Facial expressions and Parkinson's

Facial expressions are finely tuned movements of many facial muscles; particular sets of these movements act as a social signal indicating a person’s state of mind. Because Parkinson’s affects movement, it cuts across this social signalling by making it harder to form facial expressions; it can make the sufferers face bland, emotionless and appear vacant, in spite of the sea of emotion underneath.

The more control you have handling something the lighter it appears to feel. Therefore, my face can feel heavy and unresponsive as the facial muscles fight the pull of gravity. The lack of spontaneous emotion in my face can lead others to assume I’m not listening or don’t understand, causing them to talk LOUDLY or very…slowly…to…me. Not only does Parkinson’s affect the physical and mental but also the social.

Acceptance II

I believe an important aspect of coming to terms with a diagnosis of Parkinson’s is learning to see space within the disease for being you; your diagnosis doesn’t have to suck the life out of you. There are opportunities for you to adapt to the impact of the disease so Parkinson’s works around you and doesn’t dictate what you can do.

An important step to achieve this is to cease resisting the diagnosis and accept the reality of the situation. This does not mean becoming the disease and stopping being you. What it means is accepting your role within Parkinson’s, which recognises the ability you have to push against the advancing symptoms. In this way you express the person you are and not just the disability.

Mourning the loss of yourself

When I was diagnosed with Parkinson’s I went into mourning for the loss of the person I thought I was and for the loss of the future I expected to have. There is said to be five stages of grief and mourning: -

Denial

My first reaction to being told I might have Parkinson’s was disbelief, “how can I have a major disease like Parkinson’s?” Denial is understandable because Parkinson’s is rare (even rarer for early-onset) and there is no definitive diagnostic test. The diagnosis is difficult for Doctors because Parkinson-like symptoms are present in other diseases; the method of diagnosis is to eliminate these other diseases and by default the possibility that remains, Parkinson’s, must be the cause. Also, due to the complexity of the genetics you are unlikely to have an affected relative so it can be unexpected. It is natural to reach for denial when faced with the challenge of coming to terms with a disease that is chronic, incurable and progressive.

I could move through denial because I was diagnosed by a group of experienced consultants and I can see and understand the symptoms in me. However, the thought does cross my mind that maybe I haven’t got Parkinson’s but I quickly close down that train of thought because it doesn’t help me to cope with the symptoms I do have. Denial is a barrier to helping yourself.

Anger

An understandable reaction to the injustice of Parkinson’s is anger, “Why me?!” Because I reacted to my stammer with anger, I knew such a reaction was self-defeating; by engaging with the anger it becomes a potentially endless fight with yourself because the fact of the disease cannot be changed. I was determined this time to channel that anger into coming to terms with Parkinson’s; the disease is just part of my thrownness and as such nobody (including myself) is to blame and therefore such anger is aimless and can be left to dissipate.

Bargaining

It is difficult to bargain with the chronic, incurable and progressive nature of Parkinson’s. The loss of neurons in my brain is outside of my conscious control and therefore I cannot offer anything to stop this from happening.

Sadness and Depression

Sadness for the loss of who you thought you were can become an all-consuming depression. Having gained understanding through previous episodes of depression, I could overhear my depression as just one of many possible reactions to my diagnosis. I am still free to choose a reaction despite my Parkinson’s.

Acceptance

It is a particular feature of mourning for yourself that doing so means you are still capable of some kind of action. Being diagnosed with Parkinson’s doesn’t mean you lose the ability to choose; the loss of one expected future leaves space for another. There is still something left to do. This insight makes acceptance easier to achieve and brings the mourning process into a better context.

Curiosity and detachment from emotion

Imagine you are a cow with a ring in your nose and you are being dragged around a field by an emotion. Now imagine you are a curious scientist observing the same scene but this time there is no cow; despite this the emotion keeps on pulling and marching around the field.

Emotions are not good interpreters of a situation. For example, the fear you feel is the same when you think of a scary situation, you have a phobia and you meet the object of that phobia (e.g. a spider) or you are being chased by an axe murderer. The differences in these situations are not reflected in the sameness of the emotion.

However, emotions can be powerful experiences and demand you to embrace and act upon them. If you do embrace the current emotion (e.g. fear) you could become impaled by it. As you then fight to get out of the embrace the more the emotion grabs you. This excludes other emotions from reaching you.

How do you prevent being led by the nose by emotion? One possible way is by curiosity; be the observing scientist. Ask yourself, “Why am I feeling this emotion?” or “I wonder whether another emotion or reaction is more appropriate?” Curiosity deals with what is happening in the present, it is open to alternative responses and as such is able to break the monopoly an emotion has over you. To be curious requires you to give yourself permission to question and allow the possibility that your current reaction (which is led by emotion) may not be the best one. Curiosity doesn’t detach you from feeling altogether but it does detach you from the grip of one emotion and opens up the possibility of an alternative reaction.

The discipline of movement in Yoga and Parkinson's disease

Parkinson’s disease is primarily a movement disorder caused by loss of dopamine producing nerve cells in the brain. It manifests as slowness of movement, rigidity and tremor. I was diagnosed with Parkinson’s in April 2012; I was only 33 at the time. I’ve found the disease makes my body disobedient to my conscious intentions; it pushes me away from my body.

Moving with Parkinson’s requires substantial concentration (the type of concentration reserved for complex maths problems!) to initiate, sustain and complete the action. Parkinson’s randomly breaks the movement down into its component parts and requires you to reorder each part. It is a strange feeling when you are so used to smooth, almost automatic, movement. Parkinson’s forces a deliberation to your movement.

Yoga requires of its students a discipline of movement to set up the various poses. It encourages the mind to become clear to allow you to focus on completing a series of regimented movements. Yoga, by focusing on disciplined movement, cuts through the noise of everyday life and reconnects you to your body. For example, yoga lays great emphasis on breathing as a way to take over an automatic function of the body and assert conscious control.

I find yoga to be ideal training to help me control my movement. The deliberation and clarity that yoga requires helps me to become accustomed to focusing my mind on the action of my body. This makes the deliberation that is forced onto me by Parkinson’s much more a possession of my consciousness; I can choose the best way to order my movement. The goal of a specific pose and the precision needed to achieve that goal helps me to inhabit and control my body more, which is beneficial in countering the impact of Parkinson’s.

Parkinson’s pushes me away from my body but yoga helps to push back; it maintains communication between the action of my body and the conscious will that is meant to drive it. Thus, yoga strengthens the feeling I have of a connection to my body.

Authenticity and free will in Parkinson's disease

One aspect of our being-in-the-world is that we share the world with other people. Heidegger, differentiating it from individual experience, describes these others collectively as the “they”. According to Heidegger one way you become inauthentic and feel alienated from yourself is becoming lost in the "they" (or lost in a crowd). What happens when you become lost in a “they” that is substantially different to you (e.g. Parkinson’s sufferers in a crowd of those unaffected by Parkinson’s)? The “they” levels off individuality as you conform to what is expected by the others; what is shared is dissolved in the “they”. If you can’t conform due to something outside of your control (e.g. Parkinson’s), then you are defined by this characteristic; what is different remains undissolved and visible. Another “they” in which Parkinson’s sufferers engage is the unaffected person they were in their past and the same dissolving process takes place.

In our thrownness (which may include Parkinson’s) we are just being authentically ourselves. However, being authentic to your thrownness (or physical being) doesn't mean you have to identify completely with certain aspects of your being (e.g. Parkinson’s). Heidegger says that included in our thrownness is an ability to be "ahead-of-ourselves in our potentiality-for-being". Basically, we can't change our thrownness but we have a choice of how we react to our physical being. Its like thrownness has built a house for you to live in; the house has a limited number of rooms but you are free to go into any room you like.

What does Parkinson’s disease reveal about freedom and free will? Acts of free will require two things, a willing agent and a malleable substrate that is acted upon. It feels with my Parkinson’s that I can will my arm to move but it only responds sluggishly. So, my free will is intact despite my Parkinson’s but the connection to the substrate (i.e. my body) is affected; my mind is free but the link to my body is becoming restricted. Therefore, free will can be restricted in itself or free will is intact but the transfer of that will to the substrate is restricted.

Heidegger says that a characteristic of our being is there is always something left to do, something for free will to act upon or try to influence. Even with Parkinson’s we are still compelled by our being to wander around the house of our thrownness, trying to exert our free will.

The hidden symptoms of Parkinson's

If you happen to come across someone with Parkinson’s (we are out there!) you are likely to notice the tremor and the shuffling, unsteady walk. The symptoms you won’t see are the feelings of restricted movement, the frustrating disobedience the body has for sufferers’ conscious will and the subsequent feeling that you are a puppet whose strings are controlled by Parkinson’s. You will miss the sheer mind numbing exhaustion, the feelings of helplessness and depression, the urge to urinate every 5 minutes, the food that gets stuck in your throat because swallowing is affected, the irresistible sleepiness and the battle not to close yourself down in the face of all this.

What is visible is the physical impact of the disease. What is hidden is the one-to-one dialogue a sufferer has with their Parkinson’s. The disease can dictate the conversation or you can reassert yourself and get your voice heard. This internal dialogue is the battleground on which the defeats and victories against Parkinson’s are played out; it is where you can choose your reaction, see space for yourself and live alongside your disease.

Why is the substantia nigra specifically affected in Parkinson's?

The underlying cause of Parkinson’s is the loss of dopamine producing nerve cells in the substantia nigra, a structure of the brain. This raises the question, why aren’t other cells of the body also affected?

We have 30,000 genes (which are made of DNA) in each cell of our body; we may be carrying mutations in one or more of these genes that make us susceptible to a disease. If we compare a skin cell with a nerve cell, both types of cell have the full complement of genes inside them. What is different is that the skin cell has activated a distinct subset of genes (these genes are said to be “expressed”) while the nerve cell expresses a different subset of genes. The action of these different sets of genes imparts the distinctive characteristics of a skin cell and nerve cell. Nerve cell genes are present in skin cells but they have no effect because they are switched off (i.e. they are not expressed). It is the same with skin cell genes in nerve cells. Incidentally, the generation of cloned animals from adult cells is made possible because cells retain all their genes; part of the cloning process is resetting all gene expression back to zero to allow all cell types to develop in the clone. If skin cells had only skin cell genes then cloning a skin cell would end up with a cloned animal made of only skin cells!

Back to the question! Nerve cells naturally express nerve cell genes. If a mutation is present in a skin cell gene (and it disrupts normal function of that gene) it will not affect nerve cells because the gene is switched off in these cells and has no influence; a faulty light bulb has no effect if it remains switched off. The mutation will, of course, affect skin cells. Therefore, the substantia nigra is affected in Parkinson’s disease because mutations are present in nerve cell genes specifically expressed in the substantia nigra.

Young onset Parkinson's - being a rarity in a rare disease

Parkinson’s disease normally affects people over the age of 60 (at this age the disease is called late-onset). About 1 in 20 Parkinson’s sufferers develop symptoms before they are 60 (in these cases the disease is characterised as early-onset). At the time of writing this, I am 34. I am a rarity in a rare disease. I like to think I’m special!

A sign of how unusual it is at my age to be diagnosed is what happened the day I was finally told I had Parkinson’s. I attended hospital and was ushered into a small conference room. 15 chairs, occupied by Consultants and Junior Doctors, were arranged around the seat I duly occupied. As I looked around at the various Doctors, their faces expressed sympathy and scrutiny; they were looking at my every move. I thought, “One Doctor would have been enough!” But I understood that rarity is harder to diagnose and professionally more interesting for Doctors. My Consultant presented my symptoms and the opinion of all those present was I had younger than most, early-onset Parkinson’s. When the proclamation was made I felt relieved; waiting for the diagnosis was like repeatedly walking up to an automatic door and it not open for you. I knew, if I had Parkinson’s (I did!) that I had to start the business of accepting it; you can’t move forward with a “might!” In the end, I was grateful for the collective opinion that day because it removed any doubt in my mind over the diagnosis.

Telling somebody they have a disease doesn’t create that disease in them so a diagnosis doesn’t create or change your symptoms. But it does change the context of your life. I could have raged against my diagnosis (especially being so young) but I knew from my stammer that such rage is self-defeating. I am just being me in my thrownness, diagnosis or not.

One of the consequences of having early-onset Parkinson’s is most of the other sufferers I meet will be older than me. Despite my popularity among the Doctors on the day of my diagnosis, rarity (even among sufferers of a rare disease) can be isolating. When I was diagnosed with Parkinson’s I felt almost a pressure to conform to the disease; as if I was given a Parkinson’s uniform to wear and told “you must act like this now”. I felt typecast. Part of the early-onset role is dealing with the preconception of others that Parkinson’s is an old person’s disease. I will also have to be aware of my preconceptions. I could think I am “old before my time”, causing me to forgo the next 27 years. But, the context you find yourself in doesn’t necessarily have to define who you are. 

Reacting to a Parkinson's diagnosis

It is natural to rage against unfairness and injustice when faced with a diagnosis of Parkinson’s. But such rage is self-defeating; it is based on someone being responsible for your thrownness (which includes Parkinson’s) but thrownness is blameless. Such targetless rage is therefore potentially endless. How do you choose to react differently?

Reacting differently is built upon the recognition that there is space for an alternative. If rage is seen as the only legitimate reaction, backed up by the immediacy of powerful emotion and habitual thinking, then the recognition that it is only one possible reaction won’t be achieved. To see the space available requires you to also be in the audience to your own thoughts and to question everything.

Emotions are powerful but inaccurate mediators of a situation; they deal in broad brush strokes and tend to narrow thought and demand immediate action. But, even in the midst of emotion the mind can still work with a finer tipped paint brush to determine in greater detail the implications of a situation and a path through it. Emotions can become self-perpetuating if they are not challenged by thought; for example, negative emotions generate negative thoughts that, in turn, generate negative emotion. The pivot in the perpetuation of emotion is thought; this gives us the opportunity to change emotion by changing our thoughts. The supremacy of emotions needs to be challenged since emotions may not be the best interpreters of the situation you are facing and thinking differently can change emotions.

Extracting yourself from the demands of emotion is difficult yet important in choosing a reaction. Stepping back and seeing space for you to impose your mind and voluntarily move into a reaction, while resisting being led by the nose to where emotion wants to take you, is crucial. This does mean that you take responsibility for your reaction. However, you continue to be in the audience to your thoughts to monitor and change you reaction if it becomes necessary.

Learning to ride the Parkinson's horse

Dealing with Parkinson’s disease is like riding an unruly and unpredictable horse. Some days the horse cooperates and the journey through the day is smooth and steady. Other days the horse can become agitated in the morning or sometimes in the evening, making that part of the journey bumpy and uncomfortable. On bad days the horse is raging and uncontrollable, eventually kicking the rider off. Because the Parkinson horse is the only means of transport available, on these days you have to pick yourself up, nurse your aching bones and climb back on the horse.

As you learn the day-to-day challenge of Parkinson’s you get to know the personality and tolerance of your own Parkinson’s horse. You learn when to gallop, trot or slow to a walk and how to keep your balance on the horse. You also learn how to pick yourself up when you are kicked off. This is the challenge of living with Parkinson’s disease.

Aiming for perfection

I used to accept nothing less than perfection. Perfect speech, perfect work, perfect grades, perfect happiness were my obsession. I now realise perfection is an utterly empty concept. 

Achieving perfection requires knowledge of the achievement (you can’t claim an achievement if you don’t know you’ve achieved it), which means seeing the perfect achievement as belonging to you. This knowledge can only be gained by seeing the perfect thing. This means perceiving the perfect thing perfectly (e.g. at all angles and at all times simultaneously). However, this type of perception is impossible because we view the world from a unique point of view. Kant says that how we view the world limits what we see. An obvious example of this limitation is we cannot view the world from another person’s point of view, which is a requirement of perfect perception. It follows that we might achieve perfection but we will never know it!! Perfection is an unknowable goal.

I think aiming for perfection is unfair and cruel because you will always fall short of something you cannot know. It is much better to try your best and remain open to learning from what went right as well as what went wrong.

Opening up language opens up the world

The Austrian philosopher Ludwig Wittgenstein argued that the way we think about the world and report to others what happens in the world is limited by the language we use. Indeed, he stated that the limit of language is the limit of the world. Inspired by Kant’s proposal that the viewer imposes structure on the world (e.g. the manifold sense data we receive from our senses are sorted and organised into predetermined structures that we then experience as the world), Wittgenstein proposed the speaker also imposes the structure of language on the world (e.g. the world is logical because the language we use to describe it is logical). Everything in the world that does not fit into the logical structure of language is left unsaid and therefore unknown and unknowable. This emphasis on the active role of the viewer/speaker gives us the flexibility in shaping our own perception of the world.

It follows that speaking negatively inevitably creates a negative world. Sometimes a negative reaction to the sense data we receive is appropriate. But only reacting negatively reduces the size of our world. In contrast, opening up the language we use opens up the world and generates the possibility of knowing the world in greater depth. We must use both positive and negative descriptions to fully inflate the world.

Genetics of Parkinson's disease

Important things to note:

A “genome” is all the genetic material that makes a living organism; genetic material is made up of DNA, comprising four chemical bases A, T, C, G. A “gene” is a string of A, T, C, Gs with a distinct function; each gene makes a protein and proteins form the building blocks of cells. The human genome is made up of 3 billion chemical bases arranged into 30,000 genes separated from each other by long stretches of DNA that doesn’t make protein. We inherit two copies of each gene, one inherited from our mother and one from our father.

We all carry changes in our genetic material called mutations; for example, a normal gene, AATTCCGG, can be mutated into AAATCCGG (the first T has changed into A). Most mutations are harmless but some disrupt the function of genes (e.g. they can alter the protein made by the affected gene). Our close relatives share most of our mutations with us, while distant relatives do not.

Discovering disease genes

Most of the mutated genes identified as causing a disease are found in rare families with lots of affected close relatives. This suggests that the same causative mutation is in each affected family member but missing in those unaffected by the disease. Studying these families has the great advantage of reducing the number of genetic changes that could be causing the disease because each family member will carry similar mutations; the needle is in a smaller haystack. In contrast, there are many different mutations in the general population, making it very difficult to identify the causative mutation by studying whole populations; the haystack is huge!

To identify disease genes, the genome is “mapped” to discover regions shared in affected but not in unaffected family members. This is done by identifying distinct motifs or signatures in the sequence of DNA (e.g. AT repeats, ATATATAT) in known regions of the genome; if these motifs are shared among affected individuals then genes within this region are more likely to carry the causative mutation.

Once a region has been identified the genes within that region can be read (by DNA sequencing), revealing any mutations. If a mutation is found only in affected family members, it is likely that the mutated gene is important in causing the disease.

The difficulty of subtle genetic effects

The procedure for identifying disease genes just described is powerful when the mutation has a large genetic effect; there is a direct link between the mutation and the disease. However, in complex diseases, such as Parkinson’s, mutations are likely to have an indirect link to the disease and exert a more subtle genetic effect (regions containing mutations are likely to be missed when mapping). For example, it is possible that Parkinson’s disease is caused by lots of mutated genes, each with a small effect, coming together and exerting a cumulative effect. This complex inheritance is very difficult to untangle; there are many different haystacks to search. One way to identify multiple genetic factors is to sequence every gene of affected individuals. This identifies lots of mutations but most will not be responsible for the disease. A laborious process of validation in cells will have to take place to identify causative mutations.

Understanding the effect of mutations

It is not enough to just identify a disease causing mutation. Further work is needed to understand what effect the mutation is having on the normal function of the gene. Is it abolishing the function of the protein made by the affected gene or just diminishing it? It is also possible for mutations to make the protein hyperactive or take on a new function altogether. To understand how the altered gene function is causing a disease the context of the cell must be considered; does the protein normally interact with other proteins and is this disrupted by the mutation? Does the protein switch on a particular function of the cell and is this missing in people with mutations? Mutations do not happen in isolation; they occur in and potentially affect the complex functions of the cell. If genetic diseases are to be understood and tackled by new medication, it is crucial to understand what the mutation is doing to the normal function of the cell.

Genes identified in Parkinson’s

Genetic diseases come in two different varieties, dominant and recessive, depending on whether one or two copies of a gene need to carry a mutation to cause a disease. Dominant disease occurs when only one copy of a gene is mutated. In contrast, a recessive mutation needs to be present in both copies of a gene to cause a recessive disease.

Progress has been made in identifying both dominant and recessive mutations that cause Parkinson’s disease:

α-synuclein – dominant mutations cause inappropriate clumping of α-synuclein protein into Lewy bodies, a common feature of nerve cells in the brain affected by Parkinson’s

LRRK2 – dominant mutations cause LRRK2 protein, which normally interacts and carefully switches on other proteins, to activate proteins inappropriately.

Parkin – recessive mutations disrupt the control Parkin protein exerts on the levels of particular proteins in the cell

DJ1 – recessive mutations make mitochondria (energy producers of the cell) less able to cope with oxidative stress (a natural effect of energy production), leading to cell death and loss of nerve cells in the brain

PINK1 – recessive mutations affecting PINK1 protein, like LRRK2, cause inappropriate activation of other proteins

All of the genetic causes of Parkinson’s somehow (this is currently unknown) cause the death of dopamine producing nerve cells in the substantia nigra.

There is always something left to do

Since my diagnosis I have made the transition from feelings of disbelief, claustrophobia, agitation, confusion and mourning to a calmness of thought, acceptance, understanding and recognition of space to be me. Three different types of “fuel” have powered this transition. First, realising that even within Parkinson’s my mind is free to react in a helpful way to what is happening to me. Second, Parkinson’s is part of my thrownness and as such nobody is to blame; I have Parkinson’s but I am not responsible for the possession. This has diffused the self-defeating rage at the diagnosis. Third, I am open to seeing all sides of the problems I face; my stammer and depression have had a positive influence on my life by teaching me how to cope with my Parkinson’s. In turn, I am grateful to my Parkinson’s for teaching me this insight. Problems are three-dimensional shapes that can be handled and not an impenetrable fog that surrounds us.

These “fuels” are all tapped from the same source, the Heideggerian principle of a potentiality-for-being. When we were thrown into the world the throw had momentum; after we were born we continued to develop into children, teenagers and adults. It is crucial to recognise, as part of your thrownness, this potential for further being and the continuation of the momentum generated by being born. In other words, during life there is always something left to do. Parkinson’s may modify the momentum but it doesn’t stop the potential for further being and further opportunities to choose, learn and develop.

Parkinson tiredness and the fear of being useless

There was nothing I experienced prior to the emergence of my symptoms that is like Parkinson tiredness. Have you ever been caught in the rain and gotten soaked, your clothes clinging to your skin? Parkinson tiredness is like having a personal rain cloud that drenches you with a tiredness that never dries out. As a result, initiating and controlling movement becomes more challenging. This is because with Parkinson’s good movement requires a large amount of energy and if the petrol in your tank is running low you cannot supply the energy needed. The petrol is also used up quicker when its low until you cannot resist falling asleep.

The presence of a potentially consuming tiredness and (one interpretation of) my disability led me to a fear of being useless, a lump asleep in the corner unable to do anything. I felt agitated and had the need to be constantly active, even when my petrol tank was bone dry. Having rests seemed to encourage uselessness! But then I overheard my fear and realised by running my tank to empty made me a lump asleep in the corner. My strategy was causing the thing I feared! Taking regular, sensible rests enables you to dry off a bit from the tiredness, fill up your petrol tank and therefore be useful.

A truth of biology

It is a truth of biology that if it can go right it can go wrong.

Billions of things go right in your body at every instant of your life. It is not surprising, given the enormous number of functions at the molecular, cellular, tissue and organ levels needed to sustain life, that things go wrong sometimes. The severity of that “wrong” depends on how much it deviates from normal and how foundational the affected function is. The loss of nerve cells in the substantia nigra in Parkinson’s disease is a very severe loss of function. This has a very significant impact because the substantia nigra is foundational for the initiation of conscious movement, which is crucial to navigate our physical environment and the society we live in.

CBT and the mental challenge of Parkinson's

The major challenge of Parkinson’s is the chronic nature of the disease and the need to live with and adapt to its changing nature. The emotional impact would be less demanding if treatment of the physical symptoms was better but, alas, we all have to live now with the disease and the treatment available.

From personal experience, I was told I might have Parkinson’s in January 2012 and I was finally diagnosed in April 2012. That three month wait was the most exquisite torture. I felt glued to the floor. I couldn’t get on with my life or start the process of coming to terms with the disease and I wasn’t able to access any services because I was yet to be diagnosed. I had to deal with the emotional impact of Parkinson’s without any professional support (I was already, without knowing the cause, dealing in my own way with the physical symptoms prior to my diagnosis). I tried accessing my local mental health services but was told there was a nine month wait. It was a despairing and desperate time.

The way I found to cope with the mental impact of Parkinson’s was to try cognitive behavioural therapy (CBT); I met a brilliant private therapist who has offered me the tools and strategies to reassert myself in the face of Parkinson’s. I believe all sufferers and their families, from the moment the possibility of Parkinson’s is raised, should be offered therapy.

Therapy is a confidential place where you see an unbiased, supportive person who gives you the time and space to explore your thoughts and emotional reactions. They will also gently challenge your automatic patterns of thought and offer strategies to help you think and feel in alternative, more helpful ways. Sometimes we get lost in the minutiae of Parkinson’s so it’s beneficial to be reminded to look up from the Parkinson’s microscope and see the whole person you are. You have to be open, honest and work hard, successful therapy is based on how you respond and learn.

Don’t dismiss therapy because it can’t eliminate the fact we have Parkinson’s or the decline we are facing. But taking tablets also doesn’t offer a cure so why do we take them? Obviously to reduce the impact of the disease. Therapy is designed to do the same but in a much more personal and empowering way. The best therapy gives you the tools to be your own therapist. You can’t think yourself cured but you can think yourself to a better, more productive and helpful emotional relationship with Parkinson’s.

Impacting the physical and mental

Whether you believe the mind and body are separate entities or two descriptions of the same thing, I think experience teaches us that the physical gives rise to a mental response (e.g. breaking your leg causes the experience of pain). Therefore, the changing physicality in Parkinson’s inevitably impacts the emotions of a sufferer.

In the absence of a cure, it is equally important to treat the mental impact as it is to treat the physical symptoms. Treating the physical only goes half way in coping with Parkinson’s; it doesn’t address the problem of living with (and ultimately living alongside) the disease and setting up a helpful emotional relationship with the physical changes caused by Parkinson’s. The mental is the source of motivation and planning and strategy, all crucial things when coping with a disease. If the emotional impact is marginalised these key parts of the arsenal used to tackle Parkinson’s will be neglected, thus making the physical even harder to deal with.

Parkinson’s impacts the physical and mental. Therefore, both should be tackled with treatment to enable the sufferer to live with this chronic disease.

Overhearing Depression

It is natural to feel sad sometimes (e.g. when you are diagnosed with Parkinson’s). But depression is different. Depression is a draining of colour from the world. It is the insidious seeping of malignant sadness and negativity until it infects and subdues your entire emotional life. I find that my depression loves to gorge on itself, like the snake that eats it own tail, to make itself stronger; negativity begets negativity. Depressive thoughts constantly try to convince you they are the only possible thoughts. They cause a narrowing of perspective that is difficult to resist until depression is all you see.

The key I found to coping with my depression is to overhear depressive thoughts as depressive and not just another thought. I use an analogy to help me visualise this: -

I am on stage reading the script my depression has written for me and sometimes I get lost in the role, reacting immediately to what the script demands of me. However, I am also in the audience watching the performance, free to critically appraise the thoughts and actions that are occurring.

Recognising you are performing the depressive role (“O, that’s a negative thought”) opens up the possibility of separating yourself from the depression and seeing a more rounded and balanced point of view. My depression can be very claustrophobic so gaining distance from the negativity is beneficial for me.

What does Parkinson's feel like?

To the non-sufferer, the list of symptoms associated with Parkinson’s disease can be just another list, an objective assessment of what somebody is going through. However, a list of symptoms tells only half the story. What is missing is how those symptoms feel. It can be difficult for a non-sufferer to walk in the shoes of a person with Parkinson’s. Even for a Parkinson’s suffer it can be daunting to learn what affect the disease is having (those shoes can pinch for a while!). Symptoms can appear to be getting worse as you learn; in fact, your symptoms are the same, you are just becoming increasingly aware of them.

So, what does Parkinson’s disease feel like? I can best describe my Parkinson’s using an analogy: my mind is swimming in water while my body is swimming in treacle. It feels to me that there is a disconnection between my mind (which is agile and free) and my body (which is slow and restricted). The wire connecting them has become faulty, allowing only intermittent signals through. Imagine you are standing in front of a full-length mirror and you will your arm to move. In your mind’s eye you expect an immediate, smooth response. What you feel and also see in the reflection is different; the arm isn’t cooperating, it moves as if pushed by a snail. You quickly pour sustained concentration into the engine and the snail reluctantly picks up the pace. The movement is finally completed. It feels like you’ve moved your arm ten times; special offer = 1 for the price of 10! Such is the economics, restrictions and feel of Parkinson’s.

Scientific research and the sufferer

Scientific research into a particular disease is often conducted in what seems like an abstract manner, impenetrable to the sufferer of the disease. This is partly due to the complexity of the disease and the science needed to understand it. Another important factor is in research the state of knowledge fluctuates and is rigorously debated until only much later is a consensus reached. Also, research is predicated on there being unknowns (why else research them?), meaning that science, by its very nature, currently doesn’t hold all the answers. This can be very frustrating to the sufferer who wants concrete answers to pin their hopes to.

It is also due to how the science industry works. Scientific research is expensive to conduct; not in terms of scientist’s wages (which are relatively low) but in terms of very high reagent and equipment costs. The strange payoff for the many hours in the lab and the billions of pounds spent is the prestige and glory of getting your work published in a “good” journal (i.e. well referenced by other scientists). The editors of such journals have immense power in science; their decision to publish can make or break the career of a scientist. This is because the next round of funding to pay for research is dependent on reputation, which is mainly founded on the number of “good” papers a scientist has.

In the scramble for publications and the competition for limited funding, the sufferer can become a vague presence. No doubt the intentions of the scientist are founded on advancing knowledge to alleviate suffering. Research is hard, precarious work; a scientist also has to be lucky. But the day to day business of research is engaged in generating papers to justify the next round of funding. It is an open question how compatible the intention and actual business of science is.

Sufferers want the “coal” produced by research to stoke their fires of hope while researchers are busy at the dark coalface. It is important for the two to meet. Sufferers should engage with research and hold researchers to account. Researchers should keep in mind that their work describes the suffering of real people.

Feeling guilty

The Parkinson sufferer and their family and friends can all feel guilty about the presence of the disease. I believe this arises out of feelings of helplessness. The sufferer may feel guilty about unintentionally burdening their family and friends with the difficulty of the disease. Family and friends may feel guilty about being unable to help their loved one. I am sure all involved wish that the disease hadn’t touched their lives. But, given the chronic nature of Parkinson’s, this wish, although very understandable, misses the reality of the situation.

What can be done to counter the feelings of helplessness? Heidegger’s idea of thrownness can be useful here. Thrownness describes the state in which you exist. Examples of thrownness include whether you are male or female, have dark or light skin or are susceptible to Parkinson’s. These things were laid down before you were born as part of the process that threw you into the world. No one could have changed these characteristics. Thrownness is blameless. No one should carry the guilt of blame. The state in which you exist just is.

It may seem strange but the major part of what you are was created without any conscious control (yours or anybody else’s). This seems to increase the helplessness! However, there is a crucial aspect of our thrownness the feelings of helplessness ignores. We can react in the right way to the situation; this is where real control resides. Thrownness, because it includes this ability, is not a rigid life sentence. There is space for individuality within your thrownness. You can’t control what you are but you can control who you are.

With this in mind, maybe the sufferer and their family and friends can empower themselves by learning about Parkinson’s, approaching the challenges with openness, honesty and mutual support, showing each other that the disease is manageable and can be adapted to, that life continues after a diagnosis. Therefore, all involved can feel empowered when walking on Parkinson’s terrain, ready to react to what is encountered along the way!

Feeling shame

It seems to me that feelings of shame about Parkinson’s are based on a sense of responsibility for the condition you are in (or your inability to change it). However, there is a difference between having something and being responsible for that possession. For example, you had two eyes when you were born but you didn’t consciously choose to have two eyes. That part of yourself just is. The same with Parkinson’s; you didn’t choose it, nobody did. Therefore, if you judge yourself for having two eyes (or Parkinson’s disease), such a judgement is absurd because it judges nobody. Feelings of shame are not justified for such elements of thrownness.

Shame is usually felt in the context of other people and what they might be thinking of us. We can’t do much about the views of others, they are free to think what they like. You may have the juiciest, best tasting apple ever grown but when you offer it to somebody they can refuse to take it; some people just don’t like apples!

Shame can understandably lead us to try and hide our Parkinson’s in an attempt to confine and control our feelings. Telling others risks loosening that control, like releasing a kite on a windy day for all to see. It must be a personal choice whether to fly the kite. You may encounter positive, negative or indifferent responses. The opinion of others doesn’t have to dictate how you see yourself. The important thing is how you respond to their response. I found trying to hide my tremor exhausting and people noticed it anyway. I prefer to be honest and open about my Parkinson’s to remove any uncertainty in the people I meet. I think I’m able to do this because I know I’m free to react to their response in any way I want to.

Parkinson's and writing this blog

As I am typing this blog I am fighting my Parkinson’s to gain sufficient control of my hands and fingers to press the keys I want; my hands are trembling and my fingers are slow to move. Sometimes, frustratingly, I can’t remove my finger from a key in time resulting iin multipleee lettters appearing on the screenn, which I have to laboriously delete. Every word is typed and every extra letter is deleted with maximum effort and each essay, whether good or bad, memorable or instantly forgotten, is soaked in the same determination and concentration.

This reveals an important feature of my Parkinson’s; I can’t do things with minimal effort or attention any more. Every task and every movement requires concentration and takes longer to complete. This forces me to ration my energy and limits what is on my “to do” list. As a person who used to work without care for the limits of my endurance it is a difficult lesson to learn.

The aim I am trying to achieve now is to manage my energy to allow me to do the things I want to ddo. O, there’s another extra letter to delete…

Meeting fellow sufferers

Prior to being diagnosed, I attended a hospital appointment to take part in some tests to eliminate other potential causes of my symptoms (there is no diagnostic test for Parkinson’s). While at the hospital, I noticed a fundraising poster produced by the charity Parkinson’s UK. It exclaimed, “Join us!” and I thought, “I’d rather not join that club!”

It was an unexpected aspect of my diagnosis when it came (but obvious in hindsight) that I would probably meet other sufferers of Parkinson’s. No disease is rare enough to not affect at least one other person. I found it quite a daunting prospect. I thought I would see a reflection of my own symptoms in the people I would meet. Worse, I would see my future and I wasn’t prepared for that.

I knew I had to challenge my own preconceptions so I attended a Parkinson’s UK open day (I did, in the end, join them!). I still felt my fear. I imagined I would see a Hieronymus Bosch-like vision of hell, a mass of humanity tormented by Parkinson’s demons, people crying out in agony and pain. With this in mind, I took a deep breath and crossed the threshold. What did I see? To my pleasant surprise I saw people chatting and drinking tea. I thought, “I can chat and drink tea too!” Then I felt empathy, as if I had climbed into the same boat with these people. They knew some of the challenges I was facing with my diagnosis and I knew some of theirs. Fellow sufferers are a great source of reassurance and for strategies to cope. True, I saw some of my symptoms in the people I met but it wasn’t my future that was reflected back to me, it was a feeling of empathy finally for myself. Maybe I can cope with Parkinson’s!

Dealing with the preconceptions of others

We all make assumptions and form preconceptions about the incredibly complex world in which we live. It is the only way to navigate such a world. However, some people don’t then go on and question whether such assumptions are valid in a given situation. These people live at the surface of their awareness.

For example, my tremor was particularly prominent one afternoon. I went into a shop and the person behind the counter said to me, “are you feeling cold, sir?” Maybe I missed the joke but I decided to be honest, so I said, “no, I’ve got Parkinson’s disease.” A flood of apologises emerged from the person. He wished me a good evening and I said, “I will and I’ll warm up too!” A little bit of self-deprecating humour showed that his supposed superior response to my tremor was totally misplaced. Maybe I taught him something that day.

Another example I’ve encountered is when people equate my physical disability with my level of intelligence and talk…really…slowly…to…me. I happen to have a doctorate (DPhil) in Genetics from Oxford University so I think I understand what you are saying! Such “do…you…under…stand?” people should assume their listener does understand and then, if the need arises, modify the assumption.

A far harsher form of preconception you may encounter is prejudice, which can be defined as judging people (usually negatively) based on physical characteristics or ethnicity or disability. I believe such a judgement is absurd. We were thrown into the world in a particular state when we were born (Heidegger calls this our “thrownness”). Nobody is responsible for their thrownness; we didn’t choose whether we were male or female, had dark or light skin, were susceptible to Parkinson’s or not etc. Therefore judging a person’s thrownness is an empty judgement; the judgement doesn’t apply to the person being judged. Indeed, it’s a judgement about nobody. Judgements should be made on the basis of who people are, not what they are.

I feel sorry for people who live their lives without empathy and self-awareness.

Acceptance I

Each person’s journey to acceptance of a disability is unique to them but the terrain may have similar landmarks. I will attempt to describe my acceptance of Parkinson’s.

It started with the observation that my physical symptoms made me feel I was living immersed in treacle. Every movement was fighting against the limitations imposed by the disease. It can be distressing to acknowledge your limitations. However, out of this came the realisation that my body may be restricted but my mind is free. I can think and feel and have a rich mental life despite my Parkinson’s. Therefore, my diagnosis hasn’t consumed who I am. Because of the preservation of at least parts of me (both physical and mental), I realised I still have the self-will and power to choose. Importantly, I can’t change the fact of the disease but I can choose how to react to it.

Next came the difficult issue of the prognosis of Parkinson’s. Prognoses are based on the accumulated knowledge of historical cases. Due to its historical nature, the prognosis of Parkinson’s has yet to include my case. Therefore, it can only be a guide to the progression of my disease. Individuals have individual symptoms; mine is a unique instance of Parkinson’s. It follows that a prognosis does not predetermine my future.

This leads to the following conclusion: there is space for me within both the diagnosis and prognosis of Parkinson’s. What should be done with this space? I can make adaptations in my life to resist the physical symptoms. I can also enjoy the mental life this space provides.

It is impossible to accept a diagnosis when it overwhelms you and obscures self-perception. Acceptance comes when you claim a diagnosis as yours and in doing so acknowledge the preservation of who you are within that diagnosis. Acceptance is living alongside a disease. 

What is Parkinson's disease?

As they walked together, the Doctor said to Jonny, “Parkinson’s disease is a neurodegenerative disorder. Specific nerve cells in a part of your brain called the substantia nigra are dieing. These cells normally produce a chemical called dopamine, which activates networks of other nerve cells to ultimately initiate and control your movement. When these so called dopermergic neurons start to disappear the level of dopamine falls, resulting in impaired movement. Unfortunately, you are showing the three major signs characteristic of this loss; slowness of movement, tremor and rigidity. Parkinson’s is a complex disease and it may cause other symptoms, such as fatigue and depression.”

“Nobody knows why these nerve cells die. Prior to dieing cells show large accumulations (called Lewy bodies) of a protein called a-synuclein. There is also evidence that malfunctioning mitochondria (the energy-producing power plants of the cell) are also involved. Somehow these and other events conspire to cause cell death and ultimately the symptoms you are showing.”

“As more nerve cells are lost the worse the symptoms will get. Treatment can help to counter this. The main aim of treatment is to replace the missing dopamine by taking dopamine in tablet form and also making adaptations to your life to make everyday tasks easier and maintain your independence.”

Waiting for a diagnosis

Once upon a time, our hero Jonny was skipping along the road when he bumped into a Doctor. The Doctor said, “You might have Parkinson’s disease!” Jonny was very confused. He tried skipping away but couldn’t. “Tests!” exclaimed the Doctor. “Yes! Tests are the thing wherein I’ll catch the conscience of the…” said the Doctor, who turned into Sherlock Holmes and went on his way. Jonny shouted, “MIGHT?! You said might!! Do I or don’t I?”

Jonny suddenly found himself at a fork in the road. On the left he could see life as it had been before and the future he imagined he would have. On the right he saw a pot holed road leading into a dark, tangled forest. Jonny stood as if made of stone. He waited…

Then one day the Doctor reappeared. Jonny looked at him, “Which road?!” he pleaded. In reply, the Doctor gently took Jonny by the hand and led our hero down the road towards the Parkinson’s forest. The Doctor was saying something as they walked but Jonny couldn’t hear, there was silence in his life and, for now, it was deafening… 

Am I disabled now?

What is it to be disabled? Where does the term "disability" come from?

People are a mixture of thrownness (Heidegger’s description of the state in which we exist), self-determination and circumstances sometimes outside of our control. Within this mix, no person alone can be described as being disabled; they are just being themselves. The term “disabled” arises only when people are compared to each other (including your past self compared to your present self).

Physical and mental disability is considered a lack of ability only because another person happens to have that ability. We live in a wonderfully complex world full of individuals with unique skills and abilities. If disability arises from an act of comparing, then everyone is potentially disabled depending on whom they are compared to. For example, the athlete Usain Bolt is disabled compared to the swimmer Michael Phelps because he physically can’t swim as well as Phelps (and Phelps is disabled when compared to Bolt).

Whether it is Parkinson’s disease, an inability to run 100 metres in under 10 seconds or millions of other reasons, everyone can be considered disabled. Therefore, the division between able and disabled people, which the word “disability” signifies, is a false division. Disability is always a relative term. For example, we all have the "disability" of only seeing light in the visual spectrum but since we can't be compared to someone who can see more of the spectrum its not considered a disability.