My Parkinson’s Journey

I am not sure anymore when it all started, but I was officially diagnosed in 2005. They say it could have already started in 2002, as I had tremors in my right hand. Actually, as I begin to write everything down I realize it is one big blur and maybe I should of made notes. I was so fixated on living one day to the next and trying to find every way possible to beat the disease, that I don’t quite remember all the details and I can’t tell you when it moved to the left side. But I do know that by 2008 things had gone from bad to worse and just getting around was proving to be very difficult. Let me see if I can slowly start to re-account how it all started.

After the loss of my son Wayde – and a couple more misfortunes along the way, we started our life over again with the help of my parents and bought a guest house in the country midlands of Kwazulu Natal in South Africa. It was a life long dream, there were challenges but I won’t go into that as this is my life and Parkinson’s.

It all started with a twitch in my right hand and I put it down to stress and bad lifestyle, running a guest house, but soon I found it harder to control my right hand under pressure, turning an egg proved to be harder and harder. So, time to see the doctor, as our guest house was just taking a turn for the better and I could not afford to be ill.
Our house doctor said he thought it was Parkinson’s and I would need to see a specialist, I had heard of PHD but did not know what it entailed and what a journey I would end up having. I ignored all the signs and carried on doing things that I usually do, but it was starting to get more difficult.

In 2004 we decided to move to the Netherlands and sell the guest house, as it was proving to be too difficult to run and that in Europe they would be more advanced with there treatment of Parkinson’s.
It meant starting over, setting up schools for the two boys and, of course, starting the home affairs procedure in Holland for my wife at the time, who was South African. The process was difficult and the stress of moving and setting up home in a new country most probably affected my Parkinson’s more than I knew.

By 2008 my Parkinson’s had deteriorated so much, that life was getting more difficult, I was finding it hard to move around, I had terrible over movement, the time that I was “on” was nothing compared to the time my body was doing it’s own thing.
There were some funny moments with Parkinson’s and over movement. I suppose if we don’t find the funny side to life we just get sad and depressed. The one moment Chad and I still have a good laugh about, is when we were walking out the house towards the car and I started with my over movement, and ended up treating my wallet like a discus and sending it flying over the car into the park, with money and bank cards flying everywhere. He collapsed laughing and today we still have a good laugh over it. 
The other funny moment we had together, was in a shop and we were looking at ornaments and I had one of my moments and the ornament went flying out my hand across the shop. The assistant came over to me and said that maybe I should just look and not touch.
 
There were some sad moments too, like when a 19 year marriage ended because of Parkinson’s, I had to give up working and driving. But, there is always an upside to life. I met Virginia and we got married in 2011, we are blessed with two little boys. I also have the most amazing family who stand behind me and are always there for me, my older sons, mother, father, my sister and her husband.
I suppose one of the most difficult tasks is understanding Parkinson’s and as the years pass by understanding the changes. First, you diagnosed and you don’t want to know about Parkinson’s – I think it’s just fear. I thought if I read about it and it sounds terrible, what am I going to do? run away? Also when you read how terrible the disease is, the first thought is “is that going to happen to me?” So, it’s easer to just ignore it.
Then I accepted I have Parkinson’s, but still wanted to try do everything and could not understand why I was getting so tired. Now, 13 years down the line, I  still have no clue about what is happening to me or what is going to happen. So, now my policy is live one day at a time and deal with that. Tomorrow is a new day, with new problems and we put our best foot forward.
How do you deal with the constant change? One day everything is going quite well and the next day it all changes. Someone once asked me what is the thing I most hate about Parkinson’s. My answer then was the over movement. I hate the fact that my body just does it’s own thing, you can’t speak properly and your head is like Noddy and your arms and legs are doing this jig and you just want to scream. Now I have a new answer: the thing I hate most about Parkinson’s is that I have Parkinson’s.
Who can prepare you for the road you going to take with Parkinson’s? No one, but you. As everyone is different and it seems to have it’s own life. Doctors, physiotherapists, speech therapists and everyone out there, who have dedicated time and energy, can only help you along your journey and make it a little easier. But it all comes down to you, how you going to deal with it, will determine the journey you going to take.
Just The Beginning

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