Month: October 2018

Parkinson’s disease v JP Sewell

In the summer I had signed up for the Parkinson’s UK cycling sportive which sets off in Ripley and loops 43 miles through picturesque countryside and some big hills. On my recommendation a number of people including Mike and Greg also signed up to do the ride with me. In addition, several people very generously sponsored me to complete the challenge.

When it became apparent during the build up that my somewhat brittle and injury prone body was going to let me down I was embarrassed and somewhat ashamed to give back word to those who had shown me such support and encouragement. As always, my support network did not see things that way and collectively gave a metaphorical shrug and effectively said “don’t worry about it”. The reason they did this was because every single one of them is a great person. Not in a grandiose, historical figure kind of a way. But in the really matters sort of a way. While I loved them for their generosity of spirit my failure to fulfil my side of the bargain really bothered me and has niggled away ever since.

At around 11 am today I decided that I was going to scratch the itch and ride the route. I made brief and tentative enquiries as to whether a few fellow cyclists were about and wanted to accompany me but it was done at the last minute with no expectation that anyone would be able to join the ride. Unsurprisingly no one could or did. So I set off alone.

It felt very cold and it rained a bit about halfway round.

I was going pretty well and felt strong on the way out of Harrogate, up the always surprisingly tough climb to Burnt Yates from Ripley and up to Brimham Rocks. However, there was a significant headwind all the way and the pull alongside the reservoirs from Pateley Bridge to Lofthouse village was hard going even with the sight of a heron taking off from the side of the road as I cycled passed to distract me.

I got to Lofthouse and realised I was pretty much out of gas with the massive climb up Trapping Hill still to come and then the small matter of getting home to contend with.

My stubbornness is a character trait which is a weakness and it gives Karen all sorts of frustrations. I know this and I try hard to curb it. However, when you have to climb up Trapping Hill on a bike in the cold and wind and you are too tired to do it stubbornness becomes your friend.

I rode up SLOWLY. But I rode up. It took me about 25 minutes give or take which is about 6 minutes slower than my best time. But that isn’t important. What was important was that I got to the top.

The other thing about being stubborn is that you tend to only focus on the immediate issue and don’t properly consider the consequences which follow. So I was on top of the world and it was freezing and I still needed to ride home. And now I was genuinely knackered.

So I descended off the top only now appreciating that the descent has lots of ups as well as downs. I got to Swinton Park and thought “I wonder if I go in and say I got married here” they would give me something to eat. I decided this was extremely unlikely so pressed (in the loosest possible sense) on. After some doglegs I realised I was coming out above Masham which felt a long way from home. I was seriously in the red at this point so made an unscheduled stop to take on board cherryade, a Boost and some Jaffa Cakes purchased at apocalyptic prices from a village shop. They were a bargain as I immediately started to feel better.

From then on I tried to keep a steady cadence but went in spurts and at times crawled along. I didn’t take the correct route back as my intention was to go home via Fountains Abbey which I believe was on the PUK ride. However, I popped out with the long straight pull to the top of Scarah Bank ahead of me. I wasn’t going to retrace my steps at this stage and in any event my total trip exceeded the PUK route by 10 miles.

By now I knew I was going to make it. I made my way along the Greenway and up to and across the Stray. I even managed a few bunny hops over the speed bumps. I got home at around 4 o’clock.

For anyone interested I rode just under 53 miles at an average speed of 13.6 miles per hour. I climbed 4,032 feet and was riding for about 3 hours 54 minutes. My weighted average power was 191 watts and I burned approximately 2,401 kj.

I’m tempted to make a few macho statements about never giving up and winning the fight but I accept that the future is uncertain and predictions often make fools of us. However, I can say without fear of contradiction that today I scratched the itch, I refused to give up and I won this particular skirmish. Tomorrow may be different but I try to live in the here and now.

To anyone who reads this you may think this is just a bike ride and you’re probably right. To those who supported me I suspect you know better. I owed you the effort and I gave it everything today. The one thing I can say about my experiences with Parkinson’s is the people around me are the finest of the finest and the best of the best and I love you all.

For My Lads

My beautiful boys, your life is for living.

For grabbing every opportunity you are given.

You may not enjoy your homework tasks,

but do your best, that is all we ask.

Be diligent but make time for joy,

life should be fun for a five year old boy.

Work hard at school and strive to learn

everything on offer so that you earn

the right to choose, to make your choice,

options will arise and you will have a voice

amid the hubbub and background chatter

to make decisions on the things that matter:

whether to work or study more?

Travel the world until you’re sure

about what you should do with your time

although I am confident you’ll both be fine.

You behave like champions with winning smiles,

at cross country running you galloped for miles.

At football you’re unbeatable, at least by me

your winning margin usually exceeds three.

You’re the quickest of bowlers, fantastic with a  bat

Chasing your balls, knocking plants flat.

You get stuck straight in to whatever you do

Enthusiasm and energy applied to all things new.

You eat what you’re given or give it a try

and trying is important and I’ll tell you why.

You both always try your best

for every challenge and every test.

Which makes you special, a couple who smash

every challenge or at least give them a bash.

And that’s why I love you (or at least one reason why)

so whatever you do, continue to try.

Try fresh things, try some old ones too

if they floated your boat when they were new.

But I know you’ll be fine, the best you can be.

After all, it’s genetic – you’ll take after me ………… what? Oh?

 

False News

When did false news become a legitimate repost?

Used by public figures when their reputation is seemingly lost.

They used to bluster and ride it out,

Find a patsy and throw mud about.

Or deny it all: “it was not me.

This is a case of mistaken identity.”

But instead of a tried and tested technique,

Politicians and the like no longer flim flam or sneak.

Instead “false news” is the cry.

“This never happened”, no need to deny

personal involvement or responsibility.

Especially when you can blame it on the BBC,

CNN or the the shadowy liberal elite

as if being liberal requires some great deceit.

And why do the people who claim the news is all lies

spend so much time using a medium they appear to despise?

While not an issue I have to endure,

perhaps less media exposure is better than more

when you have only a fleeting relationship with what’s true?

How about avoiding the media zoo?

And while I’m standing on my tiny soap box

everyone knows life hands out plenty of hard knocks.

So why not try to be kind to others and walk in their shoes?

Give it a try, you’ve got nothing to lose.

Be generous in all things and try to be kind.

Talk to people you come across and maybe you’ll find,

The long forgotten community spirit, of people uniting

Rather than division, resentment and fighting.

 

 

 

 

 

 

 

Sleep

Who knew that sleep was something I took for granted until I became less good at it? You only appreciate such things when they become elusive and by then it’s too late. When combined with my compulsion to check emails and messages it’s a toxic mix.

As anyone who suffers with sleepless episodes can attest, the night can be a lonely place. It’s bizarre how you can be lying next to someone yet feel isolated by your sleeplessness. Perhaps the dark also plays its part but for me it’s the feeling that everyone else is preoccupied and I’m excluded from this recharging of mental and physical batteries. I worry about the impact on my symptoms and am very aware that my mood is adversely affected when I don’t sleep well.

My Diagnosis

My diagnosis was the culmination of various medical investigations which proceeded in parallel. I was having significant problems at work with the functionality of my right hand. It had started to hurt when I typed and used a mouse, to the extent that I first swapped to a totally different style mouse and then began to use the mouse left handed. It hurt to write and swapping to my left hand was beyond the scope of my new found ambidexterity. I was subject to examination by a hand specialist to check, amongst other things, whether I was suffering from repetitive stress injury. I also endured an unpleasant test which involved shooting electricity up my arm which I believe was to check whether I had a trapped nerve or similar problems.

While these issues were being investigated via the doctors and hospital I was also having problems with my knee. It was becoming sore when I exercised, particularly when I cycled. It transpired that this was caused by the decreased flexion in the joint which is symptomatic of Parkinson’s disease but obviously I did not know this at the time. My knee was the subject of investigations which were ultimately fruitless until the Parkinson’s diagnosis.

During this period I was always tired and increasingly suffered migraines. Work was increasingly stressful and it was harder to perform with these debilitating health issues. My confidence was low and I was worried I was struggling to achieve what I felt was required by my senior role. I was incredibly stressed and down about how work was going.

I was bouncing between consultants who specialised in hands and knees and various other medical professionals. I remember talking to the hand specialist who said I did not having any obvious problems with my hands. He asked who I was seeing next and looked knowingly at me as I mentioned the neurologist.

I went to see Mr Henderson at Harrogate District Hospital. He had an unusual manner which manifested itself in never giving a straight answer to a question. He was evasive and tended to answer a question with a question. However, he said he knew what was wrong with me within two minutes of me walking into his office. He mentioned a couple of possible neurological conditions akin to Parkinson’s disease. He explained that Parkinson’s disease was an umbrella term for a number of symptoms including tremor, reduced flexion and and reduced functionality.

Although I was starting to think there was something wrong I was still shocked when the diagnosis was confirmed. I think Karen and my Mum were both upset but also had to endure me in despair when I said some unhelpful and unkind things. Maybe I’m imagining this or maybe I’m not. If it happened then I’m sorry. You hurt those closest to you.

I also remember asking Karen not to put me in a home when I’m unable to look after myself. This was also unfair and again I’m sorry that I asked Karen to promise this. It is not something we ever discuss and the future is so uncertain that it feels like we are best waiting to see how things shake out. However, I always like to be prepared so it’s something we need to think about.

I have very mixed emotions about how to deal with the deterioration in my health. It has been relatively slow but having said that I’m around five years post diagnosis and I’m already on Sinemet three times a day. It probably goes without saying that I don’t much relish the humiliating decline with physical and mental facilities failing. But what is the alternative? Dignitas? Could I put my family through that? Is it worse for them than seeing me unable to properly function? I would never ever abandon my kids if they needed me and I could help them in any way. I’m sure everyone thinks that but the kids’ wellbeing is almost my sole purpose in life these days. It’s one of my few contributions to the machine. I would do anything to keep them safe and if that means manning up and playing the long game then so be it.

For my kids

Uncle Albert, Dicky and Bill  – The fearless ghost hunters

Old uncle Albert lived up on the hill

With his two cocker spaniels Dicky and Bill

And all of the townsfolk whispered and jeered

When ever Uncle Albert and the two dogs appeared

Every Friday for their weekly food shopping trip

And to drop their recycling at the municipal tip

The three fast friends cut an unusual sight

Albert in a jumpsuit spangly and tight

Which brought sniggers and smirks to the townsfolk’s faces

As Albert jiggled and bulged in peculiar places

Though for a man of his age he was entitled to dine

His hospital records said he was 109

Which may have explained why he walked so slowly

But possibly not why he smelled so unholy

Although Dick and Bill may have played a large part

As they both relished a silent doggy fart

To which Albert would exclaim “Well I do beg your pardon…

I wish when you trumped you’d go out in the garden”

But the excuse the dogs had was definitely real

Instead of back legs they each had a set of red wheels

Contraptions Albert had kindly invented

As before when the dogs tried to walk

they were sadly prevented

As the doggies had been born with only front paws

Which originally prevented them from going outdoors

But with their red doggy two wheeled carts

They had no excuses for indoor doggy farts

Now it came to be known that Agatha Toast

Was having strange visitations from an unfriendly ghost

At the guesthouse down at the bottom of the hill

And the haunting came to the attention of Al, Dick and Bill

Now what you should know is they weren’t normal punters

Our heroes were actually fearless ghost hunters

So when poor Mrs Toast asked if they’d come

“Of course” replied Albert “It sure sounds like fun”

When they arrived Agatha welcomed them in

The poor woman was frightened; pasty and thin

”I’m terrified” said Agatha “never been so scared”

She looked worriedly at Dick and Bill; both doggies impaired

And she seemed quite concerned with the figure Albert cut

With his wobbling belly which caused her to tut

But she soon stopped her tutting when from down the hall

There came a horrible wailing, a banshee like call

“Oh goodness” shrieked Agatha “the ghost is here”

“Don’t worry” replied Albert “There’s nothing to fear”

Our three fearless heroes crept down the hall

And were faced with a surprise, not expected at all

There stood a spitting, hissing ghostly tomcat

Flabbergasted stood our heroes, two wheeled and one fat

Then Bill broke the silence with a rasping, loud fart

And off shot the ghost cat like an Olympic race start

“Get him” cried Albert “It’s time for some fun”

And from out of his backpack he pulled his ghost gun

Albert took aim and fired off a shot

The gun spat out some green gloop which looked just like snot

But to Albert’s surprise the ghost cat was fast

And dodging and weaving it avoided the snot blast

The ghost cat raced into the lounge and went behind a chair

Pursued by Albert “You can’t hide there”

The wobbling old fella defying his age

Shooed the ghost cat which was hissing with rage

Out from behind Agatha’s antique

And on went the game of ghost hide and seek

“My good lady, please shut that door super quick”

As the ghost cat was cornered by Al, Bill and Dick

Bill and Dick started barking, they made quite a din

And with the kitchen door closed the ghost cat was blocked in

The snot gun kept firing making the ghost cat all gloopy

As it continued to howl like a rock ’n’ roll groupie

“We’ve got it” cried Albert and threw his special ghost net

Which captured the ghost cat, all sticky and wet

Into a bag went the ghost cat with a yowl

“another trip to the tip” said Albert with a scowl

“You saved me” cried Agatha as pleased as punch

“All three of you are heroes. You must stay for lunch”

And henceforth if a ghost is worrying them sick

The townsfolk ask for help from Albert, Bill and Dick

And when the trio go shopping and to recycle

The townsfolk don’t mock or take the Michael

They shout “Look over there at those three odd looking punters

It’s Al, Dick and Bill the fearless ghost hunters”

So kids remember, if someone looks a little different to you

Don’t judge or mock them – they may be heroes too

Boxcam

100 Miles

I committed to doing a century ride
With superhero Daniel by my side
To raise money for Parkinson’s UK
Not to mention a quiet night away
Like many a plan contrived in the pub
(build up over, here’s the rub)
Was it really the best idea?
Is this just pre-ride fear?
Can I really do this length?
Good idea or nonsense?
Tomorrow we are going to see
Whether success or tragedy
Greets me as I dismount
How many miles will be the count?
100? 50? More or less?
Feeling great or in distress?
Loving friends and family
Always supportive but perhaps don’t see
What this will mean to me
If I don’t finish the course
After all the hot air and discourse
I’ll be left feeling lost
Judging the physical and mental cost

The 100

Two middle aged men
Whose prep wasn’t great
Took on the challenge
But left it to fate
As to whether they’d finish
On the same date
As everyone else
Who seemed a lot stronger
Who no doubt had trained
For considerably longer
But what they didn’t factor in
Is both of us are are naturally thin
Which helps on a bike
Didn’t you know?
There’s less weight
To make you slow
Particularly Chris
Whose recently fasted
And of course, don’t forget
We’re the most stubborn bastards
That you’ve had the good fortune to know
And as I close this rhyme, this farce
I must just mention the state of my arse
Which of all my bits
It took the brunt
As I battled manfully
To stay in the hunt
But even that is beginning to abate
And as I bask in our dual glory
And yes this really is the end of the story
I’ll tell you all something for free
If I say I’m doing another century
Take me out and shoot me

You know who you are

I wish that I could tell you that life will always be fair. But when your path gets rocky

I promise I’ll be there.

And when the path you’ve chosen

may not be one with which I agree.

I’ll support you come what may,

You can always rely on me.

When you doubt or question

the path chosen for you. I’ll walk beside you always

I’ll be your companion true.

Together we will face the challenges that come our way.

We will see it through to the end,

together come what may.

Although my body will fail me

and wither on the vine.

I promise I’ll stand with you

and together we’ll walk the line.

When this terrible curse has taken,

the husband and father that you once knew.

I promise my love will burn bright

and I’ll still walk beside you.

You have my word that the hurt you feel

will slowly fade away.

But my love it will endure and chase the darkness away.