Monday, 24 January 2011

The Price of Complacency and Being Wobbly - Revised, Revisited, and Republished

This blog in its original form was first published following the World Parkinson’s Congress. Slice of Life (Jon Stamford) very kindly made the comment that it had been my best blog to date and I have decided to revise and republish it as it disappeared following a restructure of the Wobbly site towards the end of 2010…….

Two weeks prior to [originally] writing this my elder daughter sat exams to win a Bursary at a well known independent girls’ school. She was one of a handful of girls chosen to sit these (well, two handfuls to be precise ….). A fantastic achievement as she was selected from a number who had applied. Having taken the approach that she was going to “get by” on her natural ability, of which she has plenty, she took the decision not to do any prep work. My husband and I tried, but failed, to get her to “knuckle down”. Elise’s approach to such matters is that she works hard at school, therefore why should she work hard at home. Being reluctant to make a big fuss over the issue, we took the path of least resistance and didn’t force the issue.

The day of the exams came and went, there was a lot of pressure on my first born with 3 papers and two interviews, and afterwards I treated her to Hot Fudge Cake with Ice Cream, washed down with Lemonade at a local tea room. We both waddled out afterwards feeling rather fat. My purse had lost a few pounds whilst I, on the other hand, had gained a few! Whilst waiting for my daughter to come out from her interview with the Deputy Head and the Chairman of the Governors, I sat and reflected on 11 years ago, when she was only 5 weeks old. At that time, she had been taken critically ill with suspected septicaemia, but on admittance to Salisbury hospital was diagnosed with an irregular heartbeat, in excess of 250 beats per minute (Supra Ventricular Tachycardia or SVT). She was placed on a drug, which 6 months later my husband and I insisted she be taken off, as our beautiful baby daughter was screaming 24/7 and was covered from head to toe in infected eczema. On top of that, she was under-weight and not developing as she should have been. Our insistence paid off – it transpired that she had a severe allergic reaction to one of the additives in the drug that she was on. 11 years later, our daughter is, in our eyes, a wonderful child who is intelligent and very creative. We were definitely not complacent at the time in questioning the Paediatrician over whether our daughter should be on the drug concerned. Or rather my husband wasn’t – I was suffering from severe sleep deprivation at the time! (In later discussions I definitely wasn’t complacent, when said Paediatrician was keen to place my daughter on a regime of beta-blockers. I stood my ground and refused, he backed down – eventually.)

Going back to the exams to win the Bursary, we received the results in the post a little over a week later. Elise had been offered a place, but not the Bursary. Unless we can find the funds from another source, she cannot go. It goes without saying that we (my husband, me, and my daughter) were all disappointed. But the most disappointed was Elise, as she had decided on the day, at the eleventh hour, that she really wanted to win the coveted place. That was the price of our complacency and a bitter pill to swallow.

But there is another Price of Complacency, and that is the price of being complacent about Parkinson’s. It is up to us, as People with Parkinson’s, to make sure that we are not only heard, but to find the wherewithal to enable research to find a cure, or at the very least a way of halting the progress of Parkinson’s to be found. For those of you who were there at the opening ceremony of the World Parkinson’s Congress in Glasgow, you will recall that Bryn Williams’ speech was nothing short of inspirational. Bryn’s speech was a classic Call to Arms in the war being waged against a hidden enemy, the enemy being Parkinson’s. Quite rightly he had a standing ovation – he well and truly deserved it. Bryn is definitely not being complacent. And like Bryn, each one of us shouldn’t be complacent – each one of us can make a difference to the future of Parkinson’s and in winning that war.

That difference can be just by quietly getting on with living our lives, ensuring we eat the right food that doesn’t conflict with our drugs regime, and that we exercise like fury to keep the effects of Parkinson’s at bay. The difference can be by ensuring that our Healthcare team delivers the right treatment at the right time, and to not be afraid to challenge when something doesn’t feel quite right. Eleven years ago, my husband and I were not afraid to challenge the Paediatrician looking after our daughter, and we are both jolly glad we made that challenge. That is the Price of Complacency.

Having had that experience, I am not afraid to challenge my Neurologist, my Parkinson’s Nurse or my GP if I think my treatment is not right. Also I am not afraid to say to strangers I have Parkinson’s, when they look at me in a strange way as I go all wibbly-wobbly and flustered when I’m out of my precious comfort zone. (Packing and paying for shopping, even a single item, is a classic example!) The reactions I have had range from the incredulous ("you're so young") to the ”so what” reaction. Most people I have come across are ignorant or misinformed about Parkinson’s, a few are well informed and some even want to do what they can to help. And as for the “so what’s” - well they just don’t care

In spite of the "so what's" of this world, we can make a difference by taking up the beat of that drum, in our own individual way, the drum that Bryn is banging in his call to arms. By doing so we can collectively and individually, raise awareness, raise money to fund research, or both. It is by doing our bit that we can rise up, make ourselves heard, put our stake in the sand and chivvy along those scientists and pharmaceutical companies to find a solution to the problem that is Parkinson’s. It is by doing our bit that we can make ourselves heard by the Politicians and Health Service providers to ensure that the right care is delivered at the right time, on time, every time. It is by doing our bit that we can raise public awareness and educate those who know little or nothing about Parkinson’s and its devastating effects.

The Price of Complacency with respect to Parkinson’s is living without question with the degenerative effects of Parkinson’s for the rest of your days. The Price of Complacency is not making your voice heard, not raising awareness, not raising funds. It is up to you whether you want to pay that price.

I, personally speaking, don’t intend paying the Price of Complacency when it comes to Parkinson’s. I, for one, would like to enjoy the years ahead of me as my children grow up, watch them go to University and make their way in the world. I certainly do not want to end up with my children taking on the role of caring for me. I definitely intend remaining independent and enjoying my dotage with my husband by my side for as long as I can! 

As far as my first born is concerned, her god-mother has convinced me that Elise will do well no matter which secondary school she goes to. That said, as her parents and therefore responsible for Elise’s education, my husband and I are of the opinion that the school she ends up at has to be the right school – we are definitely not being complacent.


Added in the wee small hours of 25th Jan – sleep evades me – again! At my clinic appointment with Dr T yesterday, he floated the suggestion of DBS (deep brain stimulation). We had already discussed the fact that I was not coping too well on an already high dose of Madopar, with the revision of my drugs regime to include other drugs for good measure to see me through the night (and primarily, to stop me kicking my poor long suffering husband in my sleep!). The suggestion was that I may need DBS sooner than originally anticipated, the sooner being in about 2 years’ time. I must admit I was somewhat taken aback. My experiences of hospitals have never been happy ones, be it problems following removal of numerous breast lumps in my 20’s, infertility problems in my early 30’s, problems following the births of both my children in my late 30’s and early 40’s, and most latterly a serious haemorrhage following a hysterectomy last summer. Dr T’s suggestion left me in a state of near shock and I was definitely not complacent when I expressed the view that I would rather run for the hills towing my zimmer frame behind me – those Olympic athletes coming to our Green and Pleasant Land in 2012 will be poor competition for me. The very thought of someone rootling around inside my brain, no matter how well qualified they are, frankly leaves me in a puddle of cold sweat on the floor such is my complete and utter fear! I jest not!

Following the appointment I met up by pre-arrangement with an old school chum who I hadn’t seen since leaving school in 1979 (good grief) – she is now Executive Director of the Institute for Science, Innovation and Society (InSIS) at the Saïd Business School, University of Oxford. Always a very clever girl at school – one of a number in my year of which I was definitely not one – it transpired that she had done research in to early symptoms of Parkinson’s for her Doctorate! I didn’t discuss the future of Parkinson’s much with her – I’m afraid I was too much of a quivering Wobbly Wreck and my poor friend probably went home wondering if I was definitely in my right mind! But I hope very much that we can have that conversation soon – just as soon as I can manage to sensibly string more than two words together.

But there is one thing that I am absolutely clear about – I do not want DBS – absolutely no way. The very thought of it spurs me on to raise the profile and public perception of Young Onset Parkinson’s in any way I can for as long as I am physically able to, be it talking to politicians, giving interviews on the radio, or boring my family totally and utterly rigid with the subject. The very thought of DBS spurs me on, for as long as I am physically able to, to raise money, be it £1, £1,000,000, or any sum in between, for the funding of research, so as to move just that bit closer to the Holy Grail that is the Cure for Parkinson’s.

Sunday, 16 January 2011

Taming the Parkinson's Beast

My intention when I started this blog in the wee small hours was to delve in to what life was like for me as a “Parkie” chic – someone at the prime of their middle-aged life with a neuro-degenerative condition. But, when I saw where it was taking me, I decided “Nah – I sound like a whinging pom!” That said, I have decided to include the first paragraph......

At the time of writing this, I am really tucked up in my bed far off in the land of nod - I wish! But the fact is, it is actually 5:35 on Saturday morning, my feet are turning blue from the cold, and I cannot sleep. I've just looked down at my right hand and noticed I have left finger marks on my leg where the “Parkie-death-grip” has left its mark. I had the unfortunate experience, about a year ago, where I was on a course at my employers training college in Solihull, and went to breakfast in the morning with finger marks on my right cheek. Yes, the Parkie-death-grip had left its mark whilst I was asleep on my face and no amount of make-up could cover it up. Much hilarity at the breakfast table, and it left its mark until lunch time. When the Parkie-death-grip occurs, which these days is more often than not, my right hand cramps and it is really painful – I jest not! So as you have by now gathered, Parkinson's has gone down my right side lucky me I'm left handed. But as I type this (one handed - I used to be a record breaking100% accurate blind touch typist in my youth) I've noticed that I also have pain in my left shoulder, which is one of my earlier non-motor symptoms on my right. Does this mean the disease is getting its tenacious claws in to me and my precious body and starting its inevitable course down my left side? Who knows, but my brain is screaming "No, not yet. I'm not ready!" It will be a question I have for my wonderful neurologist, who I irreverently refer to as "Dr T", when I pay my twice yearly pilgrimage to see him on the 24th of this month. Don't get me wrong here, my irreverence is not due to lack of faith (or sleep…..). It is more that I don't want to publicise who my specialist is. I have every faith in Dr T, and have absolutely no desire to change to another neurologist at this moment in time. Not only does he know what he’s talking about, he listens carefully  to what I say, discusses my options, and treats me as an intelligent human being. He is also very kind, and as for bedside manner – impeccable! Having absolute faith in ones neurologist is, in my opinion as a relative new kid on the block, top of my medical-care list and I have great expectations that Dr T will continue to look after me for many years to come. 

And this is where my whinge ends and I’m changing tack somewhat. Over 24 hours have passed since I started this blog and yesterday I decided, on a whim, to take my children to see the latest kids’ movie, Gullivers Travels, showing at a cinema in Swindon. I know I read this classic tale many, many moons ago, and whilst I can remember the plot, vaguely, I can’t remember any of the semantics. The story itself has been given a face lift, and brought in to the 21st Century.

Our unwitting hero, Gulliver, has an iPhone, works in a high rise office block, and is madly in love with his female boss. Gulliver is an unlikely hero, living in a world of his own at times, and I must admit I found his approach to life somewhat irritating at the start. But what has remained the same in this remake of the classic tale, if memory serves me right, is the little people, the Lilliputians. The Lilliputians are only 6 inches tall, but they are brave, resourceful, determined, work together as a team and are charmingly old-fashioned. And as for the special effects – incredible! The film was hilarious, but on a serious note it brought it home to me that we, meaning you, me and anybody who’s life has been touched by Parkinson’s, are the Little People and Parkinson’s the giant. But just as the Lilliputians beat their demons, we can, and we will, beat this degenerative condition. But we can only do it by working together. At the moment, two people stick out in my mind who are actively pursuing the Holy Grail – the holy grail being the Cure to Parkinson’s (or, at the very least, finding the brakes to slow it down). Those two people are Tom Isaacs and Bryn Williams. They, together with the support from their own circle of friends, families and supporters, are giants in the Parkinson’s world and are forging the path ahead for all of us. But what Tom and Bryn need from us is our support. It is only by pulling together and working as a team, just as the Lilliputians did, that we can tame the “beast” that is known as Parkinson’s. 

It concerns me when I come across a PwP who has buried their head in the sand. To all of you out there in the Parkinson’s world – don’t bury your head in the sand – instead work with Tom and Bryn. We all need to look the Parkinson’s beast right in the eye and confront it – just as Gulliver did when he was confronted by a seemingly all powerful creature which threatened the way of life of the Lilliputians. In the film, Gulliver overcame his own personal shortcomings and fear. Whilst it is beneficial to accept Parkinson’s before it can be confronted it is also really important to do everything in your power to stay mobile, stay sane, overcome your fear and stay in control. In short, we can all become a Gulliver – a kind of antihero.

And now – I’m going back to Swindon to return the wellie-boots I had bought Tim a couple of weeks ago, they don’t fit his feet, which was my original reason why I went to Swindon yesterday. Instead, I managed to leave the wellie-boots at home and only realised when we had got to our destination! This time, I shall make sure I have also turned off all the gas rings on the cooker before leaving home. I shall ensure I do not leave one of them on all day, which is what I did yesterday.

Wednesday, 12 January 2011

Setting the Record Straight – Fact? Or Fiction?

I have been somewhat pre-occupied over the past few weeks, and I must confess at times I have felt very low, both in energy and in spirit. I have some major changes in my life happening, which have required a great deal of time to consider and decide what to do for the best. It’s on a par with my marriage to my husband, the birth of our children and the unexpected death of my father. Even the book I finished last night (The Guernsey Literary and Potato Peel Pie Society by Mary Ann Shaffer and Annie Barrows) dealt with the subject of massive changes, and the author herself (Mary Ann) sadly passed away just before finishing the book. Let's just say, for the Collinge family, things will never be the same ever again and I am nervous, excited and filled with trepidation. What a combination! When these changes have happened I shall doubtless enlighten you, but on to matters more mundane......

I wanted to talk to you about The Sun – not our dearly beloved Sun which illuminates and warms this planet of ours giving us all the ability to exist. That said, I could really do with a light box to help me through these dark winter months, but I digress. In fact I’ve even managed to do a Ronnie Corbett on you before I’ve even started the story! Now, where was I? Ah yes, here we go……

Insulted, flattered or highly amused? I received an offer from a magazine to sell an exclusive story which was reported before Christmas by one of the British tabloid newspapers. As you have probably gathered by now, I am talking about that beloved English institution The Sun newspaper. Now I don't habitually read The Sun, in fact I’ve never ever purchased it, but then again I've never regularly subscribed to any of our national papers, regardless of whether tabloid or broadsheet. I guess I ought to really being the granddaughter of an author and journalist. But I have always been a bit sceptical of sensationalist strap lines and would much rather hear news of worth from the BBC as it happens.

To give you some background, I was approached by Parkinson’s UK to be a local advocate on the benefits of the wii fit and maintaining mobility, which I was happy to do. A reporter from the local Gazette and Herald came and interviewed me, pictures were taken, and they duly ran the article. This was followed up a few days later with contact being made by The South West News Agency, who interviewed me over the phone, and promised faithfully they would let me know who they had “pushed” the story out to – never to be heard from again! A week later, I received a call from Parkinson’s UK informing me that Channel 5 wanted to interview me for their prime time 5 o’clock news bulletin as they had seen my story in The Sun. My response was “What story in The Sun” – I was totally and utterly oblivious to the fact that a journalist from the paper had picked up the story from the news agency, and had effectively put his own spin on the story. Naturally I was straight on The Sun's web site and found to my amazement, and amusement, that a spectacular cure for Parkinson’s had been found with the headline “Banker stopped Parkinson’s by playing on wii" and the claim that I had told of an amazing “cure”.

Is that story Fact? Or is it Fiction?

Well, here are the Facts for the wonderful journo who ran that story……..

  •  Much as I would like to have been, I am not a high flying banker just a decent hard working business process analyst who has 23 years loyal service for the bank with a black horse

  • There is no cure for Parkinson’s. One day there will be of that I am sure. Just not today, and I apologise if readers expectations were falsely raised by the Journalist who ran the story. 

I will leave it up to you to decide which bits of the article in The Sun were Fiction!

And as for the offer by the magazine to “sell” my story – well, I felt there was nothing to sell. The facts are there for all to see, and I turned the magazine down. Unable to sleep one night just before Christmas, I decided to “google” my name, only to find numerous links to a more accurate version of this  story, as well as an in-depth discussion on a Japanese web-site about The Sun article. The majority of the contributors saw the story for what it was, and the majority were supportive, not just of me, but all those with young-onset Parkinson’s, or any mobility issue.

Which leaves me wondering, what on earth would my Grandfather would have made of all this?

Monday, 3 January 2011

Christianity, Parkinson’s and Me

This blog has come about as a result of being asked (a while ago now) by my good friend and veteran WobblyWilliams blogger, Bob Kuhn, about my views with respect to what my religious beliefs mean to me as someone with Parkinson’s. His question came about as a result of reading my blog "Last one out, First one back", published last October. The answer in short, my friend, is that I have given it a lot of thought and I really don't know. But, I will attempt an answer, but in order to do that I need to wind back the clock to before I was born. 

My parents were both raised Catholic – my father because his mother was Irish Catholic. My maternal grandparents were not, to my knowledge, Christian or held any religious beliefs whatsoever, in spite of my grandfather being very Victorian in the way my mother and two sisters were raised. Their early years were spent with their Norlands trained Nanny either on the top floor of their Kew house or in the park. A visit downstairs normally happened at bedtime to wish their parents good night. 

On the outbreak of war, my mother and her sisters were sent to St T's in the country for safety and my grandparents retreated to Worthing. So it was that the 3 girls were initiated into the Catholic faith. My father, meanwhile dodged the bombs whilst attending Hampton Grammar. 

Having been introduced by a mutual friend, my parents wedding in the mid-1950's was not only a full Catholic mass, but my father was also in full dress uniform as a serving officer of the British Army. My mothers two sisters, by this time, were both back at St T's, having embraced a life with God in the confines of the convent. Travel for them both at this time was very restricted, and they were not allowed to attend the wedding of their younger sister. 

Whilst I hold very early memories of my aunts dressed in black and at one time wearing cowls, my contact with religion was non-existent until I went to a Catholic boarding school, as Christianity did not play a part in our upbringing. It was only then that I encountered the Catholic faith, where the nuns were very strict, and in their eyes we were all sinners, or so it seemed. On arriving there, and being dreadfully homesick, I quickly made friends with a gorgeous flame haired little girl called Niki. Niki, together with her wonderful mother Ann, were my saviours. Niki and I are still firm friends, and she is still a gorgeous red head. Ann is now in her 70's and we email each other regularly. As Niki lived only a few miles from the school, I was a frequent visitor to their house until the day I left school at 16. I even used to invite myself when the rigours of boarding school life became too much.

I have very fond memories of Ann and her never ending kindness and generosity. She was, and still is, a strong Christian, and it is thanks to her that I "defected' to the more gentler Anglican faith. Hell and purgatory, in my household today, does not exist - only heaven. I was frightened rigid during my early school years, I see no point in my own children suffering the same fate!

So, Ann was influential during my school years. The other person who was influential during the latter school years was my mother's eldest sister, Helen, or Mother Clare as I had to call her, as she ended up as deputy head of my senior school. Our arrival more or less coincided and we both found ourselves thrown together and put in a very difficult position. I wasn't allowed to tell anyone M. Clare was my aunt, but word soon got out and to the day I left I was pestered as to her real name, and those of the other nuns!

As for my father, whilst not a "religious" man, he held a strong fascination with religion, and there was not much he did not know about the subject. I remember during my childhood he would spend many hours debating the subject with his sisters-in-law. But he also became fascinated by other religions, primarily as a result of living and working in a Muslim country for 20 years. He ended up studying extensively not only the Christian and Muslim faiths, but also Hindu, Siekh, and Judaism. He had a tremendous thirst for knowledge and very rarely read fiction. When he passed away he had in his possession hundreds of books, primarily on the subject of religion, military history and sport.

So, to put it mildly I had a slightly confusing time of it Christianity-wise until I left school. My mother had, and still has, absolutely no interest, my father was not religious but fascinated by it, a wonderful aunt who got more than she deserved in raising a rebellious niece, scary nuns who had me labelled as an eternal sinner at the age of 8, and the wonderfully kind and gentle Ann. 

So what about my faith and Parkinsons? The two make good bed-fellows in that they are both shaky at the best of times! But I do attend my local church, a bit hit and miss at times I must admit, and I find myself there about every 3 weeks or so. I enjoy the service, it is always lively and well attended, and I have made some good friends. I always give my children the choice of attending with me, as it is their decision if they wish to go or not. I do not intend “forcing” the subject upon them, but I do ensure that they understand the true meaning of Christmas and Easter. As for my father and my aunts, I am just grateful that they are no longer alive to see the quivering wreck I have become. It must be hard for my mother, but we make light of it by arguing over who's going to push who in the wheelchair first. 

Since being diagnosed several of my Christian friends have attempted to bring me to be “healed”. But my early experiences make me want to run to the hills and hide and they have now learnt to respect my feelings! For my part, I have always had a twinge of jealousy for those who find the Christian path an easy one. But at least I am on that path, just about! And I am just as determined to stay on that path as I am not to let Parkinson's defeat me. With God by my side and in my heart, my journey through the Parkinson's world may not be a comfortable one, but at least I won't be alone.  

All this has left me with a question for you that has always niggled me - Should non-Christians celebrate the birth and death of Jesus (Christmas and Easter) or their Pagan equivalents?

As to an answer to your question Bob, I'm really not sure if it has. And next time we see each other I'm sure we'll have a debate about this!