Friday, 8 June 2012

Life is Not a Dress Rehearsal

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

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

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

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

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

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

Wednesday, 9 May 2012

Letting the Grass Grow Under My Feet

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

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

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

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

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

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

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

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

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

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

Sunday, 1 April 2012

Will I never learn?

Will I never learn that too much wine, or any at all for that matter, is not good for me. It's Sunday morning, ten to six, I've been up for the last 45 minutes feeling much better than this time yesterday. Friday night had been busier than usual – Tae Kwon Do (on my own this time without Antonia, she had a better offer for a night out playing Bingo of all things with Tim and Elise) followed by a very quick very cold shower at the sports centre and then round to Karen's for the monthly book club get together.

The book under review this time was “One Day” by David Nicholls. If you haven't read it, do. It really is very very good. (OK and that's enough of the superlatives.) I hate to admit it, I cried at the end. I know when I'm on to a good read if I start dreaming about it, and when I've finished I can't start another for at least a few days whilst I get thoughts of the former out of my head, which is what happened with this particular book. I didn't get home too late, about an hour before midnight, but having been to Tae Kwon Do followed by book club my brain was buzzing even more than usual, partly due to the rush of endorphins from the exercise, but also from the fast paced talk that goes on at book club. My literary companions are extremely lively characters and seem to have the uncanny knack of switching from one topic to another very quickly. I'm one of the more quieter contributors – its not because I don't like talking, I do, but I just can't seem to get a word in edge-wise. When I do manage to add my four-pennorth I'm normally still about five topics behind, by which point I have well and truly lost the plot!

On getting home (I was driving so had stayed on the Shloer rather than the Chardonnay) I decided to crack open a bottle of wine rather than turn in even though I was feeling well and truly cream-crackered. That was my first mistake. My second mistake was to then flick through the tv channels until I found a film I wanted to watch – in this instance “The Green Mile” starring an actor for whom I have a great deal of respect, Tom Hanks. Having never seen this blockbuster, I decided to stay up, and watch instead of going to bed. Where have I been all my life? Why haven't I seen this film before? It was, without wishing to go overboard on the old superlatives again, extremely moving, and totally and utterly brilliant. I'm not at all surprised it won so many awards. Having settled in to watch this until half past two in the morning, and being completely immersed, I also managed to pile my way through 80% of the bottle of wine before I realised. Tim had given up and gone to bed shortly after I got home, and our girls were tucked up in their respective beds, lost in their own dream worlds, snoring gently. Besides Benji the house rabbit, I was the only one up and about.

Staying up so late and drinking soooooo much wine on my own is definitely not good for the soul – not my soul anyway, or my liver for that matter........ Why oh why oh why did I do it? If I really did need to stay up why didn't I make myself a huge steaming mug of hot milky chocolate – that would have been much better for me. Instead yesterday morning I awoke at my customary half past five, having had about three hours sleep after such a late night, and justly so had the mother of all hangovers. I was, well and truly, a bear with a very sore head. Being in a complete and utter grump I spent most of the day playing Angry Birds and catching-up with my never-ending pile of ironing rather of going down to the farm to do some work – more on that one another time.

A day later I have, yet again, foresworn off the demon drink. It really does not mix well with my Parkinson's meds or with me full stop. Will I never learn?

Thursday, 23 February 2012

Life Love Laughter and Learning

I Love my Life, especially when it is filled with Laughter. I’m Learning to Live my Life with Parkinson’s, to challenge it as well as accommodate all the uncertainties that it brings.

It’s been quite a while since I have woken up in the middle of the night with a blog there in my head, ready and waiting to be written. When that happens, I have to get up, log on, and type it up before I forget what I want to say. The result is this, and replaces its former version, originally drafted about a week ago but not published, and titled “Exercise and Parkinson’s”. How dull is that, and my boring rambling spiel on the benefits of exercise and endorphins has been well and truly ditched in favour of this.

A couple of weeks ago, I woke, as usual, stiff and in pain, somewhere between 5:00 and 6:00 in the morning, in urgent need of a call of nature. Having managed to lever myself out of bed, thanks to the re-positioning of my bedside cabinet about a month ago, I shuffled off to the bathroom, stopping off en-route to the loo for my usual early-morning bleary-eyed inspection in the mirror to count the bags accumulating under my eyes and the latest crop of grey hair springing up on my head. The sight that greeted me on that particular morning was not as expected. Instead of looking like I had been dragged through a hedge backwards as per usual, my hair was standing straight up on end, Jedward style. After my initial shock, I started to laugh. 15 minutes later, I rolled back in to bed, tears still in my eyes and chuckling to myself. My husband and two children had slept straight through and hadn't heard a thing. Later, over the breakfast table, my off-spring regarded me with suspicion and I was informed I was unusually perky and chipper. On explaining, the response I got was, typically, “Yeah - what’s funny about that Mum?” Ah well, the innocence of youth. One day, I hope, when I am long gone, they will look back, smile fondly to themselves, and understand at long last what made me laugh on that particular morning. Well, I can but hope can’t I? Having texted one of my Parkie friends later that morning with an account of my early morning hysterics, the response that came back was “Not so much Jedward, as Joward”! We Parkies understand each other – it’s an exclusive club and one which is for keeps. It was the best start to my day for a long time, and I hope there will be many more like it.

This year is an epic one for all of us. London is hosting the Olympics and Paralympics, our Monarch is celebrating her Diamond Jubilee and long may Her Majesty continue to reign over us, and most importantly of all I turn 50 at the end of July. Being in the grip of my own personal mid-life crisis, I have decided that it’s about time I learnt a martial art. After all, I’m at that time of life where middle-age spread is no longer a joke, its reality, and everything is fast heading south. Most of my jeans no longer fit me, and I dread looking like my old Geography teacher, Miss Gage, who had b**bs that, unsupported, had long since passed her belly button on their never-ending journey south! She had obviously burnt her bra back in the days when it was fashionable to do such things, and hadn’t bothered buying any replacements. As God is my witness it’s true – as Jo and Niki who were there with me will testify. The mind boggles!!

Since Antonia started Tae-Kwon-Do a year ago, I have been hankering to have a go myself. I always fancied myself as a Mutant Ninja. Three weeks ago, I finally plucked up the courage to ask the instructor if he would mind if I joined in for one session, and fully anticipating the response of “Sorry – far too old and doddery” I was encouraged to participate. An hour later, I crawled out, sweating buckets, gasping for fresh air and water, having had the time of my life. I absolutely loved it, and so far I am still going once a week. What’s more, Antonia loves my being there, joining in with her. OK, so it’s going to take me twice as long to learn the moves, it’s unlikely I will ever make Black Belt, but I really don’t care – I’m having fun. The exercise is hard work, but doing me the world of good, and for the first time in ages I feel more like my old self before the Parkinson’s took its insidious hold. I must admit, the youngsters are eying me with suspicion and a couple of weeks ago one young lad half my size who could have felled me in the blink of an eye even had the temerity to request the instructor if he could have a different partner when he was partnered with me for the second time in 15 minutes. Oh the cheek! On being refused he rather grumpily put up with me until time-out was called.

So, watch out – there’s still life in this doddery old Mutant Ninja than you could shake your stick at! Bring it on!

Friday, 3 February 2012

The Wrong Trousers

I'd be very surprised if anyone reading this won't have seen or heard of the Aardman classic The Wrong Trousers. In the film the anti-hero Wallace wakes up to find himself in the middle of a nightmare scenario as he is being used by thief Feathers McGraw as an unwitting accomplice in a major jewellery heist, which is achieved by altering a pair of “Techno Trousers” originally purchased by Wallace for walking his faithful companian, Gromit the dog. Wallace is asleep during the main part of the heist and awakes to find, to his horror, that he has been duped by Feathers McGraw and that he has no control over his legs.

In our household the weekday routine during termtime is pretty much the same day in, day out. My alarm goes off at about 7:00 am, although Elise, now that she is at secondary school, is invariably up by this time, dressed and getting her bag ready to go to school. Hmmmm – I wonder how much longer that will last for as we enter the uncharted (or is it enchanted) years of living with a teenager?

Getting out of bed, for me, these days is a major task in itself, and I am hoping this is a glitch associated with the cold and damp weather we tend to experience in the UK, rather than Parkinson's or a trade-off for the multitudinous drugs I seem to be taking these days. If I have had a bad nights sleep – which is not unusual considering I have suffered from insomnia on and off pretty much all my life – I find I can leap out of bed fairly quick. I'm not the sprightly young Gazelle I used to be, but at nearly 50 I can't expect to be. However, a good nights sleep (more often than not recently thanks to the Rotigotine patch prescribed by my support nurse, James, to resolve my restless legs during the night) seems to result in a lot of pain on waking and whilst trying to get out of bed. One such morning recently, I quite literally got stuck halfway – ie I couldn't roll back in to bed – too painful – and I couldn't get up either. On asking Tim to give me a hand, his response was to rollover, push me from behind, and job done. What I actually wanted was for him to come round to my side of the matrimonial bed we have shared for the past 26 years, and offer me his hand so that I could lever myself out. Oh dear – this does not bode well for the future I muttered to myself as I levered myself up off the floor!

On finally being upright and eventually mobile, sort of, and no thanks to Tim, I shuffled off at a breakneck speed, bent double, feeling 99 not 49, and cursing Parkinson's and my husband in the same breath. On finally reaching my destination, the bathroom (I was desperate – for the loo that is) I found that Elise had beaten me to it and had taken up residence behind the locked door for the next 15 minutes or so.

On such mornings as this, it is maybe just as well I wait my turn patiently outside the locked bathroom door. It gives my arms and legs (which frankly seem to be intent on doing their own thing these days when I get up) the opportunity to settle down and start behaving. The alternative, to me, is maybe taking possession of a zimmer frame – over my dead body! But, I can't deny it – when I have the good fortune to have a good nights sleep – I do feel that for the first half hour or so on waking that I am indeed wearing The Wrong Trousers! Gromit!

Thursday, 19 January 2012

Step Inside My World

An invitation to Maria Miller (Cons)
Minister for Disabled People

Step inside my world, Maria
And I wonder what you will see
A world of differing greys is there
No colours no, definitely not for me

Step inside my world, Maria
And I wonder what you will see
My huband, myself and my children
Children One and Two, but thankfully not Three

Step inside my world, Maria
And I wonder what you will see
Many differing flashes of light
Representing the physical pain hidden well inside of me

Step inside my world, Maria
And I wonder what you will see
An individual with a (promising) career in banking
That is no longer there for me

Step inside my world, Maria
And I wonder what you will see
A person who has worked all her life
But is no longer able, so it's DLA for me

Step inside my world, Maria
And I wonder what you will find
Someone fighting for her dignity
And the sanity of her mind

Step inside my world, Maria
And I wonder where you will be
When I tuck my children in at night
Knowing I can never ever hug them tight

Step inside my world, Maria
And I wonder what you will find
A bewildering array of drugs for me
That will keep me going (I hope) until I leave

If you step inside my world, Maria
My life is not as it would seem
An independent woman now stuck at home
Relying on others for help, poor little me

Inside what has come to live with me, Maria
Is a monster much much bigger than you would believe
Its name is Mr Parkinson's
An old mans disease I thought (stupid stupid me)

So if you come into my world, Maria
You may find life is not at all as it seems
Each day is a struggle to move at will
Even to an ordinary person such as me

What would life be like for you, Maria
Were you such an unfortunate as me?
You cannot imagine it can you, my dear
Until it happens to one such as you (maybe) and not unlucky me

But I am one of the lucky ones, Maria
I have a pension so you see
My mortgage – it is history
Oh so so lucky me

Others are not so fortunate, Maria
If only you could see
Their homes they wont afford to keep
It'll be a struggle for them, but not for lucky me

So don't step inside my world, Maria
Don't imagine what life is like for me
Even though some days it's filled with laughter
It's laughter mixed definitely with that of fear

So don't step inside my world, Maria
To witness the world of horrors awaiting me
Some days I can move and dance through life
But it is not always there, believe me, believe me

I don't want you in my world, Maria
I don't want to be there either - no not me
It is definitely not a bed of roses
Poor poor little old me

Dedicated to the passing of the Disability Living Allowance
and to all those who will suffer financially as a result

Jo Collinge
Person with Parkinson's
Diagnosed July 2010
Retired from Lloyds TSB January 2011

Monday, 28 November 2011

The European Parkinson's Disease Standards of Care Consensus Statement

After months of careful planning and a great deal of hard work, the European Parkinson's Disease Standards of Care Consensus Statement was launched last Tuesday 22nd November 2011 at the European Parliament in Brussels. The day itself was delivered with military-like precision, under the watchful stewardship of the General Secretary of the EPDA Lizzie Graham. I believe that it is fair to state that without such careful planning the day would not have been so successful.

Even though the EPDA itself has been in existence for quite a few years now, I believe it was their very first foray in to the European political arena, so on the morning of the event itself everyone was on tenter-hooks with the ever present worry that not enough MEP's and Commissioners would attend to make the event a success. However, as the time drew near all the places at the tables were soon taken up and the presentations started, with John Bowis, a former MEP and EPDA patron, moderating. The event itself was hosted by MEP's Linda McAvan and Frieda Brepoels, together with two high-profile European Commission officials in public health and health innovation policy, Maria Iglesia-Gomez and Paul Timmers. 

For me personally, the message really hit home with the patient testimony of Branko Smid from Slovenia, when he made an appearance at the start without the aid of the continuous feed of levodopa in to his stomach - basically his lifeline which enables him to walk, talk and engage with the outside world. By doing so, he had demonstrated in the most shocking way possible the effects of Parkinson's in its rawest form without the control of drugs. In a very short space of time, Branko had become withdrawn, depressed and unable to control his body, in spite of the reassurances of his wife Tatijana. As Branko had lost the ability to talk, a prepared speech was read out on his behalf by Chui Mann from the EPDA. To do what Branko did requires a great deal of courage and trust, it is not something which I could ever contemplate, and he has earned my deepest respect.

Also taking part in the discussions were Professor Bastiaan Bloem from the Radboud University Nijmegan Medical Centre in the Netherlands, who discussed the treatment of Parkinson's Disease, which was followed by a short patient testimony from myself on the consequences of the treatment of Parkinson's on my career in Banking, and the impact the illness has had on family life.

The Consensus Statement draws attention to the economic and social costs of the impact of Parkinson's where the population is not only growing, but also living longer. Its aim is to set in motion what the European Policymakers need to do to deliver a standardisation of care across Europe for People living with Parkinson's and has been launched to coincide with the 2012 European Year for Active Ageing. It is for anyone who is involved in the world of Parkinson's, be they healthcare professionals, research organisations, drug companies, PwP's, family members and friends, as well as patient organisation's. Together with further information regarding the launch, the Consensus Statement can be downloaded at:

You can also find reference to it on Twitter from Paul Timmers (Director, ICT addressing Societal Challenges) at:

EIP twitter account @EIP_AHA