Category: THE BLOG

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’.

 

My body seemed to have started it’s own game show 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.