Daft decisions .......

It’s p*****g with rain, we are flooding

The banks of some rivers have burst

Many are wading but there’s a hosepipe ban

You couldn’t have made this up first

Just one ridiculous example

Of a country subject to ridicule

Daft decisions which affect you and I

Like those ‘elf ‘n safety rules

What is it about politicians?

That when they become an MP

They completely take leave of their senses

Their daft laws completely baffle me

I’m trying to work out a reason

Why more 'sensible' people don’t apply

To become a Member of Parliament

If you know the answer, TELL ME, WHY?

Letter I sent to my MP

The letter below is the one I just sent to my MP, yesterday. Am awaiting a reply :-

 Dear .....


The letter below is one prepared by the MNDA. However, I would like to add to this letter by campaigning, not just for there to be a National Neurological Network for quicker diagnosis and monitoring of patients with neurological conditions with a particular emphasis on MND, but, also for a nationally rationalised OT and wheelchair service.

Whilst there are well publicised complaints about a 'postcode lottery' for lifesaving cancer drugs, there is little or no publicity about a similar situation with regards to OT and wheelchairs. There appears to be  a 'blanket' approach with regards to inclusion criteria for a wheelchair without taking into account the, often, rapid progression of MND. Too often, patients are left without the appropriate mobility aid either because they are deemed ineligible (some criteria are frankly ridiculous) or are given  a wheelchair which is completely inadequate for the person's requirements. At this point I'd like to add that, for me, my local wheelchair service has been extremely helpful; but many services are not. This is either due to ignorance or an immovable desire to stick rigidly to guidelines, often misinterpreting them. Both of these reasons are inexcusable.

My real 'bugbear' however is with OT services, particularly those in Croydon.

The year before last I attended a branch meeting of my local MNDA, at which there were representatives of the four 'services involved with MND; there was an OT, Physio, dietician and speech therapist. Each told us what type of information and help they provided for those persons diagnosed with MND. What the OT  said made my blood boil! She boasted that when someone is diagnosed with MND an OT would visit and provide them with information as to what could be provided and the best things for them to acquire with specific reference to lifts. Why was I so angry? In 2006 I fractured my femur in a fall in my kitchen. Already struggling with the stairs my husband and I were considering a stairlift. So, the OT comes and advises, do they? In our particular case the OTs 'information' included telling us that due to the fact that we had both worked our entire lives AND raised two beautiful, responsible, tax-paying,daughters, we didn't qualify for funding; fair enough. We were also given the name of a local company which installed stairlifts. AT NO POINT were we advised that this stairlift would, due to my MND progression, become obsolete as I would no longer be able to get on or off of it unaided and would eventually be too weak in the torso to support myself on it. A through floor lift was never mentioned by the OT so, in our ignorance, we had a stairlift installed at a cost of £7,000.

In 2010, my MND had progressed to the point where we were seriously considering our next step. This entailed the possibility of having a wetroom installed downstairs which would take up a whole room and change the configuration of our house in a negative way. By this time I had a different OT who, herself, has tried her best within the constraints of the OT rulebook. She told us that we should seriously consider a through floor lift if I wanted to continue to sleep upstairs, and, perhaps we should have considered it before. Of course it was a great idea because, even though it meant an intrusion into our dining room and a hole in the ceiling, it was easily reversed and meant that I could still maintain an existence upstairs. I could also continue to utilise our already installed £12,000 upstairs wetroom. The lift was, however, another £11,000 on top of the wasted £7,000.

Perhaps you can begin to see why I was so angry. Being disabled is an extremely expensive business. It is particularly galling when it is caused by something which is not my fault. So, not only do I have to accept the responsibility of paying for any 'major' equipment because of our hard work and consequent savings whilst the obese shirkers receive every available innovative piece of equipment, we also  have to bear the brunt of incompetent advice and continue to haemorrage money in the name of 'provision for all'!

I could bitch all day about unfairness because the lift issue is merely one in a series of negative experiences with the OT services. However, my e mail is really in aid of getting OT services to have proper information packs for neurological illnesses so that we can act from a position of knowledge and not ignorance; preventing us from wasting our hard earned savings which will be needed by the spouse and possibly children left behind.

Of course the ideal would be to have all OT services providing the same degree of 'service' to all. However I cannot see that happening in my lifetime. So, my first request is for a National Neurological Information Pack.

I have a very good friend, Liam  who has campaigned tirelessly for the rights of MND sufferers and already achieved a great deal. He has negotiated a meeting with himself, his MP , wheelchair services, OT and a representative of the MNDA to discuss wheelchair and associated issues. I would like, if possible, to do the same in Croydon.

In order to try to help other MND sufferers I have painstakingly constructed a website which I am trying to publicise with  (hopefully) lots of valuable information as to how to cope with this horrific disease.

http://www.mndlaidbare.co.uk/

Perhaps you could take a few moments to peruse it. You will see that I am serious in my attempt to help ALL MND sufferers, particularly those not astute enough to help themselves. Maybe you could also arrange for me to visit you in your 'surgery'.

Best Wishes

Pauline Hardy

FORGET ME NOT

It didn’t just arrive, it crept up on me

Just like that dreaded thing, ‘obesity’

But, unlike some things that one can prevent

MND   is there inside us and from hell is sent

A quirk of gene from when inside the womb

Means an early descent into a world of doom

But, before the unwelcome and untimely  demise

MND steals your life in a way you can’t surmise

Tripping or dropping are some signs that you see

Or drunken-like speech to cause much hilarity

But these strange symptoms are no laughing matter

Your hopes and dreams of old age are quickly shattered

In one fell swoop when you hear those words

It’s Motor Neurone disease. You say, ”Don’t be absurd.

Surely, something else is causing me to fall”?

But when searching the net you hit a brick wall

However much you try to avoid the diagnosis

It’s there, in front of you, with a poor prognosis

At first you are upbeat with a heart full of hope

It’s the only way that you can begin to cope

But, as things progress and your body fails

It’s hard to keep positive and let optimism prevail

Your intended sense of purpose is gradually eroded

You realise that your hopeful future has exploded

Becoming a brain in a body, just a helpless blob

No longer capable of holding down a job

Some of us try hard to make others aware

That MND sufferers have a great deal to bear

Our plight is nowhere near sufficiently known

Though our numbers are many, awareness hasn’t grown  

We are suffering a horrible death and we fear

With a cure far from imminent it will take many years

In the meantime, our needs are not well understood

We don’t get the requirements that we know we should

Individual needs are not well provided for

Though we do get some help we need a great deal more

We’re asking all those healthcare personnel

Who deal with MND, please be sure to treat us well

We can’t wait for months on end for a shower chair

Or to have a 90 page assessment for ‘Continuing Care’

Our life is far too short to wait for ‘help’ for so long

Whilst still trying to remain mentally strong

Please try to understand the problems we’ve got

Help us when we’re here and when we’re gone –

FORGET-ME-NOT!

MY SHOPPING OUTING

I’ve just been to Tk Maxx, my hubby, two daughters and me

I found it quite depressing now that I’m struggling with my MND

Whilst my lovely girls are searching for the latest fashions to wear

I am desperately trying to find warm tracksuit bottoms, how ‘square’!

I once was the height of fashion; into tight-fitting jeans I would squeeze

Now I need clothes that a carer can get on and off with some ease

My footwear is most unattractive to encompass  swollen purple feet

‘Old-people’ boots with a Velcro ‘do-up’, so ugly that I want to weep

I’m freezing ninety five percent of the time, flimsy tops are out of the question

But, if anyone out there can recommend something I am open to any suggestion

My life as I knew it is over, though I’m trying hard to remain upbeat

This f*****g  awful disease makes it terribly hard not to admit defeat

Hey, ho...............