Extract from the predominantly positive personal blog about living with early onset Parkinson’s: Parkinality.co.uk
I was diagnosed with early onset PD at the age of 44 in November 2012. This is my diagnosis story.
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.
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 hyperglycemic’ (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 sufferers of ‘hyper glycaemia’, 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 workout. My left leg seemed to be ignoring instructions.
All of these things were ignorable.
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 fortunate 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 move awkwardly. The symptom was changeable and some weeks 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.
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 that 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 tumor.
- 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 people, that although in lots of ways for the worse, in some ways for the better.
You are probably 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 now 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 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.
The best piece of advice I was given by my PD Nurse 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 straightforward 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.