Friday, 24 June 2011

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 4th 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.

Tuesday, 21 June 2011

The end of an Era

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

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

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

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

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

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

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

Rest in peace Tony, rest in peace.

Monday, 13 June 2011

Deal? Or No Deal?

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

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

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

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

Here are my questions:

  1. Parkinson’s does not discriminate against nationality, race, creed, colour of skin, age, or sex. Fact? Or Fiction?

  2. The more obvious motor symptoms of Parkinson’s are preceded by a myriad of non-motor symptoms, which can pre-exist for a number of years. Fact? Or Fiction?

  3. Parkinson’s can sometimes be misdiagnosed as something else. Fact? Or Fiction?

  4. On diagnosis it is likely that 80% of the brain cells in the niagra region of your brain controlling the release of dopamine to your body will have already died off. Fact? Or Fiction?

  5. Parkinson’s is often diagnosed by clinical observation. Fact? Or Fiction?

  6. The drugs to control the symptoms are hideously expensive and a drain on NHS resources. Fact? Or Fiction?

  7. There is no charge payable for prescriptions for a Person with Parkinson's in England. Fact? Or Fiction?

  8. Parkinson’s is a degenerative illness. Fact? Or Fiction?

  9. Parkinson’s is a contagious illness from which you will die. Fact? Or Fiction?

  10. Parkinson’s is currently incurable. Fact? Or Fiction?

How did you do?

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

  1. Parkinson’s does not discriminate against nationality, race, creed, colour of skin, age, or sex. Fact – it is totally non-discriminatory, just as the boxes are which the contestants pick at random before Deal gets underway. Before I was diagnosed I had always thought Parkinson’s afflicted the older generation, and favoured men over women - little did I know and I apologise to those those of the opposite sex who are more senior to me in years.

  2. The more obvious motor symptoms of Parkinson’s are preceded by a myriad of non-motor symptoms, which can pre-exist for a number of years. Fact – non-motor symptoms can be things like a chronic sleep disorder, a gradual loss of sense of smell and taste, difficulty swallowing, dribbling, anxiety, depression, lack of facial expression, monotone voice…. etc. (And I do so hate it when I dribble..... eugghhh.) On diagnosis a Parkie-person will often realise they may have been suffering from this for quite some time. Further information about motor and non-motor symptoms can be found on www.epda.eu.com, www.parkinsons.org.uk, and www.nhs.uk

  3. Parkinson’s can sometimes be misdiagnosed as something else. Fact – it can be misdiagnosed as stress, depression, frozen shoulder, even essential tremor

  4. On diagnosis 80% of the brain cells in the niagra region of your brain controlling the release of dopamine to your body will have already died off. Fact!

  5. Parkinson’s is often diagnosed by clinical observation. Fact – if there is any doubt, this can be confirmed by a DAT scan

  6. The drugs to control the symptoms are hideously expensive and a drain on NHS resources. Fact!

  7. There is no charge payable for prescriptions for a Person with Parkinson's in England. I would love to say this is Fact, but it isn't, it's Fiction – the current list defining which illnesses/diseases are eligible for free prescriptions on the NHS is out of date and long over-due a review. I understand this had been on the agenda under the last Government, but is now shelved for the foreseeable future. I could launch off on a political tirade at this point, but I'm not one to take sides, and it would not hold any value

  8. Parkinson’s is a degenerative illness which first affects one half of the body before taking over the other half. Fact – a Parkie-person will eventually require help with the most simplest of tasks like getting out of bed, getting dressed, eating food, going to the bathroom. But it doesn't only attack a PwP physically, it can also affect mental health, self-confidence, self-esteem, and even family relationships

  9. Parkinson’s is a contagious illness from which you will die. Fiction – what it does do though is increase the risk of complications arising from other illnesses, and in a minority of cases can be genetic handed down the generations. With regard to complications – I have been there, I have that t-shirt. 10 months ago I was haemorraghing so badly following a major op that I thought I was on my way to meet my maker. I will be eternally grateful to the doctors and nurses at Dorchester hospital who were able to stop the bleeding and piece me back together again

  10. Parkinson’s is currently incurable. Fact – but a great deal of research is going on out there, and I am positive that one day, some day, a cure will be found to not only halt the disease in its tracks, but also to also reverse the effects by renewal of those much needed brain cells. It may not be there in my lifetime, or yours, but I hope and pray it will be there for the next generation who have yet to be diagnosed.

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

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

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

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

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