My Experience Shared

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.


Thankyou for your story Wounded Lion.

Your wounds sound deep and painful BUT though you will have scars I think you are now on the right road to healing.  Best wishes to you.    

Hello, Wounded Lion --

I believe that accepting the truth is more than half the battle.  Diagnosis hits everyone differently, but it is in some manner or other a jolt to every one of us pwp.  When we finally come to terms with the disease and the medications, life gets a bit smoother.  It sounds as if you've reached that turning-point.  Now good luck and best regards!

And by the way, though I've had PD 16 years, I still gained new knowledge from your account.  Thanks for bravely sharing.

That was spot on lion.i had dbs in the end.great

Thank you for your kind comments. I was beginning to doubt that I had done the right thing by sharing my story.

it sounded greatsmilewell you know what i mean

Thanks for sharing your story; large parts of it resonated with me and I recognised myself in all of that!