Showing posts with label Parkinson's UK. Show all posts
Showing posts with label Parkinson's UK. Show all posts

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.

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


Tuesday, 23 August 2011

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

Saturday, 5 February 2011

Banking, Politics and Me

I did toy with the idea of calling this blog “The Importance of Being Earnest”, but then thought better of it, as the subject matter is not a trivial comedy for serious people, unlike the stage play of the same name by Oscar Wilde. It is instead a very serious subject that concerns a lot of people in the UK at present. It is more to do with a world that is alien to me, that being the world of Politics. Even as I type this it feels strange to be discussing this. I am the archetypal floating voter – seriously – I never ever decide who I am going to vote for in general and local elections until the very last minute. In fact I have even been known to get to the ballot box on one or two occasions and still be undecided. I always consider who I am going to vote for, read all the literature, discount those candidates who cannot be bothered with even putting anything through my door and then side with the party I think has got the best deal on the table. Interestingly, my vote invariably ends up the same party! That said, I annoyed my elder daughter in the last round of the general elections, as I never ever tell anybody who I vote for, and my refusal last  time to go public seriously annoyed my first born. Even after 25 years of marriage my husband doesn’t know who I vote for. That’s my constitutional right, and I’m sticking with it!

Apart from a brief “flirtation” with politics when I was 18, canvassing for my brother when he stood in local elections as a Labour party candidate in a traditionally Conservative ward, I have never really taken much interest in the subject. I remember I really enjoyed the canvassing, Ant did well all things considered (a small swing in his favour), but my best friend at the time, a staunch Conservative, refused to talk to me for about 2 weeks, until I told her not to be so silly.

And that was the last time I took an active interest in politics, until about 2 weeks ago that is. The last few weeks have been momentous for me, as officially, at 2:30 pm UK time on Monday 31st January, I left forever the hallowed halls of banking (namely the one with the black horse running amok on a beach somewhere) and officially entered the world of the retiree. A little earlier than planned, I must admit, but my mate Parkie had a lot to do with that decision. But it was also momentous for another reason. It marked my sojourn into the world of politics again, not just once, but twice, to lobby politicians about the proposed changes to the Disability Living Allowance (DLA). Lobbying is something I have never ever done before, never thought I would find interesting, and I hate to admit it, but I think I have got completely and utterly hooked!

Had someone told me two years ago that I would be doing such a thing I would have told them to get lost. “What me, talking to politicians – nah!” But, that is what I have been doing. I was asked by Parkinson’s UK to join them as a patient representative of the charity, as they are concerned, as are many others, about the changes to the DLA and I agreed to go with them to Portcullis House on two seperate occasions, to speak to members of the Liberal Democrats and Labour parties. I even took the opportunity to speak to my own MP whilst there. Before the meetings, I did my research, and read up on the proposed changes and very quickly realised that whilst the DLA needs a radical overhaul, the radical overhaul in itself was a potential minefield and was going to result in a lot of disabled people, who rely on this payment, being seriously disadvantaged. I also came to the conclusion that it was going to seriously disadvantage the Government, as the changes were going to cost a great deal of money to not only implement, but also administer going forward, money which could be better diverted elsewhere. It wasn’t right, so with my business analyst hat on, I spoke out and put forward my views.

I am not going to say what those views are in detail – that is between me and those I spoke to. I even had the temerity to put forward some proposals of my own. In my opinion as a new kid on the block of politics I thought the proposals I put forward were sensible, considered and justified (well, sort of!).

What I would like to say is a huge thank you to those Members of Parliament from the Liberal Democrats and Labour parties who took the time out to speak to me (and others) and listen to our views and the impact it will have on us as living, breathing, disabled human beings. But most of all, I would like to thank my own Member of Parliament , Claire Perry (Cons) who saw me at extremely short notice. I had met her once before, when she was canvassing during the general elections last Spring. It was the first time a candidate in my constituency had actually knocked on my door during the run up to an election, so I took time out to talk to Claire and listen to her views. I was impressed by what she said then, and I was impressed when I met her again earlier this week.

This time though, the tables were turned, as it was I who wanted to speak to Claire to put forward my concerns, as a member of her constituency rather than a lobbyist on behalf of Parkinson’s UK, about how I will be personally impacted by the proposed changes to the DLA, and she took the time to listen to what I had to say. We didn’t just discuss the DLA, we talked about other things as well such as the local secondary schools (a subject close to my heart as my elder daughter is soon to move on up to “big school”), my career in banking and also how the diagnosis of Parkinson’s affected me, and my life as a busy (and now full-time) Mom.

As for my brief sojourn in to the world of politics, who knows if I will do any more canvassing or lobbying in the future? What I will say with certainty though, is that whilst I will miss the world of Banking, what ever my retirement has in store for me I don’t think I’m going to be bored!