The Strange things People say.

One of the things you need to decide, upon diagnosis, is who to tell, when to tell and if to tell. And deciding the answer to these questions can be difficult.

There is a lot to consider; 

How the person or organisation will respond. 

Do they need to know, will it be unkind not to tell them?

Is the kind thing not to tell them?

How will they respond? 

Of course, you could just say bollocks to it and come to the conclusion that too much over thinking was a waste of time and to decide on a whim whether to tell someone or not, although I would suggest that it would be better if 'said' whim led you to tell the parents and wife. 

They may not appreciate finding out from others.

Why are people SO unreasonable? Especially family.

Anyway, I took the decision to tell pretty much everyone, mainly because I couldn't think of a reason not to.

This despite advice from the wife, who urged caution in telling my employer. She had been advised by a friend of hers, who happened to work with Parkinson's sufferers, that my employer might be unsympathetic and look for a way of ridding themselves of a now 'problem' employee.

I told the wife not to worry, because despite having given them plenty of ammunition over the years, so far I hadn't even received a warning. 

She didn't seem reassured. 

So friends, not limited to the small number who would be willing to own up too it in public, family and employer were duly informed.  And it was very interesting how people reacted, made more so because most people know very little and understand even less, about Parkinson's. Some knew about the shaking, but I don't believe that there was anyone in my circle of friends and acquaintances with a significantly deeper understanding than that.

Actually that's not quite true, I knew two people, not well, who had a direct and deep knowledge of the disease, but I'll come to them later.

Which in fairness, was pretty much the limit of what I knew up to my diagnosis and for some time after. So don't take my observation as a criticism. 

The first group I told was my WhatsApp men's group of drinkers, linked to my Church. I suspect that some of the group will take exception to this description. But I cannot tell a lie! And the response was pretty much as expected, kind promises of help and prayer, along with offers of being taken to a pub for a drink. Or two.

I'll let the reader decide for themselves which kindly meant proposal I found more appealing.

All well and perfectly normal. Things got a bit more challenging after news of my condition leaked into the congregation. The following Sunday morning I was approached by a youngish (by Church standards) member of the congregation;

"Good morning, I was hoping to speak to you today"

Me "oh right, what about" knowing full well what the topic was likely to be, my diagnosis and how they would pray for me etc. I got a bit of a surprise.

"I heard about your news and I just wanted to check that this wouldn't damage your faith and reassure you that God DOES love you"

"Er, yes, great thanks"

"Well has it?" she was certainly determined

"has it what?"

"Damaged your faith"

Tbh, and I'm not entirely sure why, but this irritated me. But in a world where on a daily basis, women and children are murdered, raped, forced into the sex trade and men are conscripted into military service and made to fight and suffer horrific wounds and deaths, I have frequently been irritated and annoyed by some Christians complaining about their often trivial little challenges and how it leads them to question their faith. 

At my most judgemental, it seems to me to be a faith blind to all concerns but their own. But I'm probably being unfair.

So what I wanted to say was, "no having Parkinsons hasn't bloody well damaged my faith, there are bigger things I find much more challenging" 

But I didn't because I knew she was just trying to show her concern and support. Besides the wife would have had something to say later.

Other friends reacted differently. Some clearly thought my time was limited;

"How much time does he have left" a couple asked the wife

"To long" was the reply!

Others clearly didn't really know what it meant;

"Oh Parkinsons, I don't know anything about it, but I'm sorry to hear your news"

One person I knew who did have direct experience of it, because his wife had suffered from it for years, was both reassuring and depressing at the same time and it was that little chat that started bursting my Parkinsons complacency bubble. It was the first time I heard of Parkinsons dementia. Like most people I hate the idea of getting dementia, it is a cruel and devastating disease, and to find out I had just increased my chances was profoundly depressing. 

Its a challenge I'd happily skip.

Others were more reassuring;

"My Grandfather got it", you don't 'get' or 'catch' Parkinson's, but I digress "It was no problem, he lived for years with few issues"

Which was good to hear, but was no guarantee that this would be the same for others. There is no single path with Parkinson's, although there is a lot of overlap.

My employer was very understanding and after years of being diagnosed, has still to sack me. Indeed has made every effort to be supportive and helpful when needed. I know not every employer will be like this, but a lot are. You need to make the judgement about if and when too tell your employer yourself. 

And then, finally, there are those who are clearly embarrassed and don't know what to say, who shuffle their feet and stare at the floor;

"Oh right, yea great. Thanks"

But my mother eventually got use to the news and tried to make up by bombarding me with a load of books with advice on how to "beat" Parkinsons and reclaim your life. One day I'll get round to reading them.

In the main people try to be kind and supportive, there were people who clearly struggled to know what the correct thing to say was, but that didn't matter because they were at least trying to say the right thing and most of us find such situations challenging. 

And despite being through it, I would probably still struggle.