Parkinson’s Awareness Week 2016

This year I have decided to try something new for Parkinson’s Awareness Week.  I have made a short series on my new YouTube channel that demonstrate some aspects of my experiences living with Parkinson’s over the last 5 years.  Each day I will Tweet about that particular episode and what it represents.

Posted by steady in #mypdperspective, 2016, 2016 Parkinson's Awarenesss, 0 comments

5 years on….

Each year in April it becomes Parkinson’s awareness month because April was the month that James Parkinson was born.  He is notable for publishing ” An essay on the shaking palsy” in 1817 that first described the condition I live with.

Each April I am reminded of my own Parkinson’s awareness month because April was the month in 2011 when I was first diagnosed.  In fact 5 years ago today at an evening consultation the Neurologist said to me “I think it most likely that you have Parkinson’s” having watched me walk to-and-fro a few times and manipulated my arms and legs.

The previous day I had visited my GP to see why my arm kept dragging against my chest whilst I was out running as it had become just a bit annoying.  The constant fatigue I had been experiencing for months I had put down to a busy, hectic job combined with lots of driving and having two young children.  The look from the GP changed that as she reached for her shelf and a directory to find me the details of that consultant Neurologist who would see me the next evening.

A few months on we stumbled upon that great picture of someone wearing welly boots jumping into a puddle with the phrase “life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain”.  This became our mantra.

Those 5 years have gone quickly.  Too quickly.  Anyone who knows me/us well would most likely agree that I/we haven’t stood still.  There’s been plenty of learning to dance in the rain.  We’ve made a few changes to our lives to meet this challenge head on.

This is my first post in almost 6 months.  There are lots of reasons why this is so.  Not least because I have been losing ground against my Parkinson’s.  This has been hard.  Very hard.  These have been the toughest months of the journey so far.  The rain has been persistent and soaking.  Yet every day we get up and dance and continue to do so without fail.  We will again tomorrow.  It might be time to learn a few new steps?

We shall go on to the end.  We shall fight Bradykenesia, we shall fight the sleepless nights and postural instability, we shall fight with growing confidence and growing strength against the Dyskensia, we shall defend our Stubstantia Nigra, whatever the cost may be. We shall fight on the beaches, we shall fight on the Levodopa, we shall fight the Fatigue and the streets, we shall fight in our head; we shall never surrender


Posted by steady in #1in20, #mypdperspective, 2016, 2016 Parkinson's Awarenesss, 0 comments

Dear newly diagnosed self…..

I posted a version of this last week on another forum and so I thought it would be good here too!

November 2015

Dear newly diagnosed self,

I think you would have found this letter would have been very useful back in April 2011.  However it has taken four-and-half years for you to be ready to write it.  So the very least we can do now is share it in order that anyone else diagnosed with early-onset Parkinson’s might find it useful and that it help gives them hope.

Earlier this year you passed another [what you had once thought would feel significant] milestone when you had been living with your Parkinson’s diagnosis for 10% of your lifetime.  Of course not forgetting that there was an unknown period before when you were unaware of the havoc that had already started wrecking your brain circuitry.

In the early days following diagnosis you had to come to terms with what was happening and what it would mean.  There was the uncertainty of what you might face and how awful things might become.

What impact would it have on you?

How would this “thing” play out?

What impact would it have on your marriage?

What would the effect be on your children’s upbringing?

What impact would it have on your family and relatives?

Would you lose your friends?

Would you lose your job?

Where could you end up living?

Would you still have a social life?

These were just some of the questions you asked.

There were few, if any, answers…..

You were later to find out from the stories of others that you were not the only person to get a Parkinson’s diagnosis delivered in such a matter-of-fact way.  The Monday morning visit to the GP; her searching through a directory to give you a telephone number for the Neurologist who would tell you on Tuesday evening that he thought you had “a young onset Parkinsonism”.

By the time of writing  this letter you will have almost forgotten how unsettling you found the waiting whilst you had the MRI and blood tests that ruled out other causes of your symptoms.  Then  after the GP, the consultant and follow-up appointment came the letter-through-the-post that confirmed his first assessment.  You were left to get on with it…..

….I’m pleased to tell you that four years from now that you live with Parkinson’s like many other suburban families with both parents juggling work; providing taxi services to the kids activities; time with friends; family time; nights out; fun; laughter.  Furthermore some newer work colleagues and acquaintances have told you that they hadn’t got a clue you have Parkinson’s before you had mentioned it.

So how do you get to this place from where you are now?

The secret lies in that page from a magazine that your wife found recently.  The quotation alongside a picture of someone splashing in a puddle reads “life isn’t about waiting for the storm to pass it’s about learning to dance in the rain”.  That’s what it is all about – this storm isn’t for passing!

After the initial shock of diagnosis you vow to take this challenge head-on and take charge and be in control of as much as you could – you have to learn how to dance in the rain!  You will climb many mountains in the next few years.  With help from family and so many great friends you will see your wife complete her PCGE and secure a great job as a Primary School Teacher.  You will move house and renovate a bungalow in order that you never have to worry about moving again if mobility becomes an issue.  You use it as an opportunity to create your forever home to which you hope some grandchildren may one day visit.  You may not think it now but I’m telling you stairs are over-rated!

Over the next few years you will increase your medications.  Let me tell you now that these increases are what keep you moving and able to live your ‘normality’ – it’s all about that dopamine remember.  Starting off with some low doses and steadily increasing; trying new combinations.

It might feel like a bad day when you start taking Levodopa in addition to the Ropinirole.  In some ways the extra dosing serves as a reminder of the never-ending decline that inevitably happens; but better to take a big bag from the pharmacy than not be able to move!

The addition of the PD physiotherapy will be a boost in late 2015 and will put you in contact with another of the #1in20 who was just two miles away.

To help you as you grapple with the news you’re just hearing I’d better let you know you’ve just had some busy and fun times recently so I’m going to get an early night in before heading off for another week at work.

                                ….. just keep  ‘dancing in the rain’

Yours hopefully,

Your diagnosed four-and-a-half years ago self

Posted by steady in #1in20, The journey so far...., 0 comments