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

Failure is not an option

Woke up this morning filled with a mixture of excitement and absolute fear - and in pain with my neck and right shoulder. Yup my back was playing me up - I cannot turn my head to the right, it is too painful. Thankfully a nice hot shower resolved that situation, but this is something I really don't need - together with my friend Wendy and her son Spencer, we are spending the last 5 days walking, and talking, the entire length of the Kennet & Avon canal - all 86 miles of it. We checked the forecast last night - and joy oh joy we were in for a heatwave - not what I really wanted! Walking 86 miles in the heat! But at least there are some parts of the K&A which are nice and shady - and too many stretches which are not.

My mind turned to the possibility that I may not be able to do the entire 86 mile stretch as my mothers words ring in my ears from my telephone conversation with her last night that no-one would mind if I failed. Well, I hate to admit it, failure is not an option here, failure has no place in my vocabulary any more. Instead I thanked God for making canals nice and flat - apart from the infamous Caen Hill lock flight at Devizes - smack in the middle of it all.13 locks if I have counted right - what joker put those there? And at this point I thought to myself "I wonder if anyone will notice me finishing at the bottom on Thursday evening and starting at the top on Friday?". I think Wendy and Spencer would for a start - perhaps I could bribe them. Spencer should be a pushover, Wendy on the other hand......

Yesterday we had a lovely day, with a visit from one of my oldest of friends (no, I don't mean that she is old - we've known each other since 1980). Judith and I talked about anything and everything under the hot hot sun - except Parkinsons. For a while all felt normal - my brain cells were not dying prematurely, I did not have the shake from hell, and more often than not disturbed nights. And then I realised I hadn't taken my lunchtime dose of brightly coloured drugs which were designed to do the job my stupid brain had abdicated responsibility for.

Back to thoughts of the next 5 days. There was to be an excess of positive thinking, as well as downing copious quantities of cider at the end of each long long day. At the mid-point of the walk where we will have put more miles behind us rather than ahead of us we will be joined by the infamous Q from Cure Parkinsons Trust and the venerable Slice of Life aka Jon Stamford. Apart from our first day, we should have company all the way to Reading. 

But one thing is clear - I am going to have to pack light for the next two days, as we will be staying in Bristol tonight, and with Wendys in-laws tomorrow. The next time I see my bed will be Thursday evening. Packing light is not something I have a great deal of experience in - I have plenty of experience though in packing for a month when I am away one night. This time, I really am going to have to leave the kitchen sink at home!

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.

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Added in the wee small hours of 25^th 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.