LIFE GOES ON....................

It's Saturday, not a lot has changed; well, actually, nothing has changed. Today I started taking vitamin D3 just in case I get ricketts! I know, I'm barking. However, I spend so much time indoors that I rarely see the cold light of day; gives me something to do! I am also taking zinc and alpha lipoic acid. The latter two for my 'Burning Mouth Syndrome'; yep, not only do I have to contend with MND and all the discomfort and problems that this brings, but I have a problem in my mouth which, apparently, is incurable and may...........or may not ever go away. The symptoms are such that it feels as if I have burnt my mouth and  it never changes. Some days are slightly better than others; but, mostly it is very uncomfortable. The only way to relieve the symptoms, temporarily, is to drink, eat or chew gum.

This problem began last year when a crown fell off my broken back tooth and the jagged remains irritated my tongue. The problem persisted despite having the tooth ground down and then developed into BMS. It is debilitating and depressing to think that I may have it till the day I die......

On the bright side, yesterday I went to the cinema with my older daughter, Victoria and my husband. We went to see Black Swan; it's a brilliant film. Natalie Portman is amazing in it and thoroughly deserved the Golden Globe award and Oscar nomination!

We were going to go shopping on the previous day but the battery on my car was flat and attempts at charging failed as the charger was no good. To add insult to injury, my husband (Leonard)'s car also had a flat battery; so he couldn't go out either! We had to call the RAC and get them to 'jump start' the car. (I originally wrote 'cat' here till I noticed and corrected it just in time; however, the mind boggles!!) Seems ok at the moment.

We still have an ongoing problem with the car. Apart from the flat battery, we still have a fuel feed problem. It seems that, when the fuel tank gets down to about a quarter there is some sort of problem which, according to the manufacturer has been caused by the conversion when the tank was interfered with. Difficult, since the company which did the conversion is in administration. Still, as long as we keep the tank above a quarter it may be ok (fingers crossed).

On the positive front, it is my older daughter's birthday next week - 28!! She probably thinks that her life is almost over. Never mind. She is a very successful, lovely young woman and I am very proud of her. She runs her own Cheerleading company which she started two years ago; coaching in schools initially, she now coaches six teams under her own banner many of which are successful in National Competition. She has now been asked to choreograph and advise for a film being made about cheerleading this year. This is the daughter getting married at Christmas; a very busy bee.

The other positive point is that my younger daughter, Alex is coming home. She has been in France and Germany since 4th January and, before Christmas, in Sweden for five weeks.skiing with the army biathlon team. I miss her loads; speaking on the phone is not the same. She is a lieutenant in the Royal Engineers and I am, also, extemely proud of her. I am very lucky to have two such lovely daughters.

On Friday we are all getting together at mine for dinner; daughters, fiance and boyfriend. Lovely. I'll get Leonard to make a cake! I have worked out that, if I type out a recipe explicitly, with all the instructions clearly laid out he can cook a good dish. One of these is a banana cake. I'll tweak it to a chocolate one and let you know how we get on!

POEM PUBLISHED (EDITED!) IN 'THUMB PRINT' MND MAGAZINE

Hi Y'all
I composed this poem and read it at a symposium at Kings last May (2010). It hopefully tells people what it is like for MND sufferers in general. I think that my main purpose is to try to get across to everyone who is not a sufferer that WE ARE HERE. Because so many (5 each day) die from this disease so quickly we are, more or less, ignored. Why should a cancer sufferer or an MS sufferer be more in the public eye? Though, often, not painful our suffering is extreme; we are isolated and ignored in the main. Let us MND sufferers make ourselves heard (use e mail to shout, use blogs, use any medium you can).
If you are not an MND sufferer but would like to join the cause, you're more than welcome! We need all the help we can get.

HEY YOU!

Hey you, I’m in here, this is me,

Inside this broken body, can’t you see?

I have a perfectly functioning brain,

And my mental faculties, remain;

It’s just that my extremeties have failed

My moving parts, they are derailed.

I have difficulty to eat , wash or dress,

My toileting abilities, they are a mess.

But I can converse with the best of them,

Hold my own with the brightest of women.

I used to work from home to earn a crust;

With what we’re given by the government, it was a must.

It also kept me from going slowly insane

As I sit here each day, and my energies drain.

Now, I no longer work as it is too hard

I am making it my job to be an MND 'bard'

I would like to help myself and those less able,

By bringing governing bodies to the table.

Explain that we’re the forgotten many;

Recognition?  No, we don’t really have any.

“Do you have MS”?, people ask, no, not me,

I am a person with bloody MND!

Why is the public so very unaware

Of a disease that kills so many out there?

We need to shout out, “Hey you!

Isn’t there something you can do

To help a worthy cause and try

To eliminate this disease”? We all die.

There’s no treatment, no cure, no end;

When will I die? It just depends..

Only time will tell when you will go,

For we have no ability to fight this foe

That robs us of our life as we knew it;

Pop out to the shops? We can’t just do it.

We slowly lose each body movement,

Become a beached whale to a great extent.

Legs, arms, neck, speech, are just a few

Of the things taken for granted by you.

How would you cope in my position?

You, “Joe Public”, my supporting physicians?

Perhaps, for a day you could all try

To live the same life that I

Live each day, going slowly down hill.

Not for me, just popping a pill

To cure my disease; but I still pray,

That a cure will be found; maybe one day.

Come on, join us in the fight to get more help; to make us more comfortable, gives us SOME sort of quality of life while we try to 'live' and die with this, a most awful disease!!!!!!!!!!!!!

EQUIPMENT... WHO NEEDS IT? UNFORTUNATELY, WE DO!!!!

I try my utmost to be upbeat, I try hard not to moan

To post a blog that’s positive and not full up with groans

But I must admit, it’s difficult, sometimes I want to scream

I wish my life was as simple as it appears when in my dreams

Why, oh why, am I thwarted every which way I go?

Everything I touch seems to fill my life with woe

My car for which I waited for, almost, a year

Has never been quite right and now never will, I fear

The company providing it have into administration gone

And that is by no means all of the problems going on

Yesterday I received in the post a letter from a bank

Telling me it was they who owned my car, it couldn’t be more frank

What? Pray tell me, what on earth is going on

It seems the MD performed many things that were wrong

I paid to have a lift going through the floor

Within one day it crashed and didn’t function any more

The engineers came and said they would repair

It lasted only a short time, I really do despair

Wheelchairs and equipment, whatever you may need

Technology, mobility, I pray you will succeed

Just be careful what you buy, check with all your might

Make sure that the supplier has really got it right

Learn from my experience, make sure there’s nothing wrong

Or you will end up cursing the workmen when they’re gone

THE WEDDING! NO....... NOT THAT WEDDING!!

The wedding will take place at  Christmas time this year
My daughter has decreed it will add to Christmas cheer
A barn adorned with Christmas fairy lights
Garlands and a tree, it will be a beautiful sight
We're praying it will snow, but just a flake or two
Not enough to stop guests arriving for 'The do'!
Talk of my daughter's wedding fills much of the time
It's handy, as it gives me fodder for my rhyme
I'm preparing my reading to add to all the fun
Let's hope that it is good enough to read to everyone
My daughter, she is planning with amazing precision

Dressed in her bridal gown she will present a vision
There are eleven months for us to organise
The wedding of the year before our very eyes

RIGHT, NOW FOR HUMOUR

During 2010 we had the Football World Cup...........erhum........the less said about it the better, especially as we have now just won The Ashes at cricket!
However, at the time, I presented a humorous speech about it at my Speakers Club.
Below, is my bent on said World cup and the recent award of the 2018 world cup to Russia? and 2022 to Qatar? who?


We didn't do too well, but, who's fault is that?

ODE TO THE WORLD CUP 

“We woz robbed”, I hear you cry,

And I’m sure you wonder why

This fanatical “footballing” nation,

With grandiose ideas above their station

Could only manage the last 16

At the world cup; no longer to be seen.

We’ve, literally, been kicked out

By Germany, it was an absolute rout.

Even with that disallowed goal,

Surely not a single soul

Would disagree that we were, bad.

Never mind, don’t be sad;

There are 4 years for the FA to weave

Another tangled web to deceive

Us into believing that our team is great;

I bet for the next cup you can’t wait!

Maybe it’s time to end the dream,

Stop “bigging” up our football team;

To admit that we are... Well, crap

And though some have talent there isn’t a scrap

Of team spirit amongst those men,

A goalkeeper and players, numbered 10......

Hey ho!

We didn't get the World Cup, do I care?

WE WOZ ROBBED!

We woz robbed, again, that familiar whine

Our bidding techniques did not shine

FIFA  and a, supposed,  corrupt team

Together managed to shatter, ‘The Dream’

Of many folk throughout the land

They’ll have their hankies close at hand

I, for one, will shed but one tear

It is no loss for me, but,  I fear

There will be backlashes and blame

For  those involved, they will feel shame

The whole system stinks, it is a joke

We should just distance ourselves from those folk

Who determine the next world cup hosts

They, obviously narrowed the goalposts

And, what about giving one to Qatar?

Does anyone in football even know who they are!

If you ask me we are well rid

How much hype was involved with that bid?

All that money used , what a waste

It really does leave a nasty taste

We’re well rid of the whole thing,

To me, it seems it was just a ‘sting’

I don’t think that it was Panorama

That has caused this whole drama

They just exposed a hidden crime

We had a lucky escape, this time

Get over it!!

MY DISEASE

I have a disease, it’s an annoying thing

It doesn’t hurt, or ache or sting

It just makes me weak, my walking’s crap

So I sit in my wheelchair, a cat on my lap

I can still speak, I’ll give you that

I can talk on the phone, have a chat

But that’s about all I can do

I even struggle going to the loo

This disease catches you unawares

Before too long you can’t climb the stairs

I can use my computer, still, that’s a bonus

But, getting dressed is an added onus

My husband dries and dresses me

I can, just about, shower and have a wee

Eating’s a bugger, it’s so messy

I get covered in food, clothes can’t be dressy

My neck is weak, head inclined to flop

A headrest supports me so my head won’t drop

But, being the loud, gobby lass, that I am

I make myself heard, don’t give a damn

Tell the authorities what I think

Make a noise, create a stink

Who else will help us to be heard

Getting help? Don’t you be so absurd!

MNDers, We’re the forgotten few

We all die off, disappear from view

It’s easier to ignore our plight

But we won’t give up without a fight

If you see this , remember in the main

It’s our bodies that die, not our brain

Don’t speak to the carer if we have no voice

We can hear but not respond, we have no choice

I’m doing my best to speak for those others

Who can’t speak for themselves as no-one else bothers

If you can help in any way

Contact the MNDA

We haven’t got a cure as yet

But there’ll be one someday, on that you can bet

It will be too late for most of us

But let’s not be selfish, make a fuss

Even if you could just try to understand

What MND does to woman and man

That would be a brilliant beginning

To appreciate a disease that has no ending...

Just death!

MOAN,MOAN....B****Y MOAN!!

Well, so much for 2011 being better than the previous year!!! It started with a damp squibb; not that I actually stayed up to watch any fireworks (yes, I know, miserable git). Eventually, someone from the lift company came to sort out our newly-installed lift which had not worked properly since the day after it was installed. It needed a new ram??? (apparently, the hydraulic driving mechanism which was out of sync- so they say). So, that is now working. The fact that I was stuck upstairs in my wheelchair on Christmas Day is neither here nor there! I did, eventuially, get down but only just and then had to drive my outside wheelchair round all day which is extremely awkward (see later paragraph as to outcome!!!!!!!!) Still can't get into it in my indoor chair without being pushed as the mid wheel leaves the ground. Awaiting new tyres which MAY solve the problem. Independence in that respect, pending.
 My adapted car was supposed to be picked up by the adaptaion company this Tuesday (11th)to sort out our suspension problem; a problem which has existed since we received the car in Sepetember. They should have phoned Monday to confirm. No phone call. so, Leonard phoned and got a strange answerphone message, "Due to staff shortages there is no-one in the office today". Odd, to say the least. Phoned again Tuesday am; same message. So, he phoned someone in the workshop and received the bombshell; the company had gone into administration!!!! What???? For goodness sake. We are not sure if it will ever get sorted.
On Saturday, last, the legrests broke off my 'outdoor' wheelchair! I suppose it is partly my fault as I kept bumping into 'things', such as doorways, with it and bashing the legrests. However, in my defence, I can't actually see them and they are quite widely spaced and... doorways are always too narrow. One legrest was already dodgy and held on with tape. Then I bumped into the door of DfS furniture store and they both fell off. Deary me.
Went to the cinema yesterday to see 'The King's Speech'; brilliant film. But, with no legrests my knees and hamstrings became extremely sore and it somewhat spoilt the experience. Now trying to get replacements. No guessing as to how long that will take.
I am supposed to be getting a wheelchair from my local wheelchaiur service but, having agreed to take one which they had purchased for someone else but, which they couldn't have due to weight problems and tie down in their car, I am still waiting almost three months later. Funding, staffing, lack of organisation; all of these add to the problem. I MAY get it next week, who knows?
On the brightside, we are off to see the wedding venue for my elder daughter, Victoria, on Sunday. She is getting married next Christmas. Then, off to lunch with her, fiance and future parents-in-law. Should be nice. Though, as usual, I am already in panic mode about toilets and whether they will be properly accessible in my wheelchair!!
Am really looking forward to posting a positive-sounding blog........don't hold your breath, though!

CHRISTMAS IS OVER!

Christmas?  It was great fun, my family were all here,

We celebrated it in style just like we do each year.

I made lists aplenty of things that we would need,

Over  four days of Christmas we had many mouths to feed.

I ordered most provisions with a quick click of the mouse,

They were delivered, at various times, by, ‘very nice men’, to the house.

I directed all proceedings from the comfort of my wheelchair,

Things seemed to run quite smoothly; lucky I was there!

On Christmas Eve the turkey it was stuffed and trussed,

The table laid for Christmas lunch with very little fuss.

Presents were all wrapped by my husband and children, for me,

And, when ready, were put by the dozen under the Christmas tree.

Proceedings were run with military style, nothing overlooked,

The turkey put into the oven to ensure that, on time, it was cooked.

All in all it went so smoothly no-one would ever guess,

That the overseer of Christmas was, physically, a mess.

It just goes to show that, although we all suffer from this ‘shitty’ disease,

There’s really no need to allow it to bring us to our knees. (metaphorically, of course!)

I’m  lucky to have two daughters who’ve grown to be just like their mum,

Bossy, opinionated, but organised, and never leave a job undone!

By Pauline Hardy