Weight of the world

When irises grow the weight of their flowers become such that the stem cannot withstand the burden and it eventually bends and collapses to the ground.

As we grow up our heads are filled with emotion and experience until our personality and our life starts to blossom. Sometimes, the amount we have gone through, the depth of the emotional connection we have gained or an unexpected event or illness makes our head heavy and it drops to the ground. We are unable to shoulder the burden; such is the weight of stammering, depression and Parkinson’s.

However, the stem that supports us can be nourished with helpful strategies or positive thoughts to lighten the emotional load we carry. For example, the art of living alongside a problem or understanding the underlying cause can allow us to lift our heads again…

Border guard

The queue is forming at the border checkpoint and it is my job to scrutinize each thought before I allow them to take up residence in my mind.

In the past I never knew I had a job as border guard and I used to allow any thought to pass. The negative, unhelpful ones wrecked havoc once they settled in the country. But now I try to check the papers of each one. Take this next Parkinson's thought for example; sharp suit, greased back hair and brief case. His passport will be forged and he will promise he is here to promote "healthy" anger, defeat and mourning. There's no place for that thought.

Next please.

Self fulfiling prophecy is next in line. You can tell those ideas by the way they talk to themselves; they divert energy into telling themselves not to use energy on anything; they're not good enough. They are probably the most insidious thoughts you can meet. We can't allow them to pass.

Next please.

You do come across helpful thoughts; I normally wave them through. They have their papers in order and I've heard that once in the community of ideas they mobilise other thoughts and properly organise them. The most successful thoughts I've allowed to pass are self-compassion, thrownness, acceptance and living alongside a problem.

Next please.

The job of border guard is a continuous, difficult one. Sometimes you misjudge a thought or are overwhelmed by the crowds at border checkpoint and the unhelpful thoughts get in. But that's ok, you can't be perfect. I've just allowed another good thought to pass.

Next please...

Butterfly escape

I flap my butterfly wings furiously but all I do is crash into the pane of glass of the closed window. I see my future through the glass and spurred on by the vision I flap again and again. The sound of my wings rhythmically hitting the glass is a crazed drum beat. Exhausted, I finally stop and land hopelessly on my legs. I look up and see through the Parkinson's glass at the false sunshine outside; my heart sinks and without hope I beat my wings again...

When I saw a butterfly today insanely flapping its wings against the window and trying like a broken record to break free, I felt an empathy for its lack of adaptability and awareness. I opened the window and clumsily the butterfly flew outside.

But nothing can open the Parkinson's window for me...

Trust and Parkinson's

Trust is expecting something to happen; it is usually based on a promise made by another person and is the basis of all relationships in society. For example, I trust the person sitting next to me will not get up and stab me and I assume he trusts me in the same way. Trust is held in mutual balance until it is betrayed; if the person next to me takes out a knife I rapidly lose trust in him. Of course, trust is context dependent; if I am in a room full of murderers my threshold of trust is very high; enough to negate their potential actions (e.g. they are kept in handcuffs).

When Parkinson's enters your life, the disease sits next to you and brandishes a very big knife. Because a diagnosis is so unexpected you have nothing to equalize the relationship; you sit there defenseless. This disempowerment and unbalanced relationship shatters the trust you have in your ability to redress the balance; Parkinson's will acquire bigger and bigger weapons as time goes by and the feeling of exposure to its power will increase.

How can I handcuff Parkinson's and neutralize, as best I can, its possession of me? You can use the weapon of acceptance. Choosing to accept the situation you find yourself in, is to choose to look away from Parkinson's and see the rest of you. It is choosing to trust yourself to cope when it does attack.

Constantly looking at Parkinson's does not keep it in check; on the contrary, its threat is countered by living the rest of you...

Fruitless fruit

Stammering, depression and Parkinson's can take away the means by which my conscious intention, both physically and emotionally, is expressed. This raises a question: if the means of expression are missing, what is the value of the intention? If the fruit is not picked and withers on the branch what value does it have?

I have a fundamental need in me to care, to help out and to show empathy. However, to fulfil this need in actions I must have sufficient emotional and physical tools available to me. My problems have impeded the development of these tools; the fruit has grown but the means to pick it and give it to someone is not there.

Nonetheless, the value of this fruitless fruit is if I stop trying and allow the tree to die I destroy the possibility of ever giving the fruit away. At least growing the fruit, even if it is left alone and withers, includes the chance of someone reaching up, picking the fruit and giving their value to my effort.

Casualties of War

Parkinson's declared war on me; the threat had been building for years without anyone noticing it, slowly eroding away my defenses and invading my territory. Then one day Parkinson's attacked; it came out of the clear blue sky and crashed into me, my legs buckled and I fell to my knees, causing my life to slip through my fingers and shatter on the floor. The terror of Parkinson's had finally struck.

Once the dust settled and the mourning had begun, I declared war on this terror and mobilised my anger. I sent out my troops in search of my enemy. But Parkinson's was hiding in plain sight. It moved when I moved, it spoke when I spoke. My troops saw this and started to attack but Parkinson's is part of me so attacking it was attacking myself. I damaged myself with all out warfare; I was getting nowhere trying to defeat myself with brute force.

It was difficult laying down my weapons and putting aside my anger but I had to open up negotiations with my disease. I had to face my adversary across the table and understand him; not try to deny him but with a curiosity and compassion for myself find a way to still be me. I found space in my life where I could dry off from the Parkinson's rain and live alongside the changes in my body. Don't deny Parkinson's but equally don't exaggerate its affect.

You can't declare war on a disease, you can only learn to live with it in a sort of truce with yourself; the more you learn, the more neutral territory you gain and the greater the freedom to be you...

Beneath the surface

Perhaps it is the pervasiveness of the visual world or the power of visual media or just convenient, easily consumed and profitable shorthand for what is deemed good in us, but the way we look is held as our supreme social capital. A spurious "ideal" body type is constructed in magazines, movies and on television and our value is how similar we are to this "ideal".

I find this curious; because my Parkinson's is separating the thin layer of control I have over my body, it has demonstrated to me the value of what is initially hidden from view yet invaluable; my mind.

The way I look, my body type, facial characteristics, skin colour, gender, Parkinson's symptoms etc were determined before I was born and therefore wasn't my choice. The ability to choose emerges only when we are in the world; this means we can choose only when the process that determined our visual appearance has come to an end. Yet we take the way we look, relative to the "ideal", as who we are.

However, the one thing that remains closest to who we are throughout our life is not the surface, it is our mind. We have more control over the way we think than what happens to our body. But we judge each other by the way we look, something we didn't choose.

Therefore, when we judge based on appearance alone (and not on the contents of a person's mind) we are likely to miss the person being judged.

Being thrown into the world - embryonic development and the creation of you

You were once a single cell...

All biography begins with birth. When we were born the process that threw us into the state in which we exist came to an end. It had been successful in attaining for us a unique place in the world. Our thrownness became a settled issue and our potential became an open door.

Every single person that has ever existed was created by the processes leading to birth, collectively called embryonic development. This is the origin of us and our shared humanity, we all attained existence through the same genetic mechanisms.

You were once a bundle of cells...

30,000 genes encoded by your DNA directed the development of that single cell into a human being. It did this by telling your cells to divide and differentiate into the structures of your body. These genes had to determine where your head and feet were going to be, which was your back and which your front, where your left and right would form. It carefully built each organ and laid down tracks of arteries, veins and nerves to connect each part of the body. Muscles and tendons were sculpted around your growing bones. The most complex structure in the known universe, the brain, was also being formed. Your heart began to beat.

You were once the size of a grape...

All the main structures of the body formed when you were about the size of a grape. Your genes then instructed your cells to divide rapidly to enable you to grow into a foetus and and then a baby ready to be born.

Thrownness is fixed...

The events of embryonic development are irreversible; once they occur they become fixed and form the next stage of development. This means any mistakes, for example nerve cells becoming susceptible to Parkinson's or the vessels of the heart form incorrectly, become part of your thrownness and the state in which you exist. Once you are in the world and embryonic development has come to an end, you cannot unravel your development to when the mistake happened and correct it. You can only cope with it after it has become fixed in you.

Prejudice, hatred and empathy

Harm

Human beings have a seemingly infinite capacity to cause harm to other human beings. History, as one testament to this, is soaked in blood and hatred. The source of the cruelty inflicted by people is the failure to identify with the victim; not seeing them as sharing the same value and having the same ability to feel suffering and joy as you.

This lack of empathy leads to the vilest word ever invented: "subhuman". Such a contradiction (human is not human but still human) is a void that draws the basest cruelty out of people. It can justify such horror and prejudice.

Prejudice has three main stages:

One - Discrimination says, "you have no right to be different". This reveals a deep insecurity about who you are if you cannot tolerate difference; the existence of different people doesn't have to threaten or undermine who you are.

Two -  Segregation says, "you have no right to live amongst us if you are different". This can manifest as separate social areas for different racial groups, separate living areas (ghettoisation) and then exploitation of the isolated population (slavery).

Three - Elimination says, "you have no right to live if you are different". Adolf Hitler demonstrated to humanity the ultimate end point of prejudice; the systematic and industrial scale murder of whole populations of people deemed different (holocaust).

Discrimination amounts to punishing the person for their difference, whether skin colour, gender, intellectual or physical limit etc. The assumption of a victim's responsibility for these characteristics is totally misplaced. DNA threw you into the world with these things already determined but they were not chosen by you. Responsibility is a consequence of the ability to choose and this only comes once you are fully in the world (e.g. it is absurd to accuse me of a crime before I was born). Therefore, we are not responsible for those characteristics determined before our birth (e.g. susceptibility to Parkinson's or why we have two eyes). Blaming and punishing people for these things is absurd.

Love

Human beings also have an infinite capacity to love other human beings. This is our contradiction. Love starts with empathy: the ability to imagine yourself as somebody else, feeling what they might feel and valuing your feeling.

Genetic identity

There are at least two aspects to having a genetic disease. The first is mutations (which are present in genes and disrupt some function of the body) are random, non-conscious events that are part of your thrownness (i.e. the state in which you exist); they can occur before you were born or during your lifetime. Nobody (including yourself) is responsible for the mutation, it just is.

The non-conscious origin for mutations implies that the mutation is beyond your control, all pervasive and you are locked within its walls.

This brings the second aspect of genetic disease to mind. Many other genes have worked (and continue to work) to build and maintain a brain and a body capable of consciousness, free will and the ability to choose. Living with a mutation does not mean being the mutation; your other 30,000 genes create space for you to choose a reaction and be alongside the mutation and what befalls you in life. This is your true genetic identity...

"What's in a name...?"

Michael J Fox, Billy Connolly and Jonathan Stevens have acquired the addition to their name of, "...who has Parkinson's disease". What does this mean? How much does Parkinson's redefine who we are?

It is easy for those on the outside looking in to view us as a disease and dress us in Parkinson's clothes. For those on the inside looking out, being defined either by others or indeed ourselves in relation only to Parkinson's is shifting the true centre of who we are. It's like taking a picture of us and noticing only the random person who happened to walk into the frame when the picture was taken.

Something of us stays the same with this disease; Michael, Billy and Jonathan are each still the person they were before diagnosis. Of course there are physical and emotional changes but being defined by these changes is substituting the whole for only a part of who we are.

"Help yourself to a bit of what is all around you..."

Lyrics in "Martha, my dear" by the Beatles

You become ill with Parkinson's disease only once so it's ok to make the plea, as you face the challenge of learning to live with the disease, "I've never had Parkinson's before, what do I know?" Allow yourself to get things wrong and change direction; above all else, allow yourself to learn! This is crucial in coming to terms with a diagnosis of Parkinson's.

Of course you are not alone in this endeavour; family, friends, fellow sufferers, doctors, Parkinson's nurses, charities such as Parkinson's UK, scientists etc are invaluable sources of advice, comfort and hope. It is important to remember that you are active in this process; those around you can only help you if you help yourself.

This is particularly important when dealing with the issue of cures; hope for a cure can make you vulnerable. Those with an incurable and chronic disease are predisposed to listen to talk of cures. However, such talk can give you false hope and lead you down the wrong path.

A clear and wise booklet ("I've got nothing to lose by trying it") has been published by Sense about Science to help us navigate the tricky issue of "cures":

http://www.senseaboutscience.org/pages/ive-got-nothing-to-lose.html

Scientific knowledge is only science if it is supported by evidence; there is no place in science for blind trust. Therefore, anyone who claims to have found a cure will have a wealth of published evidence to show you. Such evidence is the basis of a scientist's reputation so they will be proud to share it.

This places the burden on you to assess the evidence. However, not everyone has been trained in science. This is where charities such as Parkinson's UK come in. They are in touch with the scientific community and can present the evidence in plain language to enable you to make an informed choice.

Parkinson's disease makes you feel vulnerable and alone. It is therefore crucial to empower sufferers with knowledge and hope; but it is equally disempowering to give false hope.

An open letter to my disease

Dear Sir,

We were thrown into this predicament at the same time and we've battled for space within this body for years. You silently go about your business, deploying subversive tactics and carrying out night time raids on what I hold dear.

You are unable to deviate from the path you are on or open a dialogue with me. You are imprisoned in your silent work while I am free in having a voice; I can choose my reaction and that is my sunshine in your darkness; a choice in tyranny; a sunflower in your soiling of me. You may drag me along your path but I will resist with potent indifference to you. I will not "go gentle into that goodnight" (Dylan Thomas) but I refuse to rage against you; that is where you hurt me the most because that is where you take me from myself.

I hold a candle to illuminate the challenges you set me and I turn my true self towards you. I look through you and see the potential that remains in me. You have declared war on me but I will not waste myself on self-inflicted wounds. I defend myself by giving you rubber bullets; my reaction determines the type of ammunition you use on me. I can harm myself more than you can by an indignant rage; I will not "rage against the dying of the light" (Dylan Thomas) because I have a candle that will never go out...

Nerve cells and Parkinson's disease

Parkinson's disease is caused by the loss of nerve cells in the substantia nigra, an area of the brain responsible for initiating voluntary movement.

What are nerve cells? How do they work? What goes wrong in Parkinson's?

Nerve cells

Imagine a big room crowded with people; everyone has rigid, spikey hair and a thin pencil-like nose. When someone nods, their nose touches a spike of hair on another person and causes that person to nod; in this way the signal cascades around the room.

Your brain is a bit like this. It is made of billions of nerve cells and each nerve cell is made of dendrites (the spikey hair) attached to a cell body with a protruding axon (the pencil-like nose); but instead of nodding, electrical impulses are passed on.

The surface of the axon has many tiny doors (called ion channels). When the nerve cell is at rest the doors are closed and the inside of the axon is negatively charged (i.e. it contains negatively charged particles). When a nerve cell is stimulated a door is opened, allowing positively charged particles to enter; the positive charge causes other doors to open and therefore a wave of door opening and positive charge flows along the axon.

The end of the axon forms a synapse with a dendrite; they don't actually touch so how is the electrical impulse passed from axon to dendrite? The arrival of the impulse stimulates release of neurotransmitters (e.g. dopamine) from the end of the axon and they cross the gap and bind to receptors on the dendrite. This causes doors to open on the next nerve cell, positively charged particles to enter and the electrical impulse to proceed.

Volunteering to move

Nerve cells stimulate other nerve cells or activate muscles. The brain coordinates and directs the activity of nerve cells to navigate our environment and respond to external stimuli. Our response is either voluntary or involuntary.

To initiate voluntary movement the dorsolateral frontal cortex of the brain receives visual and auditory information from the visual and auditory cortices. In parallel, the putamen supplies memories to the posterior parietal cortex. The dorsolateral frontal cortex and posterior parietal cortex formulate conscious intention; they then signal, via the basal ganglia (including the substantia nigra) and thalamus, the premotor and motor cortex. The motor cortex initiates and coordinates movement with help from the cerebellum and basal ganglia.

What happens in Parkinson's disease

Parkinson's disease is caused by gradual loss of dopamine producing nerve cells in the substantia nigra, which is part of the basal ganglia. Therefore, when electrical impulses arrive at the basal ganglia from the dorsolateral frontal and posterior parietal cortices, reduced levels of the neurotransmitter dopamine makes the activation (across the axon/dendrite gap) of nerve cells leading to the motor cortex less efficient. This disrupts the initiation of movement (despite intact conscious intention) and the coordination of movement.

See Roberts, A The complete human body (Dorsley Kindersley)

Parkinson's equipment - warning! may be funny!

Things to make a Parkinson's life, erm, easier...

1.  Needle and thread with a hola hoop attached to the needle; the camel will go through the needle this time!

2. Liquid nitrogen and a hammer: instantly freeze any food and smash it into bite size pieces!

3. Prevent the inconvenience of shaving: buy skin coloured masking tape and apply to beard area; ah, that clean shaven look!

4. Real beer goggles: replicates the blurry, "everyone is so beautiful" vision you get when you are blind drunk. You look like your drunk, why not look like your drunk!

5. Fold out portable hammock for when those zzzzzzzz won't leave you alone!

6. A marching band to follow your mobility scooter, playing the Beatles song "I'm looking through you," to make sure others are aware of your existence!

7. A sign to hold up when asked the question, "how are you?": "Apart from the chronic, incurable, progressive disease, I've never felt better!"

8. A shaking platform to shake me at the exact frequency but in the opposite direction to cancel out my tremor!

9. A portable ejector seat to get me on my feet again!

Autobiography - the structure and function of DNA (part 4)

DNA and Disease

DNA is fundamental in building a functioning body. It is also responsible for maintaining and defending the body against "the thousand natural shocks flesh is heir to". It is perhaps unsurprising that mutations in DNA cause disease.

There are around 200 different types of cell in the human body. All cells (except red blood cells) contain the entire complement of human DNA; however, some areas of DNA are active and generate proteins only in specific cells. Therefore, mutations in these areas will only affect these cells. Alternatively, some areas of DNA are active in all cells but different cells are susceptible to different environmental stress and this exaggerates the affect of the mutation in these cells. For example, substantia nigra nerve cells are lost in Parkinson's disease; these cells are under high oxidative stress and any mutations that cause extra stress will preferentially affect the substantia nigra.

DNA ("nature") and the environment ("nurture") are likely to play some part in all disease; some diseases are weighted towards DNA as cause (e.g. Huntington 's disease) while others are caused primarily by our surroundings (e.g. liver disease due to alcohol consumption). Parkinson's disease is likely to be somewhere in the middle with many subtle genetic factors interacting with the environment to cause loss of nerve cells.

See Nature 421 395-453

Stretching ourselves along

There is a paradox at the centre of us all: we are constantly changing yet somehow we stay the same...

The emergence of my Parkinson's symptoms has caused my body to significantly and rapidly change; it is becoming further from my control and therefore increasingly unable to fulfil my conscious intentions. However, the conscious intentions remain mine alone and I identify with my body as the one I've always been despite the changes.

The pace of change may be much slower in your body but the same issue will arise for you as you get older.

Consider the difference between you as a new born and the person you are now and you will see how much we change. But we still identify that new born as "me"; we celebrate our birth each year.

Heidegger describes our continuing self-identification as an ability to stretch ourselves along between birth and death. Imagine a sheet of plastic was pegged into the ground at birth and we drag the plastic with us as we journey through life. Everything we do, from planning and carrying out specific tasks to recognising ourselves in a mirror, is oriented towards our self-identification.

This has important consequences for me as I inhabit my Parkinson's affected body: I can call upon past experience to guide me (these experiences, despite being in the past, are still mine); when that guidance is no longer helpful I can change it...while staying the same.

No matter what happens I will still be me...

Autobiography - the structure and function of DNA (part 3)

Mutations in DNA

Although the double helix structure of DNA allows for remarkably faithful and accurate replication, mistakes do take place. So called mutations occur when DNA subunits are replaced with other subunits (ATTCGG changes to ATTAGG), extra subunits are added (ATTCCCCGG) or subunits are lost (ATTGG). This can alter the function of proteins by changing the sequence of amino acids.

DNA and Evolution

These changes in DNA sequence provides variation in function, which is utilized by Natural selection to select and preserve those variations best suited to the environment.

Similarities and differences in DNA can be compared within species and between species (the sequence of subunits in DNA can be read).

Imagine Joe, Bob and Simon are at the blue sweet shop and each buys 5 blue sweets. Joe continues to buy blue sweets while Bob and Simon visit the red sweet shop and buy 5 red sweets each. Then Simon visits the yellow sweet shop and buys 5 yellow sweets. At the end of the shopping trip Joe has 15 blue sweets; Bob has 5 blue and 10 red sweets; Simon has 5 blue, 5 red and 5 yellow sweets. The only colour sweets they all share is blue; therefore, they must have started in the blue sweet shop. Similarly, if DNA is compared in humans from Africa, Europe and Asia, all individuals share some of the variations found in the African population; therefore, all humans originated in Africa.

If DNA from different species is compared, those species with a more recent common ancestor have lots of identical sequences while distantly related species have lots of differences. For example, we share 99% of our DNA with chimpanzees but only 50% with bananas; we are genetically more like chimps than bananas!

See Nature 421 395-453

Risking being worse

Living with a chronic, progressive condition such as Parkinson's (or even getting old!) requires risking being worse at things you previously took for granted and being ok with that. Taking that risk makes it more likely that next time it will be better; give yourself the chance to learn how to live with the condition and find improvement even within the progression.

Trying risks failure but is the only possible way to succeed...

Autobiography - the structure and function of DNA (part 2)

Structure of DNA

"....It has not escaped our notice that the specific pairing we have postulated immediately suggests a possible copying mechanism for the genetic material."
Watson and Crick, 1953

Watson and Crick proposed that DNA forms a double helix: two separate DNA strands, each consisting of a row of subunits (A, T, G, C) attached to a ribbon-like backbone, are wound around each other. Within the double helix the subunits on one strand face and bind subunits on the other strand; only A binds to T and G binds to C.

ATCG
TAGC

Therefore, DNA is replicated by unzipping the double helix and each separated strand forms a template to allow individual subunits to bind their partner; thus generating two DNA molecules from the original molecule.

ATCG           ATCG           ATCG
TAGC                                TAGC
               
                    TAGC           TAGC
                                         ATCG

DNA encodes proteins

Proteins provide the structure of every cell in your body and carry out each function needed within the cell to keep you alive. DNA initiates and controls life by controlling which proteins are manufactured in the cell. Each protein is made from a gene, which is a specific sequence of DNA subunits.

DNA is said to express proteins: three subunits of DNA code for one amino acid (amino acids are the subunits of proteins) and it is the sequence of amino acids that determines the function of proteins.

The sequence of DNA is converted into proteins via RNA: DNA is unzipped but only one strand is a template to bind new subunits (A, C, G and U (instead of T)). A short sequence of these new subunits (called RNA) corresponding to a gene is then released from the strand of DNA.

GTCCTA        GTCCTA       GTCCTA
CAGGAT                              CAGGAU        CAGGAU

RNA then encounters ribosomes, which mediate the interaction between RNA and amino acids.

CAGGAU         CAGGAU
                            Q    D          QD...

Amino acids are sequentially added according to the sequence of RNA and therefore DNA. The resulting protein is released into the cell.

See Nature 421 395-453

Autobiography - the structure and function of DNA (part 1)

"It is the cause, it is the cause my soul..." - Shakespeare

Natural selection, the non-random selection of favourable traits in a limited environment, is responsible for the informational content of deoxyribonucleic acid; or DNA. The action of DNA was the cause that threw you (and indeed all life) into the world and determined your state of existence.

Therefore, to understand anything about who you are and where you came from it is crucial to understand DNA.

Discovering scientific knowledge

All scientific knowledge was once new knowledge:

Scientist's carry out experiments to isolate and identify causes. The data generated by their experiments either  reveals the cause, the need to identify a deeper cause or uncovers an unexpected cause. This new knowledge forms a "brick", which other scientists examine and try to fit into the wall of knowledge already built. Sometimes the brick fits nicely, sometimes part of the wall has to be knocked down to accommodate the new brick while other times the bricks are discarded. In this way, the edifice of scientific knowledge is gradually built up.

Discovering DNA

In 1866 Gregor Mendel demonstrated that characteristics are passed from generation to generation in discreet units called genes. What these units were made of remained elusive; it was assumed proteins, the most abundant biological material, fulfilled this role.

In 1869 Fritz Miescher discovered an acidic substance in the nucleus of cells, which subsequently became known as DNA. In 1928, Griffith found that bacteria can share inherited material (genes) in a process called "transformation". In 1944 these findings were brought together when Avery, MacLeod and McCarty showed that DNA was the material that was responsible for transformation. This demonstrated that DNA forms units of inheritance.

How does DNA carry the information needed to build living things and how does it replicate itself so it is passed from generation to generation? Rosalind Franklin and Raymond Gosling generated an X-Ray diffraction pattern of DNA in 1952, which Watson and Crick used in 1953 to elucidate the structure of DNA. Remarkably, their proposal suggested answers to both questions.

See Nature 421 395-453

Parkinson's turbulence

I am directed to my seat, number 26G, by the doctors. The seat is cramped and uncomfortable but most aeroplane seats are. I am strapped in and I cannot move. It takes three months to taxi to the runway; eventually on diagnosis day, the three words "you have Parkinson's" triggers the engines, which pushes me back into the seat and moments later the plane lifts off the ground.

Once in the air the captain makes an announcement: "Ladies and Gentlemen, this is Parkinson's speaking. Welcome on board. If you would all like to turn and look at our newest passenger in seat 26G. Everyone say goodbye and hello to Jonathan! During the flight today, which lasts a lifetime, I hope you enjoy your personal physical and emotional turbulence..."

A Parkinson's flight has no known destination or escape but there is a guarantee of turbulence...

The relationship between Mind and Body in Parkinson's disease

Parkinson’s is taking away my ability to translate conscious thought into movements of my body. This has prompted me to ask: how much of me is lost when the communication between mind and body is defective? Am I my thoughts or my body? Am I lost when my body fails to respond?

Thoughts are objects in the world but they have a special status: they can signify experiences of objects in the world (e.g. the thought, “the sun is yellow” signifies an experience of the sun and not the object itself). Non-thought objects cannot signify experiences but they can be the subject of experiences. In other words, the transition from objects in themselves to an “object” in thought requires a thinker to experience and signify the object.

There is another type of signification of thought: when I think, “type this word” it signifies a complex set of muscle movements which direct my fingers to tap the keyboard; the thought “type this word” is a thought signified by consciousness as my thought and is also a signifier of bodily movement. The resulting movement is limited by the effectiveness of the thought and also the specific arrangement of bones, muscles and tendons etc in my body, whose arrangement was determined before I was born.

Therefore, thoughts can signify experiences and bodily movement; as such thoughts are free and also restricted; free to be whatever is possible as experience (within the limits of language and understanding) and restricted by the specific state of the body the thought finds itself in. My body limits the signification of thought as bodily movement but leaves intact thought as experience; this happens in both non-sufferers and sufferers of Parkinson’s, the limit is just deeper because of Parkinson’s.

Therefore, as I gradually lose control of my body I lose my identity as signifier of bodily movement but retain myself as a being who experiences the world.

The observer effect

Quantum physics says that particles exist in all possible states until they are observed. The presence of the observer renders all these possible states into one state, the observed one.

However, knowledge requires a knower and to know something you “observe” the object; knowledge of the object is based on something observed in the world, which is delivered through the senses to the brain. The brain structures the sense data into a knowable object. This suggests the knowledge that particles exist in all possible states was observed (otherwise how can it be known?). But to know all possible states an observer is needed but an observer only sees one state. Therefore, the proposition postulates something (observing all possible states) it then denies (observing only detects one possible state).

This fallacy is quite common. For example, you could think being told you have Parkinson’s somehow created the disease (or made it worse) in you: all possible states were rendered into the Parkinson's state when you became aware of the disease. But only knowledge of Parkinson’s was created in my mind when I was diagnosed. I had symptoms prior to the creation of the knowledge of Parkinson’s; so the observation had created nothing but knowledge.

This also applies to knowing the future; such knowledge is unknowable without observing the “future” in the present. But knowledge and observing are acts of thought and thoughts follow one another at intervals of fractions of a second. No thought can jump over the next thought and therefore we cannot skip our present thought to know the future. Also, this is why knowing all possible states is impossible: the thought “all possible states” misses all other possible thoughts and therefore fails to take into account “all possible states”.

Dealing with meaningless suffering

Nietzsche says that what causes anger and indignation is not suffering but the meaninglessness of suffering. We could endure our suffering if there was a reason for it; for example, the agony of childbirth is accepted (otherwise no woman would give birth!) because it allows new life to enter the world. However the majority of suffering in the world is not causally linked to some good.

To help us endure this world and its “veil of tears” we had to invent gods and an afterlife to find some sort of meaning. The presence of a god is to comfort those who suffer; for example, when something bad happens most people pray to a god, even though, at the very least, this god was passive when the bad thing happened; the desperate need to find meaning in suffering outweighs logic and reason.

The presence of Parkinson’s in my life and the suffering it causes is senseless. There is no reason for the fact I was thrown into the world with a susceptibility to Parkinson’s. I’m not to blame, nobody is to blame, no god is to blame, no thing is to blame; it just is. Looking for meaning when there is none makes suffering meaningless. Engaging with the search and setting up a reason that simply isn’t there leads you nowhere. It is immensely comforting to imagine a benevolent all powerful god or to blame the sufferer for their own suffering in original sin (and thus giving an illusionary sense of control). Yet these things are entirely illogical: god is seemingly without the benevolence or power to stop my suffering and how can you be guilty of original sin when you didn’t ask to be thrown into the world? This is breathing in bad air and coughing uncontrollably.

We all have the freedom and choice to disengage from a meaningless search and look for ways to be alongside our suffering. We also need to learn to live with not knowing the reasons why when there are none; instead focus on the how of suffering and what you can do about it.

What is it to be free?

We have no choice but to think; thinking occupies our every moment and is characterized by our ability to think different thoughts. This forms the essential freedom to think at least one more thought. How do we use our freedom? This is the crucial question facing us all; the curse of consciousness allows us to ask, what should we do next?

Our freedom is not absolute; we cannot change our thrownness (i.e. the state in which we exist) because the process of being thrown into the world has finished for us (we are in the world so we cannot influence how we came into the world); thus, you cannot change the nature of a cake once it is baked; you can add ice cream to it but we are fundamentally already who we are. This means that I cannot change my susceptibility to Parkinson's.

Therefore, our limitations limit our absolute freedom; but within the boundaries created by thrownness there is space and freedom to explore; thrownness builds a house with a limited number of rooms that we must inhabit but we are free to wander around the house. The vehicle for this exploration is thinking one more thought; the structure of thought may be limited but thought can accommodate many different varieties of thinking. Part of my thrown limitations is my Parkinson's but I have the choice of what my next thought concerning my disease will be. I can be told by Parkinson's to stand still or I can resist and try to move both physically and emotionally. This choice is my freedom...