The End of Parkinson's Awareness Week 2014

The End of Parkinson’s Awareness Week 2014   1248 words

In previous Awareness Weeks I have written about the symptoms and treatment of Parkinson’s but this time I would like to write about my own personal experience since being diagnosed in 2007.

When first diagnosed I dealt quite well with the symptoms and there was very little pain and for the most part I could lead an almost normal life.  Gradually, however, over the years my world has become smaller. 

According to my consultant there are apparently four stages of Parkinson’s which are diagnosis, maintenance, complex and palliative. He tells me I am in the third stage, complex which I think is a good name for my condition at this time because it does seem to me that my symptoms are constantly changing.

So how does my condition affect me?  Well, a minor symptom is the loss of dexterity as it takes me forever to do buttons up and zips are a joke.  Putting on and taking off jewellery is nothing short of a nightmare.  I also have great difficulty putting a coat on because I have a terrible struggle to first off get my left arm in the sleeve and then to pull the coat fully on.    

My memory is now very poor and I find this tremendously frustrating as I have always had a good memory.  My spelling has deteriorated but I used to be good at that too and my handwriting is so poor even I cannot read it back.  I also have great difficulty using a keyboard and a mouse and when I type I turn the letters round so ‘to’ becomes ot which is a right remmub.  Moreover, I used to be able to read and write during the night which helped pass away the wee small hours but now my window of opportunity is getting smaller and smaller.

My nephew very kindly bought me a voice activated programme as well as a voice tracer but I still need to be able to use the mouse which I cannot do well.  I can’t navigate the mouse to get the cursor where I want it to be or as I try to get it where I want it I quite often get the shakes so hit the wrong key or button and more often than not I lose my work and that is the reason I don’t read or write as much as I used to.  I don’t read as much as I would like because my eyes won’t focus until my tablets have properly kicked in.

One of the things I find most difficult to deal with is the level of pain.  Some people with Parkinson’s experience no pain but have other equally distressing symptoms.  My experience is that I can get pain at any time.  Night time is the worst because I dread going to bed.  The longer I sleep the more stiff I am and the more pain I am in when I wake up. I usually get up once during the night to go to the toilet and that can take me ten to fifteen minutes to accomplish.  First I have to try to sit up then I bend forward to rest my head on my knees to stretch my back and that takes as long as it takes.  Next I try to swing my legs off the bed and then I make a grab for my bedside cabinet and try to reach a handle on my wardrobe and then another and try to pull myself up and then using the wardrobe handles as handholds I manage to get to the en suite.  I try not to wake Derek as he is none too well either.  However, if I am in too much pain to go back to bed then Derek helps me to get to the computer room.  He then goes back to bed and I sit at my computer because I know this change in position will help with the pain.  So sleep is a problem.

I also suffer from SOS Sudden Onset Sleep and this can be quite scary because I can fall asleep while drinking a cup of tea and I quite often scald myself.  I can also fall asleep when I am eating my dinner so often I end up with my face in the gravy and let me tell you it’s not a good look.  If only the remains of a sprout or two and a tiny trace of Yorkshire pudding clinging steadfastly to my mush and all rounded off with a nice drop of gravy was a fashion trend then I could be a fashion icon!   

Depression is something I have to fight against and I know that will come as a surprise to some people who read my work on ABC but what I write is just my way of dealing with it.

However, my biggest disagreement with Mr Parkinson is that this wretched condition is seriously affecting my ability to train my dog, Lincoln.  My husband and I have had three boarding kennels so my life’s work has involved working with animals and I especially enjoy training dogs, something that in the past I was good at.  Not so anymore, although I do on very rare occasions still enter Lincoln in an obedience show and in the past I would probably end up in the cards but Lincoln is seven now and he has not got anywhere near being in the line up yet he is a good dog and can do all the exercises.  The reason for this is that I only have to hit a slight bump in the ground for me to lose my balance and then I knock him off my leg and as he is a dog that works close to me he gets penalised every time for my error.

Last week I took him training to a club about ten miles away but I only managed to do a down stay and then I needed to go home.  I couldn’t walk with him and a fellow handler had to take Lincoln to the car for me because I just couldn’t hold him or walk with him and Derek had to take me home.  Needless to say I was very upset by this because training my dog is what I look forward to the most and it is what I hope will help me maintain my mobility for as long as possible.

Some people may find this boring and think, oh, there she goes again bleating on about having Parkinson’s but I make no apologies for this because it is my way of helping to spread awareness of the condition which contrary to popular belief is not just a shake.  It is a great deal more than that and everyone experiences it differently.  What is more the medication available at this time is not the greatest thing since sliced bread as some medication can lead to hyper sexuality and gambling.  However, if one can think of a way to earn a bob or two from the hyper sexuality thing then it could go some way towards financing the gambling so every cloud... 

Despite all of the above I would just like to say that the friends I have made since joining the local branch are the most caring, friendly people it has been my privilege to know and I would do anything for any one of them…unless they ask me for a sub…well, one can take this friendship malarkey too far!