A general error

Feminists create a box to place all men in and then fight the box they’ve created. Masculinists choose a description of all women and then complain about the description they chose. Racists decide to characterise other people in a certain way then fight their own description. 

These individuals judge selectively and then fight and hate their own judgments; out of the 7,000,000,000 people on Earth there are both strong and weak men and women (depending on how you define “strong” and “weak”), good and bad from every country (again depending on the definition of “good” and “bad”) so any general description will fail to capture all cases. Such generalisations are wrong specifically.

A similar error can be made with Parkinson’s; it is a highly variable disease so any prediction of its progression is creating a specifically shaped box, which sufferers choose to lie in. Such predictions are selective and have no hope of accurately describing the progression of your disease because the basis of the description has yet to include your case.

“…Or trigger a synapse and free us from our traps…”

Lyric by Robert Pollard, musical genius, Guided by Voices

One of the most amazing abilities of the brain is its adaptability; when, as in Parkinson’s, one part of the brain is misfiring, another part can step into the breach and compensate for the loss. However, this ability has to be actively unlocked and the key is to be open to learning new ways, refining old ones and emotionally accepting something has changed.

For example, reduced dopamine levels in Parkinson’s causes problems initiating movement, resulting in rigidity. This can be actively challenged by exercise and learning new ways to connect to your body (e.g. through yoga). Another example is your thinking can be diverted by therapy from the well-worn path of depressive negativity (which is based on a particular network of nerve cells firing) onto new, more positive and clearer, nerve cell networks.

We can thus actively modify, if not free ourselves from, the traps we set or those set for us.

Three colours of Parkinson’s treatment

What is the aim of Parkinson’s treatment? Is it to send you back in time and give you your body back? Will it repaint your Parkinson’s portrait in one go?

Given the current state of Parkinson’s interventions and the nature of the disease I’ve accepted that, unlike diarrhea, taking a tablet will not stop Parkinson’s draining you; a tablet will not wipe you clean. Therefore, looking at treatment as a one stop shop at the tablet shop and then you can move on is an ill-fitted approach to the illness.

A portrait is painted one brush stroke at a time and uses many colours so treatment requires a multi-faceted approach. All painted colours are derived from blue, yellow and red. What are the three colours of Parkinson’s treatment?

BLUE

  Back to basics:

Treatment should be focused on giving a good quality of life to sufferers; which starts not by focusing on the portrait as a whole but breaking it down into its components brush strokes. This means helping get the basics right (movement, showering, dressing, cooking, sleep etc) and therefore providing a solid foundation to build up and provide space for a fulfilling day.

YELLOW

 You are made up of many parts, treat them all:

Parkinson’s affects many functions of the body (e.g. initiating movement, coordination, facial expressions, swallowing, speech, energy levels, sleep, bladder control, mood etc) so a holistic approach will challenge and hopefully improve each aspect of the disease; thereby ensuring all four tires on your car are properly inflated.

RED

 Remember the emotional:

The aim of treatment is to allow sufferers to live alongside Parkinson’s. A fundamental aspect if this is to be achieved is dealing with the emotional impact of Parkinson’s; the disease is a problem only because the symptoms affect us emotionally. In addition, the emotional is the source of strategies and coping with the disease so looking after the emotions of a sufferer and their family and friends is crucial.

INSTRUCTIONS: Mix paints as necessary and apply one brush stroke at a time.

Glass half full

I always thought that the level of liquid equidistant between the bottom and top of a glass was a glass half empty. However, for the glass to get into a half empty state it must first be filled at least half way. Therefore, any glass with equidistant levels of liquid is first a glass half full.

I faced a glass half full/half empty situation today when my consultant laid out the possible interventions to tackle my Parkinson’s. It went something like this: “Current levels of medication aren’t working so we’ll increase the dose; if that doesn’t work we’ll try a duodopa pump which administers levadopa directly into the intestine; if that doesn’t work we’ll stick electrodes in your brain…” With my glass half empty mentality I could feel myself ticking off and using up the options as fallible steps towards being totally unprotected from the onslaught of Parkinson’s. But, a glass half empty is first a glass half full so the options are worth their weight in gold as something I can try, which is better than laying down and letting the Parkinson’s tide wash over me...

Parry, riposte! – how to fight the past

Sweat pours from my forehead and soaks my eyebrows. I stare through the close metal weave of the fencing mask as my opponent lunges forward and scores a hit. I drag myself back to starting positions while my opponent strides back to face me; I recognise and remember his movement, he is my past self and we have been fighting for a very long time.

In the crowd around us, and cheering for the past, are millions of potential future selves all dressed in fencing gear ready to fight me.

We start again and shuffle back and forth, foils raised, looking for an opening. Then I realize something; my past self is fighting only because I am. I disengage from the fight and stand still. My past self stops looking for an opening and sits down; the crowd goes silent and disappears. I take off my helmet and wipe away the sweat. The silence is deafening and the now empty sports hall is oppressive; yet I drop my fencing helmet and unplug myself from the scoring equipment. I step off the fencing piste and start to explore my surroundings…

Parkinson's and a sense of urgency

As Parkinson's appears to take more of my physical ability away, the greater the urgency I feel to live a proper life; which really means live the life I thought I would have. It is as if a TV playing the movie of that life has been left suspended in front of me; I try to reach out to grasp what could have been but all I touch is the flat TV screen.

This urgency for a life is a fear of finding something special when it’s physically too late. It is founded on what is missing, and is fueled by the gap between memories of my physical presence before Parkinson's and what I am now.

However, I can turn the TV off and realise the future I thought I held in my hands was nothing at all; by watching only the TV, I was trying to hold onto a future that I never held in the first place. Also, being dragged from myself misses the ability that remains in me; defining myself as the things I am not is infinite but what I am is a particular instant of myself.

Declaration

I stand resolutely in the Parkinson's storm and amid the howling wind and stinging ran I quietly declare:

I can only be me in my thrownness (which includes Parkinson's, stammering and depression) and the choices I’ve made (including reacting to my thrownness)

I am the good and the bad that, by accident or design, I’ve chosen in me

I am still a physical entity capable of elevative thoughts and feelings despite my disease

I am the very instant of me as I resist living in the past and the future

I am determined to live a life now and in doing so give of myself and help others to understand

This is me and I cannot pretend to be anybody else; I fully accept the benefits and consequences of all this…

Would you like your Parkinson's poached, scrambled or fried?

Parkinson's is like an egg; it can be cooked on its own in a variety of ways or incorporated with other ingredients to create anything from chocolate cake to bacon and egg ice cream. There is no standard way to cook and consume Parkinson's, no universal cookbook, you have to be an experimental chef and build up your own recipe collection.

As you cook your egg you can’t be complacent or you will under or over cook it; indeed you may even burn it. It is important in cooking, especially when incorporating other ingredients and integrating Parkinson’s into your life, to maintain balance and vigilance. Add too little or too much and it will unbalance the dish and cause conflict and dissonance.

You must also be open to evolving your cooking and not becoming stuck in a well worn groove. Parkinson's changes so you have to adapt. Sometimes have Parkinson’s fried, sometimes scrambled and at other times have it poached.

Progressive, but to where?

Parkinson’s is a chronic, progressive disease. The shadow of the prognosis towers over my future like a prison cell; it dictates that my symptoms will get worse and I will gradually lose control of my body until I am locked inside my unresponsive body.

However, predictions of the future need the future to verify them but we are stuck in the present. My future with Parkinson’s is the same as your future without Parkinson’s; namely, it is an unsettled future. Parkinson’s is progressive but so is life. We are all walking in a dark place with a torch that illuminates only a few metres ahead of us; we predict precisely because we cannot see into the distance. It just happens to be that I can anticipate more than others but such anticipation is not actual or currently part of me. I see only vague shapes in the darkness. I want these shapes to be real, even if they devastate me, because it is preferable to not knowing. But no one knows for certain where I am going with my disease. This isn’t wilful blindness on my part; it is acknowledging we are all blind when we “see” the future.

An example of Parkinson’s logic

Try to get your head round this one: the goal of coping with Parkinson’s is to promote the lack of deterioration of my symptoms. I am in a situation where lacking is a gain; staying where I am is as good as moving; improving is redefined as keeping what I have; positive is merely lacking a negative and nothing more.

This is the illogic of Parkinson’s…and it is starting to make logical sense to me. Imagine a glass half full of water and by doing, for example, exercise I add water to the glass. Under normal circumstances the volume of water would gradually increase. However, Parkinson’s has a straw and is sucking out the water; therefore to maintain the same level of water requires the same effort that would normally increase the amount. But within Parkinson’s increase means trying to replace what has already gone.

Keep your distance from the Emotional Bonfire

We all have an emotional bonfire inside of us. The intensity of the fire can range from warm embers to a raging blaze. The heat of the bonfire radiates in all directions and the closer you are to it the more likely you are to get burned. The bonfire can be made of any flammable experience or memory you may have and the more painful the experience the more intense it will burn but the slower to be consumed by the fire.

It is important to remain at a distance from your emotions so the heat doesn’t become your only focus. This doesn’t mean trying to ignore or suppress the bonfire because by doing so you are still fully engaged and moving towards the fire. Distance means living alongside your emotions and not always being convinced by what they have to say; not feeling the heat as hot. For example, fear of an imagined spider and fear of a spider actually crawling in front of you is the same. Therefore, emotions lack any interpretive ability; they say yes to everything no matter how inappropriate. 

The fire is indiscriminate in what it burns but it only generates heat if we believe it to be hot.

Equal effort, different pay-off

Coping with a diagnosis of Parkinson’s and reflecting on the daily Parkinson’s grind in a helpful, positive way is hard; it requires discipline, concentration, emotional energy and sometimes stubbornness. All of this requires large amounts of energy, which is a challenge to find since a symptom of Parkinson’s is lack of energy.

Reacting in an unhelpful, negative way to Parkinson’s is equally effortful as a positive reaction; the negative also requires discipline, concentration, emotional energy and sometimes stubbornness. The negative and positive makes the same demands on you. Crucially, the negative eats itself and grows stronger; it narrows the view you have of the world and is only interested in itself. On the other hand, the positive expands possibilities and generously provides sustenance for you; it grows strong with you and not at your expense. Why not use your limited resources to be positive?

I can be very stubborn. I can stubbornly stand still in my negativity; “I refuse to move.” Equally, the same source of stubbornness can be used to continue my evolution and my journey; “I refuse to stop.”

The choice is yours…

Cognitive incline not decline in Parkinson's

I still have my mind!!! I’ve just attended a fascinating evening class where we discussed the various definitions of Impressionism (the art movement centered in Paris from 1860-1900); whether the subject matter (the content; modern life) or the way the paint is applied (the form) is more important.

Despite my Parkinson’s I can still think and learn and be challenged by ideas. By attending the class I am on a cognitive incline. I gain great pleasure in learning and questioning my preconceptions and expanding my mind.

It is possible (i.e. not certain) that my Parkinson’s will cause cognitive problems. Even if this happens in the future, I still have my cognitive abilities now and I’m determined to use them now.

If I do suffer cognitive problems I think it is emotionally unhelpful to describe it as a decline. Just as my art class is causing me to climb towards an answer, the same will happen if I have cognitive problems; I will have to climb up a cognitive incline to get to an answer.

A lot of focus in Parkinson’s is on what is taken away by the disease because this has the greater emotional impact. But little attention is paid as the disease progresses to what remains in place. There is disability within Parkinson’s but little talk of ability within Parkinson’s; this is important to acknowledge because our remaining ability can be used to help us develop ways to alleviate the disability.

Learning to live with Parkinson’s

We live in a society that rewards consumption and instant gratification, the fulfilment of which must be packaged, stamped and shipped without delay or error. This extends to the consumption of education as a means to only pass exams. Exams are a set of hurdles that you must get over in a limited period of time; if you hit one and you stumble your race is seen as over. To justify this approach requires the instigation of the mentality that there are no second chances; you must get it right first time.

This mentality has inappropriately seeped into many aspects of our lives and placed us under immense pressure that is not always justified. It ignores a fundamental aspect of our being; there is always something left to do. There is no perceived "failure" that is absolute; a new day will dawn in the morning…

There is no rule book that prescribes how to deal with Parkinson’s, disability or life in general, which can then be thrown at you when you get it “wrong”. Life needs to be lived to enable you to learn how to live a life. We should be taught to be our own teacher in life and be open to the process of learning, including:

You don’t have to get it right first time…

In orbit around my body

I used to be in a close and regular orbit around my body; like a satellite going around the Earth beaming my conscious will into the TV’s watched by my body, which is how I tell my body to move.

Parkinson’s has emerged and made my orbit irregular; sometimes the satellite is close to my body and the signal gets through but sometimes it is far away and the TV picture is intermittent and weak. Medication can boost the signal but it does nothing about the increasingly irregular orbit my mind forms around my body.

Its snowing Parkinson’s

Big snowflakes are continuing to fall from the leaden sky. They tumble in the air and gently land on whatever is in their path. Snowflake by inevitable snowflake a thick blanket of snow forms and lays heavy on everything.

You stand naked and cold within the snowstorm, knee deep in the snow. You must keep trudging along in the snow, otherwise the snowflakes will cover you completely. Snowflakes even land on your eyelashes and you blink them away. Cold weariness infects your every movement.

Parkinson’s continues to fall as if from the sky and lays heavy on everything…

Risking being yourself with Parkinson's

I’ve found the most frequently commented on and noticed physical symptom of my Parkinson’s is my tremor; it is more apparent than my rigidity or slowness, which are more noticeable as a feeling inside me based on memories of better movement; a tremor allows for a more external and physical comparison with those without a tremor.

In a sense my tremor sends out advance warning that there is something different about me. I only arrive as a person (and not as a disease) after the tremor has set up initial communication. Other people are free to greet my tremor as me without noticing the marching band playing the music of who I am, which accompanies my later arrival. This is an inevitable risk of meeting new people: others might judge me or reject me based on my symptoms. However, that “might” includes a “might not”; others may see me alongside my symptoms. 

The only way to eliminate the possibility of rejection because of Parkinson's is to hide yourself away, therefore discarding the possibility of acceptance; thus, rejecting yourself before anyone else can.

Anyway, why would you want to spend time with someone who only sees your symptoms?

“Let be”

Like Parkinson’s sufferers, Hamlet is burdened by the unveiling of the truth. In Hamlet’s case he learns who murdered his father; when I was diagnosed with Parkinson’s I learnt that my expectations of a future had been “murdered” and at the same time I knew who the “murderer” was.

It is the curse of consciousness, an awareness of the truth that unbalances and weighs down our intentions and purpose. Hamlet is propelled into revenge but he hesitates and becomes lost in an internal dialogue and remains despairingly stationary; I was propelled into mourning for myself and I disappeared into the mist of Parkinson’s, losing myself to all but my engagement with the disease.

Both Hamlet and I became kings of infinite space within a nutshell; we endlessly and obsessively examined every part of the interior of the empty nutshell we had climbed into. We only engaged with one truth and it became the sun at the centre of who we are; such focus severely burnt both of us.

In Act 5, Hamlet reaches an awareness of the nutshell itself and he changes; he no longer engages with only one nutshell: he sees millions of them scattered on the floor and recognises he can choose which one to explore. He gains a detachment and a freedom, thus dissolving the walls of the revenge nutshell and becoming king of infinite space. Hamlet describes this as “Let be”.

I hope to gain my own “Let be” as I learn to live alongside my Parkinson’s.

“The rest is silence…”

Flexibility in Parkinson's

One of the symptoms of Parkinson’s may be rigidity but that doesn’t mean you have to be inflexible. When you hold yourself tightly in anticipation of the onslaught of Parkinson’s you lose the adaptability and flexibility inherent in human beings.

Part of this mental rigidity is welding yourself to specific plans for the future, based on a prognosis that has yet to contain your specific instance of Parkinson’s. A measure of the extent you rely on such plans is to ask, if your symptoms improved how disappointed would you be to abandon your plans? For example, you predict that you will have mobility problems in the future so you immediately on diagnosis buy a brand new mobility scooter and store it in the garage. The scooter, like the prognosis, will become a beacon and a sirens call that causes you to crash on the shore of self-fulfilling prophecy. If you see your future only as a scooter user then a scooter user you shall become; the more rigid in your planning, the more of the map of possibilities you will miss.

Flexibility in your choices reclaims your inherent adaptability and enables you to react to what is happening now. Predicting an inflexible future is like placing a bet on the outcome of a football match and before the match is played claiming you’ve won the bet.

Getting drunk on knowledge down at the lab

Parkinson's UK arranged for sufferers to visit the Parkinson's lab of Dr Flaviano Giorgini at the University of Leicester. Every lab funded by Charity should do this; it puts a human face to the disease and also a human face to the scientists working on a cure. Thank you to Dr Giorgini and members of his lab for an interesting day!

Science is hard work. Thank you to the Giorgini lab and Parkinson's labs around the world who work tirelessly to understand Parkinson's and find a cure. This would not be possible without charities such as Parkinson's UK and ultimately those who support them.

The lab is an interesting place...

Yeast, nerve cells, fruit flies and worms put on their white lab coats and alongside the humans (including Dr Flaviano Giorgini and members of his group) trundle into the different labs; all are ready for another day down the mines of knowledge, attempting to chip away another of nature's secrets.

In each of the four labs, set up for different experiments, bottles of chemicals line the shelves, the white benches are ready to receive the various experimental apparatus and fancy looking machines blink into life. There is a sense of anticipation; knowledge is discovered here!

Yeast work in the first lab. They are single cell organisms that amazingly share their basic cellular functions with humans. They may produce waste gas (carbon dioxide like us) that causes bread dough to rise and waste excretions (alcohol, unlike humans) that get us all drunk, but they also generate knowledge of how genes work. For example, a gene that is mutated in some Parkinson's sufferers, dj1, has its equivalent in yeast so these organisms can be used as specialist tools to extract dj1 knowledge from the mine.

Down the corridor in the tissue culture lab, human-derived nerve cells are grown and carefully looked after; like small children, the cells are washed and fed every day and kept in a clean and warm environment (in this case a 37°C incubator). Sometimes genes are artificially introduced into these cells to produce specific proteins; for example, GFP protein is generated, which gives off green light when light of a certain wavelength is shone on it. Microscopes in the third lab are set up to capture images of these "green" cells; they can show where a protein is or whether proteins interact within the cell. More knowledge is chipped away!

It is important to link what happens inside cells to the effect on the whole organism. This is why fruit flies and worms are employed in the lab. These organisms also have equivalent Parkinson's genes and remarkably when mutated they show Parkinson's symptoms such as movement difficulties.

Each organism and each lab work together to extract the various rocks of knowledge and then the humans have to work out how it all fits together and generate a coherent picture of what is happening to cause Parkinson’s. For example, nerve and Yeast cells found that dj1 protein works in pairs and these protein pairs are required for dj1 to do its job in the cell; which is to mop up the chemical waste products of the generation of energy in mitochondria within cells. Interestingly, drugs can help dj1 to form pairs better. They now hope to test if these drugs lead to less Parkinson's symptoms in mutated flies.

In addition the lab has found that Rab GTPases, involved in transporting proteins around the cell, improve many symptoms seen in Parkinson’s fruit flies, including locomotion problems.

At the end of a long day, benches are cleared of equipment and wiped clean; nerve cells, yeast, fruit flies, worms and humans hang up their lab coats and head home. The labs are ready for tomorrow and another shift at the coal face of knowledge. The lights in each lab are never turned off: the need for such research is too great…

Expecting a future

Parkinson's didn't rewrite my future; it rewrote my expectations of the future. We all make plans for the life we want and lock these hopes into a rigid pattern that acts as a reference and scale to measure our lives. These hopes and expectations can become our “future” and be perceived as the only path we can travel down.

However, we live in a highly complex world with many variables and therefore we live in a largely unpredictable world; we make such elaborate plans and orientate our lives towards the future in an effort to subdue the nature of the world. But the unpredictability seeps through and dilutes our expectations until our future becomes what it is: a currently non-existent, largely unknown series of events. The future is unwritten.

Metamorphosis into a Parkinsect

In Franz Kafka’s “Metamorphosis” Gregor Samsa wakes up to find himself turned into an insect; it is a wonderful evocation of the anxiety of change and disease.

What is Parkinson’s turning me into? Am I forming a hard exoskeleton as I become more rigid in my movement or is my shuffling walk an insect-like scuttling? Like Samsa, I am being separated from my former self by an unstoppable, progressive process and it is this receding into the past of my hopes and expectations of a now false future that is the true loss of my metamorphosis. It’s this loss that allows the space for fear of the future and it is fear that is the main driving force of my insectness as I scurry from place to place, fearful of the shadows of prognosis. But these shadows are portends of nothing real, just one fearful perception of a non-existent future.

So my metamorphosis is fear manifest, which is distorting my expectations of a future; but my future as a person and a disease is currently unwritten and I am holding the pen, even if my Parkinson’s chooses the size of the piece of paper.

Reflecting Parkinson’s

When you look through a telescope at a distant planet you are experiencing the photons of light bouncing off the planet but not the planet as it is in itself; that is shrouded in mystery. Similarly, when I look at a person I am not experiencing them as they are in themselves but only the light that is reflected off them. In other words, experience is indirect and mediated by physical phenomena (e.g. light, sound waves, stimulation of nerve cells etc) unlike the object being observed (e.g. the human body is not a photon of light). Objects in themselves can never be known because knowing requires a knower with an indirect point of view; to know things in themselves means viewing without taking up a point of view, which is impossible. Objects are always experienced as a reflection of their true nature.

What about when I look at myself and with self-awareness recognise myself? Isn’t that experiencing myself as a thing in itself? The experience of my body is still indirect and mediated by physical phenomena; for example, visual experience of myself is mediated by light. If I close my eyes I still sense my body as a possession of myself, but this is dependent on sensory input from my body; I cannot know myself without such input and the point of view constructed out of it. Therefore, self-awareness is from a specific point of view, only the sensory input is internal and external; we have privileged access to inner sensations but this is from a specific point of view (our own) and never as a thing in itself; viewing must be from a point of view. It follows that we will never fully know ourselves despite our self-awareness.

Parkinson’s is a disease with a physical manifestation that overlays conscious control with stereotypical movements (e.g. tremor, blank facial expression etc). In a sense it distorts the reflection of the person beneath the symptoms to those around them; the photons of light bounce off the person at the wrong angle. The viewer of a Parkinson’s sufferer, including the sufferer herself, has to readjust, filter out the distortion, to see a clearer reflection of the person; they are not just a reflection of the disease.

How do Parkinson's researchers discover new knowledge? Part 5

Part 1: http://dialoguewithdisability.blogspot.com/2013/05/how-do-parkinsons-researchers-discover.html

Part 2: http://dialoguewithdisability.blogspot.com/2013/05/how-do-parkinsons-researchers-discover_29.html

Part 3: http://dialoguewithdisability.blogspot.co.uk/2013/05/how-do-parkinsons-researchers-discover_30.html

Part 4: http://dialoguewithdisability.blogspot.co.uk/2013/05/how-do-parkinsons-researchers-discover_31.html

TOOL 5 – Protein interactions

Proteins interact with each other in a vast network of Chinese whispers to activate, repress and control the many functions of a cell. The affect of the mutation may be to disrupt the interactions the protein normally has in the absence of the mutation. How is this studied?

Two genes (a and b) are copied by PCR and inserted into separate expression plasmids. When in cells the plasmids will express the proteins and if they interact A-protein and B-protein will reversibly bind to each other. The cell is then broken up and its contents exposed to a special protein called an antibody, which binds to specific proteins (e.g. A-protein). Therefore, the antibody will grab hold of A while B is attached to A (i.e. Antibody-A-B). The presence of B is seen using an antibody for B that triggers a visible chemical reaction. Therefore, if mutant A fails to interact with B there will be no chemical reaction.

Future treatment

Using the 5 research tools the criminal (i.e. mutation) is identified and a case is slowly built up to understand the extent of his crimes against the cell (i.e. what the mutated protein is doing). Once convicted, the criminal can be rehabilitated using drug treatment to modify his affect and restore the normal function of the cell.