I offer this "story" of my experience for newly diagnosed people to read. All peoples experiences are different and a such no piece of advice will suit all. I hope you find it useful.
My world was at its darkest point. I had seen myself for what I truly was. The parts of me that I had pushed into the denial corner were right there in front of my eyes. What had I become? How did I get here? The phone, the bloody phone just kept ringing it sent shudders through my very being. My realities were all trying to speak to me. Arghhh! There it was; my anger; self directed anger. There it was again. How did I get here?
At this point in my life I was aged 42, I had been diagnosed with Parkinson’s disease for 2 years. My world had quite literally been blown to the wind. Looking back now ‘It’ had started to enfold me many years before; I had lost my sense of smell. ‘It’ then started a twitch in my eye and, at the point of diagnosis, had acquired the occasional use of my hand.
That moment, that moment when the specialist told me; my gut twisted like it had been grabbed by a vice. A picture floated into the front of my mind. It was the picture of my granddad in the months that preceded his demise. He had Alzheimer’s and Parkinson’s. Utter despair. I had just resigned from my previous job and was due to start my new job in two weeks time; what was I going to do? My specialist was speaking to me; I wasn’t listening. Then I heard “drugs.....alleviate the symptoms”. Hope! That was it; take the drugs and my problems will all go away. The answer!
The biggest mistake of my life..........
For those not versed in the ways of Parkinson’ s Disease (and why should you be!) there are two basic types of drugs which alleviate symptoms; those that replace the “stuff” that is chemically missing in your head and those that mimic the action of the “stuff” that is chemically missing. Each type of drug has a list of side effects as long as your arm and my arm put together. Some are very serious, some are less so. I was about to find out first-hand about some of these; I was to start on the “mimic stuff”.
As we all know, when you start a new job it can be very stressful. You want to prove yourself; you need to assimilate a lot of information. ‘It’ took the opportunity to test me, my left arm started to stiffen. The drugs, the bloody drugs were messing with my head. I found myself one day hiding in the disabled toilet with sweat pouring from me. I was quite literally curled up in a corner in a foetal position. My head permanently had a heavy weight across my forehead. But I must carry on, I must prove myself I must battle through. I had worked from the age of 17 and never shirked. This was my way.
So, the cycle began. I got more stressed at work. My symptoms got worse. I took more drugs to stay “normal”. I was changing; my mental balance was being eroded.
In parallel with this, I had started a personal crusade to find the cure for Parkinson’s. I immersed myself in research. I actively chased links with people “in the know”. I became involved in several groups and online initiatives. I was desperate. My life was slipping away. I saw no future. I was becoming compulsive. My common sense stop points were leaving me. I tried my best to look ‘normal’, but was finding it ever more difficult.
My wife, my poor wife; what was I doing to her? “Remorse”, “extreme remorse”.” Guilt”, “extreme guilt”. But I continued on. It was the “buzz” I felt alive when my body was dying. For the people who were in my new world this was ‘normal’. So it was ok, wasn’t it? I was not alone; it was not my fault. I was ill. I deserved happiness. Why should I not have what I want to have whilst I am able?
The worse side effect of the “mimic stuff” is compulsive behaviour; overt sexual behaviour; gambling etc. This was me; I hid it; I internalised the guilt and pain.
Life continued; it got to the point where I could not continue my job. I was not stable either mentally or physically. By this point I was taking both the “mimic” and the “real” drugs. I was a total bloody mess.
Then, it happened. I was at the World Parkinson’s Congress. I woke up to myself. I made the decision that I had to change. But that involved truth. How the hell do I tell my wife?
Lots of stuff had happened and to be honest some of it is a blur. I did tell my wife. And so I found myself at Stafford Services. I had run away from my wife who was rightfully broken by it all. She did not break down. She held it together. But her eyes, her eyes told all. I quite literally could not handle life. I could not face myself.
What do I do now? What do I do now? Where do I go? How do I live with myself? This was my first moment of sanity. “Switch your phone off; go home to your wife and parents. Face your truths”. I had broken down and a quiet but strong voice inside stepped forward.