Have you ever heard of a little thing called dystonia?

When people hear the words Parkinsons Disease, it usually triggers mental images of old men with the shakes. Am i right? Or is that me just being presumptious? Actually i will rephrase the statement. When i was told i had parkinsons i had the mental images of old men shaking.

Then i discovered that good old Mr P is not just a one trick pony, oh no, Mr P has all sorts of practical jokes up his sleeve. He has tried out a few on me so far and i am currently in the process of finding the right meds necessary for me to beat him at his latest. A little thing called Dystonia……

Now i have decided that being a Parkinsons Participator (i hate the word sufferer, it is so defeatist) is a bit like playing a game of chess. Not just any old game of chess though, this is a game where you, the newly diagnosed Parikinsons Participator, have only heard of this game chess, you know it exists, you have a vague idea of what is involved, but absolutly no idea of the rules of play.

Suddenly and against your will, you have found yourself forced into playing this Parkinsons chess game but unfortunately you are playing the super Grandmaster, the hideously smug Mr P himself.

So the game begins. Mr P starts by moving a few of his pawns, he gives you a little tremble in one hand and a change of gait when you are walking. Nothing big, he wants to ease you into the game, if its over too quick he gets no fun at all. So we take our turn, move a few of our pawns, visit the neurological dept at our local hospital and start taking a dose of Ropinirole three times a day (other drugs are available)

Now Mr P is a patient sort of guy, he gets his pleasure in playing the long game, so he sits back in his chair and lets you enjoy the feeling that maybe you are ok after all. The Ropinirole makes you feel like normal again and all is well for a year maybe. Then Mr P takes his turn and he slides in a castle perhaps, takes your pawn and gives you back the trembling feeling and wonky gait with the added bonus of loss of fine motor skills because your fingers wont work anymore.

You take a look in a chess book (go back to your consultant) and decide to us your Knight to take his bishop and up the drugs by beginning to take Madapar three times a day with the Ropinirole. So again you feel like this is much easier than you thought it would be, Mr P sits back and lets you have your moment of glory and gives you 18months or so of feeling fine again before he puts you back in your place by reminding you he is the master of this game.

The trembling, the wonky walk, and the useless fingers return but now you are waking at 3.30am every morning feeling like you have a stomach bug and spend hours backwards and forwards to the toilet with nothing more than wind for your efforts. You take your turn and move your queen to threaten Mr P’s king, the consultant ups your madapar to four times a day. You briefly feel great, dare to think that you have beaten the Grand master, then Mr P decides its time to play the game properly and he knocks your queen right off the board with his knight. He hits you with Dystonia and you realise that you have lost your best game piece, the madopar isn’t working anymore and you are running out of options.

Dystonia, if you are unfamiliar with the term, is basically areas of muscle going into cramp. You can get it in the feet and legs but in my case it’s my right shoulder and into my neck. It occurs when there is insufficient dopamine in the body and is not to be confused with dyskinesia, the term for the weaving, fluid dance like movements of the whole body or one part, which occurs when there is too much dopamine.

To say that it grips me is an understatement. The muscles in front of my neck contract severely enough to draw the corners of my mouth down into a grimace. The muscles in the right side and back of my neck tighten so much that my right shoulder rises up to my ear and make the base of my skull burn, I look like Quasimodo . My right tricep contracts to a point where i can still feel it the next day. During the episode i have to bring my right hand up to my face because i cannot straighten my arm. Then i begin to feel my right leg and foot begin to cramp. My head starts to tremble with the strength of the muscle contraction and i am unable to move. It usually lasts about twenty minutes, sometimes more, sometimes less.

The game isn’t over, Mr P and his tricks haven’t beaten me yet. We have years to go with this chess game between Mr P and myself.After a bit of communication with a Parkinson’s professional and another adjustment with the meds I have managed to take out one of Mr P’s bishops with my knight, and yesterday I had a good day (felt sick and a bit dizzy but was able to move with relative ease) and joy of joys…..

I had an evening without the dreaded neck cramp. I cannot put into words how happy that made me, I am trying not to think what move Mr P will make in retaliation or indeed when he will make it. I am just going to enjoy the feeling of being in charge of the game for as long as I can.

You never know, there maybe someone out there on there verge of reinventing the Parkinson’s chess game rules for ever. Maybe one day I will get my queen back along with a list of master chess moves and get to kick Mr P’s king straight into the bin.