science) to maintain your hope. All hope is based on the basic premise that one day we will fully understand the world and be able to be the cause of its effect on us. In the absence of hope we sink down to our knees and let the howling winds of the world shake us out of ourselves.

Therefore, we lose the connection between ourselves and the world when we lose hope. Like the arrival of Parkinson’s in your life, you see the future you expected to have being snatched away. How do we gain our hope back?

We do not lose our free will when we lose hope; we lose the perception of what our free will can do. Therefore, even when we lose hope we are free to choose our reaction to the world and in doing so colour the world according to our will. For example, losing hope I will ever share my life with someone because of my Parkinson's causes me to perceive every woman I meet as automatically not interested in me. This causes me to lose even more hope and makes me determined to give up any possibility I have to express my heart. The world continues with its perceived indifference towards me because I don’t engage with it. I need to see the possibility of the world accommodating me and allowing me to express myself within it. If, with renewed hope in the efficacy of my free will, I can create space for me it means I can create space for others to join me.

Reaching out to myself

In an average lifetime, we will take a breath about 588,000,000 times (at rest we breath about 16 times a minute). Obviously breathing is fundamental to life in that it provides oxygen to the body and takes carbon dioxide away. Breathing is also a rhythm of the body we all dance to and which forms a window into the fundamental anatomy and physiology of the body.

Parkinson’s disease is disrupting the conscious control I have over my body (it is as if Parkinson’s has pushed my body ahead of my mind) but it has mercifully left unconscious functions like my breathing intact. Therefore, Parkinson’s has left a gap in which I can assert the feeling of a connection to my body.

I was at yoga today feeling annoyed with my Parkinson’s as I was struggling to get into the poses. I began to ask myself, how can I feel a closer connection to my body no matter how my symptoms fluctuate? I thought of an image of reaching into my body and touching the heart of me; like plunging my hand through a layer of oil to get to the clear water underneath. Then I noticed my breathing; I breathe in, my chest expands, I breathe out, my chest deflates. I focused on this rhythm for a minute or two and then it hit me:

I breathe in, my chest lifts up as if I am reaching out to myself.

I breathe out, my chest contracts as if I am pulling myself closer.

I reach out for myself, I pull myself closer. I reach out for myself, I pull myself closer.

This is a profound realisation. No matter how my symptoms fluctuate or deteriorate I will always be able to reach out to myself and feel a connection through my breathing. And I will be given the opportunity to do this hundreds of millions of times. I can be myself…

Retreat

Imagine Michelangelo’s disappointment if he stood back to admire his David and all the dust and chipped marble that he laboriously removed over months slowly began to reattach to the sculpture. David was gradually becoming covered up and drowned in the discarded marble.

Would Michelangelo give up art if he then saw his Sistine chapel fresco brush stroke by brush stroke go back to an ordinary ceiling?

This is what it feels like to see the gains you have achieved in managing your Parkinson’s symptoms be pushed back. My symptoms have worsened recently and I have retreated from where I was.

But, I won’t give up trying to sculpt or paint my life…

Walking through open doors

Coping means approaching, confronting and moving through the open doors of a disease.

It is very difficult to see beyond the room you occupy with your disease. It can confine you and define what you can do and who you are. It can appear you have no options, nowhere to go and nothing to do except remain where you are.

However, there is always something left to do in this life; there is always at least one door in the room you are in.

If you ignore the door or hesitate on the approach you will be in denial and remain in the dark of the disease. Learning to accept the disease but seeing it as your only possibility means you stop in the doorway without going through. However, accepting it as part of you but not the whole of you means switching on the light in the next room, seeing space in there for you and then moving through the open door.

Unlocking doors

Coping with life is trying to unlock and lock the doors around you. We find ourselves in a world full of choices and there are many doors we can open and close. Each door leads to a room we can inhabit and each room contains doors that lead on to other rooms.

No matter what type of room you find yourself in there's always at least one door waiting for you to unlock and walk through. You also have a choice to lock the door behind you either emotionally or within your memory; indeed you have a choice to keep it open. However, you can never go back to the same room; the context always changes since you were there last. Where do we get the keys to unlock these doors? We are thrown into the world with a specific set of keys but we can learn to adapt and mould keys to fit other locks.

We tend not to notice the doors in the rooms we inhabit, we are creatures of habit and tend to stay emotionally where we are or follow the route we have used before. This is understandable given the multitude of doors available and the incessant choices there are to make. It is this bewildering openness, which can close you down, that makes life so complicated. But this openness gives you the opportunity, when doors are locked due to disease or circumstance, to find alternative routes to live your life.

Now, go and open some doors!

“Jonny in the blind...”

Based on the movie "Gravity"

The majestic earth was spinning on its axis beside me; the sun reflected off the polar ice caps and a storm swirled over the Atlantic ocean. I was in orbit trying to finish work on my doctoral thesis satellite; I was ready to push the satellite into the intellectual firmament when a warning came on the radio. It said, "you might have Parkinson's disease". I scrambled to get back to the life I had known but it was impossible. Then it came, the debris from a Parkinson's diagnosis; it slammed into and destroyed the shuttle that would have taken me back to my former life. I was sent spinning off into space. I felt disorientated, confused and desperately lost; “this is Jonny in the blind, do you copy…?”

The support I received from my family and friends and my doctors give me a jet pack with enough fuel to get to the nearest space station. Once I got there I readied the escape module but another wave of debris hit as my symptoms worsened, damaging the module. There was no other choice but to use the module, I had to reach the next treatment space station and I just made it. Here I am, waiting for the next wave of Parkinson's debris to hit, longing for something to get me back to earth...

Being in love with a Parkinson’s sufferer????

Parkinson’s disease changes you physically; it drives its car in such a way as to continually cut you up on the motorway of your life; it causes traffic jams, accidents and under takes you while you are sat behind the wheel of your car impotent with road rage: “get the f**k out of my way!!”

This must be the same for partners, family and friends who are driving with you; the scream out of their own car windows, “we are trying to get somewhere Parkinson’s, get the f**k out of our way!!”

This is especially true when you are trying to start a relationship (in my case) or maintain a relationship. Your partner (who has potentially known you for years) or potential partner (who has expectations of what they want in a partner) will expect you to drive at a certain speed and with a certain level of skill. As they are wanting to race ahead with you, you are stuck behind the Sunday driver that is Parkinson’s. Eventually you drift apart (or never drift together) and lose sight of each other.

I think we respond to love and being wanted both emotionally and physically; we can normally reciprocate love in the same way. Because Parkinson's undermines us physically and emotionally however and at the same time increases the need to be loved (especially somebody to love our crumbling physical body) it reduces this response and reciprocation to dreadful isolation; the disease stops the normal cycle of being in love: you engage emotionally with someone, they reciprocate, then you engage physically which lays new ground for a deeper emotional connection (in an ideal world). Parkinson's dissolves this possibility both for you and your partner.

Parkinson’s makes you and your (potential) partner drive at different speeds…

Living in an unjust world

“Alone! I’m alone! I’m a lonely, insignificant speck on a has-been planet orbiting a cold, indifferent sun!”

Homer Simpson

It is a comforting fiction that asserts we live in a world with a kindly paternal overseer, like the ultimate alpha male looking after his chimp group. The incidence of natural injustice such as children having Parkinson's disease or a million other examples demonstrates we live in a world without any internal justice. This is why searching for an answer to "why me" questions is so fruitless; there is no entity in the world to provide any answers to these questions.

It may be uncomfortable to acknowledge that we truly are alone in this world but it is a valuable insight into the world. Of course this lays a terrible burden of responsibility on our shoulders; in an indifferent world we have to justify our own actions and define justice and injustice ourselves. For some this is too much to bear and they retreat into the fiction again.

For me, as a Parkinson's sufferer, I prefer the liberation of not trying to understand an entity that isn't there. It dissipates the rage and the self-flagellation. If there is no natural justice then I can understand my disease in any way I wish. I can build my own sense of justice and injustice; I don’t have to subscribe to the paternal overseer story and its contradiction of an all powerful creator who is powerless to stop suffering; of a just creator who is unjust; the ultimate moral good who isn’t morally good. As the German philosopher Immanuel Kant said, we assume the ultimate moral good (i.e. the paternal overseer is our assumption) but we have a choice to question the validity of the assumption; we don’t have to believe in the religious interpretation of where the moral good comes from to be a good person. We can choose to understand the relative nature of morality while still remaining morally good. We can choose the responsibility of being the justification of what is just in our world; we do this anyway when we choose a religious morality.

This choice creates space within the world for me; a chance to exercise my free will and take on the responsibility of choice, which enables me to choose to live alongside my disease.

A sense of justice is not internal to the world; we create it to heat up the cold indifference of the world.

What is beautiful?

Where does our concept of “beauty” come from?

Beauty is aspirational but it is also a mere convention. Who is deemed beautiful and the standard we are measured by is a fabrication designed to make you feel inadequate so you attempt to buy the means to be “beautiful”. Fashion, cosmetics, music stars, film stars, celebrities are based on this. “Beauty” is designed to make you spend money.

It is also based on a ludicrous assumption that we have fallen in love with. Judging somebody suggests that you hold that person responsible; for example, we judge academic or athletic performance because we assume that the person being judged actually did the work. We apply this same logic when we judge whether somebody is “beautiful”; we assume that they are responsible for their facial features and body type. However, our genes determined these characteristics when we were developing in the womb. You did not choose either your genes or these characteristics because you are incapable as you are developing to control the process of your development; control is only possible once you are outside of the womb and the developmental process has come to an end. Therefore, you are not responsible for the state in which you exist in the world, which includes how “beautiful” you are. Indeed, nobody chose your facial features or body type. It follows that when you judge yourself or others to be “beautiful” or “ugly” your judgement doesn’t apply to that person; nobody is responsible. Therefore, the statement “you are ugly” is devoid of meaning and can be shrugged off; it doesn’t apply to me, I’m not responsible; it’s the same as judging me for a murder committed in 1783; in no way can I be responsible. It simply makes no sense. This reasoning also applies to judgements about the colour of your skin or your gender.

We are beautiful for who we are and what we do in this life because these can be our responsibility.

Please, don’t judge somebody solely on whether they are “beautiful” or “ugly” because you are really judging nobody when you do that!

The reasons why

We are obsessed with understanding why things happen; Science tries to find out why the world acts the way it does, it is the basis of religion too. Our curious nature is the wonder of the universe but it is also a terrible burden; it can lead us to seek answers where there are none.

Why do bad things happen in the world? Why do I have Parkinson’s disease? There is no reason. It just is. Our need to answer the question is a need for control in a hostile world. If we can understand why we can prevent it and make the world and ourselves safer. But sometimes the world cannot offer any answers and this leads us into logical despair; we end up praying to God who, as author of the world, is responsible for (or at least neglectful of) the evil in the world. So, we end up replacing “why is there evil in the world” with “why does God allow it” and get absolutely nowhere in answering the why.

Some people blame themselves for being “born into sin”. But such reasoning is a cry of despair. In no way did we choose to be born or choose the way we exist. What have I got to do with what supposedly happened 2000 years ago? That’s not my responsibility; that’s like saying I committed murder ten years before I was born and I should be punished for it.

We should learn to live with uncertainty and not knowing why. It just is. We can learn to do something about it by trying to understanding how the world works but filling our lives trying to understand why is trying to climb through the looking glass; instead we bang our heads and we are left looking at our reflection and wondering, “why am I here?” No reason…

Why does it take 60 years for Parkinson’s symptoms to emerge?

One of the outstanding questions in Parkinson’s research is what enables the nerve cells in the region of the brain affected in Parkinson’s (i.e. substantia nigra) to tolerate the insults of the disease for over 60 years (in late onset Parkinson’s) before symptoms emerge? Conversely, in early onset Parkinson’s (symptoms emerge before 60) why is this tolerance missing?

I listened to a talk given by Prof Ole Isacson (Harvard) at the OPDC where he discussed a fascinating possibility to explain this puzzle. I will try to explain what I understood of his reasoning (the analogy is my way to understand the idea):

Imagine some annoying person is tapping you on the shoulder. Initially it is very gentle so you barely notice it. But the tapping becomes steadily harder and eventually begins to hurt. At a certain point you lose patience, "STOP IT or I'm leaving!"

The thing that annoys cells in your body is highly reactive chemicals called reactive oxidative species, which are by-products of energy production in the cell. These chemicals tap the cell on the shoulder but they are tolerated because the cell normally either neutralises the chemical before cellular damage can occur or repairs the damage (the cell can shrug off the shoulder tapper). However, as the cell ages, natural damage accumulates (repair isn't perfect) and the tolerance of the cell to damage is overwhelmed. Eventually the cell loses patience ("STOP IT or I'm leaving!") and presses the self-destruct button and dies (in a process called apoptosis or programmed cell death).

Now imagine your shoulder has been very active doing exercise and is sore to the touch. But the tapping starts again. Your patience wears very thin a lot quicker this time.

This is what happens in nerve cells that die in Parkinson's: these cells are very active and need lots of energy so they generate lots of reactive chemicals and are prone to more damage; the shoulder is sensitive to even the lightest touch. Add to this the extra reactive chemicals generated as a result of Parkinson's gene mutations and these high energy dopamine nerve cells press the self-destruct button sooner and are preferentially lost.

In other words, the threshold for triggering self-destruction of these cells gradually declines with age, which may exaggerate the affect of Parkinson's associated mutations in later stages of life (initially the Parkinson's affect is small because it is well tolerated but increases as tolerance declines). This provides one possible explanation why in most cases Parkinson's emerges after 60 years of life.

This raises the question, what make cells in early onset Parkinson’s (I was diagnosed age 33) especially intolerant of this natural wear and tear of the cell? What is it about the changes in my DNA that makes cell death occur earlier?

Thinking of new avenues of treatment: how can we boost this tolerance so we can push back onset of symptoms by another 60 years?

Prof Isacson’s idea demonstrates what all good ideas in science do: raise more questions!

Using stem cells to treat Parkinson's

We all start out as the ultimate stem cell; a fertilised egg generated you with all 200 different cell types that make up the human body. This is the definition of what a stem cell is; it has the potential to develop (or differentiate) into different types of cell. The body normally uses stem cells as a special reserve of cells to replenish any differentiated cells that are naturally lost (e.g. replacing blood cells).

Stem cells are directed towards a specific cell type by chemical messengers that give the go ahead for the stem cell to transform its blank canvas into, for example, a nerve cell.

To do this, a stem cell first of all switches off genes that make it a stem cell and activates other sets of genes within itself (e.g. nerve cell genes). Since genes produce proteins, this changes the proteins in the cell (i.e. stem cell proteins are replaced by nerve cell proteins). These new proteins set to work changing the structure and function of the cell so it becomes a specific cell type (e.g. nerve cell).

As the nerve cell is emerging one of the genes that is switched on may contain a Parkinson's related mutation and will therefore produce a faulty protein. This faulty protein will lower the efficiency of the cell either by over activating or inhibiting a specific function. Cells are dynamic entities so will try to compensate and adapt to this inefficiency; they are remarkably successful at this since it typically takes 60 years for Parkinson's to emerge. However, as cells age they accumulate additional wear and tear; this natural slowing down within the context of the Parkinson's mutation will be too much and will trigger the cell to die. As more cells die, less dopamine will be produced and more Parkinson's symptoms will emerge.

This is when science strides into the picture and tries to find ways to restore dopamine levels; there are at least three ways we can do this; stop cells from dying, replace the cells that are lost or replace the dopamine. Science has been moderately successful in replacing dopamine by giving it in tablet form. However, this does nothing to address the underlying cause of Parkinson’s; the loss of nerve cells. Current research is looking towards replacing the A9 substantia nigra nerve cells lost in Parkinson's with equivalent cells grown in the lab from stem cells.

In the future the procedure will probably be something like this: skin cells will be taken from sufferers and these cells will be transformed back into stem cells (called induced pluripotent stem cells) and then driven towards a specific nerve cell type. A9 nerve cells will be selected and the Parkinson's mutations will be corrected by replacing the mutant DNA with normal DNA.

These corrected, induced A9 nerve cells will be transplanted into the substantia nigra of sufferers, where they will connect to other nerve cells in the brain and generate dopamine to restore movement.

A recent paper by Sundberg et al (2013; http://onlinelibrary.wiley.com/doi/10.1002/stem.1415/full) has shown in principle all steps (except replacing mutant DNA) are successful in treating Parkinson's in the rat and transplanted cells survive in primates for at least a year.

The ability to precisely replace DNA is an emerging technology (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2443.2012.01599.x/full). A specific part of DNA, which contains a Parkinson's mutation, is targeted by zinc finger nucleases (ZHF); these are proteins which grab onto specific sequences of DNA and essentially carry a pair of scissors to cut the DNA at this point. Normally the cell glues this cut together again. If two ZHF's are used and they bind a certain distance apart then the intervening bit of DNA (containing the mutation) will be cut out. A new bit of DNA can be introduced into the cell and it can slot into the gap created by the ZHF's and glued in by the cell. Therefore, the normal DNA sequence of a gene is restored. This technology has huge potential in the treatment of all disease.

Exciting prospects are slowly coming into focus!

“I'm going to be severely disabled...”

Parkinson’s is a chronic, incurable, progressive disease. How would you feel if you faced the prospect of severe disability in the future?

Would it scare you? Would it make you sad? Would it make you give up? Or does it make you try to live up to the opportunities life can still give you?

Would you end up obsessed about the future? Would you hesitate and feel an overwhelming burden to achieve everything now while you can? Or does it make you celebrate who you are in this instant?

Would it make you look back and regret the opportunities missed? Would you feel the anxiety of the march from independence to dependency? Or does it make you celebrate what you were able to do in the past and what you are still able to do?

Would you feel isolated at the prospect of being within a body that is unresponsive to you? Or does it make you try to live your life to the best of your ability?

Would you give up hope of finding someone to share your life with? Would you devalue yourself in the face of such a prospect? Or does it make you see yourself as preserved within the disease and still capable of being a loving person?

Would it make you rage against the unfairness of it all? Would it devalue your mind as your body is stolen away? Would it disappoint you that your mind isn't strong enough to overcome Parkinson's? Or does it make you appreciate the power and privilege of thinking as the tool to sculpt Parkinson's into a life with space for you?

Dare to ask yourself these questions and understand what chronic, incurable and progressive means. By the very act of formulating the question, understand the choice you have in such a disease…

Trusting myself

I have lived under the burden of self-doubt all my life. It’s as if I have worn multiple layers of clothes and it has made me feel stiflingly hot and deeply uncomfortable. Try to imagine not hearing your own voice and not identifying with your voice; try to imagine feeling you are not in control of your mind and feeling you are in a constant battle with yourself; imagine not connecting with your body and not feeling in control of it. These are the layers of stammering, depression and Parkinson’s self-doubt I have been consumed by. I reacted to self-doubt by trying to control everything and when I couldn’t control everything in the world I would add more layers of self-doubt clothing.

I have emerged from those layers during the past year: ironically since my diagnosis of Parkinson’s. I have recognised that those self-doubting layers of stammering, depression and Parkinson’s are just a part of my thrownness (or the state in which I exist). I focused on those things to the exclusion of almost everything else. I didn’t notice the person beneath those layers. I neglected myself in the all out warfare of proving myself and filling in the void of self-doubt.

I have emerged battered and bruised and severely dehydrated. I am only now learning to drink the cool, refreshing water of trust. Trusting my breath and my voice; trusting the stability of my emotions and my mind; trusting my mind to connect to my body; trusting the future and my ability to still do things; trusting the value of myself and my ability to be me.

The power of “ahhhhhhh” to diagnose Parkinson’s disease

Currently, there is no diagnostic test for Parkinson’s or an objective measurement of the progression of the disease. These missing pieces of the puzzle are crucial in making it easier to identify those with the disease and it will allow the effectiveness of new medicine to be accurately measured.

Now, imagine if these problems could be tackled and solved in one go. Imagine that the way to do this is through one simple telephone call? This is the exciting prospect currently being developed by Dr Max Little and his team (Parkinson’s Voice Initiative). Parkinson’s disease manifests as a disorder primarily of movement, including rigidity, stiffness and tremor. Evidence suggests that the majority of Parkinson’s sufferers develop rigidity, stiffness and tremor of the vocal cord, thereby effecting speech production. Dr Little has shown that severity and progression of the disease can be traced through the effect on the voice. This has huge potential!

The basis of the test is to record your voice saying “ahhhhhhh" and sophisticated computer analysis is able to differentiate between healthy individuals and Parkinson’s sufferers. In laboratory conditions with good quality recordings the test has an accuracy of 99%. Yes, 99%!

Currently, Dr Little and his team are testing their system on ordinary landlines and mobile networks and the results are pending. If the data shows a comparable accuracy and the confounding factors of taking recordings in the “real world” can be ironed out, this system could be used to test millions of people very cheaply. For example, it is possible that when people reach, say, 55 they could have their voice recorded over the phone to see if they are showing signs of the disease. Intervention could therefore be earlier to preserve motor function and improve quality of life. This could change the process of diagnosing and treating Parkinson’s forever.

If you want to know more or get involved see http://www.parkinsonsvoice.org/

Going for a wander and making up new recipes

I never used to go for a wander around my mind. I used to stop myself because I didn’t trust that there would be anything to find. Sad, isn’t it? It all comes from my old friend stammering; the difference I perceived between the fluent voice in my head and the dysfluent voice I heard when I spoke undermined the value of my thoughts. Because I perceived that the fluency in my head, the very nature of my thinking, was distorted and corrupted by my stammer, I didn’t trust myself to do justice to my thoughts in the expression of them.

I trusted my ability to digest and take on board knowledge, I just didn’t trust myself to carve my own path through that accumulated understanding; I could follow a recipe but I wouldn’t allow myself to make up my own recipe.

That has changed now and it is thanks to Parkinson’s. As my physical ability has suffered it has, in contrast, brought forward the ability of my mind and made me very aware of the value and privilege of having a functioning mind. That sense of value has allowed me to trust my mind. My writing is a testament to the new found joy I have of wandering around my head. Isn’t it brilliant to be able to think and not constantly judge yourself?

When I started to write this post I didn’t know where I would end up; I just had a vague notion of describing wandering around my head. I opened myself up and developed the ideas as they arose in my mind. I was making up the recipe you are reading; for me, the process of coming up with the different steps in the recipe tastes good!

Air Raid Warden

The air raid warning has just gone off: “Yooooooooooooooooou have Paaaaarkinson’s, Yooooooooooooooooou have Paaaaarkinson’s, Yooooooooooooooooou have Paaaaarkinson’s…!”

I quickly grab my tin air raid warden hat and rush outside. It is dark and I can hear the rumble of planes overhead. I hurry up the street, “Cover up your windows with your black out curtains! Happiness, cover that window! Expectation and confidence, you do the same! Do you want to be bombed?”

Suddenly flares of anger light up the sky to reveal the targets below, followed by a swish sound as the bombs are dropped from the Parkinson’s planes. I stop. Silence. Then, a series of huge explosions; expectations of my future is hit first, sending a great fireball into the air. Next is the depression fuel depot, normally well protected, sending depression and grieving petrol everywhere. Then memories are hit, which produces choking, regretful smoke that billows into the street.

An explosion knocks me to the ground. My ears are ringing but I scramble to my feet. “Shelter! Find shelter,” I scream. Emotions rush out of their houses and pass me on the way to the main shelter. I remain behind checking all the houses I can. With bombs falling and fires starting everywhere I eventually make it to the shelter. When I scramble inside, all of my emotions turn to me with scared, pleading eyes. “It’s ok everyone. Just keep calm and the fires will go out.” I smile a convincing smile that isn’t all that convincing.

I move to the kitchen and help the ideas of thrownness, acceptance and self-belief hand out cups of soothing tea to my emotions. As I go round with the tea I ask, “Would you like some biscuits? Take two!” My emotions are calming down.

I finally sit down and take off my tin hat. I wipe the sweat and grime from my forehead. I look around the shelter and see my emotions huddled together, reacting to every bomb that drops. This is what being diagnosed with Parkinson’s disease feels like…

“This was my finest hour!”

Adapted from the words of Winston Churchill.

Parkinson’s disease is “a riddle wrapped in a mystery inside an enigma”. Its affect on me, the way it separates my mind from my body, means “the stations of uncensored expression are closing down; the lights are going out; but there is still time for those to whom freedom…means something, to consult together. Let me, then, speak in truth and earnestness while time remains”.

The Parkinson’s dictatorship forms a “society where I may not speak my mind, where my body denounces” and denies my mind. Parkinson’s can only “go forward; he cannot go back”; he must “blood his hounds” and then both of us will be “devoured by them”.

We must say “No” to this! “There, in one single word, is the resolve which the forces of freedom and progress, of tolerance and good will, should take”. We must “banish from all our lives the fear which already darkens the sunlight”.

“We have before us an ordeal of the most grievous kind. We have before us many long years of toil and struggle”. In response to this “I have nothing to offer but blood, toil, tears and sweat”. So, “whatever the cost may be, we shall fight Parkinson’s on the beaches, we shall fight on the landing grounds, we shall fight in the fields and in the streets, we shall fight in the hills; we shall never surrender!”

“Today I may say aloud before an awe-struck world, 'I am still master of my fate. I am still captain of my soul”. This is thanks to the support of the special “few”; my family and friends; “Never in the field of human conflict was so much owed”.

Parkinson’s has “received back again that measure of fire and steel which it has so often meted out to me. Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning" of coming to terms with this disease.

If I last a thousand years, I will still say, “This was my finest hour!”

Appreciation

If I died tomorrow (fear not dear reader, this writer will be writing the day after tomorrow!) I can say in all truthfulness, “I’ve had a great life”. You may say in disbelief, “But your stammer, depression and your Parkinson’s?! You don’t have children. You’ve never been married. You have been lonely, frustrated, lost!”

These things are true. But they do not dismantle my life. I love and spend time with some extraordinary people. I continue to explore the wonderful complexities of life and my place in this world. I feel privileged to inhabit my mind and to have access to the knowledge, experience and wisdom I have accumulated. I have absorbed some remarkable art, music and ideas; I enjoy the challenge and thrive on provocation and exploring different intellectual landscapes.

It is true that in death all this will fade away. But I can say, “I lived my existence to the best of my ability; I tried…” Thinking about what I will lose when I die makes me think of the extraordinary gifts and opportunities I have at this very moment (despite my problems and difficulties). Because life is robustly fragile we should live at the edge of our present and continue to learn and develop. Looking far into the distant future increases the risk of tripping over something in the present and falling off the edge of life without actually living a life.

Appreciate all that we were thrown into this world with and enjoy the process (and not just the goals) of life.

You are all stars that guide me

I am sailing on the oceans of my life in a little tug boat. Sometimes the sea is rough and the storms are raging. At other times the sea is calm and the sunshine is pleasant. At every moment you are all there as stars shining brightly next to me, illuminating and animating my life; you guide me, one step at a time, as I travel to distant shores. I thank you all for sharing your present with me and for your care...

Digging for a cure at the Oxford Parkinson's Disease Centre (OPDC) - Part 1

How do you find a cure for Parkinson's?

Imagine you travel to a field in the middle of the countryside. You've been told there is something buried in the field; something valuable beyond words, like a cure for Parkinson's. The problem is, you don't know where in the field the cure resides or how deep you will have to dig for it. You also don't know what a cure will look like. You stand in the middle of the field trying to decide where to start. How do you find a cure for Parkinson's?

You gather a team of expert diggers and based on what other researchers have found in nearby fields (and for other diseases) you choose an area in the middle of the field. You start digging and go through several layers of soil. As you dig you analyse the components of the soil for any traces of the cure. That's the difficulty of scientific research; because you are attempting to uncover something hidden from view you only have knowledge from previous layers of soil to go on; you try to make sure as far as you can that the particular part of the field you are currently studying will hold the vital clue to where to dig next, or how far you will have to dig down to get to a cure.

What is the OPDC?

I arrived at a particular part of the Parkinson's research field when I visited the lab of Dr Richard Wade-Martins at the Oxford Parkinson's Disease Centre (OPDC). The OPDC is an interdisciplinary research centre, which means that clinicians (investigating better ways to diagnose and treat Parkinson's), brain scientists (investigating the nerve cell networks that go wrong), cell biologists (investigating what goes wrong in cells) and, linking these approaches together, mouse geneticists (investigating Parkinson's in mice) are under one roof. This ensures the links between human patients and the knowledge generated from cells, nerve cell networks and model organisms is as close as possible. In other words, they are busying digging in multiple parts of the Parkinson's field and increasing the chances of finding that vital clue.

From skin cells to nerve cells - Induced Pluripotent Stem Cells (IPSCs)

Dr Wade-Martin's lab investigates cells and mouse models of Parkinson's. The first part of the field I was shown contained some amazing biology. Researchers in the lab know enough to take skin cells from human patients and convert these into nerve cells, which are the same as those cells that go wrong in Parkinson’s affected brains. I will just let that sink in. Look at your skin...the tissue that covers your body can be changed into nerve cells! Amazing! These cells are incredibly valuable because they contain all the genetic changes (known and unknown) that cause Parkinson's. Therefore, understanding and treating what goes wrong in these nerve cells will give a more comprehensive view of what goes wrong in Parkinson’s. Studies using these cells will be a huge leap forward in understanding and treating human patients.

Dopamine producing nerve cells (green cells) created from the skin cells of Parkinson's patients. Amazing!

Digging for a cure at the Oxford Parkinson's Disease Centre (OPDC) - Part Two

The role of LRRK2 in autophagy

One of the genes known to cause Parkinson's is LRRK2. Sergey Brin, one of the founders of Google, has a mutation in this gene and therefore has an increased chance of developing Parkinson's. LRRK2 normally passes messages to other proteins in the cell (in a game of Chinese whispers called phosophorylation) and these proteins carrying out processes in the cell; LRRK2 is sort of the manager in a factory. In Sergey Brin’s brain (and other affected by Parkinson’s), LRRK2 becomes hyperactive and gives out messages to everyone, causing chaos; cells normally work by keeping calm and balanced.

LRRK2 has been implicated in a process called autophagy. Imagine the cell is a chemical factory, producing vital chemicals to make sure the cell functions properly. However, like a real chemical factory it produces waste products. Autophagy is the process whereby the cell cleans up after itself and chucks away the rubbish it generates. Mutations in LRRK2 can disrupt the cleaning regime of the cell; eventually accumulated rubbish makes the cell become chaotic and it does not function properly. Eventually the cell begins to malfunction and it dies, therefore causing a reduction in dopamine levels and the symptoms of Parkinson’s.

Work in the lab is trying to discover which part of autophagy LRRK2 controls; is it when the cell is preparing to clean (induction), getting the bin bags ready (autophagosome formation), picking up the rubbish (lysosome fusion) or throwing the bin bags away (autophagosome breakdown). A neat experiment is being used to work out where LRRK2 is affecting this process. There are proteins that give off specific coloured light (e.g. green). These can be expressed in cells and seen under a microscope; to provide a contrast, the rest of the cell is labelled red with a chemical. At the start of the process of autophagy the coloured protein will give off green light but at the end when the protein is picked up ready to be thrown out the protein no longer produces green light (due to the acidic environment of the autophagosome). Therefore, in LRRK2 mutant cells from patients the proportion of green to red will tell you where the process has stopped; more green means mutant LRRK2 has stopped the process early and conversely more red means it stops it late in autophagy. This is important to know because it tells us which drugs to potentially use to correct the process.

Treating alpha-synuclein?

Another major gene implicated in Parkinson's is alpha synuclein; alpha synuclein protein clumps together to form Lewy bodies in Parkinson's affected cells. Dr Wade-Martins lab published some work this year (PNAS 110 e4016) showing they created a mouse with three copies of the alpha synuclein gene (normally mice have one copy). This forces the cell to make 3x the amount of alpha synuclein protein; Lewy body formation (common in Parkinson’s) is therefore more likely in these mice. Indeed these mice show symptoms of late-onset Parkinson’s. There are humans who also have three copies of the alpha synuclein gene and develop Parkinson’s. Members of the lab have been trying to use drugs to break up the Lewy bodies, prevent cell death and stop Parkinson’s from developing. It is early days but this work demonstrates the benefit of having multiple specialists in the same research centre: cell work can lead to mouse work which can lead to testing drugs to stop what is happening in the cells of the mouse, and ultimately human sufferers.

After my visit to the OPDC I gained renewed hope that one day soon the crucial piece of soil in the Parkinson’s field will be lifted to reveal a cure for this devastating disease.

Listening to the echo

When you recall a piece of music in your head you are listening to an echo of your past; in the absence of the original physical experience recollection reconstructs the experience again. The moment you access the sounds, either outside of yourself or later within yourself, the experience is filtered and made sensible by a sense of self and its memories.

The mind is full of these echoes, which reverberate around the mountains of understanding and valleys of memories within the self. For example, when I talk to someone I hear the words in my head as I formulate what I’m going to say; these words are echoes from the vocabulary I originally learnt growing up. Then, in a separate act of listening, I hear the sound of my own words spoken aloud. Finally I hear the echo of the words I have just formulated and spoken. I listen to these echoes both as the instigator of what I want to say and the means of producing the sounds.

When somebody talks to me I do not hear the formulation of the words in the other person’s head; I do experience the physical impact on my eardrums when the person is verbalising their words. But, I only hear the echo of myself listening to the external sounds, not the echo of the formulation of words.

This is a crucial difference: when another person judges me I cannot hear or do anything about the formulation of the words in their head; I am not the instigator of their thoughts nor do I make the decision to verbalise their thoughts. I can only do what I think is right and react to the consequences of my actions (good or bad) and any possible judgements as they arise. However, when I judge myself I can listen to the echo of myself internally formulating the words and act as border guard to ask whether that judgement should populate my mind. By overhearing the echo I can stop unhelpful judgements impacting my emotional state.

Therefore, you react to other people when you are judged and overhear the echo of yourself when you judge yourself. Both allow the freedom to choose to believe the judgements or not.

Why can’t Parkinson’s just leave me alone?

Another part of the heath. Storm still.

Enter King Lear.

“Blow, winds, and crack your cheeks! rage! blow!

You cataracts and hurricanoes…

Dismantle me! Cleave me from myself! Rob me of my body, scatter my hope into the raging wind! Prevent me from finding love and allow me only to hate you! Dry up my heart and set my limbs in stone! Deafen me with your thunderous proclamation of prognosis and exhaust me with rage!

Yet, what is this to me? A mere drop in my ocean. You have given me and taken away so much already. Have I given up? Have I stopped learning? Have I lost myself? I stand here resolute! I am proud of my place in this world! You will not shake my resolve. You will not conquer me! Grind me down, break me and you will not break me! What is one more tear to me when I've wept enough to flood your fire from my brain! The more you persist the more I will resist and the more I will consist of me!

Can't you just leave me alone? No? Then do your worst Parkinson's! I’ve been preparing all my life. I’m ready to be me!!

Playing the Parkinson's card

When you are diagnosed you are forced to move from the life you inhabited to a Parkinson's apartment. On arrival, you are greeted by a welcome pack containing bits and pieces you might find useful as you settle into the rest of your life. There's an endless supply of sleepless nights, frustration and self-fulfilling anger, fear and uncertainty...

At the bottom of the box is your Parkinson's card. It's your proof of membership to this most exclusive of clubs. When you are struggling with something because of your symptoms you can "play the Parki card" to let others know to help you. Of course, and in no way do I condone this utterly unethical behaviour, you can play the Parki card at anytime; when you do something wrong; when there's washing up to do; or you simply want a rest. I must say I have yet to test out the unethical use of the Parki card but such a possibility shows we still have choice within this disease!

And, yes, I know the story of the boy who cried wolf...!

"I don't know"

We are terrified of saying, "I don't know". We are a species that feels the incessant, abject horror of the void created by the curse of consciousness; we are thrown into the world with self-awareness, which creates the desperate need to fill the world and our place in it with meaning. We are set up to do this constantly and we fill the void with profundity or nonsense. It is such an automatic consequence of thought we hardly notice it; thought must be filled...with anything. It doesn't matter what, as long as the void is out of sight and the curse of consciousness satisfied.

Self-awareness sets up the means of questioning why without giving us the means to know the answer; we are limited beings. So we pretend and pretend and pretend until we deceive even ourselves that we've found the answer. For example, Christianity explains the world by inventing a kindly father figure and creator. But Christianity is aware of the void too and therefore must justify itself; it does this by saying we are born into sin and we must take on the responsibility for this sin (this "kindly" father figure created us with sin then blames us for our sinfulness...). What does Christianity prescribe to alleviate our guilty sin? Go to Christ and take on the greater guilt of Christ's sacrifice, a guilt that can never be repaid. The balm wounds while it heals perpetually. What exquisite and self-justifying torture! Thus, Christianity ensures its own survival in the void of self-awareness.  

Have the courage to say, "l don't know"; we incessantly seek meaning because we are aware of the void and the need to justify ourselves. We would rather fill the void with nothingness than live with the uncertainty of not knowing.

One of the main lessons I've learnt from having Parkinson's disease is the need to live with uncertainty and the lack of meaning. I was thrown into the world in a specific state (which includes a susceptibility to Parkinson's) but in no way did I choose that state (just as I did not choose whether I was male or female, had two eyes or not). The meaning of this state and the reasons why only stretch to this; it just is. "The rest is silence" (Hamlet). I can live with the void of not knowing why.

You can too. Everybody say, "I don't know". Again, "I don't know". That "I don't know" is not a defeat, it is a new start and an honesty born of fearless self-awareness. It acknowledges there are some things we cannot know. But it also encourages further exploration and development; "to know that you don't know, is to be wise" (Socrates). It loosens the horror of not knowing. It is a liberation...

Where does it hurt?

We have the ability to point to where it hurts in our bodies and let others know we are in pain. Such self-awareness is one the wonders of the universe!

Yet, ask me where my Parkinson's hurts and I can't point anywhere. Parkinson's is in me. It surrounds me and confines me; it seems to be everywhere. It's like I'm on stage and the lighting, sound effects and cues that determine the necessary context of the play are controlled by Parkinson's; but we are working from different scripts. Therefore, the things I do and my intentions are mismatched to the plans Parkinson's has.

Where does Parkinson's hurt? My head? My heart? I think it hurts my emotions. Before I was diagnosed I still had Parkinson's but my emotions weren't burdened by the knowledge of the prognosis. Parkinson's hurts now because if feels like I am not in control of the context of my life. Parkinson's is a burden because it impacts me emotionally. 

However, emotions can be healed by thinking. Try it. Look into the current state of your emotions. Think the opposite; do you feel different? You may not believe it (thinking doesn't change the fact I have Parkinson's) but the thing you are doing at this moment, thinking, is incredibly powerful in dealing with any emotional pain. We can change the world through changing our emotional reaction to the world. That is how we can heal the hurt of Parkinson's...

Shrunk in the wash

I suffered a nervous breakdown when I was 21 (see my post: "Breakdown" http://dialoguewithdisability.blogspot.co.uk/2013/08/breaking-down.html). 

In hindsight, that point in my life felt like I was wearing a prison uniform underneath my real clothes. Even when I had a shower or changed clothes I would still be wearing the uniform; I thought I could never take it off.

However, hard work, persistence and CBT counselling have allowed me to exchange that depression uniform for something resembling my real self.

When I look back to that time it is very tempting to inhabit that uniform again, to feel the depression, pain and distress. But it is important to remember that during the intervening years I have washed the uniform many times and during the washing the uniform has shrunk as I have grown. The uniform is tiny now; I can hold it up and realise it doesn't fit any more. My breakdown is part of my past for sure but the emotions I felt at the time no longer apply to me. I have learnt to cope. I can try to fit in those tiny clothes or I can choose to inhabit the person I am now.

This is what a Godless world looks like

I saw proof today there is no God. I attended a scientific presentation on childhood Parkinson's disease. The speaker, a clinician, showed us videos of the symptoms. There were young children in the end stage of Parkinson's, unable to move; locked inside their tiny bodies. It upset me greatly. Especially since they were 'cognitively spared'; their minds were intact. It shatters my heart into a billion pieces to think what those children thought. I weep a thunderstorm of tears at the sheer, disgusting cruelty of such suffering.

There is no God. At all.

“Mine eyes are full of tears; I cannot see”

King Richard II by William Shakespeare

When you are diagnosed with Parkinson’s disease, it feels like you are cast in the role of Shakespeare’s King Richard II and Parkinson’s is the usurper of the crown Bolingbroke. Parkinson’s deposes you and takes what should be rightly yours: the sovereignty over your body and the conscious control you have. It seems you have no choice but to resign from yourself and declare:

“I must nothing be;

Therefore no, no, for I resign to thee.

Now, mark me how I will undo myself…”

Note how Richard empties himself out (“I will undo myself”) by failing to identify with his new role as citizen and not King (“I must nothing be”). Parkinson’s, with the insidious prognosis (CHRONIC, INCURABLE, PROGRESSIVE), can push you into believing you have lost yourself and therefore you must start to dismantle your life, declare yourself bankrupt and empty out the world around you. If you, like Richard, cannot see yourself within a alternative role from the one you expected to have, you will:

“With mine own tongue deny my sacred state…”

You deny yourself and end up knowing:

“I have worn so many winters out

And know not now what name to call myself…”

It is natural to start to blame yourself for Parkinson’s as Richard blames himself for giving up his crown:

“If I turn mine eyes upon myself

I find myself a traitor with the rest

For I have given here my soul’s content…

Made glory base and sovereignty a slave,

Proud majesty a subject, state a peasant…”

By taking on the responsibility of Parkinson’s (you “made glory base”) you have a little hope that you can cope in the future. But this makes it more likely that you will allow yourself to become Parkinson’s:

“How soon my sorrow hath destroyed my face…”

The fear of losing our identity makes us retreat from the responsibility and we deny our knowledge of Parkinson’s because it protects us from the accusation. We end up in a perpetual oscillation between trying to control the future and denying there is anything to control.

“Fiend, thou torment’st me ere I come to hell…”

However, Parkinson’s is not King, he is a citizen. Even within Parkinson’s you retain sovereignty in how you react to situations. Richard breaks his mirrored self-reflection and therefore loses awareness of this fundamental choice:

“As brittle as the glory is the face,

For there it is, cracked in an hundred thousand shivers…”

You don’t have to crack your mirrors or deny yourself in the face of your disease.