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 In a very short space of time, Branko had become withdrawn, depressed and unable to control his body, in spite of the reassurances of his wife Tatijana.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. 

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.

"Jim'll Fix It" (Part II)

For the third time this year, I find myself dedicating a blog, this time to someone I barely knew but for whom I had tremendous respect - known on PD Junction as "Pauli", of which he was a much loved and well-respected member. Even though I never had the opportunity to meet Paul in person, we had chatted a few times on-line and he very generously sponsored the 86 walk I did along the Kennet & Avon Canal during the Easter Holidays as well as providing me with some extremely sound advice. His wit and wisdom are missed by all on PDJ and our thoughts are with his family.


On reflection, I think the title of this post should be "Dawn Fixed It for us" - for reasons which will become obvious.

At last, the day had finally arrived when the Collinge family were going on an adventure which had been postponed from last September. Not only that I was to realise a dream that I had been harbouring since I was a child. It came about as a result of being in the right place at the right time last July - something which doesn't usually happen to me. Normally I'm either in the wrong place at the wrong time, in the wrong place at the right time, or the right place at the wrong time. (Elise will be more than happy to testify when I tried my best to drop her off at a birthday party 24 hours too early a couple of years ago!)

It had all come about when I had the good fortune to meet Dawn, who at the time was visiting her relatives who lived in my village. She had taken her children to the village hall playing field to run off steam before they went home. During our conversation I told her about living with Parkinson's Disease, and how my husband in particular and our children had struggled at times to come to terms with the "life" sentence that had been handed down to our family unit through no fault of our own. At this point she mentioned that she works for a charity called "Fly2Help" where she and her colleague arrange a day to remember for children and their parents/carers who had similar experiences to ours, for a multitude of reasons. The aim of the charity is to provide a day like no other so as to promote a sense of well being and confidence whilst encouraging children to think outside the box. Its done by arranging with private owners of light aircraft or helicopters who are willing to volunteer to take the family out on a trip where they, quite literally, reach for the skies and see a world which they know from a totally different angle so leaving their troubles, quite literally, behind.

A date was set for a few months later for a helicopter ride and lunch courtesy of Fly2Help, shortly after the start of the new term in September. However, on hearing that I had been ill during the summer holidays, where I had walked the precarious tightrope between this world and the next, Dawn decided  to postpone the outing to Spring/Summer 2011. The illness had quite literally knocked the stuffing out of me, my weight had gone down to just below 8st, and it took me 5 to 6 months to properly recouperate.  To say I was disappointed at having to postpone the day is an understatement, but thankfully Tim and the girls weren't, as they were blissfully unaware of the surprise that had been organised for them.

So, at last, the day arrived - a year late, but very definitely well worth the wait. Dawn had phoned me the previous evening to confirm that the weather reports looked favourable, and that she also arranged for us to be taken out for a spin in a vintage Austin Healy. Having told Tim a few weeks before about the surprise (so that he could take a day off) I finally spilt the beans to the girls after Dawn's phone call, during a conversation where I asked Elise and Antonia what they would like to do the next day. Back came the usual responses - swimming, a walk in the woods, picnic lunch at the village hall playing field and so on. I started to suggest more "outlandish" ideas, and eventually told them what was in store. They were surprisingly subdued, but I think they thought I was joking to start with. Antonia, bless her, on being asked where she would like to go to in the helicopter, suggested Stockholm!

On our arrival at the airfield where the charity has its base (we were late - as usual) we met Dawn and her colleague Jonathan. Whilst filling out the required paperwork and listening to a safety briefing about the "Do's and Dont's", the owner of the Austin Healy arrived - and without further ado Dawn, Jonathan, Ian (the photographer) and I waved Tim and the girls off. Before too long though disaster struck as the car had got, quite literally, stuck on a speed ramp, with the result that the exhaust had come off bringing that part of the day to an abrupt end!

The helicopter arrived shortly after this, piloted by John and David. In a whirlwind of activity, we were soon strapped in, headphones on and take off cleared by the control tower. Up, up and away we went, waving frantically to Dawn, Jonathan, Ian and John who were left earthbound, and before too long the fields and lakes of the surrounding area looked more like pieces of patchwork, interspersed with villages looking like toy towns. Antonia, true to form, was busy chattering and giggling at how strange it all looked, whilst Elise and Tim took some really fantastic pictures for us to remember our flight. Travelling at 120 mhp (how fast) David flew us to familiar territory and pretty soon we were hovering over our house, where my poor ancient and battered car (aka "Harry") looked more like a forgotten remnant from Antonia's toy car collection, abandoned and left outside rather than put back in the box with the others. Over Antonia's school we flew, and onwards to the secondary school that Elise will be starting at in a few weeks time. It all looked so familiar, yet so strange, as we looked out at tiny people going about their daily lives whilst we flew over without a care in the world.

Back over the lakes and fields we flew, looking down at the marquees and staging erected, ready to receive the thousands due that weekend at the Womad festival (World of Music and Dance). Back to the airfield and before too long we were landing - back to reality, where the tiny world we had glimpsed at from the skies returned to normal, and we were back on terra firma, full of smiles and excitement, with a tinge of sorrow that the hour we had in the skies above had come to an end.

The day wasn't over though, and after a hearty lunch we were taken up to the control tower, from where we waved a sad farewell to John and David, whilst Antonia donned earphones ready to talk to other pilots who were calling in (and yes, given half a chance, she would have as well!). All too soon the day was coming to an end after we visited the airfield fire station and we were reluctantly saying goodbye to Dawn, Jonathan and Ian, whilst the girls were given one last surprise - a goody bag full of treats. Reluctantly we made our way back home, not wanting such a wonderful day to end whilst armed with stories to tell and photographs to show. It was, truly, a day that will live on forever in our memories.

The Collinge family would like to take this opportunity to thank Fly 2 Help and in particular Dawn, Jonathan and Ian, for arranging such a magical day for us. A huge thank you goes to the owner of the Austin Healy - with an apology from me as I have forgotten your name, sorry! We hope you got home in one piece.

And last, but by no means least, a tremendous thank you to John and David - without whom the day would not have happened! It was and will always be, a day like no other.

"Jim'll Fix It" (Part 1)

This is a tale of two halves, the first half having its roots in my childhood, so it feels sensible to me that I start at that point, way back to when I would have been about 8 or 9. Being the early 1970's, Bell Bottom trousers and mini skirts were all the rage, as were hotpants, and platform shoes. In the first half of the decade there had been opposition to the Vietnam War, whilst the music scene saw the rise of bands such as Fleetwood Mac, The Eagles and The Doobie Brothers (and yes, I am still a fan). The Beetles had split up, with Paul McCartney relaunching his music career with Wings, whilst John Lennon was singing songs about peace and love with Yoko Ono. The early part of the 1970's also saw the untimely deaths of Jimi Hendrix, Jim Morrison and Janis Joplin.

My Dad, being an officer in the Army Air Corps at the time, had been asked to fly the then reigning Miss UK to a spectacular event taking place at Roundhay Park in Leeds, landing his helicopter in the centre of the showground in front of thousands of people. How on earth he wrangled that one, I really don't know, but obviously it was an opportunity he was not going to miss out on. 

So that we could go watch this momentous event, we had been invited to stay with our ex-neighbours from our Netheravon days who had moved to Leeds. For me, the journey “up North” was very exciting – to my knowledge we had never travelled further than the “Watford Gap” - whatever that was! When we lived “next-door-but-one” to them in Netheravon Jim and my Dad were based at Netheravon airfield, and this period in our lives saw the start of a good friendship between the two men which was to last until the day my father died in 2002. As a child I adored Jimmy, and to be honest I still do! Whenever the two returned from exercise it was not unusual for me to run up to Jimmy, with the question “Did you miss me?”. Jimmy's wife, Joan, has never once failed to remember my birthday, and as usual, the card which arrived from them this year was addressed to “Little Jo”. This had been preceeded a few weeks previously by a package from Joan containing some old black and white photo's of the day at Roundhay Park.

Joan was a constant in our lives during those Netheravon days, and without batting an eye-lid took in my brother and me when my big sister suffered a serious skull fracture after falling off her bike. Needless to say it was the days before cycle helmets. What did two more children matter when she had successfully raised 5 of her own? We pretty much spent every spare minute we had in each other's houses and gardens anyway, playing games such as “Cow Boys and Indians” with the two youngest children, Richard and Andrew, who were about the same age as us.

Going back to the show at Leeds, what Jim and my Dad had both failed to mention to their respective wives was that Jim had “fixed it for himself” to meet and greet said Miss UK when she landed in my Dads helicopter at the showground, and escort her to her appointed place in the events. So, you can imagine Joan's surprise when Jim, having muttered to Joan that he “wouldn't be long” was next spotted striding towards where my Dad had landed the helicopter. It was, truly, a momentous occasion in the lives of the two families, one which has never been forgotten!

It was about this time that I started to hanker after a trip in a helicopter, preferably with my Dad at the controls. But the nearest I ever got to even sit in one was when I fought my way through quite a few boys so as to manage a brief look at one which was on display at an Army Air Corps event somewhere. Needless to say there was quite a bit of jostling going on, but I remember being completely bedazzled by all the different dials and switches.

So, this ambition of mine has lain dormant all these years. And then, at last it surfaced 40 years later, when purely by chance and "being in the right place at the right time" I met Dawn from the charity "Fly2Help". I was to finally realise my childhood dream..........

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!

Last Thursday

Last Thursday was, for many of us, a day like no other. Together with old friends and work colleagues, we paid our last respects to Professor Tony Atkinson. Tim and I had both worked for Tony, myself only a year, Tim – quite a few more than that. We knew it was going to be a well attended affair, but hadn't quite prepared ourselves for just how many people were there. On the way over, Tim and I tried to predict who we hoped would be there, and who maybe wouldn't. During the time that Tim worked for Tony he said that he didn't ever once recall Tony loosing his temper.

Tony had a great many friends and acquintances, and during the service as various individuals who knew him well stood up and spoke about Tony I began to realise just how little I knew – for example I didn't know he was a Queen fan. In a bizarre way the eulogies are a part of any funeral service I enjoy, especially if that someone is as colourful a character as Tony was. To say that he let the grass grow under his feet would definitely do him an injustice – he was a true trail blazer.

For many of us, it was a reunion quite unlike no other – old friendships from a good 20+ years ago renewed, gaps in our knowledge filled (for me this was particularly true and I have Mike H to thank for that one), quite a few faces forgotten dragged out of reluctant memory banks. I don't recall when we all started drifting apart, it seemed to happen gradually over the years as we left to pursue new avenues and achieve our destinies – so it was good to spend those few hours together again and recapture the closeness and friendships.

Typical of the team Tony had 25 years ago, we were the last ones standing whilst others around us left and went back to their own lives. There was a kind of reluctance to finish what had been a perfect day and hasty arrangements were made to adjourn to the Wyndham Arms in Salisbury. Tim and I declined – we needed to get home for Antonia (Elise was staying at a friends overnight), and I was beginning to feel the usual fatigue begin to set in. Basically, I needed my bed!

So, who was there that we hadn't seen in a few too many years? Roger H, Rigger, Ray, Dave S, Bob and Jean, Dave C, Roy, Paul, Nigel, Mike H, Sue, Zain, Alex, Helen, Melanie, Meg – these are just a few out of the so many, too many to mention! There were lots of hugs, lots of laughter, and a few tears. There were stories of great success, bought about by words of wisdom and encouragement from Tony. I think to me the one who made the greatest impact was Alex – if my memory is correct when we worked together Alex was a laboratory assistant, but on encouragement from Tony she went to University, got her degree closely followed by her PhD. As a result of that encouragement, Alex has had quite frankly an amazing career and has travelled the world many times over. For us it was especially good to catch up with Dave C – we haven't seen him since before Antonia was born, he was our Best Man when Tim and I married over 25 years ago.

A few people I recall from those days who were not there, for whatever reason that was – Sarah, Karen, Eric, Steve, Iqbail and a few others whose names I have forgotten!

To quote an e-mail received yesterday from Zain with which I whole heartedly agree:

"It's a strange thing to say but I actually enjoyed (!) the day and the fact that it was such a great send off for a truely lovely guy. I can only guess that Tony would have been hugely chuffed to know how much of an impact he had made on so many of us."

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.