Will I never learn?

Will I never learn that too much wine, or any at all for that matter, is not good for me. It's Sunday morning, ten to six, I've been up for the last 45 minutes feeling much better than this time yesterday. Friday night had been busier than usual – Tae Kwon Do (on my own this time without Antonia, she had a better offer for a night out playing Bingo of all things with Tim and Elise) followed by a very quick very cold shower at the sports centre and then round to Karen's for the monthly book club get together.

The book under review this time was “One Day” by David Nicholls. If you haven't read it, do. It really is very very good. (OK and that's enough of the superlatives.) I hate to admit it, I cried at the end. I know when I'm on to a good read if I start dreaming about it, and when I've finished I can't start another for at least a few days whilst I get thoughts of the former out of my head, which is what happened with this particular book. I didn't get home too late, about an hour before midnight, but having been to Tae Kwon Do followed by book club my brain was buzzing even more than usual, partly due to the rush of endorphins from the exercise, but also from the fast paced talk that goes on at book club. My literary companions are extremely lively characters and seem to have the uncanny knack of switching from one topic to another very quickly. I'm one of the more quieter contributors – its not because I don't like talking, I do, but I just can't seem to get a word in edge-wise. When I do manage to add my four-pennorth I'm normally still about five topics behind, by which point I have well and truly lost the plot!

On getting home (I was driving so had stayed on the Shloer rather than the Chardonnay) I decided to crack open a bottle of wine rather than turn in even though I was feeling well and truly cream-crackered. That was my first mistake. My second mistake was to then flick through the tv channels until I found a film I wanted to watch – in this instance “The Green Mile” starring an actor for whom I have a great deal of respect, Tom Hanks. Having never seen this blockbuster, I decided to stay up, and watch instead of going to bed. Where have I been all my life? Why haven't I seen this film before? It was, without wishing to go overboard on the old superlatives again, extremely moving, and totally and utterly brilliant. I'm not at all surprised it won so many awards. Having settled in to watch this until half past two in the morning, and being completely immersed, I also managed to pile my way through 80% of the bottle of wine before I realised. Tim had given up and gone to bed shortly after I got home, and our girls were tucked up in their respective beds, lost in their own dream worlds, snoring gently. Besides Benji the house rabbit, I was the only one up and about.

Staying up so late and drinking soooooo much wine on my own is definitely not good for the soul – not my soul anyway, or my liver for that matter........ Why oh why oh why did I do it? If I really did need to stay up why didn't I make myself a huge steaming mug of hot milky chocolate – that would have been much better for me. Instead yesterday morning I awoke at my customary half past five, having had about three hours sleep after such a late night, and justly so had the mother of all hangovers. I was, well and truly, a bear with a very sore head. Being in a complete and utter grump I spent most of the day playing Angry Birds and catching-up with my never-ending pile of ironing rather of going down to the farm to do some work – more on that one another time.

A day later I have, yet again, foresworn off the demon drink. It really does not mix well with my Parkinson's meds or with me full stop. Will I never learn?

Life Love Laughter and Learning

I Love my Life, especially when it is filled with Laughter. I’m Learning to Live my Life with Parkinson’s, to challenge it as well as accommodate all the uncertainties that it brings.

It’s been quite a while since I have woken up in the middle of the night with a blog there in my head, ready and waiting to be written. When that happens, I have to get up, log on, and type it up before I forget what I want to say. The result is this, and replaces its former version, originally drafted about a week ago but not published, and titled “Exercise and Parkinson’s”. How dull is that, and my boring rambling spiel on the benefits of exercise and endorphins has been well and truly ditched in favour of this.

A couple of weeks ago, I woke, as usual, stiff and in pain, somewhere between 5:00 and 6:00 in the morning, in urgent need of a call of nature. Having managed to lever myself out of bed, thanks to the re-positioning of my bedside cabinet about a month ago, I shuffled off to the bathroom, stopping off en-route to the loo for my usual early-morning bleary-eyed inspection in the mirror to count the bags accumulating under my eyes and the latest crop of grey hair springing up on my head. The sight that greeted me on that particular morning was not as expected. Instead of looking like I had been dragged through a hedge backwards as per usual, my hair was standing straight up on end, Jedward style. After my initial shock, I started to laugh. 15 minutes later, I rolled back in to bed, tears still in my eyes and chuckling to myself. My husband and two children had slept straight through and hadn't heard a thing. Later, over the breakfast table, my off-spring regarded me with suspicion and I was informed I was unusually perky and chipper. On explaining, the response I got was, typically, “Yeah - what’s funny about that Mum?” Ah well, the innocence of youth. One day, I hope, when I am long gone, they will look back, smile fondly to themselves, and understand at long last what made me laugh on that particular morning. Well, I can but hope can’t I? Having texted one of my Parkie friends later that morning with an account of my early morning hysterics, the response that came back was “Not so much Jedward, as Joward”! We Parkies understand each other – it’s an exclusive club and one which is for keeps. It was the best start to my day for a long time, and I hope there will be many more like it.

This year is an epic one for all of us. London is hosting the Olympics and Paralympics, our Monarch is celebrating her Diamond Jubilee and long may Her Majesty continue to reign over us, and most importantly of all I turn 50 at the end of July. Being in the grip of my own personal mid-life crisis, I have decided that it’s about time I learnt a martial art. After all, I’m at that time of life where middle-age spread is no longer a joke, its reality, and everything is fast heading south. Most of my jeans no longer fit me, and I dread looking like my old Geography teacher, Miss Gage, who had b**bs that, unsupported, had long since passed her belly button on their never-ending journey south! She had obviously burnt her bra back in the days when it was fashionable to do such things, and hadn’t bothered buying any replacements. As God is my witness it’s true – as Jo and Niki who were there with me will testify. The mind boggles!!

Since Antonia started Tae-Kwon-Do a year ago, I have been hankering to have a go myself. I always fancied myself as a Mutant Ninja. Three weeks ago, I finally plucked up the courage to ask the instructor if he would mind if I joined in for one session, and fully anticipating the response of “Sorry – far too old and doddery” I was encouraged to participate. An hour later, I crawled out, sweating buckets, gasping for fresh air and water, having had the time of my life. I absolutely loved it, and so far I am still going once a week. What’s more, Antonia loves my being there, joining in with her. OK, so it’s going to take me twice as long to learn the moves, it’s unlikely I will ever make Black Belt, but I really don’t care – I’m having fun. The exercise is hard work, but doing me the world of good, and for the first time in ages I feel more like my old self before the Parkinson’s took its insidious hold. I must admit, the youngsters are eying me with suspicion and a couple of weeks ago one young lad half my size who could have felled me in the blink of an eye even had the temerity to request the instructor if he could have a different partner when he was partnered with me for the second time in 15 minutes. Oh the cheek! On being refused he rather grumpily put up with me until time-out was called.

So, watch out – there’s still life in this doddery old Mutant Ninja than you could shake your stick at! Bring it on!

The Wrong Trousers

I'd be very surprised if anyone reading this won't have seen or heard of the Aardman classic The Wrong Trousers. In the film the anti-hero Wallace wakes up to find himself in the middle of a nightmare scenario as he is being used by thief Feathers McGraw as an unwitting accomplice in a major jewellery heist, which is achieved by altering a pair of “Techno Trousers” originally purchased by Wallace for walking his faithful companian, Gromit the dog. Wallace is asleep during the main part of the heist and awakes to find, to his horror, that he has been duped by Feathers McGraw and that he has no control over his legs.

In our household the weekday routine during termtime is pretty much the same day in, day out. My alarm goes off at about 7:00 am, although Elise, now that she is at secondary school, is invariably up by this time, dressed and getting her bag ready to go to school. Hmmmm – I wonder how much longer that will last for as we enter the uncharted (or is it enchanted) years of living with a teenager?

Getting out of bed, for me, these days is a major task in itself, and I am hoping this is a glitch associated with the cold and damp weather we tend to experience in the UK, rather than Parkinson's or a trade-off for the multitudinous drugs I seem to be taking these days. If I have had a bad nights sleep – which is not unusual considering I have suffered from insomnia on and off pretty much all my life – I find I can leap out of bed fairly quick. I'm not the sprightly young Gazelle I used to be, but at nearly 50 I can't expect to be. However, a good nights sleep (more often than not recently thanks to the Rotigotine patch prescribed by my support nurse, James, to resolve my restless legs during the night) seems to result in a lot of pain on waking and whilst trying to get out of bed. One such morning recently, I quite literally got stuck halfway – ie I couldn't roll back in to bed – too painful – and I couldn't get up either. On asking Tim to give me a hand, his response was to rollover, push me from behind, and job done. What I actually wanted was for him to come round to my side of the matrimonial bed we have shared for the past 26 years, and offer me his hand so that I could lever myself out. Oh dear – this does not bode well for the future I muttered to myself as I levered myself up off the floor!

On finally being upright and eventually mobile, sort of, and no thanks to Tim, I shuffled off at a breakneck speed, bent double, feeling 99 not 49, and cursing Parkinson's and my husband in the same breath. On finally reaching my destination, the bathroom (I was desperate – for the loo that is) I found that Elise had beaten me to it and had taken up residence behind the locked door for the next 15 minutes or so.

On such mornings as this, it is maybe just as well I wait my turn patiently outside the locked bathroom door. It gives my arms and legs (which frankly seem to be intent on doing their own thing these days when I get up) the opportunity to settle down and start behaving. The alternative, to me, is maybe taking possession of a zimmer frame – over my dead body! But, I can't deny it – when I have the good fortune to have a good nights sleep – I do feel that for the first half hour or so on waking that I am indeed wearing The Wrong Trousers! Gromit!

Step Inside My World

An invitation to Maria Miller (Cons)

Minister for Disabled People

Step inside my world, Maria

And I wonder what you will see

A world of differing greys is there

No colours no, definitely not for me

Step inside my world, Maria

And I wonder what you will see

My huband, myself and my children

Children One and Two, but thankfully not Three

Step inside my world, Maria

And I wonder what you will see

Many differing flashes of light

Representing the physical pain hidden well inside of me

Step inside my world, Maria

And I wonder what you will see

An individual with a (promising) career in banking

That is no longer there for me

Step inside my world, Maria

And I wonder what you will see

A person who has worked all her life

But is no longer able, so it's DLA for me

Step inside my world, Maria

And I wonder what you will find

Someone fighting for her dignity

And the sanity of her mind

Step inside my world, Maria

And I wonder where you will be

When I tuck my children in at night

Knowing I can never ever hug them tight

Step inside my world, Maria

And I wonder what you will find

A bewildering array of drugs for me

That will keep me going (I hope) until I leave

If you step inside my world, Maria

My life is not as it would seem

An independent woman now stuck at home

Relying on others for help, poor little me

Inside what has come to live with me, Maria

Is a monster much much bigger than you would believe

Its name is Mr Parkinson's

An old mans disease I thought (stupid stupid me)

So if you come into my world, Maria

You may find life is not at all as it seems

Each day is a struggle to move at will

Even to an ordinary person such as me

What would life be like for you, Maria

Were you such an unfortunate as me?

You cannot imagine it can you, my dear

Until it happens to one such as you (maybe) and not unlucky me

But I am one of the lucky ones, Maria

I have a pension so you see

My mortgage – it is history

Oh so so lucky me

Others are not so fortunate, Maria

If only you could see

Their homes they wont afford to keep

It'll be a struggle for them, but not for lucky me

So don't step inside my world, Maria

Don't imagine what life is like for me

Even though some days it's filled with laughter

It's laughter mixed definitely with that of fear

So don't step inside my world, Maria

To witness the world of horrors awaiting me

Some days I can move and dance through life

But it is not always there, believe me, believe me

I don't want you in my world, Maria

I don't want to be there either - no not me

It is definitely not a bed of roses

Poor poor little old me

Dedicated to the passing of the Disability Living Allowance

and to all those who will suffer financially as a result

Jo Collinge

Person with Parkinson's

Diagnosed July 2010

Retired from Lloyds TSB January 2011

The European Parkinson's Disease Standards of Care Consensus Statement

After months of careful planning and a great deal of hard work, the European Parkinson's Disease Standards of Care Consensus Statement was launched last Tuesday 22nd November 2011 at the European Parliament in Brussels. The day itself was delivered with military-like precision, under the watchful stewardship of the General Secretary of the EPDA Lizzie Graham. I believe that it is fair to state that without such careful planning the day would not have been so successful.


Even though the EPDA itself has been in existence for quite a few years now, I believe it was their very first foray in to the European political arena, so on the morning of the event itself everyone was on tenter-hooks with the ever present worry that not enough MEP's and Commissioners would attend to make the event a success. However, as the time drew near all the places at the tables were soon taken up and the presentations started, with John Bowis, a former MEP and EPDA patron, moderating. The event itself was hosted by MEP's Linda McAvan and Frieda Brepoels, together with two high-profile European Commission officials in public health and health innovation policy, Maria Iglesia-Gomez and Paul Timmers. 


For me personally, the message really hit home with the patient testimony of Branko Smid from Slovenia, when he made an appearance at the start without the aid of the continuous feed of levodopa in to his stomach - basically his lifeline which enables him to walk, talk and engage with the outside world. By doing so, he had demonstrated in the most shocking way possible the effects of Parkinson's in its rawest form without the control of drugs. In a very short space of time, Branko had become withdrawn, depressed and unable to control his body, in spite of the reassurances of his wife Tatijana. As Branko had lost the ability to talk, a prepared speech was read out on his behalf by Chui Mann from the EPDA. To do what Branko did requires a great deal of courage and trust, it is not something which I could ever contemplate, and he has earned my deepest respect.


Also taking part in the discussions were Professor Bastiaan Bloem from the Radboud University Nijmegan Medical Centre in the Netherlands, who discussed the treatment of Parkinson's Disease, which was followed by a short patient testimony from myself on the consequences of the treatment of Parkinson's on my career in Banking, and the impact the illness has had on family life.


The Consensus Statement draws attention to the economic and social costs of the impact of Parkinson's where the population is not only growing, but also living longer. Its aim is to set in motion what the European Policymakers need to do to deliver a standardisation of care across Europe for People living with Parkinson's and has been launched to coincide with the 2012 European Year for Active Ageing. It is for anyone who is involved in the world of Parkinson's, be they healthcare professionals, research organisations, drug companies, PwP's, family members and friends, as well as patient organisation's. Together with further information regarding the launch, the Consensus Statement can be downloaded at:

www.epda.eu.com/parkinsons-consensus-statement

http://www.epda.eu.com/news/2011-11-22-epda/


http://www.epda.eu.com/epda-publications/epda-plus/download/17/




You can also find reference to it on Twitter from Paul Timmers (Director, ICT addressing Societal Challenges) at:

EIP twitter account @EIP_AHA

The mystery of the missing clothes

Going off to Belgium for a few days, I asked my husband if he could retrieve younger daughters suitcase from the loft as its just the size I needed, and more importantly has fully functioning wheels unlike mine, which is huge and took a bit of a battering when in Stockholm last February. Since then the wheels have refused to work and has a big gouge down one side - but it is over 25 years old so can't expect miracles!

On opening up said suitcase, we discovered that it was already full - of Antonia's clothes, plus a load of sand. It seems the suitcase was never unpacked when we returned from our camping trip to Dorset back in August. Antonia was delighted and picked up her favourite dress which we had bought her in Stockholm saying "I was wondering where that had gone!" Just hoping she hasn't grown out of it........

We're now wondering whether Elise's suitcase also has some similar surprises in store for us. I think that's best left for another day when I'm feeling stronger ..........

Mystery solved!

Doh!

Aracnophobia

Aracnophobia - in literal terms a signficant dread of spiders, regardless of size, hairy legs or no hairy legs, harmless or poisonous.

I have never ever been afraid of spiders, until now that is. My teenage years were spent living in a quintessentially English thatched cottage about 2 miles from where Tim and I and our girls live now. Well, it would have been quintessentially English with roses growing round the front door and the garden lovingly nurtured had my father consented to a considerable sum of money to stop the inevitable slide to wrack and ruin - which quite literally is what happened one day when a significant chunk of thatch protecting us from the elements slid right off the roof and into a nice big patch of weeds and nettles down below. When I say "us", it was the portion of thatch which protected my sister and me from the wind and rain, or rather my sister as it was right above her bed, giving her a nice view of the stars and moon. At that point, my father conceeded to release some funds and the entire back half of the cottage was re-thatched before the rest followed suit. And that was it as far as lashing out any money on our homestead was concerned.

Anybody who has lived even a small part of their lives in a thatched cottage will know that you can get absolute whoppers crawling out at any moment of the day or night - spiders that is. If you suffer from arachnophobia and are seriously considering buying a thatch, forget it, unless you are prepared to get some treatment to cure you of your aversion to our 6-legged friends. Our cottage was long and narrow, with the result that my sister and I used to have to pick our way very carefully through my brothers bedroom to get to ours - a journey which was not to be undertaken lightly I can tell you. To be honest I think the jungles of Borneo would not have phased me as much. The twice daily sojurn into the wilderness that was Ant's room required taking into our lungs as much fresh air as we could muster, and holding on to it as we negotiated an ever changing and perilous pathway to our bedroom door on the other side of the room. The return journey the next morning would at times be equally as hazardous, as more often than not Sue and I would find the pathway blocked by all manner of things which any teenage boy in their prime of life would leave lying around. (Don't ask - too much information!) This was definitely not a journey for the faint hearted. My brother's bedroom? Or spiders? Gimme spiders any day!

It was during these years that Ant must have been going through rather a sadistic phase, as his room would be littered with upsidown glasses housing our 6-legged friends from the thatch and the occasional Daddy-long-legs, in varying degrees of slow death, or decomposition, whilst my brother observed and worked out how long they survived in captivity and once dead how long to decompose. It was around that time that some well-meaning person had given him a box full of glasses which he used to trap the unlucky spiders who didn't manage to escape in time. I'm glad to say Ant doesn't do such things these days! Or does he?

Hence why I am not afraid of spiders, unlike Tim and the girls. Even so, I have been known on odd occasions to balk at the really big ones with the fat hairy legs which seem to find themselves trapped in either the bath or the kitchen sink. But....... thanks to the Parkies, the past few weeks or so have been particularly bad sleep-wise, with the re-emergence of recurring nightmares every night, as soon as I shut my eyes. The last time I was unlucky enough to have recurring nighrmares was a couple of years ago, when for a short while, I agreed with my consultant to try beta-blockers to resolve the shakes, which it did do. I didn't stay on them for long as that was when the recurring nightmares started, night after night. When I made my consultant aware of this he immediately took me off the beta-blocker - apparantely this can be a side-effect. Much to my relief, the nightmares stopped pretty much straight away.

This was the state of affairs sleep-wise until about 3 or 4 weeks ago. The nightmares are now back, worse than ever before, and the content this time features my friends the spiders. They seem to tumble out of the cracks in the walls which exist only in my REM-phase, heading straight for me. The next few hours are then spent cowering under the duvet, whilst convincing myself it was all a figment of my over-active imagination, and not real at all. A couple of nights ago even saw me running screaming down the landing and in to Antonia's room, having first turned on the overhead light in our bedroom, followed by pulling the duvet off the bed without first warning my long-suffering husband. Last night, before I turned in, I decided to get the vacuum out and suck up any of our 6-legged friends malingering anywhere upstairs. This sort of obsessive behaviour is definitely not me. Having finished the spiders off once and for all, I was soon fast asleep secure in the knowledge that I had taken action and banished the fiends once and for all. Or so I thought! Having reached the REM stage, the dream came back, stronger than ever, and as usual slightly worse than the night before. Hence this blog - I'm fed up and don't want to play Parkies any more.

Having had the pleasure of meeting Branco Smid from Slovenia about 6 weeks ago, I had a bit of a father-daughter chat with him about my REM sleep disorder. Branco, now in his late 50's, was diagnosed in his mid-20's and is well known on the PD-European circuit as he has dedicated his life to raising awareness of this so far incurable illness. Branco's advice was well grounded and to the point, as he made it absolutely clear that I had to sort out my sleep hygiene as a matter of priority, before it finishes me off for good. Having discussed this with James, my support nurse, a letter from my consultant arrived this morning agreeing to James' suggestion that I try a dopamine agonist patch overnight to see if that will improve matters. I am worried about this solution to the night-time terrors and that this may bring back my love of money, or rather spending what I don't have. But desperate times call for desperate measures, and I'll try anything, even if it means that I surrender control of my purse and its contents to Tim. James seemed to think the risks of side-effects are minimal, as the effects of the DA patch stop the instant I remove it when I wake up.

Nightmare! Anyone for a game of roulette?