"Deserving of no-ones sympathy"

There can be no doubt that diagnosis of a serious disease often comes as a major shock, not only to the person diagnosed but also to those closest; parents, siblings, spouse, partners etc. And so it was with my wife.

Still, I couldn't help but feel that it was odd that the ‘shock’ impacted her as much as it did, as she had already come to the conclusion that I had Parkinson's prior to the formal diagnosis. This conclusion, I found out, was not a lucky guess, but had been based on the referral letter issued by the GP advising the consultant that amongst other things, she believed that I was showing the first signs of Parkinson's mask.

I was oblivious to this, as the wife seemed to have decided that the information contained within the letter would be too devastating for a gentle soul such as myself, and I needed, protection from its horrors.

So she hid the letter or rather didn't show me it. Which, I will confess, still somewhat irritates.  I am I believe, emotionally pretty robust. I don't go to pieces when things get difficult and I am able to process bad news, coolly and rationally.

At least that’s what I believe, the wife however nearly choked on a piece of apple with laughter, when I explained my views on this to her. I was attempting to lay down the law and ensure such things never happened again. An exercise in futility:

“I did it for your own good, it was two weeks before Christmas, your Mum was coming, and you'd have spent all your time worrying"” And that was the end of it.

My wife is NOT a retiring wallflower. Which for my own safety are my final words on the matter. But she did have a point, whilst all I have said is true, I do have a special talent for worrying, and can be a bit of a hypocondriac.

So ok, maybe she was right.

Following the diagnosis, the atmosphere around the house was fairly depressing, What with the wife breaking down in tears on a regular basis. I've had more laughs at a funeral than I enjoyed in my home for those first couple of weeks after diagnosis. 

She'd probably also discovered that I wasn’t well insured.

Thing is I was quite chipper, however. I didn't really understand the fuss, this wasn’t a death sentence. So I’d get a bit shaky, but I had 10 to 15 years of good health before the things got too bad and according to the Consultant things would be controllable for a further period even then. In an attempt to cheer us all up, I reminded the wife of what the Consultant had said.

My comment was received with a weak smile. "Yes true, I must remember that", said with absolutely no conviction at all in her voice.

Something was amiss, after being married for 16 years I have grown sensitive to wifely evasion. It meant there was a problem. My spidey sense was tingling and I decided to consult Google. It wasn't easy reading. The list of side effects seemed endless, around 40, ranging from the mild, to what can only be described as the frightening. 

So here they are, a select choice of some of the more common of the 40 symptoms of Parkinson’s:

• Pain

• Rigidity

• Mild memory and thinking problems

• Dementia

• Severe sleeping problems

• Constipation

• Incontinence

• Slow movement

• Depression and Anxiety

• Hallucinations and delusions

Covers quite a list of symptoms wouldn’t you say? Everything from pain and discomfort to indignity and humiliation. I'm not going to pretend that I'm good at being stoical and cheerful in the face of pain. I'll go through with it, I'll put up with it, but expect complaining and bad temper. What I won't be is a little ray of sunshine.

Actually, people who have known me for a while will know I rarely do "sunny"!

My persona, is more "miserable bastard".

Suddenly I wasn’t feeling so chipper. Downright moody in fact, I needed some good news. Then Parkinson's UK put the boot in with this lovely little TV advert

Just what a newly diagnosed Parkinson’s patient needs, a horror vision of their future. A visual portrayal of hopelessness, inspired it seemed to me by the paintings of the damned by Herronymus Bosch. An outraged wife, who you will remember had been trying to shield me from this, formally complained to Parkinson's, got a stock response of bland condescension and resigned. My mood darkened further. I needed to understand better and get some context. Hiding my head in the sand had to stop. It wasn't as if I had been lied to, all the information was available, I just hadn't asked.

I will admit, sometimes, just sometimes, I'm slow at getting round to things.

Like finding out what Parkinson's was all about. 

I had to face the truth, I had been acting as if nothing much had changed. By letting myself believe that things weren't so bad, I had failed to get to grips with the truth of what I might be facing. I had had a whole second appointment with the Consultant, allowing me to ask all the questions I had been too stunned to think of at the first consultation. But by then I was complacent, believing in an overly sunny view of my Parkinson's future, so I limited myself to a few questions about medication, options and side effects.

And that bundle of laughs and what I found out, will be a post for another day.

But there are a lot of sources that can supply good quality information. The NHS, Parkinsons UK, even the Michael J. Fox foundation, (although being an American site, the spelling can be atrocious), to name but a few, and Dr Google can be very helpful in aiding you find the right sites. 

So slowly I’ve caught up on my future and what it might be like, and the first thing to say is, despite everything I have read, I don’t know with any more certainty what that future will be. You don’t know what symptoms you will get with Parkinson's, there is no template that we all follow. Not everyone will get all these symptoms, but some will, and there is nothing currently that can be done about this. The cure isn’t there. Yet.

So is it all doom and gloom? Well not quite. But it's down to the individual.

You have a choice, spend your time raging against God, feeling sorry for yourself, pitying your fate. Wasting the good times you still have available.

Or get on with life, enjoy it. Fight the battles you need to fight, but remember the sunny day is still lovely, a holiday with the family is still memories created, and an opportunity to simply listen to your children and remind yourself how wonderful they are. A meal out can still be tasty and a pint with friends is still damn good fun. Oh and spend time with your partner as well.

They'll be the ones wiping your bum, when you no longer can.

Doing these simple things may become difficult or impossible over time, so grab the opportunities while you still can. Leave it for later and you will find you have run out of time.

And if I do that, I will be deserving of no-ones sympathy.