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

Leave a Reply