3. New Words

Before I start this post properly, I am going to have to begin with a comment about the end of the preceding post ‘The Morning After’.  Just to clarify the youngsters referring to my blog as ‘sick’ were actually being complimentary.  ‘Sick’ in today’s slang means ‘good’.  Actually as I am defined as young/early onset I need to start to speak like a youngster.

Now on with this post :

I love words (you may have guessed this with me making up my own word for the title).  However, there are words which, to be honest, I wish I still didn’t understand or have in my vocabulary.  Those relating to PD.

At the beginning of this blog I said that one of my aims was raising awareness and understanding.  So before I go any further, below is my simplistic definition of PD and two key words.

In case any Neuroscientists inadvertently stumble across this blog.

  • Firstly : ‘Hello’
  • Secondly : ‘Please forgive my clumsy, simplistic description.  I am a 49 year old mother with no science background trying to explain a complex degenerative neurological condition’.

 

  • My description of PD :

An area of the brain is broken, and has stopped producing a chemical which transports messages from the brain to the rest of the body.  This chemical is called dopamine.

The condition is incredibly complex, it is still not fully understood.  If I tell you that in 1817 James Parkinson identified it as a condition, then called the Shaking Palsy, and later renamed Parkinson’s Disease.

200 years, zillions spent on research, and still no cure.

 

  • Dopamine

If dopamine causes such chaos when it is missing, why don’t people know about it?

I am going to try and explain what dopamine means to me, living with PD, through something else that we all understand and is vital for health and well being – water.

Imagine that each person has their own personal water supply, enough for them for life.  The water supply is so constant and available that everyone takes it for granted.  People have no reason or interest in finding out how and where it comes from.  Individuals are unable to share it, even if they wanted to.  They never have to worry about finding other sources of water.

Now imagine that your personal water supply was perfect for 44 years.  Then suddenly your water supply becomes unreliable.  It switches on and off with no warning.  When the water is reinstated temporarily you are unable to store it.  Your friends and family still have a constant supply, but can’t share or help you.  As water is essential for life and well being, the quest to repair the water supply, or find other sources of water is constant and all consuming.

Now substitute the word dopamine for water.

Fortunately, today in the developed world, the modern day elixir of life, water, is plentiful.  Dopamine, unfortunately for me, is not yet available in sports bottles in convenience stores.

People without PD have a lifetime supply of dopamine.

I no longer have that.  My supply is broken and depleted.

As I am not a Neuroscientist, I fundraise to donate to those looking for a cure and organisations supporting those with PD. I am also constantly looking for ways to replace/boost my dopamine.  If I was told two sticks might find a source of dopamine I would be hosting the inaugural meeting of  ‘The Divining for Dopamine Delegation’ (I do like an alliteration).

 

  • Levodopa

As I said earlier ‘I am not ill, I have a condition that needs to be managed’.

One of the ways of managing the condition is with medication.  I will go into this in more detail later – but one word is worth mentioning now – Levodopa.

Levodopa is the ‘gold star’ medication, and was discovered around 40 years ago.  It is not a cure, it is used to manage the symptoms.

To me personally (sometimes) levodopa is brilliant, amazing and miraculous.  It somehow makes communications between brain and body work again.  (When it is working) I can sometimes feel like I am cured.

But …

There had to be a ‘but’.  After all if a tablet reliably managed all the symptoms 24/7 for life, then there wouldn’t be a blog.  My blog would just say I take a tablet each morning, get on with life, until a cure is found.

Just to make it very clear – I want this blog to be as short as possible.  I have no wish to be blogging at the age of 80 about living with PD.  I want to be blogging at the age of 80 (cured of PD) about being an accomplished tightrope walker.  It is not enough for levodopa to give 24/7 coverage I want, and need, a cure.

So I continue.  I take a tablet*, it goes into my stomach and then ‘magically’ (not a medical term) some of it, hopefully, gets to my brain to help with dopamine production.  I say ‘hopefully’ because in my case any of the following could happen :

  • It is a long way between stomach and brain and the drug can get lost enroute.
  • Medication can switch on and off without warning (so be working one minute and stop as quickly).
  • I currently take meds five times a day and they can take 40 minutes to work, or 2 hours, or 3 hours or not at all.

*As of February 2017 I actually take twelve tablets a day, but more about that later.

There are many motor and non motor symptoms, and although I don’t have them all, I have a wide selection.  When meds stop working it is an (un)lucky dip of what will break through.

So a real life PD example is my walking.

When meds are working I can walk normally, brain and body are communicating.

When meds aren’t working one way PD might affect me is my walking.  For example I might find it incredibly difficult to bend my left knee or swing my left leg forward.  I am not paralysed, but it takes incredible concentration and I feel like I am trying to move through treacle.  There is nothing wrong with my legs physically, the message on how to walk has got lost between the control centre (brain) and the legs.

So I am constantly looking for other ways of managing the condition, chocolate, exercise and music are my top three.  So when things are bad, make way for a middle aged woman with chocolate round her face, running, listening to heavy rock music.

 

 

2. The Morning After …

Before I begin I need to remind you that this is a personal blog.  There is no right or wrong way to deal with this diagnosis.  The condition, symptoms and feelings are very individual.

Firstly, my apologies for going back on a promise.  I said it wasn’t a ‘Who Dunnit’ and there I was leaving you with a cliffhanger.  I remind you of the last six words of the ‘diagnosis day’ blog, describing how my outlook has changed since diagnosis.

‘… in some ways for the better’.

I may have left you wondering how on earth my outlook on life could be anything but negative, after being diagnosed with an incurable degenerative neurological condition.

I promised to be honest, so it would be very wrong if I didn’t mention the feelings, including shock, fear, anger and frustration, which have ebbed and flowed since D Day.  However, I am not going to dwell on these at the moment.  As promised, I am looking for the positives in a diagnosis which could very quickly drag me down.

So since my diagnosis, I now more than ever :

  • Appreciate how wonderful and complex the human body is.
  • Appreciate the times when my brain and body are working together as a team.
  • Live in the moment.
  • Appreciate the kindness of strangers.
  • Appreciate wonderful friends – old and new.
  • Try new things today, rather than putting them off.
  • Challenge myself and push myself to keep going.
  • Look for the positives.

I have a Neurologist and PD Nurse who are really supportive and direct me to more support when needed.  The best piece of advice I was given in the few weeks after diagnosis was:

  • ‘I am not ill, I have a condition which needs to be managed’

In other words, I see the medical professionals a couple of times a year and the rest of the time I am Caretaker Manager of my PD.  If only it was as straight forward as the offside rule (which, in case you wondered, I do know).  In the same way that the symptoms take over every part of every day, managing the condition is a full time job.  Not only with medication, but also, exercise, diet, hydration, sleep and many more whilst all the time trying to remain positive.

In this blog I plan to share the ways I have found to manage this ever changing condition.   Although I am positive, this blog may sometimes be difficult to write and read as PD tests me on a daily basis.

PS : not everyone has access to a Parkinson’s Nurse.  So if you ever get asked if we want more PD Nurses, please say ‘yes’ and tick that box – thanking you.

PPS : I have had lots of good feedback from people reading the first couple of pages of my blog.  However, several younger people have said that the blog is ‘sick’.  I hope that I am able to dispel this thought by referring to the quote above ‘I am not ill, I have a condition which needs to be managed’.

 

1. Diagnosis Day

Chinese Whispers : my body seemed to have started it’s own game without consulting me first.  Random, seemingly unconnected, things kept happening to my body, as if my body was whispering to me and I couldn’t quite work out what it was on about.

  • Early 2012: a few examples of the interestingly ignorable whispers …

I was lunching with a friend and noticed it was difficult to twiddle my fork.  Answer : just clumsy.

Then I noticed that my left hand shook.   I convinced myself  that it happened specifically when I was hungry.  Answer : I have always suffered from the (probably) non medical condition of ‘hollow legs’ (being constantly hungry).  So the shaking was affectionately referred to as being ‘borderline hyperglycaemic’ (as in needing to eat immediately), an excuse for a bar of chocolate?!

NB I must point out that I am not medically trained (you may be surprised by that fact).  I would like to apologise to any ‘hollow leg’ sufferers, or suffers of ‘hyperglycaemia’, borderline or otherwise.

Tap dancing (yes, really) became very difficult.  I would regularly say after a class that it was definitely more of a mind work out.  My left leg seemed to be ignoring instructions.

All of these things were ignorable.

  • April 2012.  A new symptom appeared, which was annoyingly UNignorable (more of a) prod and raised voice, than a whisper.

Whilst typing the final essays for my degree (yes, really), my left hand stopped typing.  This was now annoyingly UNignorable.

I just knew it wasn’t physical.  I had been able to touch type for about 25 years and I just knew something wasn’t right.  Trying to explain to people that my left hand wouldn’t listen to my brain seemed a ridiculous thing to say

I now got assertive.

I was lucky enough to have private healthcare, so this sped me through my appointments.  So I don’t bore you I will do the same with this part of the blog.

First suggested diagnosis was a trapped nerve in my neck.  I had Physiotherapy for 6 months.  My left arm would tremor and would move awkwardly.  The symptom was changeable and some weeks we appeared to be making progress as it seemed to have improved and then next week it seemed to be worse.  Shaking and movement would also change during the treatment.

As no improvement after 6 months I was referred to a Neurosurgeon.   After the consultation and MRI scan.  The Neurosurgeon said it definitely wasn’t a trapped nerve and thankfully the MRI scan was clear.

November 2012 : As no diagnosis and I was worried, the Neurosurgeon referred me to a Neurologist.

The Neurologist put me through some surprisingly unscientific tests.

  • Sitting on the edge of the couch, arms outstretched, he asked me to subtract 7 from 100, with my eyes shut.  I was briefly concerned.  Diagnosis based on primary school maths didn’t appear very scientific.  He reassured me he wasn’t testing my maths but whether my arm shook when concentrating – it did.
  • Walking across the hallway, he said was I aware I dragged my left foot – I wasn’t.
  • Then the final test, and this was the big one, the almost conclusive one.  You may think, blood tests, electrodes, swabs, special super duper computer analysis – no.  It was what I affectionately call the ‘tweety bird’ test.  Where I hold up my hands and move quickly my thumb and first finger to demonstrate a tweeting bird shadow puppet.    My right hand was fine.  However, my left hand had problems.

He said there was no need for any other tests (there is another scan but he was so sure of his diagnosis it was unnecessary).

My Neurologist leant forward in his chair, and said directly :

‘You have Parkinson’s Disease’.

He immediately followed this by reassuring me that I was not alone, he would be my Consultant and I would have a Parkinson’s Nurse.  He also said there are medications to allow me to live an active life.

My initial thoughts may surprise some people …. Relief.

  • Relief it wasn’t an inoperable brain tumour.
  • Relief that someone finally believed me.
  • Relief it had a name.
  • Relief that I could now, after months of faffing, finally do something about it.

The Neurologist offered me medication there and then.  However, as I have always avoided even Paracetamol I said no.  And actually the symptoms, although annoyingly unignorable, at that time, weren’t actually stopping me doing anything.

In that moment I can honestly say my life and outlook on everything changed, and actually it might surprise some people, that although in lots of ways for the worse, in some ways for the better.