Tag Archives: Physiological

A Look Inside

A Look Inside: My Parkinson’s Life in Poetry by me, Dean G. Parsons.

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Pick Your Fight Wisely

I was thinking, today, about the extra financial costs that come from being a person with a disability.  I had received a small catalogue of helpful mobility items and useful gadgets that help with tasks that were once so simple.  For example, battery powered jar openers, tin openers and bottle openers as well as gadgets that help with fastening and unfastening buttons and zips, in clothing.  There are so many very helpful items, a few of which I have been using for the past couple of years, already.

It occurred to me that I was building up a list of around twenty five more of these helpful aids and that I was getting excited about buying them, in a way that I used to get excited about buying new clothes or items for leisure and entertainment!  How did I become someone who would get excited about treating myself to a new walking stick?!  This is a surreal realisation but I regard it with humour and I respond to it with a knowing smile.  Not only did this realisation surprise me, but so did the almost £250 fee for these items, should I decide to buy them.  Thank goodness that, in the United Kingdom, we have Personal Independence Payments to support the cost of being disabled.

Brilliantly designed; everything from a special key holder that doubles as an aid to turning the key in the lock of my front door, a small key that opens cartons of fruit juice on days when I cannot twist the cap, a slider that goes on the outside of a tube of toothpaste and which squeezes the paste up the tube for me, a tea bag squeezer for the moments when I cannot do that myself, a holder for playing cards because holding cards can cause cramping and there can be grip problems, special grips that you can place around pens and pencils for days when my hands cannot maintain the precise guide needed for writing or drawing and even a clampable handle to go on the edge of the bath, to help me on days when I struggle getting out of the bath.  

I will purchase all of these over time for, unfortunately, I do have the need of them.  Not all of them every day, but some of them every day.  What I need varies from day to day or even hour to hour; depending on how my symptoms manifest.  Parkinson’s is one of these diseases where you do not truly know what difficulty you will face beyond as little as the next three hours.  Having helpful gadgets, aids and devices is, to me, good sense.

There are, of course, many stalwarts who like to ‘soldier on’ without buying any helpful tool to make their life easier.  Purchasing such a thing would, in their eyes, be an admission of defeat; an acceptance that they are disabled.  I love a good fighting spirit in anyone but, personally, I always like to choose my fights wisely.  Why make life harder for ones-self when that is unnecessary?  After all, ill health delivers the real fight; the battle for survival. 

No, for me, I would much rather conserve my energy where I can and, instead, use every bit of my energy to fight the bigger battle for maintaining my quality of life.  Why spend fifteen minutes struggling to open a jar or to get out of a bath when a helpful device enables you to achieve your objective nearly as quickly and efficiently, as you once could achieve yourself?

To any reader who may be disabled now, or in the future, I would recommend that you provide yourself with any helpful tools, aids, devices and gadgets that you can.  These will enable you to relatively swiftly carry on with your task, rather than for you to face burning up your valuable reserve of energy, and emotional resilience, as you fight to unscrew a lid!  Stubbornly refusing to accept your new reality is not, in my view, valiant.  It is not sensible use of your time or energy.  In fact, such resistance is not only futile, but it is almost always guaranteed to lead to some form of frustration.

While your ego battles with the label and the harsh reality of disability, your resistance is more likely to push you into denial and depression.  Think about how your disability affects your self-esteem and self-confidence.  You may need to talk about this with someone?

What are your views?  Are you, like me, someone who accepts the limitations that disability causes and, while I always push myself hard initially,  someone who proactively seeks a solution from disability gadgets?  Or, are you someone who ‘soldiers on’ in a struggle that causes you to feel wiped out and frustrated after fighting through every task but who sees using devices and aids as an admission of defeat?

I would find it hard to ever leave myself in a position where I may be in a low mood or frustrated state when there are solutions.  In fact, I simply do not.  I would find it unacceptable to act in a way that leaves me feeling any low mood, frustration or even depression due to not focusing on solutions.  That would also be unfair for those around me.  Accepting disability and ill health is not easy, but creating unnecessary difficulty when there are in fact solutions, and ending up depressed and frustrated, must surely be much harder to bear?  Something that is unnecessary.           

Perhaps the nature of Parkinson’s Disease is that, being largely a hidden illness, using devices and helpful aids becomes the visible evidence that we are disabled and for some, therefore, too uncomfortable to display?  Acceptance may be a step too far for some.  Perhaps the fact that I am so open about being a person with Parkinson’s has removed much of that potential discomfort and has enabled me to, instead, focus on solutions? 

If you meet me, you will simply meet a person who uses a walking stick.  Behind the scenes, I have all manner of helpful gadgets and gizmos!  These help me to be enabled, rather than disabled; for which I am grateful.  Gratitude beats depression, any day.

(C) Dean Parsons. 2018.

 

 

 

Chronic Fatigue Syndrome

One of the illnesses that I have seen clients deeply affected by, is Chronic Fatigue Syndrome (CFS), or ME.  An illness that causes overwhelming tiredness, even after rest or sleep, CFS impacts significantly on the emotional and physical well-being of those who suffer from it.  In those of a working age, there is the added impact of family and working life being disrupted, by CFS, in the crucial years when earning money, parenting and career development are most demanding.

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Photo by Kha Ruxury on Pexels.com

When you ask people what CFS/ME is, they will usually say something about extreme tiredness but many people will not be aware that the illness comes with a variety of physical and emotional symptoms, such as:

  • sleep problems, such as insomnia
  • muscle or joint pain
  • headaches
  • a sore throat or sore glands that aren’t swollen
  • problems thinking, remembering or concentrating
  • flu-like symptoms
  • feeling dizzy or sick
  • fast or irregular heartbeats (palpitations).

(Source; NHS UK).

When people come to see me, they are usually trying to cope with the emotional and psychological impact of CFS.  Many will be suffering increased anxiety, depressive feelings, pessimistic thoughts, low self-esteem and a sense of being defeated by something more powerful.

Some people will come to me because the impact of the illness has caused difficulty within relationships, holding down a job/career and simply managing day to day life.

The work that I do with people living with CFS is to explore their thoughts, feelings and emotions.  I try to help the person to reconnect with who they were before the symptoms began and to consider where there are now genuine limitations caused by the illness, versus a sense of defeat that comes from the effort it takes to simply be.

Together, we explore options for how to live within new limitations, caused by CFS, while also looking at how to retain as much of the desired way of life as possible.  This involves reaching a point of acceptance about the past, present and the future but the focus is on helping the person make decisions about the future, that can then be reinforced by healthy and positive choices, going forward.  For example, my work focuses on taking a ‘What I can do’, rather than a ‘What I cannot do’ approach.

Mind, body and spirit.  Well, you will no doubt heard of these three aspects of being human.  In practice, my work focuses on developing healthy responses to emotions and thoughts and on developing physical well-being through healthier lifestyle choices.  I also look at how a person may gain a sense of spiritual well-being by investing more in connecting with nature, the environment and playing a role in contributing to their local community and society.  Where self-esteem is low, this is important.

Therapy models such as Gestalt, Cognitive Behavioural Therapy, Neuro Linguistic Programming, Humanistic Therapy and Rational Emotive Behavioural Therapy are but some of the methodologies that I use within my work with CFS.  Each individual is different and so, as an Integrative Counsellor/Psychotherapist, I am equipped to use a variety of therapy models and to tailor those to meet individual need; as I do no matter what issue a person comes to see me about.

For some people, the support of a medical professional, such as a Doctor or specialist Nurse is of benefit and so I will sometimes link a person to support through their local Doctor, alongside the work that I do.  Some clients will benefit from being prescribed pain medication and sleeping medication, for example, while working through therapy.

In many cases, I will also recommend a variety of complementary therapies; acupuncture, massage, carefully planned/graded exercise, the services of a nutritionist, Qi Kong, Tai Chi, to name but a few that can be of benefit.  These can run concurrent to counselling therapy or they can be planned to follow.

I would certainly recommend that anyone experiencing CFS aims to contact a support group, over time, in order to benefit from meeting other people with the illness.  This can add a sense of helping the person living with CFS, and their close loved ones, to feel less isolated by the condition, to build a social support network and to simply share what it is like to be a person with CFS.

Counselling and psychotherapy are a great means of either short-term or longer-term support, both in terms of developing coping strategies and in discussing more significant change that may be required, for example considering making changes to work or career and changing key aspects of daily lifestyle.

Help is available.  Contact a local therapist or do go along and speak with your Doctor or Practice Nurse.

(C) Dean Parsons 2018.

 

 

 

One Year On

Today is a day with some considerable meaning, for me.  It was exactly one year ago, today, that I met with my Neurologist and was diagnosed with Parkinson’s Disease.  On that day I felt a mixture of relief at finally getting the clarity of a conclusive diagnosis after a twenty year search for answers, versus feeling a sense of terror at what this new reality would mean for me.

What an incredible year it has been.  There has been the joy at finally being prescribed medication that has helped me regain some of myself; some of my ability.  There, too, has been the ongoing deterioration in so many ways and, although this has been an ongoing deterioration over twenty years of symptoms, the pace at which that deterioration is happening has increased significantly in the last couple of years.  I take nothing for granted today; for each thing I am capable of in any given day is a blessing.

Then, there is the way that family, friends, neighbours and colleagues have all shown me support, love, kindness and compassion.  That has been truly uplifting and I cannot thank everyone enough for the words of encouragement, the moments of kindness and for the general consideration for what both Kevin and I, face together.

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Life has changed so much year on year but the pace of change is fast, now.  The people who have supported us through the very bad days that happen, and will continue to happen, cannot truly know how much their support and kindness has meant to us both.

Parkinson’s has brought me some good things, unexpectedly, too.  I have found a new strength within me; a motivation and I am doing things that I would otherwise have just put off.  For example joining a gym and making going to the gym a part of my life.  Who would have thought?!

New people have come into my life, from around the UK and the world; my Parkinson’s community.  Such an array of wonderful people all united by this common factor between us.  Some have become incredibly good friends and I now cannot imagine my life without them.

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The future remains a very scary place to think about.  This disease gradually steals so much from you.  When I consider how affected I already am, at age 46, I feel quite shocked.  That said, to cope, I focus on what I can do and not what I cannot and I just live day by day, week by week, doing the best I can.  As I deteriorate in more ways, I use every opportunity to grow and develop in some other way and so I keep my life enriched, full and rewarding.

Fortunately, my illness is largely not visible; thanks to my medication at this time.  You would not know that I have Parkinson’s upon meeting me, although you would notice that I use a walking stick.  I am still very active.  I still run a busy counselling and psychotherapy practice, I study and I manage to lead a busy life.

So, how do I feel one year on from diagnosis?  I feel in some way at peace.  I have accepted that I have this disease.  I feel determined to fight for maintaining as much of my ability as I can, for as long as I can.  I feel scared.  The future is filled with potential change that I am unwilling to countenance; though I know it awaits.

I am, however, happy.

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Above all, I feel thankful for the love I have in my life.

(C) Dean Parsons. 2018.

 

 

 

It’s Good for the Brain

Today, I posted on my professional Facebook page about physical well-being and how that benefits psychological health.  Here is the excerpt from my Facebook page: Dean’s Facebook Page

In my role as a psychotherapist, I highlight the merits of physical activity and physical well-being in relation to maintaining positive mental-health.  There is much research that evidences how regular exercise, healthy diet and a healthy lifestyle improve cognitive function and increase the ‘happy’ chemicals produced in the brain.

Today, I am going to begin improving my own physical well-being.  I recently joined a local gym and leisure centre and today will be my first visit.  I will be seeing a Personal Trainer for the first of three induction sessions; each one hour long.  This will be the first time I’ve worked out in a gym since 1988; that’s 30 years ago!! As you may imagine, I’m therefore a little apprehensive.  

New situations and activities can trigger a little anxiety, even in we psychotherapists!  We are regular people, too, and so we know how apprehension and anxiety feel.  The key is to just do it anyway.    Do you know that, physiologically, symptoms of anxiety are the same as symptoms of excitement? The main difference between the two is psychological; the thoughts we have.  So, change anxious thoughts to excitement thoughts and start the process of feeling more positive. This will reduce apprehension and anxiety. 

What can you do to bring more physical activity, with its many benefits to your mental health, into your life?

(C) Dean Parsons. May 2018.

 

Let’s Get Physical

Over the last week, I did something rather extraordinary, for me!  I signed up to membership of our local Leisure Centre! I now have access to use of all of the facilities; including gym, pool and the various classes that run from there.  I have ordered some new gym wear and I have booked myself in for the first of three one hour sessions with a Personal Trainer, later this month.

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Those of my readers who are also family and friends will no doubt be shocked at this news!  Indeed, I am a little stunned at myself for such an out of character decision!  In fact, it is so out of character for me to consider not only going to a gym, but also to attend a physical exercise class with ‘other people’, that I have even wondered whether this is part of a compulsive behaviour that is caused by a side-effect of my Parkinson’s medication!

Then, I remind myself why I have taken this decision.  There are a few serious reasons.  One, is that I owe it to my spouse to do everything I can to remain as mobile as possible for as long as possible.  All of the research suggests that Parkinson’s progression can be slowed by regular exercise.  “Use it or lose it.”, they say.  It would appear to be true, from everything I read and everything that my Neurologist and medical support teams advise me. If it truly is possible to hold off some of the degeneration and disability that lies ahead of me, then I must do that.

Another reason for my decision is that an inspiring friend in Canada, called Tanya Lestrange, has taught me a lot about the benefits of physical activity when living with a degenerative neurological disease.

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Tanya also lives with Parkinson’s and she is a shining example of how maintaining fitness and agility can make a positive impact on life, as a person with Parkinson’s.

Finally, a key part of this decision to actively take up regular exercise comes from my relationship with myself.  I know that, in the future, I would hate to look back at how my life progressed, following diagnosis, and feel remorse and regret for not having done enough; for not having tried and for not having fought this disease with everything I have.  So, I have no choice but to do what is uncomfortable and daunting.  Not doing so would mean that, in the future, I would be disappointed in myself.  That is unacceptable when, as stated above, my illness also affects those closest to me.

Over the past six months, I have lost a stone in weight.  I have achieved this through simple dietary change and by becoming more active.  I made a decision to improve diet and to take up more physical activity and then, day by day, I made healthier choices that matched my decision.  This is working well.

One day at a time.  I have my membership in place for the Leisure Centre.  I have my session with my Personal Trainer booked.  I have my new gym wear on order and I am now just awaiting Monday 21st, to get started.

Wish me luck!  If you have been through/are going through a similar experience, do leave a comment below and share your story.

(c) Dean Parsons. May 2018.

Morning Has Broken.

Morning Has Broken:

My phone alarm goes off at 6.45am, every day; it’s time to take my medication.  This week, the sultry, velvet voice of Ella Fitzgerald singing ‘Summertime’, in a duet with the magical Louis Armstrong, has been my favourite way for the start of each new day to be announced.

Photo of Ella Fitzgerald(Photo: Ella Fitzgerald.  Source: dunderbeck1980 on WordPress.com).

Like the First Morning:

The delight of hearing the voices of these legendary performers initially fills my mind with joy and I forget.  I forget that I have Parkinson’s.  Just for a sweet moment or two, before I move, I feel like the me I was long ago.  I smile as I hear Ella’s soulful rendition that summertime is a time of easy living.  Well, I’m looking forward to summer, in that case.  Then, I try to move my body.

I remember.

Blackbird Has Spoken, Like the First Bird:

Outside, I can hear the birds singing and chirping their vibrant chatter.  It’s just a ‘normal’ day, right?  What is ‘normal’, though?

I look ‘normal’.  Yet, my muscles are tight and cramping, my hands pained and then begins the almost invisible spasm of arm muscles.  My right leg, right shoulder and into the right side of my neck are all tight as if in great tension at the apprehension of a new day.  Pain.  Sometimes the muscles there are set like concrete.  My right foot is sometimes jolted into a cramp as soon as I move it.  My face becomes the expressionless observation post from which I witness the sun shining into the bedroom; hope being delivered by natures light.

I am quiet. I am used to this now.  I always chuckle to myself, even if I feel overwhelmed by the effort, as I somehow manage to swing myself up and round to a sitting position; working my body into gentle stretching in readiness for reaching for my water and medication.  Pain and difficulty.  My main task is not to drop my glass of water.

Mission accomplished.  I lay down, somewhat ungracefully, trying to ignore the back pain and I manage to return to sleep.

Praise for the Singing:

My alarm goes off againElla is back.  She croons a beautiful song; ‘Fly Me to the Moon’, to remind me to get out of bed, for ‘normal’ people are already up and about.

Praise for the Morning:

A little later, in my version of a ‘normal morning’, while resembling an aged Chimpanzee stumbling rather awkwardly over craggy rocks, I manage to slowly make my way downstairs.  There is no elegance in the morning.  Sometimes I ‘just stop’, en-route!

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Seriously! I just stop dead in my tracks!  Still.  Waiting.  Not moving.  I do not choose to stop.  Parkinson’s chooses that.  It’s called ‘freezing’ and is a symptom of Parkinson’s.  It just happens; mostly in doorways or at steps.  This symptom happens a lot.  I just pause, imagining how bizarrely comical this must appear or, sometimes, I am just unable to think.  I just exist.  I cannot make movement happen.  Then, suddenly, my ‘freeze frame’ returns to movement and I continue the painful and slightly ridiculous performance to get myself to the kitchen.

Once there, I aim for a glass of water and, by this time, my next dose of medication.  Tiring.  I let our excited dogs out into the garden and I make my own bathroom pit-stop, as my meds kick-in.  I battle the lingering tiredness as I awaken more fully.  Our dogs head back to their beds until I can give them their breakfast.

 

With our bathroom downstairs, I immediately draw a hot bath; the main remedy for my cramping muscles and painful lower back.  Bliss.  Sometimes I cannot use the bath.  So, I shower.  Sometimes I cannot shower, so I use the bath.  Sometimes I cannot use the bath or shower, so I wash.  These are the decisions that must be made.  I make them cautiously, for I have learnt several times the pain of falling down in the bathroom.

I will refrain from boring your further with a description of how ridiculous, long and complex the act of getting dressed into my clothes is.

All this effort and difficulty, before I even go about my day.

Praise for Them Springing, Fresh From the World:

Are you aware that Tulips are the international symbol for Parkinson’s Disease Awareness?

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Why am I sharing this peek into my morning routine?  Well, April is Parkinson’s Awareness Month and April 11th was World Parkinson’s Awareness Day.  I can put my pride aside and describe aspects of living with Parkinson’s, in the hope that raising awareness may help educate society abut life with disability and life with Parkinson’s.  If that helps even one person to have a better experience in the future, by educating others, then I have achieved something meaningful.

(C) Dean Parsons.  April 2018.

 

 

 

Parkinson’s Meds Side Effects

One of the subjects that people with Parkinson’s have both experience of and opinion about is that of side effects caused by medication.  The possible side effects of short and long-term medication use are well listed within the information leaflets found within medication packs.  Side effects are also well listed and, more importantly,  described on the web site of most leading Parkinson’s charities, nationally, around the world.

What I hear from fellow people with Parkinson’s, however, is that their medical support teams rarely discuss the subject of potential side effects within treatment review meetings.

What treatment/progress reviews are offered to a person with Parkinson’s?

Following diagnosis, the decision to begin taking medication is, for many, life changing and quite daunting.  There is a realisation that doses of medication will have to be taken at various intervals each and every day, for the rest of life.  This almost always involves numerous medications at each dosage time.

The medical teams, led by either a Neurologist or Movement Disorder Specialist, will usually take great care in assessing their patient through a combination of physical examination/observation, questioning and anecdotal evidence provided by their patient.  These activities, alone, usually take up the 15-30 minute appointment that the person with Parkinson’s is offered for treatment/progress/diagnosis review.

In the UK, clinical governance around the diagnosis and treatment for people with Parkinson’s is provided by:

  • In England, Wales and Northern Ireland, by The National Institute of Health and Care Excellence (NICE).
  • In Scotland, by The Scottish Intercollegiate Guideline Network (SIGN).

  …………….

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Here is an excerpt on this subject, by Parkinson’s UK (Support Guidelines):

“Parkinson’s guideline recommendations

NICE has identified the recommendations below as priorities.

Referral to an expert for an accurate diagnosis

People with suspected Parkinson’s should be referred without delay and untreated to a specialist with expertise in the differential diagnosis of the condition.

Expert review

The diagnosis of Parkinson’s should be reviewed regularly (every 6 to 12 months).

Personalised care and treatment

A person with Parkinson’s should have the opportunity to discuss their individual circumstances including symptoms, preferences and goals before starting any treatment.”

……………………………………

It is highly likely that the Parkinson’s specialist, conducting the regular reviews, will be assessing for any potential for medication side effects to be manifesting, but people with Parkinson’s commonly describe being uncertain about which of their symptoms are the disease and which are medication side effects.  This has certainly been something that members of Parkinson’s Road global support community (find us on Facebook) bring to my attention and does not seem to be limited to any particular country, in terms of local practices.  It seems to be a global perception by people with Parkinson’s; though this perception would need to be researched and scientifically measured, if not already done.

What needs to be done?

My concern, for my fellow community of people with Parkinson’s, myself included, is that there seems to be a common consensus that, where medication side effects are concerned, people with Parkinson’s who are taking prescribed medication, need:

  • Greater education about potential side effects, prior to the commencement of our prescribing regimen.
  • That such education would be provided not just in literature/handouts or online but through repeated in-person discussion/teaching.
  • That pre-designed self-monitoring tools are provided so that each patient is taught how to self-monitor for symptom change/development.
  • That patients are taught how to explore and evaluate their treatment options; for example, how to evaluate the choice between medication and a potential/manifesting side effect vs living with the disease symptom untreated or treated by a alternative  medication/therapy.

Parkinson’s knows no borders:

People with Parkinson’s are forming global support communities, online.  Our experience is a shared one and we are not divided by borders, any more than the disease itself is.

Those responsible for Clinical Governance would ideally do better to serve people with Parkinson’s, by creating a universal approach to diagnosing and treating the disease, to designing the prescribing regimen, educational support and self-help tools (some of which I have described above) for all people with Parkinson’s.

My closest friends with Parkinson’s are in the UK, USA and Canada and we run a global support community called Parkinson’s Road; a Facebook located support community which knows no geographical border.  We are one community.

If you are a person with Parkinson’s, please speak up about your concerns or questions regarding medication side effects, at your regular treatment reviews.

(C) Dean Parsons. March 2018.

 

 

 

 

 

When Identity is Withdrawn

Identity is a significant subject for people living with a chronic health disease/illness or disability. For some, the chronic health problem or disability is with them from birth.  In those cases the person’s identity, as being someone living with a chronic health problem or disability, is more likely to be formed earlier in life.  Here, the person has to encounter the reactions of people as they go about their life.  They are faced with a society which has a construct designed for those who are not chronically ill or disabled, from an early age.

Hopefully, the person will have developed a clear idea of their own identity in childhood or adolescence and many of their robust coping skills will be in place by the time they reach adulthood; just as is ideally the case for those without chronic illness or disability.

For others, who may be blissfully going about life without chronic disease/illness or disability, the unexpected onset of chronic ill health or disability can be a trigger for major anxiety.  This is because the person’s existing  sense of their own identity, formed throughout childhood and adolescence, may suddenly no longer fit their new reality.  Much of what they knew about being who they are may no longer apply.  A process of introspection and re-evaluation is likely to take place as the person adjusts to their new diagnosis.

I was quite lucky.  Although I was only diagnosed with Young Onset Parkinson’s Disease last year, my symptoms started just over twenty years ago and so I have been through my own introspection and re-evaluation over that time, while being subject to tests and monitoring.  I did not have to face a more sudden or unexpected change in my sense of my identity and I long suspected what my disease would turn out to be.

Witnessing Identity Theft:

In getting to know people with Parkinson’s, through online communities, I have witnessed the ordeal that some people have to face when their suspected, or even diagnosed, Parkinson’s turns out to be something else.  For example, some people do not respond well to the medication they take called Levodopa and this can determine that their illness is not, in fact, Parkinson’s Disease.  Some people are, instead, then diagnosed with ‘Atypical Parkinsonism Syndrome’; an umbrella term for a number of diseases that have some symptoms that mimic those of Parkinson’s Disease, but which are not caused by Parkinson’s.

Can We Expect the Unexpected?

How difficult, for some, to have grown into adulthood without any sense of chronic illness or disability and to then be diagnosed with an unexpected and life changing disease, illness or disability.  The amount of self-exploration and re-valuation to adjust to the identity of a person with a chronic illness or disability, and all that represents, is a deep, often emotionally painful and challenging process for many.

To be someone who achieves that and then finds that there was a mis-diagnosis, to lose the identity you had just worked so hard to adjust to and then to have to accept another new diagnosis is incredibly hard, and even de-stabilising, for many.

Feeling Lost:

In such cases, some people may withdraw from medical support and may even hide from key personal relationships while they are overwhelmed and in fear of a whole new set of circumstances.  They may enter into a state of confusion, mistrust and deep anxiety; their mental state exacerbating a range of physiological, psychological and behavioural symptoms while they remain in flux or in denial.  This can lead to chaos and breakdown developing in all areas of the person’s life.

If you experience this, please seek help and support. urgently  Your medical care lead is the best person to contact but even speaking with a family member, friend, colleague or your family Doctor can be enough to alert people that you are in difficulty.  There is help available for you.  You can come through this difficult experience.

Certainly, counselling and psychotherapy can be very helpful during such times of identity change or crisis.

(c) Dean Parsons. February 2018.

Be An Influencer

Can it already be mid-way through January?  With the festive season already behind us, many of us will have made an effort toward our New Year’s Resolutions.  Some may have made a great in-roads, while others may already be lambasting themselves as a failure.  At that point, some may give up, while others may develop a defiance to try again.  This annual process, for most people, mirrors the average day, week and month of a person with Parkinson’s Disease and, no doubt, is what most people with chronic illnesses and disabilities experience.  This is a constant battle that those fortunate to have good health, able bodies and good mental health may be unaware others are coping with.

Our societies, around the world, are starting to talk more about chronic illness and disability.  People are becoming aware of the terms ‘Hidden Disability’ and ‘Hidden Illness’.  We are learning that many symptoms of illness and disability are not immediately visible or apparent.  It is important, therefore, that we also learn to understand that there is, what I shall call, a ‘Hidden Survival Dynamic’ playing out, within each individual coping with chronic illness and disability. 

A battle to get through each minute, hour, day, week, month and year. A battle to survive within the construct of a society designed for the healthy and able.    Welcome to my life with Parkinson’s.

The purpose of this article is simple; to encourage all people to stop and reflect over the challenge a person faces in coping with even the simplest tasks of day to day life when their body and/or mind is incapable of doing what most people take for granted as ‘easy’, ‘typical’, ‘normal’ or ‘possible’.

Please do not leave this page, having read it, to go on to something else.  Please just stop.  Reflect for one minute, on what I describe.  By doing so, you may do/influence something helpful in your work, your social life or in your day that, simply by recognising the immense difficulty so many are living with, may just help effect genuine change in our society.

You can make a difference.

© Dean Parsons.  January 2018.

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