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When I was young my family would vacation at a hotel by a lovely stretch of beach in the far south-west of England in a village called Praa Sands. These holidays were magical: rolling Atlantic waves for sea play; perfect sand for giant beach fortress construction and irrigation systems; Cornish pasties to satisfy voracious young appetites and, of course, Cornish ice cream cornets, topped with clotted cream that melted all over your T-shirt and swimming trunks as you raced to lick your way to the end of the cone. The whole region was wonderful ; pirate coves, steep granite cliffs, deserted tin mines with open shafts that dropped hundreds of feet (great for dropping stones into), ornate fishing villages, and countryside and sea bathed in a silver light beloved of local artists, and uniquely Cornish.

But one summer, at age six, none of the above could generate the excitement I felt when I first met one of the other residents of the hotel; a young, tall man who only had one leg. Apparently, the first time we passed him in a corridor I practically had to be restrained such was my excitement at meeting my first ‘mono-ped.’ And the novelty didn’t wear off either- our paths would cross frequently and at each meeting I would point wildly at him and gleefully yell at my mother, ‘Look mum, it’s the man with only one leg. MUM! LOOK! It’s the man WITH ONLY ONE LEG!!’

Embarrassed, my mother finally took me to one side and gave me a stern talking too; ‘Toffa, it’s not his fault he only has one leg, and he probably feels very sad when you shout about it in front of him. In future when we bump into him please don’t talk about it.’

I obviously got the message because the very next day we met him as we were going to breakfast. I jumped up and down with excitement, pointed a finger in his face and shouted; ‘Look mummy look! There’s the man we mustn’t talk about!’

Embarrassing? Funny? Perhaps a bit of both. But where am I going with this? The first point is: aren’t kids just so honest? My six year old self simply ‘said it as he saw it’. No filters. No blame. I’m sure my mother was equally intrigued to see the one legged man but she was far too grown up to show it.

My real point though, is that I’m now seeing the story from the other side. I am ‘the man with only one leg’.

Not literally of course. Last time I checked I still have two. But good ‘ol #PD is slowly turning me into him. And now I can assess how I would like people to talk or act around me in the light of my disability. I’m sure it’s different for every sufferer. If you suffer from a chronic illness I’d love to hear how you feel about it. I don’t pretend to speak for everyone.

Personally I welcome bad taste comments or jokes-it just makes me feel comfortable. I certainly don’t like to be ‘special’ or thought of as ‘poor Toffa ‘. I am not either of those.

The most public exposure of the illness I experience is my daily commute on the train. If I don’t get a seat the journey is a challenge to my compromised sense of balance. I never ask for a seat of course and I’m embarrassed if one is offered. I notice most adults tend to look away from my struggle – kids on the other hand stare straight at me inquisitively and with no little excitement. And one day it’s going to happen….one day a kid is going to look at me, turn to his mother and say ‘look mom, there’s the man who can’t balance.’ And I’d like nothing better than to give that kid a Cornish ice cream with extra clotted cream.

If you’ve got a moment I’d like to hear your views on this. What’s appropriate, what’s not?

Or failing that your nomination for an ice cream superior to Cornish with clotted cream.

Good luck with that one!

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On some levels getting a chronic illness like PD concentrates the mind wonderfully. You suddenly become acutely aware of your mortality and start remembering the many things you haven’t experienced or achieved.

For me chief among these things is a lack of a career. I have tended to drift from one job to another without any real focus on what I wanted to do – just being grateful to have a job. I have spent the last ten years working in the financial sector – an area of expertise that I am totally unqualified for. My math skills are weak at best and I have learned that ability in these disciplines are often regarded as important for this type of career. Besides the job is boring.

So what to do instead? What better way to figure that one out than to revisit my career aspirations from when I was thirteen? It just so happens I can recall mine:

1. A soldier
2. A footballer for Manchester United
3. A mountain climber
4. A pop star

Lets look at these options a little closer:

1. A soldier

What was I thinking? That’s the sort of job in which you can get hurt. I think getting through the medical might be a challenge and besides what kind of commando division wants a “sharp shooter” with Parkinson’s ? One that’s not bothered by one of its troopers regularly shooting his own men by mistake I think this one is a non-starter.

2. A footballer for Manchester United

Sadly, although very keen, I was never much good at football. It was the fickle fantasy of youth at play. Interestingly however, even with age and PD my doctor reckons I’m still good enough to make the Chelsea starting line up….

3. A mountain climber

Strange choice this because I’m not very good with heights and this can be a nuisance for a professional mountaineer. I could limit myself to hills of less than 25 feet but I’m not sure there’s much money in it.

4. A Pop star

So by default, pop star it is. There are a few obstacles to overcome:

I’m not a very good singer
I’m not a very good dancer
I’m a bit old
I’m having difficulty strumming chords
I’m terrified of being the center of attention

Nothing to stop me having a bit of a bash at it then. I’ve decided that I will be specializing in electronic/dj/dub, because I’ve listened to some and I don’t think it requires any kind of musical ability. Often the songs require just one chord – that’s my kind of challenge.

I’ve not been idle. I have my handle: PopToffa and already have a couple of “works in progress” out on Soundcloud. Okay they are not dub – I’m going to evolve into that (you see I have a career plan).

Check them out and comment and don’t be afraid to be rude – you’ll feel so foolish when I make the big time:

Next time; how the second of these songs will lead to me sharing a hot tub with three scantily clad Norwegian girls. Or if I don’t get enough hits I will write in detail about my current job, with particular emphasis on derivatives. You have been warned.

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I was born and raised in England but having lived in California for the last 13 years you would think I would be bi-lingual. And by that I mean fluent in both English English and American English. Well I’m not. Not even close.

I have picked up nothing in the way of an American accent. This is not deliberate – it just hasn’t happened. My daughter was 6 when we moved here. She left the UK with a broad colloquial English accent; within three weeks of landing she sounded like a native California. Age is obviously a factor but I’m not sure it’s the whole story. Theories anyone?

Why am I complaining? Surely the accent makes me wildly irresistible to American women? Actually it doesn’t. Except occasionally on the phone…… aka “you’ve got a great face for radio”. But the real issue is that many Americans simply don’t understand me. I know I’m a bit of a mumbler and the PD doesn’t help but the bottom line is I might as well be talking in Martian.

I have a particular problem being undenstood by people for whom English is a second language. This was never truer than when a few years ago I dropped my daughter off at a party in Montebello and having had a stressful day and an hour and a half window before pick up time I decided to seek out a Mexican restaurant where I could relax with an ice cold margarita. Of course not all Mexican restaurants have liquor licenses so I used the cars navigation system to locate and call likely candidates. It was a nightmare, typically the conversation went something along the lines of:

“Ola”

“Ola, do you serve margaritas?

“……..what?

“Margarita, the drink, do, you, serve, them?

“Que?”

“Do you have a liquor license?”

“Ah, 4100 Montebello Avenue”

“No, I have your address – I just need to make sure you can serve cocktails”

“Yes, yes we have quesadillas”

“No hungry but getting very thirsty”

“You are angry?”

“No I’m not…..I just want…actually, don’t worry about it – thank you for your time – goodbye”

“Yes, 5.30″

And variations of this with each call. Finding a margarita in Montebello should be a fairly easy task given its 80% Hispanic demographic but I had somehow turned it into rocket science. I was exasperated and running out of time when I tried one more number- and:

“Do you sell margaritas?”

“Excuse me?”

“Margarita”

“Que?”

“Margarita, Mar – gar – ita, MAR – GAR- ITA”

“Ahhhh margarita!”

Finally I’d got through, my fix was within touching distance….

“So you sell them right?

“No, I’m sorry, Margarita no work here any more.”

I think that was the point at which I gave up.

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There is no such thing as a boring visit to Supercuts.

A few months ago I went there and was given a very dubious haircut. Oh well, as mrstoffa says “you get what you pay for”. I was mulling this wisdom over when I got into a car wreck exiting the Supercuts precinct. I was hit at 50 mph by a bright red Mustang, whose driver lost control, span down the street and crashed straight through a shop window. It was a traffic school shop….

My subsequent Supercuts visit nearly got me in a whole lot more trouble. I had neglected to take my meds before going and was suffering my most pronounced PD symptom; a rapid tremor in my right hand. Up until the point I found myself in the chair I had managed to hide it. However, once the plastic cape cover was over me and my arms were confined to my lap, my hand started shaking violently. Now imagine yourself the pretty hair stylist as she looked down at what must have appeared to be an attempt at poorly concealed self -gratification by the English pervert. To her credit she didn’t scream (the shop was full) but did back away rapidly. I pulled up the sheet with a jerk to demonstrate my innocence – this alarmed her even more as she recoiled quickly covering her eyes. Suffice to say that I was eventually able to convince her that I was a chronic illness sufferer and not a show fiddler – though I’m not sure the two are mutually exclusive.

My hair grows rapidly and I’m already in need of a trim – but I think I may just let it grow very long…….and “not get what I don’t pay for”.

Fun with Parkinson’s!

Posted: June 15, 2013 in Uncategorized
Tags: , , ,

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Parkinson’s disease. Yes, I’ve got it, and if truth be known, I am not enjoying it very much. So I’ve decided to start a blog – isn’t that what  anyone facing a chronic illness does in the social networking era?
 
However, if you’ve come here expecting to learn interesting factoids about “PD”, or are hoping to read inspiring tails of how one man is fighting back, you’re probably in the wrong place. I’m not good at illness – I find it spoils what is otherwise quite a good life. Accordingly I have a very logical fear of all things medical. I understand most people go through a period of denial when the symptoms first manifest themselves – well, if it weren’t for my no nonsense other half, I’d still be denying it. So long as its un diagnosed you don’t have it right?
 
No,this blog is not about PD. its not about PD and me either. I can no longer deny the illness – its now obvious to the most casual of observers. But I don’t want it to define me. I’d like it to be incidental, like the fact that I’m of average height, have dark brown hair (mostly) and have always been extremely attractive to women. Actually I wish that last lie did define me.
 
I’ve been inspired to write by friends and colleagues who have  pointed out that I’m not much good at anything else. Actually the hand tremors make the mechanics of writing/typing challenging but I was looking forward to utilising Tumblr’s state of the art voice recognition software. Disappointingly my English accent doesn’t translate very well. For example the 2nd
sentence of this piece”Yes, I’ve got it, and if truth be known, am not enjoying it very much” came out as “Yes faucet, just checking in, I’m not doing very much”.
 
You can’t make this stuff up.
 
That should do it for my blogosphere debut. Next time much less PD and far more about the real challenges in my life; like fellow commuters, work colleagues, well meaning friends, my two oversize dogs, my lunatic neighbor….
 
Also how the sum parts of a hand tremor, a hair cape and a visit to Supercuts almost got me arrested.