Life is Not a Dress Rehearsal

This blog is dedicated to the memory of my huband's nephew, Christopher, taken from this life at the age of only 32.

When I first met the late great Susie Sharman she was wearing a t-shirt which had emblazoned across it "Life is Not a Dress Rehearsal". How right she was - Susie had more than her fair share of trials and tribulations over the following 20 years of our friendship, but she always lived every day as if it were her last, until her last day came when she slipped peacefully away.

I'm certainly guilty myself of "getting it wrong" over the years - but its from our mistakes that we learn and hopefully move on......Its not doing anything about those mistakes where problems can manifest and at times fester. Tim, having "divorced" himself from his immediate family, had not seen or spoken to his sister, Tanya, or his niece or nephews for five years. At the time, I decided not to get involved but did say to my sister-in-law to keep in touch if she ever needed anything. Since then, we haven't spoken as such, but more texted each other every now and then, including when I was diagnosed with Parkinson's. Periodically I used to receive a text from Tanya asking if Tim would speak to her, to which the response from my somewhat stubborn husband would always be an emphatic No. Six months ago, I received such a text, and still in shock from nearly writing myself off in my car a few weeks previously, and Tim being unusually stressed with work, I left it for about a week, before I broached the subject. His response, as usual, was a flat No. Having gone back to my sister-in-law with the answer and an apology, I was met in reply by a volley of abusive texts to which I was somewhat taken aback. Having started to respond, I decided it wasn't worth it, gave up, and deleted the following ten or so texts without reading any of them as they landed in my in-box. I should have sensed that something was wrong and instead of ignoring the wrath of my more than usually irate sister-in-law, I should have picked up the phone and called her. But I didn't.

If I knew then what I know now would it have made things any easer for all of us? Tanya's younger son had been diagnosed terminally ill with gastric cancer with the life expectation of no more than six months if he was lucky. At the time he was only 31. Tanya was understandably angry and upset, and I had become the unwitting target. Had Tim known any earlier than ten days before Christopher slipped away from this life, would he have coped any better? Having known my husband for 30 years, I very much doubt it, and so does he. Tim cannot deal with any chronic illness, be it life threatening, as in Chris's case, or just a sheer bl**dy nuisance, as in mine.

When I first met Tim, Chris was a lovely toddler of 18 months, engaging, full of smiles, and definitely won me over in the first five minutes. I know Tim always had a soft spot in his heart for his younger nephew, and Chris's departure at the age of only 32 has taken its toll on my husband - it's not in the natural order of life. Sons are meant to bury their mothers, daughters their fathers - not the other way around. Having not seen Chris for five years, Tim was unsure whether he should go see his nephew who had made it his last wish to be reunited with his absent uncle. It took some doing, but I managed to deliver Tim to the door of the hospice and into the safe keeping of his niece's husband. Left to his own devices, Tim would have procrastinated until it was too late. Whilst it was a painful reunion for both nephew and uncle, I know that Tim has no regrets.

Chris passed away ten days later on his step-father's birthday, at home, surrounded by his immediate family. On his death, he left the cancer and pain behind for a better place than this world of ours. Tim wasn't there, but over those crucial ten days he had taken the opportunity to spend time with Chris, including texting each other whilst apart. Those ten days will always be special to Tim - no one can take that away from him. I for one am glad he didn't delay - he would never have had that second chance.

Letting the Grass Grow Under My Feet

I hate to admit it, it has been quite some time since I last blogged.... in fact I had originally started this blog two weeks ago, but after what has not been such a good day in the Collinge household I decided to sit down and make an effort to finish and publish before I go to bed.

I have been so busy I haven't had a moment to draw breath, let alone sit down at my pc and write anything – including sending an email to my oldest and dearest school friend to wish her a happy birthday a few weeks ago. Well – that is a lie about the blogs – I have sat down and started a few over the last month, but have never actually succeeded in finishing any.

This blog was originally started at the end of a very frustrating week for me – I had been experiencing weird things going on with my left foot, where it keeps rolling unnaturally on to its outer edge, with my toes going in to spasm and the pain of muscle cramp frankly worse than childbirth. It seems to happen just before my meds are due, especially if I am running late or particularly busy. I had had a particularly bad night the previous week, and ended up at three in the morning in the bathroom, having my third hot bath of the night to try to ease the pain, having already taken two paracetamol and the last sleeping tablet originally prescribed by my GP when I ran my car off the road last September. I was not in a good place, and eventually Elise, having heard me, woke up my husband to come help me out of the bath, as I was totally and utterly stuck. It was sheer exhaustion which resulted in my eventually falling asleep when I got back in to bed, a sleep which had to be cut short as I was due to go to London in the morning for a Policy Panel meeting at Parkinson's UK HQ in Vauxhall Bridge Road. Needless to say, Tim ran me to the station and I caught a later train which meant that I showed up half an hour late. I was so exhausted that I then fell asleep during the afternoon session – not good and I was extremely pleased to see my bed when I finally got home!

Whilst waiting for my train after the meeting I rang one of my favourite Parky People – Tom Isaacs of The Cure Parkinson's Trust. I needed to talk to someone about this foot business, and I knew from reading Shake Well Before Use that Tom has in the past and/or does experience similar things happening. On describing to him what had been happening, he immediately said that he thought it sounded like distonia, and asked me if I had been eating sweets, to which I answered with an absolutely whopping lie that I hadn't. I didn't like to admit to him that I had put in a very long day the day before at the farm, where I am currently working, and on my way home had done a detour to the local supermarket to buy some sweets. I needed a sugar fix, and I needed it fast. By the time I got home I had eaten almost a full packet of Liquorish All Sorts, closely followed by almost a complete packet of Jelly Babies. I reluctantly shared a few with Tim, Elise and Antonia, but it was very grudging. Since then I have felt so bad about lying to Tom, that I emailed him a few days later and came clean. His response, typically, was that he thought that I sounded guilty just by the way that I said No. He then admitted that he had a bag of Jelly Babies the day before and hadn't shared them with anyone – way to go Tom!

As I mentioned earlier, I have been working for the last six weeks or so at a farm. It has been a long held “dream” of mine to grow vegetables just like we did when I was a child, not just a few in the back yard, but enough to maybe see us Collinges through the summer, and enough to lay away in the freezer for at least the start of the winter months. The only problem is that the soil in our garden, as well as the layout (ie north facing, heavy clay soil imported when the house was built, etc. etc) is not conducive to growing vegetables successfully, and our village has absolutely no allotments to speak of. Having met one of the local farmers recently, who goes by the name of “Mutley”, we came to the agreement that I maintain his family vegetable patch, in exchange for my share of the spoils, free eggs, and hopefully the occasional joint of meat.

So, here I am, six weeks in, working for nothing, for Mutley and his wife Caroline, trying to maintain a vegetable plot that is more like an acre, the weeds are growing like fury rather than the veggies, the place is one massive mud slide as it keep raining but I am having the time of my life. The weather has been absolutely diabolical since the children went back to school after the Easter holidays, and not one single day has passed without a full on rain storm, normally complete with hail, thunder and lightning. On top of all that the wildlife have helped themselves to the seeds carefully sown in various pots and trays in the greenhouse. And the Met Office are insisting this part of England is still officially in dought. Drought my foot – pull the other one – it has bells on t!

OK – so I'm literally back to square one with the vegetable acre. I have resorted to bringing home all the pots and trays and seeds and starting again. My kitchen table has been turned over to a small nursery of various seedlings being coaxed in to some form of life so that I can go and plant them out at the vegetable acre – if it ever stops raining long enough that is. Mutley, meanwhile, has rotivated the beds by driving his tracter on to the site and making short work of it within about an hour. Well, why use a nut cracker to crack a nut when a sledge hammer will do? In addition to that, he has managed to sow most of the potatoes, whilst I seem to prat around sowing seeds in pots for the wildlife to eat and fussing over the edges of the paths.

Caroline, meanwhile, is busy with her project of rearing lambs – presumably for the farm freezer. I believe it is her first year of doing this, and so far so good. Two of the ewes had twins, and the third had a singleton – all boys. Unfortunately one of the twins was weak when born, and having been rejected by his Mum, he has adopted Caroline, primarily as she is a dab hand with the bottle and he is a typical boy. He is fast becoming a bit of a family pet, has been christened “Kevin” and is now destined to become the “stud” ram at the farm (with the exception of his birth mother of course). I think Kevin has realised that he is in a very privileged position to be keeping his “crown jewels” whilst his brothers are loosing theirs, and looks very pleased with himself when trotting along at Caroline's heel, looking very smart in his yellow flourescent collar against his black woolly coat.

Having started Tae Kwon Do with Antonia a few months ago, I have got totally and utterly hooked and have been getting to grips really well with the set moves, with my sights firmly set on my first grading coming up in June. Until a couple of weeks ago that is, when during the warm up I managed to bang my right knee whilst doing some enthusiastic press ups, which then came up in a huge lump. It wasn't painful in any way, just unsightly and I was advised by the Sports Centre first aider to go home, raise my leg up and apply an ice pack, with the advice not to drive for a few hours and if it got painful to see a doctor. So, no pain since then at all, but on the swelling going down, I have been left with an extremely nasty bruise in its place. So, having not done any Tae Kwon Do for a while, we managed to get there on time for a change last Friday, for me to then realise that I hadn't taken my drugs..... So, back home, take drugs, go back and try to join in after the warm up with my left foot starting to misbehave – again – and just not being able to get to grips with any of the set moves. Talk about one step forward and several shuffles back.....

Today, more than ever, Tim and I were sadly reminded of the fragility of life and just how important it is to live each and every day to the full rather than letting the grass grow under our feet. We had received news that Tim's nephew, Christopher, is terminally ill with gastric cancer and not expected to last more than a few days at best. Tim and Chris had gone their seperate ways about 5 years ago, and Chris had made it very clear to his family that he wanted to see his Uncle before he died. This wasn't an easy call for Tim to answer as he hasn't been in contact with any of his relatives in those intervening years. Add to that the problem that Tim just “doesn't do” critical illness/dying/death in any way, shape or form. However, having discussed it, we went to the hospice together, and I left Tim at the door so that he could go in alone, and spend time with his nephew to whom he was once so very close. A decision I believe he will never regret and I am so relieved he didn't let the grass grow under his feet today.

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?

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.

Terra firma vs Terror firma

Since I completed the Bristol to Reading walk with Wendy and Spencer just before Easter, I have kept on with going to the gym, although that said I left it for about 8 weeks as my knees were suffering a bit from post-walk traumatic stress syndrome! The work that I had done in the gym leading up to the walk served me well, there is no way I would have achieved what I did without that preparation beforehand. Not forgetting the support I had from Wendy, Spencer, Uncle Tom and all...... I decided that my knees, along with my feet (which still haven't got over the shock) deserved a bit of a holiday - an eight week holiday to be precise!

That said - I've now climbed back into the saddle - the saddle, that is, of the stationary kind that you pedal on but doesn't take you anywhere! I have a bit of a propensity to fall off the non-stationary, two-wheeled variety, and its probably about 30 years since I sat on a horse. I have a tremendous respect for horses and their hooves and I prefer to admire them from afar. My children, on the other hand, have different views. Elise would love to learn to ride, but we are still a bit hesitant about it as she used to be very allergic to horses. That said, we think she may have grown out of it. Antonia is fascinated by them, and on being given the opportunity recently to give some snacks to two lovely horses who live in our village she literally jumped at the chance. Tim and I are not mentioning such things as "riding lessons" as we are all too well aware that these things do not come cheap, even at the promise of slave labour in exchange. This, I believe, is the preserve of those who are considerably more wealthy than us.

But, I digress. Having managed to miss my usual session on Friday evening owing to other commitments, I paid the gym a visit today. I've been getting on really well recently and I'm at the stage where I'm starting to push at the boundaries of my abilities with the intention of improving my not quite so muscular physique. I always follow, pretty much, the same routine which takes me about 90 minutes. First I warm up with some cv work on the upright bike followed by a session on the cross-trainer. I used to spend about 20 minutes on the rower, but for some strange reason since doing the walk I've found that within two to three minutes I'm experiencing pain in my right leg and I have to stop. Once warmed up I then spend about 50-60 minutes on various bits of apparatus focussing particularly on my back and shoulders. I really don't want to go back to the pain I was in two years ago from frozen shoulder. (Correction - I think pain is an inadequate description for frozen shoulder - it is absolute agony.)

Having been doing really well and enjoying the post-gym endorphin rush, today was a complete and utter unmitigated disaster. I felt as though I was wading in treacle (which, by the way, I adore on pancakes, especially when they are made by Elise). Five minutes on the bike and I was ready to lie down in a dark corner and die. And as for the cross-trainer - well I won't go there. I've been experiencing problems with resting tremor in my right arm over the past week or two, and my sleep pattern is completely up the spout with the result that I'm often in my kitchen at 3:00 in the morning emptying the dishwasher and doing that day's ironing. And if things are really bad I go in to anal mode and lay the table for breakfast, followed up by mopping the floor. Until about a month ago, I had been finding myself on some occasions, and in particular when in the local supermarket, doing a walk that would have been worthy of Monty Python. And then there's the freaky toe-curling that starts up without warning.....

I'm hoping that this is all just a bit of a blip - I have absolutely no intention of going to see my consultant until next July (no offence meant, its not personal). I'm not quite at full strength on one of my drugs yet - and I'm trying to put off upping that dose until I really need to. I know I'm only on 10 pills a day from a concoction of meds, and that this is nothing to the more seasoned Parkie-expert, but I feel that I'm rattling enough already.

There is, perhaps a more logical reason to all this is that I took my girls to the fair yesterday evening before the crowds started. Early evening is a much the better time to go to these things - you don't get quite so ripped off by the hike in prices as the evening wears on and you tend to get slightly longer than the obligatory 30 seconds. Bargain! I fear that I'm now suffering from the stress of a particularly harrowing ride that I hadn't seen in action that Antonia wanted to go on but wasn't allowed to unless accompanied by a responsible adult. Tim, being a bit of a humbug, had elected to stay at home, so that particular treat fell to me. Elise was also on the ride, but not in our lovely seat made for three, as she was with a friend, whilst said friend's Dad stayed well and truly on terra-firma. Within 10 seconds of the ride starting, we were not only pitched high up in the air, we were then tossed around like a piece of flotsam and jetsam in a mid-Atlantic storm. The experience was truly terrifying and being desperate to hide my total fear from Antonia I managed to keep a fixed smile on my face throughout whilst muttering through clenched teeth "sh*t, sh*t, sh*t" over and over - interspersed with the odd prayer to my maker that we survive the ordeal! Antonia, on the other hand, absolutely loved it and spent the entire ride screaming with laughter, whilst I choked back my vomit, terror and screams of fear. As you can imagine, I was delighted when we finally slowed down - at last I was going to be set free - not! Having ground to a halt, I was at the point of undoing our seatbelts when the bl**dy thing started up again - this time backwards - much to Antonia's delight! By the time I staggered off some minutes later, not only did I look as though I had been dragged through a hedge backwards, I was a total and utter quivering wreck. What few dopamine producing cells I had left in my brain had shut down in a state of panic! Can't say I blame them really - never ever again!

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!)

New Beginnings

Here I am, awake at my usual 4:30 in the morning, with a blog running through my head. I need to get up, go sit at the pc and write. My night has been disturbed twice already, with hunger pangs resulting in two early morning raids of my fridge. These moonlight forays will have to stop - I'm putting on weight, which I admit I needed to do, but as I'm now the heaviest I've ever been (pregnancies excepting) I'm getting to the point where I'm going to need a whole new wardrobe. Hmmmm the prospect is tempting, but having been off the dopamine agonists for about 6 months now, my spending habits have taken a surprising turn - I hate spending money. In short, I have become exceedingly thrifty! So, note to self - ask my PD support chap next time I speak to him about these annoying middle of the night hunger pangs - I eat plenty during the day, so why do I feel I need to graze all night as well?

Its the last week of the summer holidays, we're on the big countdown to the start of the new school term, and I must admit I'm feeling absolutely cream crackered. I don't want the summer holidays to end,especially as apart from anything else I absolutely loath the Autumn and Winter. But I have been seriously burning the candle at both ends this week and really do need some R and R as soon as possible, much as I love my two beautiful children. Elise starts at her new school, and she currently swings between excitement and fear. She and her friends will be going from being the big fish in a small pond, to little fish in an extremely large ocean.

The start of this week was marked by going to a 25th wedding anniversary. L and J are the parents of one of Elise's class mates. L has a successful event management company, so we knew the evening was going to be a good one. Having borrowed their neighours field, shelter from the elements, if so required, was provided in the form of a double tentipi, which not only housed the bar, but also an extremely good band. Antonia though, on it getting dark, soon found us, and finding it too dark and cold for her liking outside, also suffered in the tent. Like Tim, she was struggling to cope with the loudness of the band, and before too long I took them both home, whilst also grabbing the opportunity to bung on a few more layers. There weren't a great deal of people we knew at the party, but I was more than happy to wait until Elise was ready to go home. I eventually tracked her down at 1:00 in the morning and managed to persuade her that it really was time to go as I had left my drugs at home, I was late for my bed time dose, and really did not want to face the prospect of freezing - literally. Much to my surprise Elise was more than happy and admitted to me later that she was glad of the excuse as she was both cold and tired, even though she and her friends had been hatching plans to stay up and see the sun rise. Had I been younger and fitter I would have been happy to stay up with them, but these days I find I really do need my beauty sleep.

Also at the party were friends P and G plus their brood. They had just returned from an extended summer trip to Uppsala in Sweden, having put in train their plans to move there as soon as possible. I had given them Sara (Riggare's) contact details, but being short on time they never had the opportunity to make contact, but plan to do so when they return. Even though we've known the family since our respective eldest started school 7 years ago, P and I have only been firm friends for the last two. Having been a PD support nurse in her native Holland before she moved to England, P had long suspected that I had Parkinson's and had slowly been chipping away at the shell I had isolated myself in, eventually challenging me to consider, just before my first meeting with Dr T, that I had Parkinson's. Whilst other friends had suspected as much, she was the only one who actually mentioned the dreaded word, she said what needed to be said, and for that I am so grateful. P, bless her, had laid the foundation stones of the diagnosis, Dr T then built on that and here I am today, two years on, a fully fledged Parkie chick, making the best of my life that I can.

Its fair to say that I really don't want P and G to go..... I dread the day and know that there will be many tears - of joy as well as sadness. But I know that they have had itchy feet for a long time now. I'm not alone in dreading the day..... they have an extensive network of friends and will be sorely missed.

A week next Sunday marks a very personal anniversary for our family, as my father, Bill, would have been celebrating his 80th birthday had he still been with us. The date is also significant for a great many people across the world as it also marks the 10th anniversary of the 9/11 bombings in the States. On that day in 2001, my father, like so many others, took the news extremely badly. He had not long retired from living and working in the Middle East for the previous 20 years. On that day, when he finally answered his phone, the one sentence he said which I have never forgotten was "I'm glad my life is behind me". He had planned to spend his 70th birthday celebrating with friends, but cancelled it as a mark of respect to the thousands who had died that day. He said it wasn't right that he should celebrate his life when so many had lost theirs. But to me, it also marked the day that he lost the will to live and 6 months later he suffered a massive heart attack which felled him in an instant.

When I think of my father now, I wonder what he would have made of my being diagnosed with Parkinson's. I know he would have been upset, but I also like to think that he would have been proud of me. Proud of the fact that I'm still standing, proud that I'm determined not to let this beat me. He, like the rest of my family, would have been amazed at the way my life has been transformed as a result of this, with opportunities coming my way which I would never have even dreamt of. So, bring it on, I may have Parkinson's, but Parkinson's will not get me, not without one heck of a fight!

This blog is dedicated to the many who lost their lives on 11th September 2001, either at the World Trade Centre, at the Pentagon, or on United Airlines Flight 03, for they are the true heroes whilst the names of those who carried such atrocities against the human race will be long forgotten in the mists of time. 

The Third Cottage

On finding herself divorced and once again living alone, a friend of mine declared she wanted to “start over” and move out of the now defunct marital home she had helped her husband build a few years previously, as it held too many memories for her. She had seen an advertisement in a local paper that three cottages which belonged to The Crown were coming on to the property market. They were set in an idyllic location, about 5 miles from where I live, in a small village nestling in the heart of an ancient forest. The agent who had been instructed to sell the properties was holding an Open Day a couple of weeks later for the general public to view at will and we decided it would be worth going, as the guide prices were very favourable.

Finally, the day dawned – it promised to be a scorcher. Having had lunch at my house, my friend and I set off, with the agents selling particulars firmly in our grasp. We were on a mission, we had an objective in mind. The objective was to purchase a house which would give my friend, who had suffered more than her fair share of tragedy over the years, a fresh start. We had high expectations and were determined not to fail.

On arriving at our destination, we parked up and immediately headed for cottages One and Two which were advertised as having the potential to be knocked in to one big family house. In our excitement we hadn’t noticed at the time was that there were very few members of the public there. Either the opportunity to grab a bargain did not appeal, or there were other attractions going on which kept the public away. It was, after all, village fete season. Factor in the hot weather and the British love of the seaside on days such as this meant that it looked highly likely we were prospecting pretty much on our own. We couldn’t even find any agents – the place almost seemed almost deserted except for a few local residents and the occasional dog or cat.

Talking nineteen to the dozen and making a beeline for Cottages One and Two, we were joined by a young man at the front door. He seemed to materialise out of nowhere. To say that he was devastatingly handsome is an understatement. He had golden hair that seemed to glow even though the occasional dark cloud in the sky obscured the sun. He had a physique that only came with putting some serious time in a gymnasium. My friend let out a long sigh punctuated with “Oh My God”. She said later that she had gone weak at the knees and that her heart had thudded in her chest. To help my friend out I casually dropped in to the conversation as we inspected the pair of cottages that I was married, happily married, and that my husband and I were very much hoping to have a baby soon, so paving the way for my friend. To say that she went in to outright flirt mode is an understatement. By the time we had viewed both cottages, they were talking, and play-arguing, as if they had known each other years, not just a few minutes. The talk turned from “If I had this house I would knock down this wall.........” to “If we buy these together we could do...........” It was, or it certainly seemed to be, love and lust at first sight. During the hour that we had spent in viewing Cottages One and Two, we had discussed the finances of buying the two together, the feasibility of ripping out bathrooms and kitchens, and the merits of DIY vs paying through the nose for qualified trades. We had mentally knocked down walls, discussed colour schemes and which bits of their furniture would look good and which wouldn't. As we stepped back out in to the brilliant sunshine and the scorching heat, we discovered that our companion was the owner of a mint condition vintage Austin Healy – colour Red. Our jaws dropped for the second time that day – this was turning out to be too good to be true. My friend and I simultaneously had the same vision – of my friend being driven off in to the setting sun with this devastatingly gorgeous young man by her side in his gleaming car. She wore a beautiful white wedding dress of ivory silk. He wore an immaculate morning suit of the gentlest grey. The car had been festooned with pink heart shaped helium-filled balloons tied to the door handles. It was towing a couple of tin cans whilst sporting a “Newly Married” sticker on its gleaming bumper.

Having told our handsome companion that we were going to view the Third Cottage which was but a short walk to the other side of the village, he replied saying he would take his leave, and bidding us farewell, got in to his car and drove off. Still reeling from our experience, we somehow made our way to the Third Cottage which was set a little apart from the village as if trying to disassociate itself, detached and standing in a reasonable sized plot. Just as we were about to walk in, we were met at the door, he of the golden hair and immaculate body. He said he had decided to change his mind and that he would look at the Third Cottage with us after all. He said he wanted to keep us company. As before, he seemed to materialise out of thin air.

On entering the house, I started to feel uneasy, and detected a distinct chill in the air, but didn’t think anything of it. I told myself it was, after all, a thatched cottage, unlike the other two which had slate roofs. Having grown up in a thatch, I knew they were built to be cool in the summer and warm and cozy in the winter, so momentarily shrugged off my unease. Having looked around the ground floor, we ascended up the stairs to the first floor to view the two bedrooms and bathroom, and that was when I noticed a strong smell of horses. I mentioned this to my friend and our companion, but they didn’t think anything was out of the ordinary. They laughed and told me I was cracking up. They said I had imagined it. I had no choice but to agree. But in my private thoughts I knew that there was something missing. I knew that things were not as they were meant to be. I was becoming increasingly ill at ease and desperate to go back outside to the warm sunshine. We left quickly, having decided there was nothing else to see and that we should explore the garden instead.

On walking around the perimeter of the cottage, we found a door which we hadn't noticed before. Being curious I opened it and went in. The sudden drop in temperature was dramatic. I found myself in a part of the cottage which hadn't been mentioned in the sales particulars. I was in what seemed to be a windowless room which was only accessible from the door through which I had entered. I knew I was on the other side of the living room wall and chimney stack. The room was small in terms of square feet, and it had no ceiling. On looking up I could see the underside of the thatched roof, the floor was earth and well tamped down. As I looked around I felt completely and utterly overwhelmed. I felt as if I had been hit with a sledge hammer. The smell of horses was overpowering. I was filled with sadness. I was filled with fear. I started to hyperventilate. In a blind panic, I pushed past my friend and our companion who had stopped at the doorway, obscuring the brilliant sun-drenched garden outside. I had to get out. I had to escape the confines. I needed to get back to the warmth of the sun. I wanted to sit down. I felt giddy. I thought I was going to throw up. In spite of the heat, I was shaking from head to foot. I had come out in a cold sweat.

My friend asked me what the matter was. She said in spite of my tan gained whilst on holiday abroad recently that all the colour had drained from my face. She thought I looked as if I had seen a ghost. I could tell she was worried about me.

All I could say in response was “Don’t buy this house. Something terrible has happened here. A child died here a long time ago. She was only 5 years old. She died in this room. She was murdered. Her soul is lost. She isn't at rest. She should be, its not right.” I was adamant I hadn’t seen her ghost, but I had certainly felt it. I had felt it the moment I had set foot in the Third Cottage, but at first I couldn’t diagnose what was bugging me. It was something I had never ever experienced, and hope I never do ever again. I wanted to go home. I wanted to leave this place and never ever come back. I wanted to pray. I wanted to cry. I said that the Third Cottage would bring my friend nothing but unhappiness if she bought it. I said if she did decide to buy the Third Cottage she should have it exorcised before she moved in. I said I knew a priest who would do the exorcism for her.

My friend, somewhat alarmed, said we should go. Reluctantly we turned to our companion to take our leave. He asked if I was OK. He said he was worried about me. I assured him that I was shaken but not stirred. I assured him I would be OK. He replied saying his work was done. He said he had been passing through, and that he had heard about the cottages being put up for sale. His car was parked on the track outside the cottage – I hadn't noticed it there when we had wandered over earlier. As he got into his car, we wished him a safe journey, thanked him for his company, and bade a reluctant farewell. As he drove off in to the distance, my friend said, somewhat wistfully “I never found out his name”. I said, quite simply “Simon, his name is Simon”. Not daring to take our eyes off the Austin Healy and its golden-haired occupant, we watched as it vanished in to thin air in the shimmering heat, never to be seen again.

I still live 5 miles from the village that used to be owned by The Crown, the village that is nestled in the heart of the forest. During that time we were blessed with two children, both girls. Following the death of my father, I threw myself whole heartedly in to my career as an analyst specialising in periodic payments in the banking world. I enjoyed being successful at what I did, and had started to plan to apply for jobs which would take me up the career path. But in time I began to struggle with the demands of working long hours and travelling extensively, and eventually retired early following diagnosis of an incurable and degenerative illness. I often drive past the Third Cottage, on my way to local towns and destinations further afield. I never ever stop, but I do occasionally glance over. For a few years it remained derelict, an unhappy home which held an unhappy secret. In time though, it was bought and lovingly restored. I can't tell you when this happened precisely, and I don’t know what happened to the lost soul, but I would like to think she has been laid to rest. I haven't got the courage to go find out who she had been. I should do, but I can't bring myself to search the church records where there would almost certainly be a record of her birth, as well as her death. I know that if I search the local graveyard, I would surely find her tombstone.

And as for my friend? She decided to stay in the house she had built with her first husband. For a while we kept in touch, but eventually we drifted apart. We never mentioned what happened that day. At some point I heard on the grapevine that she remarried. We weren't invited to the wedding. I got the feeling her new husband didn't approve of us or her other friends from her past. I got a Christmas card from her a few years later saying that they had had two children, that they had moved to a house about two miles from where she had been living when we were friends. She told me that she was happy for the first time in her life.