SO WHY WAS I SO UPSET???

Yesterday, as I hope my Blog showed, I was upset re the death of Alistair Banks, Alistair the Optimist.

Why?

Well there are so many parallels. Ok Alistair was fit and 20 yrs younger than me. But he had the same illness: MND type ALS.
His video interview on Ch 5 shows him one year after diagnosis in a wheel chair. He describes how it all started with his leg . He limped and his foot flapped. (At this point for me, I too wondered what was happening. I walked as if I was drunk, (even at 10:00 am ), and I felt people treated me as such. This was hard to cope with. )
He was a teacher, he was creative.
Alistair was very positive and , I guess , thought that by being positive, he would make his life ,not only , useful, but also may well extend it. Well these are my thoughts , and they may well not reflect his, but somehow I get the feeling that they might well do.
On the Ch5 interview, one year into diagnosis, he states that not only have his legs gone ,but that he recognises other bits are going............... this is exactly my scenario.
My legs are hopeless. My arms and hands cramp frequently and though I still speak with a strong voice, my neck muscles also cramp on occasion. I know they are on the way to becoming weak and eventually unresponsive.

Alistair lived 2 1/2 yrs after diagnosis. 

The MNDA give a 2 yr life expectancy and the NHS give a 3 yr life expectancy....
average, yes, 2 1/2 yrs.

OK, some people do live a little longer and this is where I was confidently heading..... I thought, no go back on that , feel, that if you are positive, you will beat the averages.

BUT, Alistair was positive, he was so positive, and yet he didn't beat the MND averages.......

So that's why I , personally, am upset.
A selfish view , I do recognise.
I don't wish to be selfish and am somewhat, ashamed of my feelings.

Alistair leaves a wife and small children. Really sad and difficult for them.... I do, so, know this.

For me there is not partner to upset and though I have children, and of course they will be upset and sad, but they both have loving partners and will survive I'm sure, as they will be loved, cherished and cared for.

So a somewhat self centred response to a dear, strong mans death. But I thought I should write this, as this diary was always intended to be my honest views of my dealings with this horrid disease.

Please , to try to be compassionate towards me as you read this. I pray you don't judge this as the views of a self centred person, but more the views of someone whose fears have been unveiled and who is frightened............. and sad.

But I shall wake  with my spirit encouraged by you, my readers, my beloved friends, and also by the visits of my family and  grandchildren.

Who can feel sorry for themselves when there are so many potential joys abounding. I will regain my positivity and dream / no ,anticipate that I will beat the averages.

HUG ME, I'VE GOT MND.

THIS COULD HAVE BEEN.... BUT IT IS'NT!

So, I havent written for a few days. Why?
Well that comes under THIS COULD HAVE BEEN........  The Ugly, The Bad, The Good.........

The Ugly: The words I used when I dropped the soap in the shower and when trying to retrieve,(and failing!), I hit my head. The feelings (negative), I had  towards the person who woke me at 8:35 and asked me to make an appointment..... ( I  keep books, ibuprofen cream, a glass of water, even a torch by my bed......... but not my diary!!!). How much I wished I could murder Alexander Graeme Bell after the phone rang and rang yesterday, and practically each call gave me another issue to solve !
The Bad: Tired , so so tired, so I had an afternoon nap....... one phone call and two deliveries later, I gave up. Emails to answer. Photocopies of passport etc to be certified, (For the second time, for the same process!!). The fact that I must have ticked the wrong box, though I thought I hadn't, and will be charged £35 for  the morgage money to be given to me. Yorks Water telling me that I use 50% more water than the average single person! Finding out that my house is  Leasehold not Free hold.... (have never paid rent!) Should have gone out today but too exhausted and dragged down by dross!

The Good: Tescos Fish Pie, yummy. Phone calls from my daughters. Emails from friends.Visits from friends. New jeans in sale (turquoise!yey!!!) £9 !!! Very Yey!!! Speedy call back from Wrigley Claydon re Free/Lease Hold info and copy to be sent of tenancy agreement. (999yr lease from 1909... so cant see a prob!). Friends visiting.

So this could have been another of my rant Blogs... and believe me, I could have bored you rigid with the detail!, but I heard of a death today. A man whom I didn't ever meet, but felt I knew. Thoughts of him cause me a sharp intake of breath and  deep sadness.
and thus now to write.......


BUT..... IT ISN'T
Because today a great Campaigner  for MND awareness, himself suffering with MND , ALS, died. His name was Alistair. Known as Alistair the Optimist. He was a husband, a father a teacher and enjoyed singing. His record was used by the MNDA as a face of MND . I remember so vividly hearing his words at the MND conference in spring last year.

As a tribute to Alistair I shall include two clips from You Tube.

ALISTAIR R.I.P.

HUG ME, I'VE GOT MND.

MND MARCHES ON.....

A bit serious this post. My arms are getting weaker.. Lifting becomes more and more difficult.

I got a call from Overgate Hospice today, offering me a day care place. More when I feel I can write about this. Its another step on the way for me. Quite an emotional step.



I am friends, (via MNDA and Facebook), with Alistair The Optimist.. he has been a public face for MNDA recently. He is (was), a teacher, father and musician. 

Three months ago he went into hosp to have a PEG fitted. 
The PEG is a tube to feed you, directly into your stomach. 
All of us with MND, will eventually end up with one. Well I guess, unless you refuse, but it does seem to me that a feeding tube is a small price to pay for a little more life... and the NHS even  pay for your "food" !!!!!

Earlier this week Alistair wrote, " A year ago, I was strumming my guitar... Now my arms don't move.."

This made me realise the road I'm on, and to feel so sad for us all. 

MND has an inexorable march forwards,, there is no stopping it, there is no way you can tell how quickly  it will move.....  It is hard to live with all this.

Alistair's music can be seen on You Tube. I thought it appropriate to share a track with you all.

Enjoy,.............. but think of all of us with MND...............we are really trying our very best to keep strong and positive.

HUG ME, I'VE GOT MND