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!

Harry

Nothing happens the way you planned it.

This statement is the opening line to a book I have just started to read - and had to put down straight away to write this blog - the first blog after a three week break. The book is by Ken Follett and called "The Pillars of the Earth". I have no idea really what the book is about, and all I know is that should I live long enough to read all 1,076 pages of it, it will be nothing short of a miracle.

When I married my husband 26 years ago, had we but a crystal ball to look in to our future, I suspect we would  have run screaming in opposite directions. To say that our lives have been eventful is no joke, and we have come perilously close to personal disaster on too many occasions which has seriously affected the strength of our relationship. Somehow we have made it to this point in our lives, but the events of the last three weeks have been, at the risk of sounding trite, worthy of an Eastenders plot. Had I been given the power to change the course of the last few weeks, and even the last few years, I would have done just that. Suffice to say - being told I have Parkinson's has turned my life upsidown, inside out, and that of my husband and children.

Three weeks ago, I was lucky to survive what should have been a fatal car crash. Not only that, but I walked away from it without a single scratch, with (miraculously) no-one else involved. That said, the mental scars will stay with me I fear for some time yet - how many times will I have to relive in my dreams the seconds before I am hit by that juggernaught? Until then I had a squeaky clean record. Having registered a breathalyser test of zero, I was "banned" from driving in real life by Traffic Cop Tony Curtis (yup - that's his real name - I  kid you not and I have the proof). As a result, I am confined to barracks (that is, my house) for an indefinite period, unable to drive. In a complete and utter state of shock and definitely not firing on all four cylinders at the time, I surrendered my driving licence and hence my liberty and freedom to roam the highways of England to said cop in exchange for a mere slip of scrappy paper. I later discovered that Paul, husband to Wendy (of canal walk fame who managed to get us lost....but that's another story in another universe far far away.......) drove past the accident scene some 15 minutes later but didn't register that it was my poor car who was an abandoned quivering wreck in the central reservation, otherwise he would have stopped. Just when I needed a  man to be batting on my behalf as well!

Unable to cope with a bicycle with 28+ gears (I used to fall off even without Parkinson's), the nearest village with shops is an hours walk away (Parkinson's permitting). So far I have made that tortuous journey on foot three times. The village itself is hardly a bustling metropolis and on Saturday afternoons you can even see the odd hay bale being blown across the High Street in true spagetti western style! The strange thing is that on that fateful day three weeks ago, a day on which had the coin landed the other side I would not have survived, my oldest friend from my school days sent me an e-mail saying that she had been thinking about me and was wondering how I was. My response, typically, was "To be honest, not so good". How she knew to e-mail me that day, I really don't know, and we managed to catch up with each other about a week later on the telephone. Niki is one of the rare gems, correction - one of the corner stones in my life who has kept me going. We haven't seen each other in a good while, but that doesn't matter. Niki is, and always will be, a friend who I will trust to the end of my days.

Another corner stone over the past two years have been my book club friends. It's my book choice this month and I suspect something afoot planned for this Friday, which had been postponed from last week. Asked if I would like to go out, or stay in, I voted for out - not only that but to go and get hilariously and utterly plastered. OK, I know this won't mix well with my drugs, and I wouldn't be at all surprised if my dear book lubbers are drawing the short straw for taxi driver. I don't mind walking to the pub, but to be honest, I don't fancy the slow crawl back.

And as for getting back on the road, I really don't know when, or if, that will happen. As for my dear little car, "Harry" was written off and is now a cube of metal. Having bought him when brand new, he has been an absolute super star over the years and has never let me down. The reaon why I chose this car was that it was top in its class for safety and reliability, and just as importantly in my price bracket. Eleven years on, with nearly 150,000 miles on the clock, Harry really came through for me and saved my life.

And as for what caused the accident? The only logical conclusion is Parkinson's and/or Parkinson's meds causing an unexpected onset of day time sleepiness...... At this point, I would like to say a huge thank you to those who stopped and stayed with me until the paramedics arrived, as well as the lorry driver who kept the traffic moving and prevented any further accidents.

As I said, nothing happens the way you planned it - well not always.

Oops

I'm not much of a poet, and I know it! (tee hee!) But that said, I published this under the MASH section of WobblyWilliams.com prior to becoming a regular "Blogspondent" for Bryn. It had been badly written by me in the wake of an hilarious case of mistaken identity on the morning of the last day at the World Parkinson's Congress this time last year in Glasgow. We had had a fantastic week in Glasgow - we had met so many people, had had one too many very late nights, and my liver was seriously needing a week or two to recover.

It was the last day of the WPC

The WPC being “World Parkies Congregate”

I was tired and suffering from lack of sleep

Too much wine was had at the Wobbly Banquet!

After breakfast on that fated morning

Back to the lift I went to go back to my room

On getting to my floor on the 5^th as I selected

There I met Voluptuous Vicki and her beautiful sister

After chatting a minute or two on my way I went

On my way went I, I went to my wonderful room

Having no key on me on the door I knocked

My husband having gone ahead of me some minutes earlier

As I said, on the door I knocked and suggested

“Hi Honey it’s me, your darling beautiful wife

Let me in so that we can cuddle”

And other such innuendoes not to be printed

(Well – I was taking advantage of not having our children around.....)

The door was opened a fraction or two

To reveal a chap I never knew

Behind his wife with a questioning face

“Who the heck are you and what are you doing here?”

I looked at the door, and realised to my amusement

The wrong floor I had got, and I was sober (just about!)

The room I had got on the 4^th floor it was

The room I wanted was on the next floor up!

Ooops!

(Huge apologies to the nice man and his wife in room 425!

A marital row I sincerely hope I did not start!)

The importance of "Get it on Time"

I was frankly absolutely appalled when I read the article yesterday afternoon in the latest edition of "The Parkinson" about the treatment that was experienced by David Hutchings whilst in hospital in 2008. In fact, I am so appalled that my customary ability to adequately type at the moment is littered with mistakes and my fingers have gone on strike. The resting tremor in my right arm is as bad as it has been in a long time! I was wide awake at 4 o'clock this morning thinking about this, and as a result here I am, an hour and a half later, at my PC, blogging.

I'm not going to repeat the story here, there is no point. But, if you haven't read it, you should - its on page 20 and is titled "This shouldn't happen to anyone else". On recounting the tale to my husband and my mother, they were as appalled as I was. The treatment David and his wife received was unbelievable and the consequences were frankly catastrophic. Not only that, but the costs which would have undoubtedly been incurred to the NHS were costs that could have so easily been avoided had David received the right meds at the right time. In short, David and his wife were robbed of what should have been a well-earned and happy retirement together.

Unfortunately the older generation, instead of receiving the respect and due care and attention that is rightfully theirs when in hospital, can be at risk of being victims instead. (I would like to point out here that I'm not saying this happens in every case, and I would hope that at best these instances are a rarity.) Last August I found myself in the unfortunate position of witnessing such treatment to a lady in her 90's, when I found myself back in hospital following post-op complications. [I hasten to add the hospital I was in wasn't my usual hospital as we were away at the time with friends.] Had I not been confined to bed having a blood transfusion at the time I would have done something about it. There was a young girl opposite me, who at 20 was young enough to be my daughter, who also heard what was happening. She was as concerned about the way the patient had been treated as I had been. I don't know whether she took the matter up with the Ward Sister before she left or not, but the following day whilst waiting for my husband to come and pick me up, I made sure I did. It was the least I could do.

When I mentioned the article in The Parkinson to my mother, she immediately said to me "Don't worry, I'll make sure you don't get treated like that next time you're in hospital. I'll be on your case straight away". My mother, bless her, is a formidable lady when on the warpath and I am extremely grateful to her for her support over the last 2 years and long may that continue. But, I also have no plans or desire to be in hospital for a very long time.............

OK - rant over. I shall get off my soap box now. xx

Drama Queen Reigns Supreme

Its been a bit of a long road, as can so often be the case with Parkinson's, but at long last I'm starting to feel that I'm back in the driving seat, in control of my movements, enjoying life, not feeling like I'm having to explain my mumbling stumbling self to strangers, whilst trotting out my standard phrase "I have Parkinson's" and wanting to add on "I am not an alcoholic!". Its getting to the point where I feel tempted to have these words tattoed on my forehead. Joking aside, I'm even happier when close friends say that if they hadn't have known I had Parkinson's they would never have guessed. Wonderful - their words are truly like music to my ears.

For the first time in a very long time I am confident, look well, and am enjoying the summer (OK, well not today when it has rained cats and dogs from dawn til dusk....). I try and get to the gym 3 times a week (more like once or twice at the moment). Its a form of exercise I'm really getting in to, and having started off saying that I was only interested in doing cardio-vascular work, I'm now getting more in to the weights training. My shoulder no longer gives me grief, and I can even manage to hop out of bed in the mornings with a twinkle in my eye, a spring in my step and feeling almost as fresh as a daisy, rather than go through 15 minutes of agony whilst I coax my muscles back in to life. Stress is no longer an issue and I feel strong enough mentally to not having to worry as much about the future.

And why this turn-around? Its not because I have been miraculously cured - for Parkinson's there isn't one - yet. Its because I feel satisfied that the drugs combo that I am on is giving me the best quality of life I can get at this moment in time in terms of the Life/Parkie levodopa balance. I saw my consultant just before we went to Dorset and he is happy - he doesn't need to see me now for a whole year. A whole year - again, music to my ears - I'm a free woman! That is, until last week when my ever constant companion tapped me on the shoulder, whispered "Boo" in my ear and gave me the fright of my life.

We were back at the Dorset coast, same set of friends, different campsite - Durdle Door this time. Tim had a name change and became Tom for the week - same husband, but that's what this particular set of friends call him. We had had a wonderful week and my children looked more like ferral children for having been living in the great out doors. It was Elise's second week of camping with the exception of 24 hours home, as she had been away at a Guides camp in south Wales. We had with us for the week a friend of Elise's from school, she was a wonderful guest and can come camping with us any time. All nine children had got on very well, we had hardly seen them as they only returned from their day's roaming the camp site for food, drink and sleep. We were coming to the end of our stay - with our friends plus their kiddies having packed up and gone home, back to their respective lives, leaving us on our own until the Sunday. Tim had decided to go in to Dorchester for a change of scene as the weather wasn't really conducive for the long trek down to the beach. On the way back in to the camp site, Tim parked so that I could nip in to the camp shop to get a bag of ice, as our nice new three way fridge had given up before we even had a chance to use it in anger. And that was when it happened. One second, I was walking towards the shop, the next I saw the ground coming up at me, almost in a dream like sequence. I heard someone screaming - and then realised that the screaming was coming from me..... And I would like to add at this point that I am not a screamer - except in my sleep that is! I had fallen over on the road outside the shop, in full view of a lot of people, almost as if I had been a pin in a bowling alley. The inbuilt motor reflex of putting my arms out to break my fall had failed, and I had landed smack on to my face. There was blood pouring from my nose and on to my white top..... I was panicking that I had lost my two front teeth, and couldn't see where I was for the tears. In short, I was being a total Drama Queen about the whole thing. It seemed to me ages before Tim got out of the car and bundled me back in - everything was in slow motion. His first reaction was to go back to Dorchester, back to the hospital where I had spent 5 days exactly a year ago, but I managed to persuade him I was OK. We are both well aware of what to look out for with head injuries - we had been there when Antonia was ko'd at her 5th birthday party a couple of years ago.


Instead, I was taken to the ladies loo's so that I could get myself cleaned up and to calm down. I was in a state of complete and utter shock, it was my worst fear come true. I was always falling over as a child, constantly sporting scabby knees but on reaching my teens had grown out of it. It was the first time in all those years that I had fallen over - OK I've had a few stumbles now and then, but nothing like this. At this point I would like to say a huge thank you to the very kind lady who was in the loos with her grandchildren, and who came to my rescue. Elise was rather at a loss what to do with her hysterical mother and was probably somewhat shocked herself, whilst Elise's friend started ministering to my cuts and grazes. Antonia, bless her, was doing her very best to cheer me up by patting and stroking my back. I was terrified I had lost some teeth, but on close inspection they had survived intact! A relief, as I really wasn't relishing the prospect of my dear husband seranading me with "All I want for Christmas is my two front teeth...." My nose, on the other hand, didn't seem to be broken but did have a rather nasty graze on it, as did my chin and both knees. My hands, meanwhile, got off lightly - the traitors - along with my brain, what there is left of it. The following day I went back to the scene of the accident and looked for evidence of anything that might have tripped me up, but didn't find anything. To say I am feeling somewhat of a fool is an understatement. And to cap it all my favourite pair of sunglasses were ruined beyond repair!


So, its now a week on. I had originally planned to stay a second week at Durdle Door on my own with Elise and Antonia whilst Tim went back to work, but decided against it. I have lost my confidence a bit since the fall, and having looked at the weather that the Dorset coast has had yesterday, I think we could have possibly lost the tent in to the bargain! Added to that, Elise was keen to get home, she had had enough of camping and wanted to sleep in her own bed for a change. I know precisely where she was coming from. After my rather spectacular fall, I had been struggling to get moving in the mornings. My scars and scabs have healed and almost disappeared apart from one scab on my chin, and a rather nasty infection on my right knee which so far has resisted antibiotics. I went back to the doctors today and am now on a different course of penicillin. I really do hope these ones do the trick, as I know that Tim is concerned about MRSA. (At this point I need to add that on my first trip to the Doctors at the start of the week, I saw a locum who remarked on my rather interesting combination of drugs - he said he would never have realised I had Parkinson's - yay!)

So, having always been rather irritated by Drama Queens, I can now say that this Drama Queen is off back to bed, hopefully for some sleep which has been elusive since we got back home.

Destiny's child

This blog was originally written about three weeks ago, but since then events overtook its publication. The historical facts I have written about here are, the best of my knowledge, correct. But I would like to point out that I am no historian, and the facts have been pulled reluctantly from my memory and dusted down.



Last night I dreamt I was Jewish. Not only was I Jewish, I was also living and working in Poland in the late 1930’s at the time when Hitler’s anti-semitism movement was really gathering pace. To be honest with you, it was bloody with innocent victims indiscriminately picked out and slain in the streets, their only crime being born Jewish. In my dream I was absolutely petrified as I was herded in to a cattle wagon, separated from my husband and young children, and shipped off to some God-foresaken destination only to be slaughtered like an animal on arrival. In my dream I was there, I could smell the fear of my fellow travellers. I not only saw their suffering, I shared it. When I woke up, I can’t begin to tell you how relieved I was to find I was Jo, living in the UK, in the early part of the 21^st Century.

Why did I have such a dream? I have absolutely no idea. Yes, I have read Anne Frank and I’m sure I read it as a teenager, although I cannot be 100% certain about that. But I have read it recently, finishing it a couple of months ago. Anne was indeed a most courageous young lady, a heroin of her time. And as time went by, she seemed to know what her fate was going to be. It wasn’t of her choosing and given a choice she would have been free, on her way to becoming a famous author/journalist as life had originally intended for her. It is ironic how she achieved her ambition, albeit posthumously. It is due to Anne, and others like her, that we can understand how terrible it must have been for the Frank family and their co-dwellers, having to live cheek by jowl, keeping absolute silence, hardly daring to breath in case of being found. Somehow they managed to survive, in spite of eating scraps and mouldy potatoes as food became more and more scarce. It is so sad that they nearly made it. Victory and release from their self-imposed prison was a matter of months away. For them, there was no industrialist giant such as Schindler to give them shelter, a sanctuary, a possibility of escape. But at least they had help – and those who helped them risked just as much as Schindler did.

So why did Hitler do it? Why did he hate a race so much that he not only wanted to punish it, he wanted to eradicate it. Why, when as far as I am aware, he was part Jewish himself? Why was he obsessed with his Aryan ideal becoming the master race? What would have happened had he succeeded in his ambition to wipe the Jewish race off the planet? Would his creation then have turned on him in the end, destroying their creator? I think so – but I’m sure there are people out there who would disagree with me. Why did he do what he did to a race that contributed so much to the economy of Europe at that time? The Jews were successful in every walk of life. They were Doctors, Dentists, Lawyers, Architects, Accountants, Musicians, Teachers, even Butchers, Bakers and Greengrocers. Was it that he did not have the capacity to achieve what his countrymen did that made him turn on them – his history, the very stuff his genetic makeup embodied – that made him want to destroy so many? Someone told me recently that Hitler had Parkinson’s. I don’t know íf this is true or not, and maybe as a result of his inability to control his own body he became obsessed with what he felt should have been rightly his.

And in spite of all that was witnessed when World War II finished, why have others gone on to do what Hitler did - turning on fellow mankind in a bid to eradicate them because of their religious beliefs?


Had I gone on to study History at University and fulfil what at one time seemed to be my destiny to teach the subject, as my Aunt had before me, I would have then been able to answer my own questions. Would I have been as successful a teacher as she was? I feel it necessary to explain at this point that as a child I was sent to a Catholic Boarding school courtesy of Her Majesty's Armed Forces. My Aunt at the time, having entered the Convent as a Novice about 4 years after my mother had left school, was living and teaching at the sister Convent in Surrey, hence why I was sent to Dorset. But in spite of the best efforts by my parents to avoid the embarrassment of Helen ending up at the same school as me, fate laid its cards out and and she ended up as one of my teachers. She was gifted at teaching and she made the subject come alive even to the point of embarrassing me with stories of my mother as a child, much to the delight of my classmates, upon which I used to open my desk lid and try to hide under it. It was undoubtedly my most favourite subject at school though, and it goes without saying she was my favourite teacher in spite of everything. (I would like to add at this point that although I wanted to teach, I had no intention whatsoever of ever becoming a Nun!)

But instead of treading a path similar to hers I chose to turn my back on my destiny and I chose to leave school at 16, to do a year’s not so hard study at college to become a Secretary. Having met and married my husband I ended up working in banking for 23 years and studied in my spare time for a degree with the Open University. I also managed to make the precarious leap from Secretary to Analyst - which at that time seemed practically impossible due to the old fashioned way in which the male-dominated Bank was run at the time. But made it I did, and without wishing to sound immodest, I was damn good at what I did - until the Parkinson's struck that is.

So, here I am, fulfilling my destiny - alive (just about!), married, two children, a degree with the Open University together with a smattering of O and A levels, a handful of other qualifications relating to my profession, and 23 years loyal service to the bank with the Black Horse and a Scottish Widow. I had for a number of years been in a role I found fulfilling and that I was good at. My intention was always to retire at 50, which I managed to achieve two years early, but not for the reasons I envisaged. I always thought that when I retired I would be at that lovely stage in my life when my children are spreading their wings and being income independant would abandon the parental nest, leaving Tim and I to enjoy our well-earned retirement in peace and financial security, travelling the world and enjoying our Grand-Kids before infirmity struck us down in our old age. Instead though, fate has dealt us a curved ball, with infirmity striking before I had a chance to finish enjoying what should be my prime of life. Instead I am fighting a loosing battle against my mate Parkie (in spite of rigorous sessions at the gym) and coping with a brain at times befuddled as if drunk on life itself. On top of that is the prospect of one day in the future being dependant on my family and/or strangers for assistance in the fulfilment of my everyday basic needs. Horror of horrors - not if I have anything to do with it!

For the first time since leaving college aged 17, I am out of work, nothing doing apart from the odd bit of gardening, earning no money, stony broke but at least a roof over my head which is all paid for and which belongs solely to me and Tim. I can't even afford to replace my car, which is slowly falling to bits - like its owner! The day I retired I put my life plan through the shredder then on to the compost heap at the bottom of my garden, slowly being mulched away to become organic matter for my vegetable patch. Am I bored? Not yet, and I hope never to be. I have to take each day as it comes though, each morning on waking I fight a battle to gain control of my motor and non-motor functions, from the moment I fall out of bed and shuffle like an old lady to the bathroom to carry out my morning ablutions, to the moment I fall in to bed at day end, dog tired. Yet as I drift off into sleep, it is in the certain knowledge that as I hand over control of my mind and my body to my mate Parkie I face yet another night of either sleepless restlessness as tonight, or a night of nightmares and hallucinations, at times even thrashing about so much I inadvertently injure Tim. I seem to recallbeing told the night before last that Yes, there was a white cat sat on top of our bedroom door, and last night Tim telling me to jolly well shut up and to go back back to sleep! He was somewhat fed up, and I can't say I blame him, so am I!

I once heard Bryn Williams describe Parkinson's as being like having one's body slowly encased in concrete. A horrible prospect, but unfortunately true if Parkinson's isn't stopped in it's tracks and kicked in to touch - back into its box where it belongs!

And God made little green apples (or did he?)

I love watching my children whilst they are fast asleep - they both look so angelic and butter wouldn't melt. Often being the first to wake up, the job of getting the girls up and dressed on a school morning tends to fall to me as the "morning person" of the household whilst Tim heads down to the kitchen and gets their lunch boxes sorted. But rather than my rushing about in headless chicken mode (once I have got moving that is which on a bad day can take a little while), they both tend to react better to the softly-softly approach. This is the path of least resistance, I have tried many different ways, and this approach is best in order to avoid an argument and a refusal to get up, which is both time-wasting and non-value added.

But I really don't know why, I occasionally feel like being mischeivous where I tickle Elise under the chin, whilst making soft baby noises - along the lines of  "who's my lickle ickle baby girl" and " cudja cudja coo" and other such non-sensicle statements like "here comes the tickle monster" ..... well, you should have the drift by now. I think it hilarious but Elise's reaction is never favourable, and on a good day she will cock one eye open, look at me and then turn over whilst muttering under her breath "For Gods sake Mother". On a bad day though, its a different matter altogether.............. well lets just say it makes for an interesting hour until she leaves the house to go to school. Sometimes the temptation not to block her nose or tickle her eyelashes is almost over-whelming. I have also thus far also resisted the temptation of rousing everybody (neighbours included) with a rendition of my newly acquired LSVT vocal exercises! My household is not a morning household regardless of the time of year and unless I want WWIII to break out under my roof, I tend to leave this treat until a more appropriate time of the day - normally when I have the place to myself.

Instead, the practical jokes are put to one side, and Antonia unwittingly rouses her sister from her slumber instead. Whilst she is still half-asleep, she instinctively goes in to cuddle-mode and I carry her in to her sister's room, these days with my knees buckling! As time goes on this is becoming more and more of a challenge, and one day she will just be too heavy! Antonia loves waking her sister, and she does this by nestling in with Elise whilst giving her the mother of all cuddles - what a way to wake up and I know Elise absolutely loves it.

But as sure as eggs are eggs and God made little green apples (or did he?) both my children are starting to spread their wings which will eventually lead to them living their own lives away from the family homestead. This is inevitable, as is the likelihood that the drugs regime I am on will over time cease to be as effective - when precisely is anybody's guess. Unless a way of halting or even reversing Parkinson's is found, my options will in time run out - like the grains of sand in a glass jar. I am not the only one to be facing this fate, there are hundreds of other PWP's who are on the same road, some ahead of me in the distance, others along-side and more following. I would like to point out here that I am not being negative - just realistic. However I don't like looking in to what the future holds too much, it really does scare me and it may never happen. Instead I just live my life for each day whilst making plans only for the near future, and I celebrate what each day has to offer. Being an independent lady (in character that is, sadly not in finances) I have made it clear that I do not want either of our children to stay at home once their education is finished. My work will not be done, and Tim and I will have failed as parents, unless they both go out and discover what the world has to offer. I don't want either to become my carer - that is so not an option and for me it will be allowing my mate Parkie to rule my life.

But, when all is said and done my children will always and forever be my precious babes, no matter where they are and what they do!

Sports Day

This blog is dedicated to Lawrie, a true gentle gentleman, who quietly slipped away from this world in to the next without warning in his sleep two days ago. Our thoughts and prayers are with Nancy at this unexpected turn of events, at a time when they were finalising plans to travel the world after retiring from their careers later this year.

With my children now being in seperate schools, I have wondered whether we would suffer the consequences of diary clashes especially with respect to the all important end of year Sports Day. This, to me, is the most important day in the school calendar. Being in possession of absolutely no sporting prowess what so ever, my parents showed little interest in this important day when I was growing up, being confident that I would always come last – and did! My sister, being at a different school to me, showed talent from an early age as a middle distance runner, but as a result also had to suffer the ignominy of my father standing on the sidelines bellowing at the top of his voice for her to “Get a Move on” and other such phrases! To my knowledge, she never ever failed to deliver and I know my parents were very proud of her achievements.

So on to 2011. Antonia's sports day took place yesterday having been postponed from last week due to inclement weather, Elise's is today. To say that Antonia absolutely loves Sports Day is an understatement. In her mind, it is not the winning that is important to her, it is the taking part. Her favourites seem to be the running race, and the all important team relay at the end. True to form, she delivered and performed as expected. On taking up the baton in the relay, with the largest smile she could muster and her face and eyes shining with the excitement of it all, she set off down the field at a fair pace. OK, so she wasn't running very fast, and I have no doubt that she wasn't achieving her true potential – but to her it wasn't important. In her eyes she was the winner and I wouldn't have been at all surprised if she had given high 5's all the way along with the cheering crowd. 

Elise, on the other hand, has inherited my sister's physique and talent for sports, and today will be her last Sports Day at Primary School. Elise has always done well on Sports Day – she is not only a strong contender, she also encourages others in her team to do as well, if not better. She is quite frankly sports mad, and I wouldn't be surprised if in time she inherits my sisters childhood nickname of “Muscles”. The past week or two has seen a lot of sporting activites in Elise's diary, including taking part in her very first mini-marathon last weekend. In spite of being given a training plan by her teacher, Elise's preparation for this event was minimal, but I needn't have worried – she came 4^th in a field of about 30 girls.

Having woken up early and checked the forecast, it looks the same as yesterday - the risk of some heavy showers. However, there is an additional snag in the plans. Elise, having been to gymnastics training last night, managed to pull a muscle in her back, and in spite of sleeping well she is still in pain this morning. Although she puts on a brave face, we know that she is worried and upset about the possibility that she may not be able to run later today. Being single minded though, Elise later decided that she would run and took part in her two favourite events – the middle distance race and the sprint. The sprint saw her come in well ahead of her opponents, whilst she timed her race beautifully in the middle distance event, just about pipping one of her closest friends to first place. The comradeship and sporting behaviour was good to see as both girls immediately shook hands and congratulated each other on the close finish and I am so proud of them both. 

As for the weather, it was the same pretty much on both days - overcast but dry, with the showers holding off until the events had finished. And as for me and Tim, we would have not have had the last two days any different – in our eyes our children are both winners and we are proud of them.

The end of an Era

The start of this week brought Tim and I the sad news that someone who made a tremendous difference to our lives 25 years ago, when we first married, had passed away unexpectedly, leaving behind his wife, son and grandchildren. The person to whom I refer is Professor Tony.

So, where do I start? With this there is no start, just an ending, as I try to wind my memory back to those early days with Tim and try to recall when and where I first met Tony, or for that matter even became aware of him. The only thing I can say is that I was young, naïve, and very much in love with Tim. My life totally changed when Tim and I started dating, and the following years were a tremendous amount of fun, as our lives – both in and out of the work place – totally revolved around the microbial research establishment where Tim, and I (for a brief time) both worked. When I look back over those years, I have such happy memories, and given the opportunity to turn the clock back, it would be to that time. There is absolutely nothing that I would change, they were truly happy days.

Tim, and myself for only a year, both worked in the largest division, headed up by Tony. I had previously been working in a different department as a secretary, but on hearing that I was experiencing harrassment problems, Tony offered me an olive branch by way of a place as one of the two secretaries in his team primarily supporting his Deputy. He asked no questions - he didn't need to. I only stayed there a year. It wasn't that I was unhappy, I just needed to move on and Tony was understanding when I handed in my notice. It was blindingly obvious that my future was definitely not in micriobial research. Having struggled to pass O'level Human Biology at school, I was absolutely no scientist. Microbiology, to me, was a foreign language that I struggled to get to grips with and after a year of working in Tony's office, he didn't bat an eyelid when I resigned. To Tony, it was probably a tremendous relief as my shorthand was so atrocious that on the very few occasions I took dictation from him I would soon be knocking on his door asking him to translate the alien hierogliphics I had scribbled on my notepad.

Tony was dynamic, forthright, visionary and incredibly loyal to the team he built up over the years. They were exciting times – it was a time when a lot seemed to be happening in the field of research, and great progress was being made. Yes, Tony demanded a lot from his team, but he also gave back so much. We were all his extended family. If anyone had a problem, no matter how large or small, either personal or in the workplace, he would always be there, to offer support. To his team, Tony was The Don, The Godfather.

As Director of the largest division, Tony was incredibly adept at obtaining funding for research in to such diseases as Aids, Cancer, possibly even Parkinson's(?), and there were many fresh faced graduates who owe their careers to the opportunities that Tony offered. Without his help, there is no way Tim and I could have bought our first house together as he found funding, goodness knows where, so that Tim could continue to work in his team, and we could obtain a mortgage. It is from that time, those precious years, that we made lifelong friends and hold so many happy memories.

Over the years, the establishment evolved and as so often happens, many of us gradually drifted away. In time even Tony left and moved on to pastures new as he set up a company near to his home. But he and his wife always stayed in touch, even if was only by sending an annual Christmas card, as in our case.

So, it was with great sadness that we heard from a friend of ours yesterday that Tony had suddenly passed away. This evening has been spent on the phone talking to old friends, finding out what happened, and reminiscing. In a weird kind of way, I have found it comforting looking back over those years, when we were young and invincible, where the weekend started at noon on Friday at the pub, and Sunday nights would be the only night of the week when we didn't go out. Tim and I will be going to the funeral, and in a perverse kind of way, we're looking forward to it, as Tony's team gather together from far and wide for the final time, to remember the old days, to pay homage to a truly great man and to mark the end of an era.

Rest in peace Tony, rest in peace.

Deal? Or No Deal?

"Deal? Or No Deal?" I love watching that programme! It's just about the only programme on the telly at present that I like to watch and most days I can be found in my kitchen after picking up the girls from school, preparing supper whilst avidly watching the twists and turns of fate which leads the contestant of the day to second-guess which box contains the life changing sum, whilst they try to out-smart The Banker. It is interesting to watch the reactions of the contestants as the dreams on which their future stands or falls are either fulfilled or disappear in to thin air. It is a game of pure chance where the cash prizes range from winning a cool quarter million to becoming the latest member of the 1p club, with the reactions of all either witnessing or taking part reflecting the mood of the contestant. Each contestant gets just one crack at the whip and in general most seem to be happy that they have won an amount of money which is life changing or goes some way towards fulfilling a dream or an ambition. But, to me, the most bizarre thing is the sheer satisfaction if they have "spanked the banker" (!), even if that amount is not significant. Just the experience, for me, would be enough.

In my life, even if I won that cool quarter of a million, it would not be enough to buy me a cure to Parkinson's, but it would certainly help take the edge off the bitter pill I had to swallow when diagnosed. And it would most certainly not go unnoticed if a sum like that were bequeathed to Parkinson's research.

When I first started watching Deal? Or No Deal? I was totally confused by the game, and the same goes for Parkinson's in the early days after diagnosis. I still have so much to find out about this unwelcome intruder in to my life even as I come up to my second anniversary when I was diagnosed. In the early days I rather arrogantly thought I knew it all - in that it was an illness which afflicted the older generation and comprised a tremor. But now I have gradually came to the realisation that this is an illness where you need to lay your cards publicly on the table and try to make the best out of what you have been dealt. Are you going to accept the unwelcome intruder in to your life? Or are you going to bury your head in the sand? By grudgingly rolling out the welcome mat, you are taking a big step towards accepting the cards that fate has dealt you, and certainly in the early days helps to retain control over your life. By burying your head in the sand gives Parkinson's the edge to take over your life which submerges you in a sand pit from which it is harder and harder to climb out.

As I said, I knew next to nothing when I was diagnosed - but know so much more now. To help those who have little or no knowledge of Parkinson's, I have written a short quiz to test you, which instead of being called "Deal? Or No Deal?" is titled "Fact? Or Fiction?". I wonder how many Noel Edmonds would be able to answer and the answers given are as variable as the chances dealt in Deal? Or No Deal?

Here are my questions:

1. Parkinson’s does not discriminate against nationality, race, creed, colour of skin, age, or sex. Fact? Or Fiction?
   
   
2. The more obvious motor symptoms of Parkinson’s are preceded by a myriad of non-motor symptoms, which can pre-exist for a number of years. Fact? Or Fiction?
   
   
3. Parkinson’s can sometimes be misdiagnosed as something else. Fact? Or Fiction?
   
   
4. On diagnosis it is likely that 80% of the brain cells in the niagra region of your brain controlling the release of dopamine to your body will have already died off. Fact? Or Fiction?
   
   
5. Parkinson’s is often diagnosed by clinical observation. Fact? Or Fiction?
   
   
6. The drugs to control the symptoms are hideously expensive and a drain on NHS resources. Fact? Or Fiction?
   
   
7. There is no charge payable for prescriptions for a Person with Parkinson's in England. Fact? Or Fiction?
   
   
8. Parkinson’s is a degenerative illness. Fact? Or Fiction?
   
   
9. Parkinson’s is a contagious illness from which you will die. Fact? Or Fiction?
   
   
10. Parkinson’s is currently incurable. Fact? Or Fiction?

How did you do?

Taking each question in turn, here’s my response. If your viewpoint is different to mine, that is fine. You are entitled to your opinions, I am entitled to mine - I won't take it personally. If it engenders a healthy debate, that would be fantastic!

1. Parkinson’s does not discriminate against nationality, race, creed, colour of skin, age, or sex. Fact – it is totally non-discriminatory, just as the boxes are which the contestants pick at random before Deal gets underway. Before I was diagnosed I had always thought Parkinson’s afflicted the older generation, and favoured men over women - little did I know and I apologise to those those of the opposite sex who are more senior to me in years.
   
   
2. The more obvious motor symptoms of Parkinson’s are preceded by a myriad of non-motor symptoms, which can pre-exist for a number of years. Fact – non-motor symptoms can be things like a chronic sleep disorder, a gradual loss of sense of smell and taste, difficulty swallowing, dribbling, anxiety, depression, lack of facial expression, monotone voice…. etc. (And I do so hate it when I dribble..... eugghhh.) On diagnosis a Parkie-person will often realise they may have been suffering from this for quite some time. Further information about motor and non-motor symptoms can be found on www.epda.eu.com, www.parkinsons.org.uk, and www.nhs.uk
   
   
3. Parkinson’s can sometimes be misdiagnosed as something else. Fact – it can be misdiagnosed as stress, depression, frozen shoulder, even essential tremor
   
   
4. On diagnosis 80% of the brain cells in the niagra region of your brain controlling the release of dopamine to your body will have already died off. Fact!
   
   
5. Parkinson’s is often diagnosed by clinical observation. Fact – if there is any doubt, this can be confirmed by a DAT scan
   
   
6. The drugs to control the symptoms are hideously expensive and a drain on NHS resources. Fact!
   
   
7. There is no charge payable for prescriptions for a Person with Parkinson's in England. I would love to say this is Fact, but it isn't, it's Fiction – the current list defining which illnesses/diseases are eligible for free prescriptions on the NHS is out of date and long over-due a review. I understand this had been on the agenda under the last Government, but is now shelved for the foreseeable future. I could launch off on a political tirade at this point, but I'm not one to take sides, and it would not hold any value
   
   
8. Parkinson’s is a degenerative illness which first affects one half of the body before taking over the other half. Fact – a Parkie-person will eventually require help with the most simplest of tasks like getting out of bed, getting dressed, eating food, going to the bathroom. But it doesn't only attack a PwP physically, it can also affect mental health, self-confidence, self-esteem, and even family relationships
   
   
9. Parkinson’s is a contagious illness from which you will die. Fiction – what it does do though is increase the risk of complications arising from other illnesses, and in a minority of cases can be genetic handed down the generations. With regard to complications – I have been there, I have that t-shirt. 10 months ago I was haemorraghing so badly following a major op that I thought I was on my way to meet my maker. I will be eternally grateful to the doctors and nurses at Dorchester hospital who were able to stop the bleeding and piece me back together again
   
   
10. Parkinson’s is currently incurable. Fact – but a great deal of research is going on out there, and I am positive that one day, some day, a cure will be found to not only halt the disease in its tracks, but also to also reverse the effects by renewal of those much needed brain cells. It may not be there in my lifetime, or yours, but I hope and pray it will be there for the next generation who have yet to be diagnosed.

As for me, I have Parkinson’s, I am in my 40’s, pre-retirement age and female - so bang goes my theory that this is an illness only afflicting older men. Looking back over the years, I can identify the times when non-motor and motor symptoms crept in to my life. My consultant thinks I have had Parkinson's for about 5 years now, but I beg to differ, especially with regard to the non-motor symptoms.

Do I want a cure? Oh yes please. At present I can do so much more than I could 2 years ago – I can walk, I can talk, I can express my emotions, I don't fall over or sound drunk even when stone cold sober, and I can even type – all thanks to a hideous cocktail of drugs, which come rolled up with their own suite of side-effects just to complicate matters. But these do not furnish me with a cure – all it buys me is an indeterminate period of time – time to spend with my husband and children, time to raise awareness, time to raise money for vital research. I have been lucky enough to take early retirement from my job so that I can do these things before Parkinson’s overtakes the effectiveness of the cocktail of drugs I currently take.

And as to the future – I think it futile to try to predict what I will be like in 10 years time – I just won't go there, it’s too depressing.

Instead I prefer to live my life one day at a time. I have chosen to be positive, and exercising my right as a woman to contradict myself, I very much believe that one day, some day, either in the immediate or not-so-immediate future I may be cured and will no longer have to rely on drugs to get me through the days and interminable nights.

So, here’s the Deal – just as the Banker in Deal occasionally offers the contestant the opportunity to swop their box, I am willing to swop, just for one day, my Parkinson’s without the drugs with the well-being of an MP or MEP, so that that individual can understand what life is like for me as a Person with Parkinson’s, and I can take a much needed holiday from what this disease is doing to my body. Then maybe, just maybe, that understanding will raise the profile of Parkinson's resulting in a move up the political agenda, both within the UK and the EU. If this was a work of Fiction that swop could be arranged. But sadly this isn’t a work of Fiction – this is the real world, this is a Fact. In fact, this is my life I'm talking about, and the lives of the hundreds and thousands of People with Parkinson's out there. For me and all those out there who have Parkinson's, it is time to get a move on and find a cure. Find a cure to an illness which holds the generic label of "Parkinson's", but is definitely not generic in the random way it affects us all.

If I spot David Cameron on the beach, what do I do?

OK - so we're off tomorrow on our annual camping holiday in not so sunny Cornwall. It is going to be a welcome break for the Collinge's at the close of an eventful week  - some of which we could have really done without, but I won't go there. This year we've decided to try May instead of the last week of August as usual with the vain hope that the weather will be kind to us, and the rain will hold off. It's our seventh year running at the same destination with one of my dearest friends, Judith, and her husband and kiddies. Also we're without friends Jane and Chris - they're off to sunnier climes with other old friends of ours - hmmmm looking at the forecast I'm beginning to wonder if they're the sensible ones.

To say that our holidays in Polzeath are uneventful would be a blatant lie. Every year one of our party, normally from the Collinge family, end up in hospital somewhere along the way. The first year it was Caroline - with a serious break to her ankle. Caroline and Andy haven't been camping since, but at least they are still talking to us - just about!!! The second year it was Antonia, with a double fracture in her arm........ and so on....... If we don't end up in hospital, its because our tent has sunk in the quagmire instead and we have returned home with a good dose of trench foot, as happened in our third, or was it our fourth, year?

I missed out altogether on the annual pilgrimage to Polzeath last year and Tim gallantly braved the elements and looking after our troublesome two on his own. On their return home I was informed it had been a piece of cake - or so he would have me believe. I had reluctantly elected to stay at home as I was recovering from one major operation, closely followed by another major emergency operation plus numerous pints of blood back in. To say that the second op was a tad too close to coming to terms with the fact that I am not immortal is an understatement and I had actually resigned myself to meeting my maker somewhat sooner than planned. I was so low before the second op as I was haemorrhaging like fury, I even rang Judith to say good-bye and ask that she keep a close eye on Tim and be there for our girls at a time when teenage girls really need their Mum around. She is the one person in my life whom I trust implicitly - besides my husband of course! Caroline (of the broken ankle) and Andy, bless them, paid me a visit a day later. I still have the puzzle book they bought - not quite finished!

So, what is it about Polzeath that makes us trek back there every year, in spite of what the Gods throw at us? I really don't know, except that this holiday is a special time when our girls get to spend a week with their god-mother in a part of the UK that we all absolutely love. In spite of what the elements throw at us, we come home revived, refreshed and spiritually cleansed by the sea air. And on top of that, Polzeath is a really funky place with a magic of its own.

But that said, I did have a fabulous time at home totally alone last year, in spite of being somewhat miffed that I couldn't go to Polzeath. I had received several offers for company and turned them all down. Yes, its true that I missed Tim and our girls very much, but I also relished the peace and quiet. I totally disregarded the clock and went to bed when I wanted and ate what I liked when I liked - fabulous! That was, until Elise informed me on one of her evening phone calls home that she had been surfing next to David Cameron! Flippin' heck - that was it - I nearly packed my bag ready to catch the next train to Cornwall. But I didn't. Even politicians, including the Prime Minister, need their privacy and time out to relax and enjoy family life, new born babes notwithstanding. I did try to persuade one of our party to speak to Mr. Cameron or rather one of his party and politely request a meeting when life was back to business as usual, so that I could raise concerns I have regarding the long term care of PwP's (People with Parkinson's) in the UK. Needless to say, my family and friends, without exception, refused. Can't say I blame them really - my concerns are mine, not theirs.

So, we're off tomorrow at the not quite so crack of dawn, this time only for 5 days, which we may prolong if the weather is kind to us. I hate to say it, I'm not holding my breath! Summer was during the Easter break which I spent trekking from one end of the Kennet and Avon canal to the other. I have so little faith this year I've even packed our thermals that we bought for our Sweden adventure back in February. Also, every year we plan to get up at the crack of dawn to get to Polzeath early, but knowing my tribe, there'll be delays after delays. My prediction is that whilst we plan to leave at 7:00 am, we eventually get going about 9:30.... Judith and her crew, meanwhile, will be on the beach about the time we're just waking up....

But the big question is, if I spot David Cameron on Polzeath beach this year, what do I do? Answers on a postcard please!

Addendum - I'm now beginning to blame our misfortunes when it comes to Polzeath on my Oirish Grandmother..... the luck of that is. It's now 11:00 am and we're still at home as the car has broken down, dead, just won't go. I've tried to contact our friends who have texted to say they are on the beach and where are we, but as usual the signal in Polzeath is non-existent and I can't get hold of them.

What next!!!

Three on the Tow Path

Over the past few weeks I have reflected on 5 days which were, for me, totally out of the ordinary, once I had got over the eurphoria of finishing what was to become a very personal challenge, not only for myself but also for one of my book club buddies, Wendy and her 15 year old son Spencer. During these 5 days I stepped away from the routine of wake up, take meds, get up, get dressed, get breakfast, get kiddies to school, wash up, tidy up, take meds, get kiddies from school, take kiddies to after-school activity (swimming/gymnastics/brownies etc), get home, take meds, feed, water, wash up (again), tidy up (again), bathe, take meds and sleep – day in, day out.

We, as in Wendy, Spencer and myself, were to walk all 86 miles (or thereabouts) of the Kennet and Avon canal over 5 days, finishing on Easter Day. It would be an easy route to follow, being pretty much on level ground without the risk of getting lost (or so we thought) as we follow the canal as it wends its way from Bristol Temple Meads where it parts company with the River Avon, to Reading where it merges with the River Thames. Keeping it company along the way is the railway line which was responsible for the decline of the canal network, until they were reinvented and rejuvinated to become not only a place of recreation, but also a place to live and work for a great many people. I had spent many happy hours wandering up and down the stretch of the K and A between Wilcot and Burbage in my teens, but did not appreciate just how much in decline the K and A was at the time. But I'm glad to say that this is not the case any more, and I was astonished to find the K and A a thriving bustling hub of activity, especially at Bath, Bradford on Avon and Reading. The K and A, as well as many canals in the UK, is definitely not a place where life can be hurried. That said, the exception to this were the cyclists in Bath who whizzed along at breakneck speed threatening to scatter any poor smuck who got in their way. I found it difficult at times to hear them coming – as a typical human I don't possess eyes in the back of my head, and that whilst I love Bath, I was pleased to leave the cyclists to it.

When my father was alive, he often used to say “When I'm Prime Minister, I'm going to pass a law where........” and then he would trot out his plans for a better world. One of his favourite subject areas was smoking – he had a plan to ban it. Having been a chain smoker, he successfully managed to give up either before I was born, or very soon after and was the typical ex-smoker who frowned upon others addiction to the cancer sticks. So, picking up on this, I have decided that when I'm Prime Minister I'm going to make it mandatory for every man, woman and child to spend at least one week a year living on the canal and enjoying a much more relaxed and stress-free way of life. Certainly those 5 days did me the world of good and I returned home feeling much more relaxed.

So, why did Wendy, Spencer and I decide to take on such a challenge to walk 86 miles? We each had our own very good reason for doing this walk, of which mine was to raise as much money as I could for The Cure Parkinson's Trust, as well as raising awareness of Young Onset Parkinson's. Wendy's and Spencer's were to do likewise for Diabetes UK, as Husband/Dad (Paul) and younger son/sibling (Ryan) are both insulin dependent. The awareness raising was very much given a boost when Wendy, who hails from Reading, gave two radio interviews on Day 2 for local Reading stations. I got my chance on day 3, when I spoke to BBC Radio Wiltshire.

I had never ever in my life undertaken such a challenge before, and it was something that I very much wanted to do whilst my cocktail of anti-Parkinson drugs are still working in my favour. I am all too well aware that had I undertaken such an expedition 2 years ago I would not have made it out of Bristol. I am also well aware that time is not on my side, and at an indeterminate point in the future, I may not have the mobility I am enjoying now, thanks to my mate Parkie. This was an adventure I not only wanted to tell my kids about, but grandkids as well – assuming my two gorgeous monsters decide to have kiddies of their own once they have grown up and fled the nest to build nests of their own.

The trouble is, often finding words so often easy when I sit and write these blogs, for some bizarre reason when I think back to those 5 days, the whole thing seems to have passed by in a bit of a blur. Short bursts of those 5 days come to the forefront of my mind, but its like watching random bits of an old worn out movie, pieced together from the cutting room floor. Nothing seems to hang together, try as I might to document it. In short – I have stumbled across Writers Block – of all things! Why now? This is my third draft! Aaagghhhhhhh!

How do I convey the excitement as I got up every morning, barely able to eat my breakfast as I was keen to get on the tow path, setting off with the knowledge that I would be punishing both my feet for committing no crime apart from being the ugliest pair of feet in the whole western hemisphere. We were to be walking for up to 5 hours at a stretch interspersed with brief rests in cool shade until we reached either our lunch destination, or our evening rendevouz. Having prayed for cool dry conditions, we ended up walking in what transpired to be blistering heat – unusual for this country at any time of the year. To keep our spirits up, we often laughed, seldom cried if ever, and even spent many hours in isolation from each other. Not that we weren't talking to each other – we were, but we also needed time alone just to ensure we achieved what we had set out to achieve. This was especially true of our final day. I was a woman on a mission, and even when faced with a gang of about 15 adolescents blocking our path as we neared Reading, I put my head down, increased my pace whilst ignoring the pain in my feet, and just kept going. I must admit at that point I was wishing that my Big Bro Ant (all 6'4” of him) had been with us as originally planned, rather than the day before. But hey – as I said, I was a woman on a mission and I was not going to let a gang of 15 adolescents slow my pace down – Parkinson's notwithstanding!

As I said we had many laughs along the way, very few wobbles and definitely no squabbles, even when we were at our lowest. I think the low point was actually on the first day, when our pace had slowed to a sedate 2 miles if that. We had actually managed to wander off course – I know I know, how can you get lost on a canal? Well, we managed it. I hold my hand up to share the majority of the blame, even though Wendy had ownership of the map on Day 1. We were nattering so much, or rather I was nattering so much, we hadn't noticed that the tow path had forked in the middle of some god-forsaken shadeless stretch. We were supposed to have taken the right hand fork to carry on following the canal, and instead turned left. We didn't realise our mistake until about 2 miles later when we reached a village and wondered where the canal had gone. Ho hum!!!

Rather than turn back, we took a detour on the advice of a local, and eventually made it back to the canal about half an hour later. That cost us dearly on the first day in terms of time as well as our mental state of mind. At one point Wendy started to go in to melt-down, and on Spencer's advice I kept on walking, whilst he got his Mum back on her feet and walking again! I don't know what he said or did, but she was soon back on track and about an hour or so later we reached our lunch destination where we sat in the shade and relaxed for an hour whilst our feet enjoyed the freedom and fresh air, before they were confined once again in walking boots. That, I can tell you, was a much needed break. Boy oh boy was it hot and I had downed every last drop of water I had set out from Bristol with. Replenished by a hearty lunch (or in my case an All Day Breakfast which I couldn't quite finish – eyes too big for my tummy!) and fresh water in our backpacks we set out again. It wasn't to be until 7:30 that evening that we finally reached Batheaston where we were to meet with Paul's uncle – 2 hours late!

The following morning Wendy informed me there had been a bloodless coup first thing, as 15 year old Spencer had siezed control of the map. He was to remain our team leader for the rest of the walk, and in the process made a huge impression on our various friends and relatives who joined us – specially Q from Cure Parkinson's and Ant.

There were many high points, but for me I think the funniest was my one and only encounter with a “She-Pee”, and no, I'm not talking about the 4-legged woolly variety who wander around our green and pleasant land oblivious to the fact that their off-spring are destined to be turned in to lamb chops. I'm talking about a late-on addition to my backpack which would enable me to “Do it like a man” instead of crouching in amongst the stinging nettles (an art I've never ever been able to master, even when in rural France or Oman where public facilities tend to be the lovely traps). About 3 weeks before our epic adventure we had a “dry run” where the three of us walked a 12 mile stretch of the K and A between Pewsey and Froxfield. About an hour after we had set out I got caught short, and having held it in for about the next hour, I blagged my way on to a chartered Narrowboat going through one of the many locks, to avail myself of their modern convenience – much to Wendy and Spencer's amusement. Lets just say that I wasn't just spending one penny, but about five – during which time the Narrowboat Captain had forgotten I was still on board and had set off in the direction from whence we had come! Needless to say I staggered back on deck whilst hastily pulling up my drawers, and managed to not quite so elegantly get back on dry land without landing up in the drink!

Obviously I couldn't rely on being able to do this during the 5 day hike. Having visited a major retail outdoor “supermarket” in Swindon the day before we were due to set out, I came across the “She-Pee” and decided that it was just the thing which would give me the closest experience possible to “doin' it like a man”. Trouble was, on getting home I tried it out only to find that my bladder well and truly refused to let go – nearly 50 years of sitting down was not to be so easily eradicated from my auto-reflexes, and my rather hilarious attempts were to no avail. My girls, on the other hand – had great fun and much better success! Enough said. On day 2, having received a text from Tim enquiring whether or not I had tried out my new acquisition in anger, I plucked up the courage and decided to give it a go, as I really did need to go! So, whilst Wendy and Spencer rested in some meagre shade, I “nimbly” nipped behind a hedge and after about 5 minutes of my brain sending messages to my bladder that it really was OK to “do it like a man” my bladder finally let go. Needless to say next thing I knew, whilst mid-stream, I glanced down to find my “She-Pee” being investigated by a not so helpful wasp! Being somewhat unwilling to risk wasp stings in a rather embarrassing place, operations were immediately suspended, and my “She-Pee” remained redundant at the bottom of my backpack for the remainder of the walk.

Being close to home, we only spent two nights away, and a special mention here needs to be made about the hospitality and welcome we were given by my ex-colleague, the wonderful Mina in Bristol and Paul's aunt and uncle, Angela and Mike, in Bath. We were all made to feel very welcome in both households, so much so that on being offered first use of the bathroom at Angela and Mike's, I relaxed so much in the bath that I could have stayed there for about 2 hours. But, being conscious that Angela was waiting to serve supper, I decided it would be a bit rude of me to hog the bathroom facilities and decided I really ought to get out, which was when I discovered a bit of a minor difficulty in getting moving. Trying not to panic, I had several attempts to get out of the bath, and thankfully eventually managed it without having to call for help.

When we stayed at Mina's in Bristol, having bought up two boys single handed, Mina immediately recognised that Spencer was suffering from “Hollow Legs Syndrome” and made it her goal to ensure he didn't go to bed hungry. Having known Mina for about 7 years, I knew that she would not give up until she was satisfied Spencer had had enough to eat! Naturally it was nice to return home as well, and for the duration of the walk I commandered possession of the bathroom, and soon fell in to the routine of taking a long soak in the tub on getting home, another one immediately after supper and one again about 5:00 in the morning before everyone woke up – a wonderful time of the day in which to soak and reflect on the day before, as well as prepare myself mentally for the day ahead!

I have so many people to thank for joining us on the walk, for their sponsorship, the well-wishers we encountered along the way including the Vicar of Hungerford who kindly let me use the church loo and the lady in Bath who emptied out the contents of her purse – all ten pence of it! For me, I couldn't thank Wendy's entire family enough for their kindness where I was readily made to feel welcome, and in particular Wendy's sister Sue and Dad Chris. Also a huge thank you to my husband and children for their encouragement and support, and my big brother Ant for carrying my backpack on the penultimate day. Of course, the 5 days would have been far more monotonous if we hadn't been joined at various points along the way by Q (aka Helen from Cure Parkinson's), Slice of Life (aka John Stamford) who drove all the way up from Kent to walk with us for a couple of hours, and Laura and Karen from our book club, plus their dogs, kiddies, husbands.......

And here's where I start my apologies - first and foremost to David and Chris Mullings - we had arranged to meet on the tow path at Bradford on Avon, and completely managed to miss each other.

I also feel I must apologise to those walking with me as well as innocent by-standers for inflicting my dreadful singing at the top of my voice. Having just finished Lee Silverman voice therapy the week before, it meant that my vocal chords were in fine fettle, and I would burst in to song without warning, normally towards the end of the day. My favourite was to sing the chorus from John Denver's classic “Country Roads” but unfortunately I never made it past the chorus, as I couldn't remember the rest of the song. Feeling in a bit of a mad mood towards the end of day 2, Wendy and I regaled a trio of somewhat bemused local fishermen with Christmas carols as we tackled the Caen Hill flight of locks! Needless to say, Spencer was also much amused by my LSVT vocal exercises, and I endured merciless teasing and comparisons with the Muslim calls to prayer!

But this blog would not be here if it weren't for two people, Wendy and Spencer. I couldn't and wouldn't have done this without them.