VOLUNTEER WEEK AND A BBQ

THIS WEEK STARTS THE WEEK OF THE VOLUNTEER AND WHY WE DO WHAT WE DO FOR ME IT HAS ALWAYS BEEN ABOUT GIVING SOMETHING BACK AND AS PART OF THIS WEEK NEUROSUPPORT WILL BE DOING 2 THINGS THE FIRST IS ON 1ST JUNE IN CHURCH STREET LIVERPOOL OUTSIDE PRIMARK WHERE YOU YOU WILL FIND OUR MERRY BAND OF VOLUNTEERS AND STAFF WHO WILL BE COLLECTING BY SHAKING THAT BUCKET SO IF ANYONE SEES US ON THE STREET PLEASE GIVE GENEROUSLY AND AT THE END OF THE WEEK NEUROSUPPORT SAY THANK YOU TO ALL THE VOLUNTEERS FOR THE HARD WORK AND COMMITMENT OVER THE LAST YEAR AND A THANK YOU FOR THE YEAR AHEAD. WE HAVE HAD A DIFFICULT FEW MONTH'S THIS YEAR AS THE NEUROLIFE PROJECT FINISHED AND 2 MEMBERS OF STAFF HAD TO LEAVE AS THE FUNDING HAD FINISHED. FINDING NEW FUNDING HAS BEEN DIFFICULT AS EVERYONE IS AFTER THE SAME POT OF MONEY WERE WE HAVE TO TIGHTEN OUR BELTS AND I KNOW OF SOME PROJECTS WERE STAFF ARE NOW WORKING LESS HOURS AND PAY OF COURSE TO MAINTAIN THE SERVICE THAT THEY PROVIDE
SO WITH LUCK IF I GET THE TIME I WILL HONEST SOME PICTURES OF OUR LAST WEEK WILL APPEAR ON THE WEBSITE SO HAVE A VISIT AND LEAVE A COMMENT OR 2 SO I AM NOT ON MY OWN CHEERS ALAN 

WHY DO WE HAVE THINGS THAT HAVE TROUBLE TALKING

LAST NIGHT DVD RECORDER AND TV STOPPED TALKING TO EACH OTHER SO WHERE WILL THIS STORY TAKE US AS THEY SAY WATCH THIS SPACE

missing

Why do i have no time any more a question we all must ask ourselves over the years where did that week go and why haven't i been able to put our own Neuro News our very own newsletter
Well different things have happened the man fell off the roof fixing a plant that was growing through the roof luckily it was a small fall and no injuries apart from a very old gutter and that was the cause of a few days lost in a world of DIY not my forte i must admit i was just the gofer to see if we could get the old one a mixture of cast iron and aluminium, but in plastic my trip around Liverpool and surrounding areas and varying yards and places that i did not know existed i have passed them by these mini industrial estates on the outskirts where you always pass until someone falls off the roof and the words as you take in the 5 ft sample" have you tried there "or most definitely not here and off you go again with your bit of gutter for all the world to see as it's your passenger for what seems the whole day but in fact was only around 4 hours and around 2 gallon of now very expensive petrol so the quick and cheap job did turn in to a long and expensive job with repairs as the only answer to the problem
Another missing was a quick break only for a night down in Shropshire the car was the start of my missing when it wouldn't start around 70 miles from home and as you have guessed a quick fix was about but at a price not the quick and cheap break i thought but life can be like that sometimes

All the holidays have not helped well who needs them all of us of course and how good was the timing of the wedding
so with luck i will try and bring you the ramblings of a volunteer

Alan

MARCH/APRIL 2011 ISSUE 19

BRAIN AWARENESS WEEK 14TH -18TH MARCH 2011

What a strange world we live in, (or is it just me), when you look at the picture of the brain, do you ever wonder how we came to be here?
Brain awareness week (BAW) will have passed by the time you read this newsletter, but I just wanted to remind us all of how we all ended up here, here being Neurosupport (if you came in by mistake for the coach to Birmingham and have stayed, thank you, although auntie Betty might wonder where you are) and The Walton Centre. BAW is held the same time of year that Sally was discharged from hospital all those (15) years ago, you may recall my story of a carer and why daffodils mean so much, this time of year always makes us remember. Early in March, as I drove around (not walking as I should) Sefton Park to look at this years display (they were nearly in bloom), I wondered why I never seem to have the time of late enjoy such simple pleasures, as a walk around the park. A classic example is I am writing this in a café, as Sally and a friend buy up Marks& Spencer, well it is sale time and as the New Year sales for Sally came and went while she lay in bed not watching the world go by and missing the sales, this has at least brought us out. I realise I will have to learn to say no when someone says “there is a meeting”, or “somewhere to go” to raise awareness etc. for Neurosupport and the Walton Centre.
My visit on 10th March to our Patient Information Desk did not go well. Our temporary or should I say new desk, seems to be as on the plan, but it may be changed, so we are not sure where it will end up. I only stayed an hour; as they say watch this space!! At the moment membership of the Walton Centre Foundation Trust seems high on the agenda with a need to sign up new members, so putting on my governor’s hat, if there are any volunteers who have not yet signed up, can I urge you and any family members (as long as they are over 16 years of age) to do so, no fee involved, but your signature is needed (my governor’s hat is now off).
So back to raising awareness and how we came to be here, (no! not the bus station) for some of us it means we are not the same as when we were born, that sudden injury, infection or something that defies even the doctors has led us to be involved with the neurological world. However some of us have been born into that world with a condition that is visible and/or invisible. I was talking to someone recently who has

cerebral palsy, their condition is very visible and although they are part of the bigger community and things have gotten better as regards access and people’s understanding, they still feel as though they are a community on their own, as some people still lack understanding. please discuss why this is so! Alan Clark.

TESCO COLLECTION ON TUESDAY 15TH MARCH

I am the one behind the camera (doing my David Bailey act). I was joined by Ron, Carly, Jackie, Verity and Janet who gave up their time to collect and shake a bucket at Tesco in Allerton. With the help of Christina, Tommy and Keith on the other days, we managed to raise just short of £1000. So a big thank you to everyone who shook a bucket for Neurosupport, and to those who helped behind the scenes. A Thank you too, to the generous people who gave their hard earned cash, to Tesco and their staff. Alan Clark.


Please note we have 2 other events coming up when you can help shake that bucket, a street collection in June Carer’s week and of course the bike event on Saturday 3rd September so let Carolyn know if you can make either or both of those events.

DO YOU WANT TO SEE A GOOD SHOW A REDUCED RATES??

SHOWS COMING UP AT THE EMPIRE

Matthew Bourne’s Ballet Cinderella on 26th April 7.30pm tickets £11.50


Swan Lake on Ice on Wednesday, 4th May tickets £9.00 (very highly recommended)


Evita on Monday, 20th June tickets £13.75.


Casually Blonde Show Monday, 11th July tickets £19.75 (MUST BOOK YOUR PLACE BY 6th MAY)


We Will Rock You (Queen musical) Wednesday 7th Sept 7.30pm tickets £20 (instead of £29.50)

Put a note in library pigeonhole if you are interested or I am in the library Monday and Wednesday or via Carolyn. Janet Ireland







Fate

A young person said to me today
Can you come and show me the way
“Where are you going” I said with a smile
“I'm going on a trip I am on my last mile”
“Where is this place you are going in a hurry”
“It's a place in town I've no time to worry
I have got my hat to wear and I'll soon be there”
So off we go to the place where people really care
I took her hand as she could not see
And found she was going to the same place as me
“It's Brain Awareness week at Neurosupport
Wait till they see what I have bought”
Out of the bag she took her hat
“Does it suit me or does it look a bit tat?
It was the last one in the shop the end of a line”
“I said no you don't, it suits you just fine”
A cup of tea, some cake and a raffle
If you could see it would be half the battle
Our paths had crossed was it just fate?
As I ate my food off a paper plate
I looked around but she had gone
I wondered where she had come from
But I had this cold feeling, shivers down my spine
On a table was a note which said” I've run out of time”
Then a white feather floated down from the ceiling
Why had she been here and what was the meaning?

G.W.Milward
March 2011

************************

ANY TESCO OR SAINSBURY VOUCHERS STILL STUCK IN YOUR PURSE OR POCKET WITH NOWHERE TO GO LEAVE THEM FOR JANET. SHE WILL PUT THEM TO GOOD USE WITH THE BROWNIES GROUP

A HEAD MATTERS TEA PARTY - 16th MARCH 2011
The ‘Head Matters’ tea party was held for Brain awareness week and as a und raiser in aid of the Young Persons Group, based at Neurosupport. At this moment of writing, the funding for the group is no more, although funding applications are on-going. Familiar faces as well as members of the public turned up in support, along with most of the young persons group. Alas there were no hats/bonnets! On offer were a selection of home-made cakes, tea and coffee. Highly recommended by Sally and Alan was a delicious cream cake made by Pat’s (see back page) daughter-in-law. It was not the place to be if you were on a diet. There was a raffle, with the prizes being donated by staff & relatives of the Young Persons Group. Maybe next year we can all get in the party mood by wearing silly hats (staff as well) to show that your head does matter, that hats can protect your head from head injury. What about getting a local school involved making hats and then invite them to the tea party. Food for thought indeed!!




A VOLUNTEER’S STORY— PAT FOWLER

I work as volunteer at Neurosupport and have lived with epilepsy from when I was a child. I have good times and bad. The type of epilepsy I have is called Parsial, which means I have
unaware fits as well those known as petit mal. At this present moment I am having unaware fits, these started over a year ago. Dr Weismann of The Walton centre is helping me with my condition by trying new drugs, in order to control them. Over the years I have been to many hospitals including, a long time ago, The David Lewis centre in Knutsford, where they helped me sort out my tablets.
I have worked, in the past, as a telex operator, at Stork and for Park Hampers, but for the last 20 years I have been unable to work because of my epilepsy. When I first spoke to Neurosupport and Merseyside Regional Epilepsy Association (MREA) they were able to help me in different ways. For the last 6 years I have worked as a volunteer on reception, this involves, amongst other things, answering the phone. I enjoy working at Neurosupport and love every minute I am on duty. The staff here are great, they respect all the volunteers and the work that we do. I love seeing everyone at our meetings and our days out. I would like to thank everyone over the years that have helped me.
I have a great family, my son, daughter-in-law and my 2 lovely grand-children help me a lot with my condition. I will not let epilepsy rule my life, I take each day as it comes, whether I have a fit or I don’t.
Pat Fowler



NEUROSUPPORT ‘RACE NIGHT’ - FRIDAY, 20TH MAY 2011
THE BROADWAY CLUB, BROAD LANE, NORRIS GREEN L11 1AJ

A RACE (WITHOUT YOUR SHORTS AND RUNNING SHOES), YOU JUST SIT BACK, RELAX AND WATCH THE GEE GEES. COME ALONG WITH YOUR FAMILY AND FRIENDS. TICKETS ARE SELLING FAST, SO DON’T MISS OUT!!

CONTACT CAROLYN FOR TICKETS (£7.00)

17 MILES ON 17TH MARCH 2011 FROM SOUTHPORT HOSPITAL TO THE WALTON CENTRE THE START AND FINISH OF AN AMAZING JOURNEY.

The day for me and Joe started with an interview on Radio Merseyside at around 7.25am just before the news, me getting in my car in South Liverpool to meet up with Joe and his friends and Joe himself talking about the walk and his brain tumour on the radio from his home in Southport.
I arrived at Southport Hospital with suit carrier in my car with time to have tea and the magic bacon butties to revive me as my day had started at 5.00am, so at around 8.30am it was just what I needed for the day ahead. At around 9.00am, Joe and his son Matthew arrived along with other walkers and by 9.30am we were all assembled for the start of the walk in good spirits as you can see from the photo below.

After an official photo for Joe’s local paper “Champion” they set off for the 17 miles ahead, however I cheated and set off in my car, passing them on the way to the A 565 Liverpool road before turning off to meet up with the Trans Pennine trail then onto Lydiate where they then followed the Leeds-Liverpool canal as far as Aintree, before arriving at the Walton Centre at around 5.00pm, a journey of just over 16 miles as the pedometer told us on the day, so not quite 17 but near enough for me. On my way to the Walton centre from Southport, I called in for a cup of tea and a few laughs at Gordon and Brenda Milward’s house, 2 of the speakers for later in the day, a patient and a carer, as well as them also looking after the Parkinson’s information table, it came as a welcome relief for what would for me be a busy afternoon.
The reason for the suit carrier will now become clear. I am a Merseyside governor for the Walton Centre, where I also volunteer and along with asking Joe to do this walk in what is Brain Awareness Week I had also arranged for what we called Brain Awareness day, a chance for members of the public and members to get information about the Trust and talk to fellow governors, as well as get information from around 25 neurological charities on the day, which started at around 2.00pm and finished at 5.00pm and that finishing time is important because along with the charities in the lecture theatre we had a doctor giving a presentation about epilepsy, a physiotherapist talking about her work and for me the highlight, patients and carers telling their stories of how they live from day to day with their condition.
I know personally all of the 5 people who talked about themselves and I was the link to present them to members of the public and as I sat and listened to very moving stories of their lives, in another part of the site Joe and his friends had at last made the nearly 17 mile journey, they had arrived at the entrance to the Walton Centre. Time had been running against me meeting up at the end as throughout the afternoon I had phoned Joe and the original time of 3.30pm had become a distant memory and the presentations were also running late, I could not be in 2 places at once with my trusty camera. Fortunately we did have as they say a plan B in the shape of my link to the Walton Centre, Karen Lloyd and Michelle Barry who with the Trust’s camera have supplied me with the final photo.

I would like to thank everyone who has been involved in the walk and brain awareness day, whether it was in raising money through sponsorship, which now stands at around £550 with more money to be collected for Neurosupport and The Brain Tumour Support Group. Everyone from the Walton Centre who helped with the organisation and members of the public who supported the event, charities who turned up as well as people who supported Joe by sponsoring him on his walk, the whole purpose of both the walk and the Brain Awareness Day was to raise awareness to people who maybe are not aware of The Walton Centre and Neurosupport and neurological conditions and how they can affect peoples’ lives and their families.
If you would like any more information about becoming a member please contact
Tel:0800 783 3829 the Walton Centre NHS Foundation Trust.
For more information about Neurosupport and The Brain Tumour Support Group or if you still want to donate http://www.justgiving.com/Joe-Paton
Tel: 0151 298 2999
Alan Clark Merseyside governor contact details
alan.clark200@hotmail.com or contact Neurosupport

THE STORY CONTINUED

As i mentioned just before valentines day this week that my computer and the printer had fallen out was it a communication problem they would not speak to each other well at long last that has been solved by unplugging leads that did not work what was i to do should i uninstall and then start again that was my only option open to me in the end and after lots of pressing and hot words they finally started speaking again a bit like real life i think

Hope you all enjoyed the meeting sorry i had to another meeting to go to

VOLUNTEERS MEETING

AS ALWAYS THEIR IS SOMETHING FORGOTTEN AS SOON AS YOU PRESS THAT BUTTON THAT TURNS MY WORDS INTO THE BLOG OUR NEXT MEETING TOMORROW WEDNESDAY 9TH FEBRUARY STARTING AT 1.30 WITH LUNCH BEFORE AT 1.00PM LOTS ON THE AGENDA SO SSEE YOU THERE