Neuro Newsletters Part 1

PICTUES FROM THE PARTY DEC 7TH 2011

2012-01-03T08:37:00.000Z

NEURO NEWS— NEWSLETTER DECEMBER/JANUARY 2011-2012 ISSUE 23

2012-01-03T08:24:00.000Z

Looking back to look forward 2011/2012

As an innovative and unique charity, Neurosupport can look forward to many years ahead, but before we can look forward we have to look back.

In 2012, we look to celebrate our 20th Anniversary of being a charity, though if you look at the pictures in the meeting room, it will say 1993. But the charity itself was formed in 1992. We had to be a charity, in order to be eligible for the £1,000,000.00 (a million pounds) from Glaxo Pharmaceuticals.

I am sure you can recall, how at our inductions, with our first faltering steps in becoming a volunteer. Maureen Kelly telling us how the centre came to be, the vision of Dr Ian Williams, (the then Director of the Walton Centre) and his far-sighted idea of a neurological centre and to where we are now.

So where are we now? you might ask and for the last few weeks, (make that months), I have been wondering the same. The past 12 months has seen the centre at a crossroads. At the annual review, held on 12th October, you didn’t have to be an accountant, when looking at the back page of the review, to see that over the past 2 years our expenditure has exceeded our income by £125,000. The accounts for this year are also looking to be in the red, rather than the black. So in order to balance the centre’s books in this very uneconomic climate, changes have had to made. These changes started with the trustees asking for a review of Neurosupport. The aims and objectives etc; of the review, were highlighted in an earlier newsletter. With Maureen speaking of the organisational review in more depth at our last volunteers meeting on 11th November. The details of which were in the minutes that we received that day.

Early on in 2011 saw Neurolife coming to an end, with some of the courses moving out into the community, but it also meant 2 members of staff losing their job and now we are to see the loss of more staff. But, phoenix like there are new posts rising from the ashes, one of these new jobs will be a full time receptionist.

As this year draws to a close and we prepare to celebrate Christmas and the coming New Year, Gordon, in poem form, puts his unique take on 2011(see back

page). Alan Clark.

So where do we go in this coming year?

What does this all mean to us the volunteers? Especially as one of the new jobs will be a full time receptionist? Certainly a year of change is ahead as we tighten our belts financially speaking and maybe literally after all that Christmas pudding, (I wonder who first set puddings on fire, thinking “that’s a good idea”).

Some of our services will have to be looked at differently, marketing, room hire and fundraising will feature heavily in 2012, although Chris has made great inroads with the room hire, Alec and Carolyn have been busy already fundraising, with our next Bike Ride due to take place on Sunday 19 August 2012 already in the calendar. The final total from this years’ ride being over £3,000, so a big thank you again to Alec, Carolyn, Chris and ourselves of course for helping.

Other events planned for next year are “A Head Matters Tea Party” to be held on Tuesday, 13th March, during Brain Awareness Week, with Joe Paton walking on that day from The Walton Centre to Neurosupport, arriving in time for tea and cakes at the party. This walk is to help raise funds for ‘The Brain Tumour Support Group’ and ‘Neurosupport’. If you would like to support the walk go online to: http://www.justgiving.com/JoePaton2 or Text: HMWA12 £5, to 70070. To join in the walk, you can get sponsorship forms from Carolyn Garlick at Neurosupport (0151 207 8520, email: carolyn@neurosupport.org.uk). The new enterprise of NeuroCinema has been well received and again will feature in next years’ plans, with the first film in 2012 being “Awakenings” on Thursday 26th January.

So with a charity ball, race night and a sportsman's dinner, as well as possibly a European bike ride, half marathon, and a full marathon (London) plus a football competition in May, there are lots of things for us to get involved with, will we even have time to answer the phone? Not forgetting the usual suspects of Tesco and street collections, monthly raffles, DAD in Warrington and Carers week, and of course our own volunteers week. I am sure we will be around for the next 20 years. But as we are all feeling the slow down of the economy, I know I am certainly turning into a grumpy old man when I see the price of things, so don't forget to make use of our services, especially the one that helps us with benefits etc; Why not get a give yourself a benefits MOT to make sure you are getting all that you may be entitled to.

THE CASE OF THE MISSING SECRET SANTA.

Over the last couple of years secret Santa has been busy in Neurosupport land arriving from the North Pole and spreading his good cheer, however this year things have taken a very secret turn. It was all so secret that nobody knew so our party had no presents as well as a few other things, but more of that news and photos of our Christmas party, courtesy of Gordon W. Milward & Missus Brenda.

NEUROSUPPORT VOLUNTEERS CHRISTMAS PARTY

At the Buffet Star Chinese Restaurant – Wednesday 7th December2011

Many of us have said in recent weeks “Where has this year gone too” whenever Christmas was mentioned and it was hard to believe we were sitting in the Buffet Star at our ‘Christmas party’. Well really to be accurate it was a festive meal together as there were no Christmas crackers, party hats, sing-a-long, ‘Secret Santa’ and the usual games of bingo which gave us all a good laugh with the comments from the bingo caller. That aside everyone enjoyed the vast array of food available to challenge even those with a massive appetite as you could eat as much as you liked which was very tempting.

On arrival there was a hiccup for several of the volunteers as the lift was out of order.

This meant they had to struggle with the flight of stairs to the lower floor but with the help of others they coped and the main concern was getting them back up again. Fortunately the staff contacted an engineer and it was repaired before we needed to use it when we were ready to leave, (which we were relieved to hear).

There has been so much going on at the Centre this year with all the job changes and cutbacks in an attempt to make ends meet that we were really grateful for the opportunity for 22 of us to meet up together at The Buffet Star. A good number of those attending said it will be nice if we can go back to the ‘old format’ next year when things have settled down and I’m sure if that is possible then it will. Brenda & Gordon

So as we all meet up again in 2012 Wednesday 1st February 10.30am start for our next volunteers meeting, maybe we should talk about the party and what we will do in 2012!!!!!!! Alan

TO STAFF, VOLUNTEERS AND SANTA’S LITTLE HELPER THANK YOU ALL FOR LISTENING AND TO THOSE WHO HAVE HELPED IN SOME WAY. TO YOU ALL MERRY CHRISTMAS AND A HAPPY NEW YEAR ALAN CLARK

2011 A Year at Neurosupport

The start of the year was not so hot

The economic climate had gone to pot

Money had to be found to keep Neurosupport afloat

Too many cutbacks were rocking the boat

Funds had to be raised it was up to the volunteers

To their hard work, you should give three cheers

A bike event was organized to raise money for the Centre

To be held later in the year, Alec was the mentor

A collection in Church Street we had to take to the road

With buckets to fill to try and share the load

Brain Awareness week the collection tins were out

Informing the people of Liverpool what Neurosupport is about

Joe Paton walked from Southport to the Walton Centre Trust

To raise money for Brain Tumour Group a man who won't be fussed

Volunteer week was started with a B.B.Q

Carolyn was in charge she had a lot to do

With help from Maureen, their relatives and friends

The energy of Chris Wall on whom the Centre depends

Another nice touch is the Wall of Celebration

A brick in the wall to put your dedication

With alterations to the Centre, builders knocking the place about

More space and re-organisation, workmen in and out

A new Computer Suite with all the latest 'tech'

A library with books for anyone to read, top speck

Coffee mornings were organized and a monthly raffle

Internet was updated, a new web site set to dazzle

A news letter every two months which keeps us on our toes

Stories from Brain Awareness, to a little bit of prose

And all who gave their time and energy and zest

To make the Neurosupport Centre stay simply the best.

G.W.Milward Nov 2011

Nov 2011

MISSING AGAIN

2011-11-17T06:37:00.000Z

SOMETIMES LIFE GETS IN THE WAY OF YOU DOING THINGS AND THIS THING HAS BEEN IN THE WAY I DON'T KNOW HOW MANY TIMES I HAVE SAT AND THOUGHT I MUST GO ON THE BLOG AND I MUST ADMIT THE MAIN REASON IS THAT THE CENTRE HAS BEEN I WHAT YOU MIGHT CALL A BAD PLACE WITH BUDGETS AND SETTING BUDGETS BUT MORE IMPORTANTLY MEMBERS OF STAFF WILL LOSE THEIR JOBS THIS WHOLE PROCESS HAS BEEN GOING ON FOR A VERY LONG TIME BUT NEUROSUPPORT AT THE END OF THE YEAR WILL I HOPE BE IN A BETTER POSITION.WHAT DOES IT MEAN TO THE VOLUNTEERS AS WE WILL NOW BE EMPLOYING A FULL TIME RECEPTIONIST ANSWERING THE PHONE AND LOTS OF OTHER WORK AS WELL SOME WILL MOVE TO MEET AND GREET OTHERS WILL BE LOST BIUT NOT IN A GOOD WAY SOME MAY EVEN MAKE THE MOVE AND WORK AT THE WALTON CENTRE DESK

SO THE CHRISTMAS PARTY IS NEARLY UPON US AND THIS YEAR IT CLASHES WITH ME BEING A GOVERNOR SO I WILL HAVE TO MISS THE PARTY BUT I WILL BE AT THE WALTON CENTRE PARTY THE DAY BEFORE THE ADVANTAGE AT WORKING THERE YOU GET INVITED TO 2 PARTIES
THE NEXT NEWSLETTER SHOULD BE OUT JUST AFTER THE PARTY SO LOOK OUT FOR THE PICTURES OF THE DAY

ANOTHER EARLY START TO THE DAY AND ANOTHER MEETING TO GO TO NO REST AS THEY SAY BUT I HAVE BEEN GOOD AND I AM NOT IN THE NAUGHTY BOOK AS SANTA IS AROUND THE CORNER MAYBE HE WILL BRING ME A NEW CAR IN MY DREAMS

THE PICTURE IS ONE FORM THE ANNUAL REVIEW IN OCTOBER

PICTURES ANNUAL REVIEW AT NEUROSUPPORT

2011-10-05T05:43:00.000+01:00

IN THE LATEST NEWSLETTER THEIR IS A PICTURE OF THE BIKES LEAVING PETROLHEADS ONE FORM THE MANY THAT I HAVE PUBLISHED BEFORE SO I HAVE LEFT IF OFF.
DONT FORGET NEXT WEEK IF ANYONE HAS SOME FREE TIME WEDNESDAY 12TH OCTOBER STARTING AT 1.30PM SEE YOU THERE.THOUGHT I MIGHT GET IN AN EARLY PLUG FOR JOE PATON NEXT YEAR

13TH MARCH 2012 AN AMAZING JOURNEY BACK IN TIME PART 2

On Tuesday 13th March 2012, in Brain Awareness Week12th March-16th March (BAW), Neurosupport will be hosting “A Head Matters Tea Party” between 11.00am-3.00pm. As part of the celebration Joe Paton, family and friends will make the second part of his journey from The Walton Centre to Neurosupport, a journey of around 7 miles, passing both Everton and Liverpool Football Clubs, helping raise funds for The Brain Tumour Support Group and Neurosupport. If you would like to support the walk go to http://www.justgiving.com/JoePaton2 Textgiving HMWA £? To 70070. To join in the walk, obtain sponsorship forms contact Carolyn Garlick at Neurosupport.

Joe is an active member of the Brain Tumour Support Group that meet every month at Neurosupport supported by Brain Tumour UK, BT Buddies and The Walton Centre, for details of future meetings contact Neurosupport 0151 298 2999. Joe’s association with Neurosupport started in 2005 when he first started attending support group meetings, since then Joe has been a regular visitor to the centre, walking through the Mersey tunnel 19th July 2009 to help raise funds, as well as recent events The Great Brain Ride 3rd September 2011. His love of photography, painting and wildlife can be seen at Neurosupport, where his paintings are for sale, which he again donates to help raise funds.

PART 1 OF HIS AMAZING JOURNEY 17TH MARCH 2011 SOUTHPORT HOSPITAL TO THE WALTON CENTRE

As part of Brain Awareness Week (BAW) 2011 Joe Paton, family and friends walked from Southport Hospital to The Walton Centre, a journey of 17 miles to celebrate his discharge from hospital in 2010 to help raise funds for The Brain Tumour Support Group and Neurosupport where the group meets.

Joe started his medical journey in Southport Hospital in 1997 and was transferred to The Walton Centre in 1998 where a brain tumour was diagnosed for the start of a long journey. One part of that journey was to learn to walk again. Over the years Joe has had many obstacles to climb but has managed to overcome them all.

A PICTURE FROM THE LAST WALK WHEN THEY RAISED £1200 IN TOTAL HALF FOR THE BRAIN TUMOUR SUPPORT GROUP AND HALF FOR NEUROSUPPORT SEE IF WE CAN MAKE IT £1500 THIS YEAR

NEWSLETTER SEPTEMBER/OCTOBER 2011 ISSUE 22

2011-10-05T05:33:00.000+01:00

THE GREAT BRAIN RIDE 2011

MY THOUGHTS AND WORRIES FOR THE DAY

As I sit and write this, after what can only be described as the bank raid of Aigburth (or should I keep getting my car repaired). It is that time of year when you almost feel like an expectant father waiting to hear news of an announcement, not the pitter patter of tiny feet though, but the phone call that tells you your old car has passed its MOT without any problems, however my problems started when I again took my car on its holidays, a few days staying just outside Leeds on the York road. What can be so different about travelling in 3 days what you normally do in a couple of weeks? A friend (you know her as Sue my little helper) said don’t take it on holiday anymore as the car seems to have problems, engine lights that come on telling you to stop, tyres that go bang and different lights that come on and tell you to go to the nearest main dealer, but don’t go straight to jail as they say in monopoly, but go straight to the bank and withdraw all the money you have and borrow some as well (just in case)!

So I hear you wonder what has this got to do with “The Great Brain Bike Ride 2011” Well, that day began with me wondering whether the car would get to Llangollen and back again (yes was the answer). We started out on a beautiful/lousy day from St. George's Hall early on the Saturday morning, where all our thoughts were about the ‘bikers’, Alec and staff, their support and enthusiasm for the event and the raising of some much needed funds. The police and relevant local councils had to contacted, along with what I remember as an 80 page document, that had to be submitted, explaining how we were taking all the right steps to ensure the safety of the riders and our request for a police escort for part of the journey.

Wendy and I (the volunteers) had persuaded our partners (Sally & Kevin) to accompany us, on what turned out to be a long day (with a much needed lie-in the next day). As I had volunteered us to go to the Petrolheads café, Bagillt, North Wales, to help with registration of new riders, checking the already registered riders, and collecting donations from them, they were very generous with their cash, as was Kevin the man in charge of Petrolheads, who made us all feel very welcome. So the day for Sally and me, started a bit early as we were picking up Wendy and Kevin.

We arrived early, and as the weather at St George’s Hall was to say wet is an under statement, the vote of the car was that we leave there and head straight for Bagillt where the weather was a bit kinder, no rain, which was a good job as our pitch for info and registration was outside with no shelter. As we had arrived early breakfast was in order, to ward off the cold of course, with piping hot tea it set us up for the day ahead. At around 11.30 the bikers arrived with Alec leading the pack, what a sight it was and surprisingly a good number had made the journey from Liverpool in the rain, although I think the wet stuff had put some off on the day. I spoke to many, and what a great crowd they were, with one man telling me his MS was in remission, how come? “an act of faith” was his answer when I asked. A long story of life, work, faith and health followed to back it up. He was one of the Christian bikers who had joined the ride and for him his faith was the answer to his MS. I work on the premise that if it works don't knock it, for him it did, who knows if that is the right answer, that I will leave for you to think about and debate. At around 12.30, the bikers left for the journey to the Ponderosa on the Horse Shoe Pass just outside Llangollen. I decided with some reluctance from the rest of my merry band to follow them to the Ponderosa, just to help clear up were my thoughts. Llangollen was not far away, (though it is if you get slightly lost) so with plenty of time to spare, a short detour to stop for tea, creamed scones and a look at the sights of Llangollen before we made our journey to the Ponderosa. Where we arrived at around 4.00pm only to see everyone packing cars and taking down gazebos as the weather had taken a turn for the worse with mist and rain in equal measure. So after a very brief stop, with pictures to prove it, we made our way home back down the pass through the mist, via a restaurant I know not far from home, well you must keep your strength up. So how did we do on the day with bucket collections, a very good £815 with a final figure to come and with talk of next year already being mentioned. So if you didn’t make it this year try for next and “The chuck wagon express” my car did make it without lights but with plenty of cameras and action, with lots of pictures on our own website of the day. http://neuronewsletterspart1.blogspot.com with a video even.

Neurosupport The future and past.

Vision: Neurosupport’s vision is to develop as a leader in the neurological advice and support services in a human and friendly way.

Mission: Neurosupport provides support that complements medical provision, to people with a neurological condition, their families and professionals who care for them throughout their journey.

Values Neurosupport strives to apply the following values in its work:

Person-centered

Empowering

Respectful

Confidential

Committed

Collaborative

Inclusive

Pioneering

Strategic Aims

Neurosupport’s strategic aims are:

Raising awareness and understanding of neurological conditions

To be a self-sustaining organisation

Empowering individuals and families to manage their conditions and realise their full potential

Facilitating neurological charities to work together to optimise opportunities

Neurosupport The future and past.

You may remember that the Trustees of Neurosupport have commissioned an organizational review of Neurosupport, many of you spoke to Adrienne who was carrying out the review. A report was submitted to the Trustees on the basis of which they have relooked at the vision and purpose of the organization and what it is that we want to achieve. On page3 is the new vision, mission, values and strategic aims which have been officially agreed. The next phase of the work is to look at how we achieve those aims and the Trustees will shortly be sharing with us all how they think the organization would be best structured to enable us to deliver the business plan.

We anticipate that there will be changes to the way we all work but recognize that this is an opportunity to get us on a firm footing to meet the current financial challenges and to develop the service we can offer to people with neurological conditions.

Maureen Kelly

Thoughts of the day

Looking at the events that unfolded at St George’s Hall on 3rd September I thought you might want to read a poem that was recently published in the Liverpool Echo from our resident poet Gordon W. Milward. I looked when I read it and wondered when we all take that step a bit like Neurosupport’s future and the past, is it the right one, as they say only time will tell.

Take that Step

To life there is a purpose

In life we sometimes scheme

To find complete enjoyment

And hope it’s not a dream

So take that one step forward

Go on into that dark unknown

Take that life you’re given

For you are not alone

Grasp life into both hands

You’ll see the way ahead

Look to a greater tomorrow

That’s sometimes easily said

To achieve your life’s ambition

And reach that pinnacle of success

Will serve you for the future

You can only do your best.

Gordon W. Milward 2011

Things that i remember

2011-09-20T08:13:00.000+01:00

NEVER KNOW WHO YOU MEET

2011-09-17T12:08:00.000+01:00

LAST THURSDAY SALLY AND ME TOOK OURSELVES TO VISIT THE MUCH CHANGED PIERHEAD AND TO SEE A VERY LARGE SHIP THAT HAD DOCKED FOR THE DAY WHAT A WONDERFUL SIGHT GREETED US THE PIERHEAD LOOKING FOR ALL AS THOUGH WE HAD GONE TO A WATERFRONT ABROAD WHO NEEDS TO TRAVEL AND WHILE WE WERE SITTING WATCHING THE WORLD GO BY WHO SHOULD WE MEET RON FROM THE KITCHEN WHO HAD JUST FINISHED IN NEUROSUPPORT AFTER A VERY BUSY SHIFT ACCORDING TO RON AFTER OUR GOODBYES WE WANDERED INTO A DIFFERENT TIME ZONE FOR BOTH OF US AS WE WENT TO ST NICKS CHURCH WHERE WE ONCE SAT WITH MY MUM WHEN WE HAD GONE TO SEE A DIFFERENT SHIP THE QE2 WHEN WE WERE BOTH IN WORK THE LION TAVERN AT THE TOP OF MOORFIELDS SO WE AGAIN HEADED BACK THAT WAY TO CATCH THE TRAIN HOME FROM MOORFIELDS STATION THE PUB HASN'T CHANGED MUCH SINCE WE LEFT NOW NEARLY 20 YEARS AGO HOW TIMES FLIES AND A DIFFERENT WORLD WE ARE NOW IN
OFTEN PEOPLE ASK DO YOU MISS THE PUB LIFE SEEMED EASIER THEN WE WERE YOUNGER AND FITTER JUST AND WE ENJOYED THAT TIME BUT THIS HAS BEEN OUR BEST TIME WE CAN ENJOY TIME TOGETHER NOW A LOT MORE THAN WE EVER DID EVEN INCLUDING ALL THE MEETINGS I GO TO
SO DO WE LIVE IN A VILLAGE YES

2011-09-17T06:41:00.000+01:00

PICTURES FROM BIKERS FOR NEUROSUPPORT

2011-09-17T06:27:00.001+01:00

THE START OF OUR JOURNEY STARTED AT LEAST 6 MONTHS AGO WHEN ALEC ONE OF THE STAFF FOR NEUROSUPPORT A BIKER HIMSELF CAME UP WITH THE IDEA AND ALL THESE PICTURES ARE THE RESULT OF THAT HARD WORK SO KEEP A LOOK OUT FOR NEXT YEAR WHEN WE WILL REPEAT THE DAY WITH A HOPE FOR BETTER WEATHER A BIG THANK YOU TO ALL WHO TURNED OUT ON THE DAY BIKERS STAFF AND OF COURSE OURSELVES VOLUNTEERS

HELP

2011-09-13T19:48:00.000+01:00

HOW CAN SOMETHING WORK ONE MINUTE THEN GO INTO MELTDOWN THE NEXT MY PHONE AND MODEM WIRELESS ALL WENT SOMEWHERE AND AFTER A LOT OF TRYING THINGS PUTTING IN WE GOT THERE WHO KNOWS WHY BUT I HAVE JUST RECEIVD MY FIRST PHONE CALL ON THE NEW SYSTEM
AND FOR ALL THOSE WHO MISSED THE BIKE HERE IS ME WITH MY HELPERS IN THE BACKGROUND

http://www.youtube.com/watch?v=XH3RL8rM9xw

BIKE RIDE 2011 PICTURES

2011-09-11T16:54:00.000+01:00

I HAVE ADDED A FEW PICTURES OF THE DAY WITH LAST 2 SHOWING THAT WE DID MAKE IT TO THE PONDEROSA AND IF YOU LOOK YOU WILL NOTICE THE PICTURE OF SALLY AND ME WITH THE NAME IN THE BACKGROUND AND THE MIST AND RAIN THAT CAME DOWN VERY QUICKLY IS JUST STARTING IN THE PICTURE WITH WENDY AND KEVIN IT LOOKS A BIT BLURRED IN THE BACKGROUND SO YES WE ALL DID MAKE THE DAY OF WHAT WAS A VERY LONG ONE BUT WILL WE DOING IT ALL AGAIN NEXT YEAR AS THEY SAY WATCH THIS SPACE OR SOME SPACE BUT FOR ME AND MY MERRY BAND WE ALL ENJOYED THE DAY EVEN THOUGH I MANAGED TO LOSE THE WAY AND THE PLOT SOME MIGHT SAY ON THE WAY TO LLANGOLLEN AT LEAST WE ALL SLEPT WELL THAT NIGHT AND 12 MONTHS IS A LONG TIME AWAY BUT WITH PLANS ALREADY UNDER WAY FOR SOME EVENTS NEXT YEAR AS WE CELEBRATE OUR 20 YEARS OF BEING A CHARITY IT ALL WILL COME TOO FAST.
FOR THE LAST FEW MONTHS I HAVE BEING TRYING TO ARRANGE GOING TO MEET UP WITH BRENDA AND GORDON AND GO OUT NOT FAR AND EAT SOMETHING WHICH I DO WITH GREAT RELISH BUT STILL THE TIME MARCHES ON AND STILL WE HAVE NOT MADE THAT MEAL OUT BUT AS I KEEP SAYING ITS ON MY LIST ALONG WITH LOT'S OF OTHER THINGS.
AS I WRITE THIS NOW ON THE DAY 10 YEARS AGO WHEN THE TWIN TOWERS FELL AND THE WHOLE WORLD WENT INTO FREEFALL TIME GOES SO QUICK TRY AND DO TODAY DO NOT PUT OFF TILL THE FUTURE THE FUTURE IS HERE NOW SO GO AND ENJOY IT.

MEETING YESTERDAY 24TH AUGUST

2011-08-25T07:27:00.000+01:00

HELLO ALL

YESTERDAYS MEETING WENT WELL WITH OF COURSE LOTS OF THE ST GEORGE'S HALL AND THE BIKE RIDE I HAVE DECIDED TO GO TO PETROL HEADS ALONG WITH SALLY, WENDY AND KEVIN PLEASE TAKE PLENTY OF PICTURES AND I WILL PUT THEM ON THIS BLOG HOPE IT ALL GOES OK ON THE DAY
YESTERDAY ALSO BROUGHT MENTION OF CHRISTMAS AND ELVIS A CHANCE FOR US TO GO TO SEE NA ELVIS TRIBUTE ALONG WITH THE BRAIN TUMOUR SUPPORT GROUP ON 28TH NOVEMBER MUCH DISCUSSION WENT ON IF WE COULD MAKE IT OUR CHRISTMAS PARTY BUT AFTER MUCH DISCUSSION I THINK I AM RIGHT IN SAYING WE WILL BE HAVING OUR OWN OUTSIDE
CHRIS ALSO MENTIONED HEALTH AND SAFETY ALONG WITH THE VERY WELL ORGANISED AND ATTTENDED 10TH AUGUST OPEN DAY AS REGARDS COMMUNITY PAY BACK WHICH HAS IMPROVED OUR CAR PARK AND PLANTS AND OUR BRAND NEW FENCE I ATTENDED MYSELF WITH MY WALTON CENTRE HAT ON TRYING TO SIGN NEW MEMBERS WHICH IS SLOW BUT GETTING THERE IF ANYONE WANTS TO SIGN UP COME ALONG TO OUR MEMBERS MEETING IN HOLY NAME CLUB IN MOSSPITS LANE BETWEEN 3.30PM TILL 5.00PM ALL WELCOME IT'S JUST OPPOSITE THE HOSPITAL AND THE DATE THURSDAY 29TH SEPTEMBER

VOLUNTEERS MEETING

2011-08-18T13:30:00.000+01:00

JUST A QUICK REMINDER FOR NEXT WEDNESDAY AT ABOUT 10.30 AM FOER OUR LAST MEETING BEFORE THE BIKE RIDE SO TRY AND COME ALONG AND GET INVOLVED SEE YOU THERE CAR PERMITTING BUT MORE OF THAT LATER ALAN

NEWSLETTER JULY AUGUST 2011

2011-08-18T13:26:00.000+01:00

VOLUNTEERS WEEK 1ST- 7TH JUNE 2011

AND THAT’S WHEN THE FIGHT STARTED

As some of you will know the start of summer did not bring out the sun.

On Wednesday 1st June, what it did do was bring out, onto Church Street, some strange creatures dressed in blue t-shirts and other fantastic garments in order to attract people to their nest, (disguised as a blue bucket with Neurosupport logo on), with the hope that they might linger long enough to leave something for us in the way of money and although the sun didn’t shine too much that day the response, to what I think was our very first street collection you may want to correct me if you wish, was a very respectable £458 and a few pence. For me though, I thought I had wandered into H.G. Wells’ book “The Invisible Man”, which is how I felt on a number of occasions, but again I have wandered off the plot. If anyone is keeping a running total in their head of money raised so far, at around £2,600, it is not a bad start to the year. Although for you accountants out there the year starts in April as we all know, why is that? Who decided that all those years ago is a mystery to me!! A big thank you to the staff who kept us in check and showed us how not to shake a bucket (What a lot of rules!!) and to those staff & ourselves for (maybe!) volunteering that extra shift to collect, also the Working Life clients who came along.

Talking of t-shirts, some of you may have voted for a new design courtesy of Chris Wall. It was in the last letter from Carolyn, where I managed to miss completely, the bit about telephone training being held on the afternoon of 2nd June, only to realise as I am writing this article on the morning of that day. I have to do regular re-caps now as my memory is failing along with a few other things, see I am easily led astray, it’s a good job I have Sue to make sense of my scribbling. Back to the plot and new tee shirts, how did we do? Joint first with Muscular Dystrophy, even though our score on hits was a lot more, (Mulder and Scully of the X Files have taken on the case) the work that we all did has a least earned us part of the prize 10 tee-shirts with the new design and £250 in vouchers for John Lewis. So thank you everyone who took part in our little challenge. So I hear you say what about the fight?
WHEN THE FIGHT STARTED PART 2

It all started as a man was taking pictures near our stand in Church Street (picture on page1 before the fight) when someone from Poundland takes exception and that’s when the fight started which resulted in Neurosupport needing a new pull-up display, good job the old one was very old and due to retire soon, (next to the field where old horses go but without the hay). The result was 3 police cars, a police van and very big crowd but Frank of Working Life, as usual, was able to adapt to the situation and helped the incident by passing amongst the crowd with one of our buckets, who said crime didn’t pay!! Alan Clark.

BBQ THE SECOND IS NOW ELECTED ON 5th JUNE

As I listened to the wireless, I told you I was old, it would seem that this time next year we will again have an extra days holiday as the Queen celebrates 60 years on the throne. However our BBQ is only 2 years old and how did our celebrations go, very well, but sadly, the attendance was down on the first year but I am glad I went as it was good to catch up, eat, talk, relax and drink, the last part I thought I had started early. When we were on the bus coming to the centre, just by Lark Lane, a man in a pink wig and shorts joined the bus and was the result of I would say a few stares. Why someone of around 70+ would be dressed like that, however it all became apparent as he met one of his friends later on in the journey and explained that he had been walking around Sefton Park to raise money and awareness for cancer. It’s amazing how people tell their life story on a 10 minute bus journey, but it is something I can relate to, as those are the sort of conversations I have in the Walton Centre when people just want to talk. Talking of the Walton Centre, our “desk” will shortly be on the move again away from being toilet monitor and café extension to the space just along side the new reception area, where some settees are at the moment. I am aware that some of you, as patients, along with us volunteers, have been asking “what are we doing here”. Maureen and Kathryn recently met with the new Chief Exec of the Walton Centre, to raise the problems we have had since the refurbishment, and a move should take place soon, although we do not have a date yet. Oh! Yes we do, see picture on page 4. But back to our BBQ, the food and company worked for me. It was good to see Phil and a few others I don’t normally get the chance to talk to, unless we meet at a volunteers meeting. I managed to have a quick chat to Tracy’s friend, Susan, who won the £25 M&S voucher from our monthly draw, (don’t forget to see if you can sell the tickets when you are working in the centre). Thanks to all who turned up and to the staff who seemed to have it all sorted out this year without any burning of food or the building although the fire station is only down the road. Here’s to next year when we have that extra days holiday to celebrate our Queens 60 years on the throne, as well as our centres celebration year of being 20 years old. With that in mind plans are already underway for 2012, but if you have any thoughts as to what we should do to celebrate bring it up at the next volunteers meeting or mention it to Alec. Alan Clark

ANY GIVEN SUNDAY IN WARRINGTON AND DAD APPEARS

For new and old volunteers this particular Sunday was 10th July, when some of us volunteered for a day out in Warrington, this picture (showing Liz and Geoff amongst the crowds) comes from the website of DAD (Disability Awareness Day) and with crowds of around 25,000 coming through the doors you can see why we attend every year and with our “new” tombola in full swing we again raised £155. The day for me started with taking the wrong exit on the motorway ending up in an industrial estate, then getting soaked when I left the car park to head to the event, where I managed to take a wrong turn when helping Maureen unload her car what a great start!!. I was struck by the contrast later when I went to see my great-nephew, age 9 and a bit, play a football tournament, a six team event with winners and losers. Although his team did not win a game the enjoyment of taking part and running about until they could not run anymore was a joy to watch, so very different from some of the children I saw earlier in the day who might never have the chance to play football. Truly, a day of 2 halves as they say .

COULD WE FUND RAISE LIKE THIS?

John Evans, one of our volunteers who works at the Walton centre sent me this report and picture which relates to the condition MGA of which John is the chair of the Liverpool branch.

Presentation to the Walton Neurological hospital

On Wednesday 25th May 2011, the Merseyside branch of the Myasthenia Gravis Association presented a cheque for £23,023 to the Walton Neurological Centre in Liverpool. Myasthenia Gravis is an auto immune condition, causing a muscle weakness illness and affects one in every 10,000 people in the U.K. It will enable the hospital to purchase a blood testing bio-bank to enable diagnosis of this debilitating illness. The only system of this type, to test for particular types of MG is in Oxford.

A few years ago, the sudden death of Dr. Ian Hart, a leading consultant neurologist at the Walton Centre, an internationally acclaimed and much loved doctor at the centre, triggered a campaign of fundraising in his memory. A framed painting, a favourite of Dr. Hart’s, was also presented to his wife Gillian. The money was raised by the branch with a series of events such as abseils, Morecombe Bay walks and a charity ball in Liverpool, which alone raised £4,000, attended by ex-Liverpool and Ireland footballer Ronnie Whelan and ex-Leeds football star Norman Hunter. The cheque was presented by the chairman of the Merseyside branch of M.G, John Evans, to Ken Hoskisson chairman of the Walton Neurological Centre.
STOP PRESS

The picture on the right is the new area for our patient information desk at the Walton Centre. We moved on 21st July, but still to join us is the computer, printer, notice board and our sign has yet to be moved, but a great improvement on the last move.

THE DAY OF THE INVISIBLE MAN OR COLLECTING IN CHURCH STREET

2011-08-09T06:13:00.000+01:00

THIS WAS THE DAY NEUROSUPPORT DECIDED THAT A STREET COLLECTION WOULD HELP OUR FUNDS AND FOR TIMES IN THAT DAY I FELT LIKE THE INVISIBLE MAN BUT ON THE DAY WE COLLECTED MUCH NEEDED FUNDS AND AT LEAST THE RAIN STAYED OFF BUT BE PREPARED FOR OUR NEXT COLLECTION DAY 3RD SEPTEMBER WHEN WE WILL BE COLLECTING FOR A GREAT BRAIN BIKE RIDE STARTING AT ST GEORGES HALL AND FINISHING AT THE PODEROSA CAFE ON THE HORSESHOE PASS NEAR LLANGOLLEN SO COME ALONG AND HELP SUPPORT NEUROSUPPORT

NEW DESK

2011-08-07T13:54:00.000+01:00

AT LAST YOU MIGHT SAY THAT WE NOW HAVE A PLACE THAT WE CAN CALL HOME OR THE NEW PATIENT INFORMATION DESK AT THE WALTON CENTRE
AFTER MUCH DISCUSSION AT LAST WE NOW HAVE AN AREA WHEE WE CAN MEET PATIENTS AND TALK TO THEM IN PRIVACY
I HAVE PUT 2 PICTURES UP SO YOU CAN DECIDE WHICH YOU THINK WOULD WORK BEST ALTHOUGH WE HAVE ALREADY DECIDED AND YOU CAN SEE THE OUTCOME IN OUR NEXT NEWSLETTER WHICH SHOULD BE DROPPING THROUGH YOUR DOORS SOON I HOPE TO TELL US ABOUT OUR NEXT MEETING 24TH AUGUST STARTING AT 10.30 AM TO FINISH IN TIME FOR LUNCH SO PLEASE TRY AND MAKE THE LAST MEETING BEFORE OUR BIG DAY FOR THE BIKE RIDE SO SEE YOU SOON ALAN

2011-07-14T09:21:00.000+01:00

2011-07-14T09:20:00.000+01:00

2011-07-14T09:17:00.001+01:00

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2011-07-14T09:16:00.000+01:00

2011-07-14T09:15:00.001+01:00

2011-07-14T09:15:00.000+01:00

2011-07-14T09:14:00.002+01:00

2011-07-14T09:14:00.001+01:00

2011-07-14T09:14:00.000+01:00

2011-07-14T09:13:00.001+01:00

2011-07-14T09:13:00.000+01:00

DAD DAY WARRINGTON 10JULY2011

2011-07-14T09:11:00.000+01:00

ME BEING A GOVERNOR ON THE DAY WITH HELP OF COURSE

2011-06-28T07:22:00.000+01:00

AND MORE

2011-06-28T07:21:00.001+01:00

AND MOR

2011-06-28T07:21:00.000+01:00

AND YET MORE

2011-06-28T07:19:00.000+01:00

MORE PICTURES

2011-06-28T07:18:00.001+01:00

CARERS DAY THE OTHER WEEK

2011-06-28T07:18:00.000+01:00

ASS YOU CAN SEE JAN HELPED OUT WITH OTHERS ON THE DAY WHICH WAS WELL ATTENDED A FEW MORE PICTURES OF THE DAY

PHOTOS AND THINGS

2011-06-14T06:18:00.000+01:00

IF I GET THIS RIGHT YOU SHOULD SEE SOME PHOTOS FROM THE LAST NEWSLETTER ALONG WITH THE FULL VERSION OF OUR VERY OWN QUEEN LIZ WHEN HER STREET CLOSED FOR THE WEDDING YOU KNOW THE ONE
ROYAL WEDDING STREET PARTY 29 APRIL 2011

On Friday 29 April 2011 Prince William married Kate Middleton at Westminster Abbey and Elmwood Avenue in Crosby held a street party to celebrate and join in their celebrations.

A group of the neighbours got together and held a series of meetings to decide what was going to happen on the day. First, permission had to be sought from the local council to close the road to traffic and this was given in due course. All the residents were asked if they wanted to be part of it and with just a few exceptions most of the road were glad to join in. We were kept informed of the progress made at each stage by a newsletter. The ‘committee’ bought tablecloths and bunting and all the necessary items out of a small contribution from each household and it was decided to have bouncy castles and games for the children to go on during the course of the day. On the evening before some of the men were asked to put the bunting up between the numerous trees in our road and hoped that it was not too windy for it to blow away before the morning. Lots of rosettes in red, white and blue were also put on the tree branches and as I write, there is still evidence of some of them still around.

On the ‘day’ the residents had to put their cars in the surrounding roads, to keep the road clear for the tables and chairs. The party did not officially start until after the Wedding was over to give everyone a chance to watch the service on the television, although the majority audience was mainly women! The tables, mostly pasting tables, were covered in union jack tablecloths and decorations, and many a cake and drink was blown on to the floor by the wind. All the children looked as if they were having a good time and we all met neighbours we had never seen before or only knew by sight. I have lived in Elmwood Avenue for 18 years, so it was lovely to meet them. During the day there were 2 bouncy castles, one at each end of the road and a notice board with a timetable to tell the children when their activities were starting, such as football games etc. We also had a rock band courtesy of the son of our immediate neighbours.

Most of the neighbours had got into the spirit of it all and the front drives were full of garden tables and chairs, barbecues and garden awnings, as there was a bit of a chilly wind. My family also came to the party, although the small babies did not know what was going on. The local newspaper came along to take a photograph, but I had just taken my granddaughter for a walk to get her to sleep when they came, so I missed my moment in the newspaper as did baby Emma, so baby Dylan had his moment in the paper – not me!

As it got dark, we lit the cheminea and lots of people came to warm themselves by it and the rock music grew louder! As you can imagine the adults began to take over for the evening and a good time was had by all, dancing in the street and karaoke and even dancing on the garden walls, which all seem to have survived quite well. The road was re-opened for traffic at midnight.

There were lots of headaches, tired faces and hangovers the next morning as the clearing up began. As with all good occasions it was sad to see everything almost back to normal very quickly. I wonder if the next celebration will be for the Queen’s Diamond Jubilee – I have saved all the flags and bunting – just in case we do it all over again. I wish to thank all the neighbours who made it happen.

AND YES I DID GET IT RIGHT ALTHOUGH I SEEM TO HAVE LOST A PHOTO I USED OF A BOY AND A CAKE SO NEARLY MAYBE

NEURO NEWS MAY/JUNE 2011 ISSUE 20

2011-06-13T09:00:00.000+01:00

This was the original version the new amended gives more information about the next stage of the review

FUNDRAISING TO KEEP US ALIVE?

You may be aware that Neurosupport is going through some difficult times. At the end of March, we lost 2 members of staff from the Neurolife section of Working Life as funding came to an end. The Department of Health grant, of around £260,000, was awarded in March 2008, to help people in their recovery and possible return to work, by providing access to a variety of courses. I remember when we first got the grant, as we were facing a similar difficult time regards jobs and funding, and this is the short announcement that went in our very first Neuro News.

“I have some good news! Neurosupport have been awarded a grant from the Dept of Health to fund our ‘Neurological Lifestyles’ Programme for 3 years. (To become Neurolife) As you will be aware we have been running the confidence building courses art, tai -chi, drama etc for some time but on a shoestring budget. We now have the opportunity to develop the programme with a view at the end of the 3 years to being able to demonstrate that the programme is effective and make a business case so that we can be paid for running the programme. The funding will enable us to appoint a new member of staff to work with the Working Life Team and preparations are already underway to recruit that person.” Maureen Kelly.

I write this, 3 years later, and we are again facing difficult times. We await the results of a review undertaken on instructions from the trustees. The firm involved has spoken to all members of staff, volunteers and the people who use the centre in order to compile a report/review. The trustees will meet to view this review on 11th May. The recommendations of this much awaited report, will dictate the way for the centre’s future and are due to be made public towards the end of May. So by the time you read this “all as they say will be revealed”, but not I hope, in a Tommy Cooper way (an old magician for those too young to know him) . Some of the blame must lie in the hands of the bankers (see page 3 for the solution to our financial troubles) who have caused the financial meltdown that has resulted in the tightening of belts and the need to find different ways of doing things. Fundraising and room hire will certainly help Neurosupport and the people who use our services in the difficult times ahead, but the way people hire our rooms may have indirectly been affected, so if you belong to a support group or know of anyone who may need to hire a room pass them on to Chris Wall who will be able to help, at very reasonable rates of course! Alan Clark.

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STOP PRESS

The trustees have accepted the report from the review with lots of positives and Adrienne is going to draw up an outline business plan for the future.

FUNDRAISING TO KEEP US ALIVE- PART 2

So! how can we, as volunteers, help Neurosupport to find some of the money needed? As part of the fund-raising committee myself, I am aware of several things which will allow us to help, attend, spread the word about and generally get involved. The first would be to donate items for our (now) monthly raffle (see below). During the past months the raffles we have held, have proved very successful. In Brain Awareness Week, at our tea party for the young persons group around £360 was raised and the recent Easter egg raffle raised approx £100, so as you can see from some effort in selling raffle tickets and by donating those unwanted gifts, in a couple of months we raised nearly £500, hence the reason for the monthly raffles. Other things that you might like to get involved in to help out Neurocinema street, store collecting, DAD in Warrington and of course out Brain Bike Ride 3rd September. Check our latest edition of Glance.

Our ’Race Night’ on 20th May, also helped raise some money. Thanks to the staff and volunteers who had a hand in the organising this event. I have devoted most of the news about the race night to pictures and a few chosen words from some the sponsors (mainly yourselves) on the night, these comments ranged from “I need to get another loan” to “never again” but in all seriousness we did manage to raise around £1100 that evening, according to Geoff at least half came from him, so well done to everyone who went, helped and generally joined in. Tracy who works in the kitchen on a Tuesday had a great time, as did Liz and Wendy. I did hear that the man who won 1 race put his winnings back in the pot so to speak and at £90 that is a good pot to put his money in, so a big thank you to him. Check our very own website http://neuronewsletterspart1.blogspot.com/ for other pictures and more of Liz’s story.

THE FIX OF ALL ILLS

Dear Mr. Cameron,

Consider the following plan, as my suggestion for fixing England’s economy : You can call it the Patriotic Retirement Plan or Big Society Plan if you like.

There are about 10 million people over 50 in the work force. Pay them £1million each severance pay for early retirement with the following stipulations:

They MUST retire. Ten million job openings– unemployment fixed.

They MUST buy a new British car. Ten million cars ordered– car industry fixed.

They MUST either buy a house or pay off their mortgage– housing crisis fixed.

They MUST send their kids to school/college/university— crime rate fixed.

They MUST buy £100 worth of alcohol/tobacco a week…..and there is your money back in duty/tax etc. Cheers!

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Our own Queen Liz and a ‘Right Royal’ Wedding party

On Friday, 29th April 2011, Prince William married Kate Middleton at Westminster Abbey and to celebrate, Elmwood Avenue in Crosby held a street party to join in their special day. On the ‘day’, residents had to put their cars in the surrounding roads, to keep the road clear for the tables and chairs. The party did not officially start until after the wedding was over, to give everyone a chance to watch the service on the television, although the majority audience was mainly women! Most of the neighbours had gotten into the spirit of the day, the front drives were full of garden tables, chairs, barbecues and garden awnings, as there was a bit of a chilly wind. The tables, mostly pasting tables, were covered in union jack tablecloths, decorations, and many a cake and drink was blown onto the floor by the wind. During the day there were 2 bouncy castles, one at each end of the road and a notice board with a timetable to tell the children when their activities were starting, such as football games etc. We also had a rock band courtesy of the son of our immediate neighbours. All the children looked as if they were having a good time and we all met neighbours we had never seen before or only knew by sight. I have lived in Elmwood Ave for 18 years, so it was lovely to meet them all.

My family also came to the party, although the small babies did not know what was going on. The local newspaper came along to take a photograph, but I had just taken my granddaughter for a walk to get her to sleep, so I missed my moment in the newspaper as did baby Emma, so baby Dylan had his moment in the paper – but not me!

There were lots of headaches, tired faces and hangovers the next morning as the clearing up began. As with all good occasions it was sad to see everything almost back to normal very quickly. I wonder if the next celebration will be for the Queen’s Diamond Jubilee in 2012 – I have saved all the flags and bunting – just in case we do it all over again. I wish to thank all the neighbours who made it happen. Liz Tunnicliffe.

A VOLUNTEERS STORY - Liz Tunnicliffe

My name is Liz Tunnicliffe and I am a volunteer at Neurosupport, working at the reception desk.

On 20th September 2006 I had a CVA, (cerebrovascular accident) which caused a blood clot in my brain. This had followed a year in which I was in hospital on numerous occasions and would eventually be diagnosed with chronic kidney disease. At approximately 9.00am, the CVA happened, fortunately Harry, my husband, came home shortly afterwards and I was rushed by ambulance to Aintree University Hospital. Dr Sharma and the stroke team met the ambulance at the door, I was given an MRI scan and was a suitable candidate for the clot busting drug (this drug cannot be given if it had been a bleed on the brain, but mine was a clot) and fortunately I was within the 3 hour window for the drug to be administered. I write this from what I have been told happened.

Whilst initially I made a good recovery, I think because I was so pleased that I had survived the stroke, but the reality soon set in and there were still many issues to be addressed. I had been badly affected by emotional liability and it would be a long time before I was able to cope with this side of the stroke and I am still dealing with it. I had a lot of support from the Family Liaison Officer from the Stroke Association. I remember he once said to me, as I was recovering, ‘The first time he saw me he was reminded of a little wounded bird and gradually he began to see the changes in me’. His help was invaluable. I had physiotherapy, speech therapy (to help my speech and swallow), which I still have issues about. I had good support and encouragement from Harry, my family, friends and also members of the team at Neurosupport. A year later in 2007, I had to have a pacemaker fitted. Sadly I had to give up my job, as a medical secretary, as I would have found it to difficult to cope and this took me quite a while to accept. I have a different life now but try to always remain positive and look to new challenges without exerting myself too much. I look forward to a good future especially now that Harry and I have 2 lovely grandchildren.

Liz Tunnicliffe. 12th May 2011.

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STOP PRESS 2

Joe Paton and friends who walked from Southport to the Walton Centre on 17th March raised over £1000- what a wonderful achievement, a big thank you to all involved.

Disclaimer-The opinions expressed in this newsletter are personal and do not reflect the opinions of Neurosupport

VOLUNTEER WEEK AND A BBQ

2011-05-28T06:43:00.000+01:00

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

2011-05-03T07:02:00.000+01:00

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

2011-05-02T15:49:00.002+01:00

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

2011-05-02T15:32:00.004+01:00

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

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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.

2011-03-20T17:41:00.003Z

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

2011-02-17T14:33:00.002Z

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

2011-02-08T07:34:00.002Z

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

WHY WONT IT TALK

2011-02-08T07:13:00.003Z

SOMETIMES FOR WHAT EVER EASON IN MY LIFE I WAKE UP VERY EARLY AND CANNOT GET BACK TO SLEEP 4.30AM THIS MORNING FOR ONE. SO I READ AND FINISHED THE NEW JEFFERY DEAVER NOVEL EDGE A STAND ALONE BOOK AWAY FROM HIS LINCOLN RHYME SERIES WHICH SOME MAY REMEMBER FROM THE FILM THE BONE COLLECTOR STARRING DENZIL WASHINGTON THE NEWE BOOK AS ALWAYS HAS TWISTS AND TURNS AND I DIDN'T SEE THAT COMING SO HAVE A GOOD READ
AFTER THE BOOK CAME THIS THING I AM TYPING ON NOW THE COMPUTER AND AT THE MOMENT DOES NOT SEEM TO WANT TO TALK TO MY PRINTER DID THEY FALL OUT OVER A DATE MAYBE THE PRINTER WAS NOT THE GENTLEMAN TO THE LAPTOP WHICH FOR ME WILL ALWAYS BE FEMALE I DONT KNOW WHY MAYBE SOMEONE WHO HAS DONE A SURVEY OF THESE THINGS
SO AFTER MUCH PULLING OUT OF CABLES AND SWITCHING OFF THINGS THAT USUALLY WORKS THE BUT NOT THIS MORNING AS I SIT NOW FIRST IN THE DARK AND NOW AS THE FIRST RAYS OF LIGHT TAKE ON THE NEW DAY ALTHOUGH MY DAY AS I SAY STARTED AT LOT EARLIER IT STILL WONT TALK MAYBE THEY WILL KISS AND MAKE UP AND HE MIGHT EVEN SEND A VALENTINE CARD WILL THAT BE A EMAIL CARD I SUPPOSE NOT MANY DROP ON THE MAT THESE DAYS AS THE POST BECOMES EVEN MORE OBSOLETE WHERE WILL IT ALL END I ASK MYSELF ALL I KNOW IS I WISH THEY WOULD TALK TO EACH OTHER AGAIN OR A NEW YOUNGER MODEL MAYBE THE ORDER OF THE DAY WATCH THIS SPACE AS THEY SAY OR MAYBE THE LAPTOP WILL STOP TALKING AS WELL THEN WHERE WOULD WE BE

A PICTURE FOR YOU

2011-01-24T15:03:00.002Z

ALL THE PICTURES THAT FEATURE IN THE LATEST NEURO NEWS ARE ALREADY ON OUR BLOG CHECK OLDER POSTS AS WELL AS A POEM BY GORDON WHICH FEATURED IN TODAY'S ECHO ABOUT A CERTAIN KING AND KENNY IS HIS NAME SORRY TO ALL BLUE NOSES

THE ONLY PICTURE GOES WITH LAST ARTICLE ABOUT VERITY

NEURO NEWS JANUARY/FEBRUARY 2011 ISSUE 18

2011-01-24T14:36:00.002Z

‘CHRISTMAS COMES BUT ONCE A YEAR’

On Thursday 2nd December, Christmas came to Neurosupport, At least our Christmas lunch did and a few other things as well. Secret Santa again proved a success as did Irish bingo, but the ordinary bingo session seemed to take forever, “The balls keep getting stuck” said Thomas “The” Jones, our bingo caller for the afternoon, (was it really only an afternoon!) I think my beard could have matched Santa’s and more by the time that game finished. The table quiz taxed our brains, and those who had tasted the vino, claimed it helped them win…I won’t go into the seven dwarfs tie breaker, but will just say that I heard it took nearly as long as the bingo to get the correct answer!! It was good to catch up with the old and new faces who came along and enjoyed the afternoon, though I had to go early to take my great-nephew to see his own Santa. Rapid Hardware did a great job of keeping Lewis’s grotto alive and Santa did look like Santa, although there were several rooms in which to visit him, which one was the real one who knows! but I think we all need a little bit of Christmas magic now and again. It was encouraging to see Wendy looking well after her back op, but I think it may take a little longer before she is able to return to volunteering. The other reason I had to go early, was because I was giving Wendy and Kevin (aka Herbert) Franey a lift home. Herbert? Why Herbert? I hear you ask, I don't think Wendy would forgive me if I went into all the details, but enough to say that Kevin (aka Herbert) had been helping Wendy with her hair. She shared the full story with us, along with tea cakes and lots of laughter, when we went to visit Phil (Ameena’s husband) after he had just spent 2 weeks in hospital. Wishing you all the very best for 2011.
Alan Clark ( More pictures on our blog)

One of life's coincidences? Around December 2009, Sally and I went to the Echo Arena to see Andrea Bocelli, a great start to that Christmas, whilst there we bought tickets for his 2010 concert to be held at MEN Manchester. Last November, when talking to Gordon at the volunteer’s meeting, he told me they were looking forward to a surprise trip his daughter had arranged for them. On our arrival at the MEN, who did we see sitting 2 rows directly in front of us, Yes! only Gordon and Brenda. It transpired that Gordon, like ourselves is a big fan of Bocelli and the surprise was tickets to the same Bocelli concert. Spooky or what! It is nearly 2 years since Gordon and I sat in reception at Neurosupport and spoke about him wanting to leave something behind, but here are his words about that journey. Alan Clark

POETRY & A GREAT ADVENTURE

It’s just over 12 months since my poetry book was published. This project came about whilst I was speaking to Alan, and wondering about leaving something behind when my days were up, to which he replied “your poetry”. So that was the start of a great adventure, with neither of us knowing the first thing about publishing or what it would entail. After a lot of phone calls and e-mails we found a printer who would do the printing of the books, but where would we get the cash? The sponsored walk through the Mersey tunnel by Neurosupport Volunteers helped a lot. So we asked Neurosupport, the Walton Centre and my local Parkinson’s group to provide us with the initial cash to get things rolling and all proceeds would go to the charities involved.

On the 14th of October 2009 the book, titled ‘Days of Hope’, was launched. A very busy time in my life followed, with my going to places to promote the book, as it was appearing in the press. We had agreed to price the book at £3 a copy, as it may not sell if priced any higher. Without the help of Alan none of this would have gotten off the ground, his enthusiasm and tireless phone calls to people, asking questions about something we had not done before. I thanked Alan then for his encouragement to me, as I had said I didn’t think I would have the energy to do it later, (something he remarked about at that time). ‘He is a man with vision and understanding’.

We ordered 1,000 copies, with 300 copies for each venue, (plus 100 for myself), to sell. The money raised was sent to Ray Kennedy’s charity and the Walton Centre Rehab unit for the patient’s recreation. We have sold over 750 copies and still selling. It is a limited edition which means no more will be printed. So do not miss out, if you have not got a copy, get one now.
To all who helped with this book I am eternally grateful.

Gordon W Milward

Don’t judge a book by it’s cover– a lesson learnt!!

On hearing about ‘Days of Hope’, my first impulse was just to buy a copy to support the ‘Neurosupport’ person who had written it. It probably wouldn’t be any good, would it? Isn’t the world full of people who think they are authors, the next Tennyson or suchlike? After forgetting many times, I finally got hold of my copy during last Summer, however I did not plan to read it, having done my duty in buying it (well! you don’t do you?). It wasn’t until Alan asked would I do a piece about the book, that I gave it any thought, but where had I put it? (panic stations). On sitting down, having found it amongst stuff, to flip through ‘Days of Hope’, a well presented book, I realised what a mistake I had made!

This was not a book to be pitied. The poems flowed off the pages, I tried to read them all at once, quickly going from one to another, scanning the words in order to catch the essence of them. Reader, that is another mistake I made. These poems have to be (no! demand to be) savoured, read for what they are. A portion of a man’s life in words.

To put into text, the effect and emotions, Gordon’s poems had on me is quite difficult. Perhaps it is because I know a little about him and his circumstances, perhaps it was his obvious understanding of how his condition had effected his wife, or how his gratitude and love for her came through in his writings. Whatever it was, I can only say I found each poem a gem, each one to be enjoyed for it’s own content, emotional or other- wise. To stand, (literary speaking), in a persons’ shoes and feel some of what they were experiencing at such a time of their lives, I found quite moving. That is not to say these poems are full of “why me” moans, they aren’t, they are literally what is said on the cover “poems written from the heart of my thoughts whilst coming to terms with Parkinson’s”

Whilst believing that poetry is a personal choice, and though my knowledge is limited, never being a great fan of the genre, (even though I can recall, as a youngster, listening enraptured as my father read Longfellow’s ‘The Song of Hiawatha’ to us). I would encourage you to beg, steal (well, perhaps not steal) or borrow a copy of ’Days of Hope’, and sit down (with a cuppa or such like) and enjoy many a quiet time with Gordon’s thoughts. I do not think you will be disappointed. Sitting here, writing this I find myself re-reading the poems and I know this book will become a favourite of mine.
Thank you Gordon, for teaching me a lesson. Susan Brooks

MEET THE WALTON CENTRE GOVERNORS - 17TH MARCH 2011
2.00PM –6.00PM IN AINTREE CLINICAL SCIENCE BUILDING

Just a quick invite to all, as with the previous open day we will be having charity and health information stands on the day. Dr Andy Nicholson will be giving a presentation about epilepsy, Emily Gerrans, a physiotherapist, will be talking about her work. Patients and carers will also be telling their stories about the Walton Centre. The presentations will take place in the lecture theatre, in the Aintree Clinical Science building, along side the hospital. For further details contact Sara Vinas on 0151 529 6622, go to www.thewaltoncentre.nhs.uk or check the posters in Neurosupport nearer the time.

A Volunteers Story
As I passed the first anniversary of my volunteering at Neurosupport in the Autumn, my thoughts turned to writing an article for this newsletter. Being part of a team of volunteers, all working different days, I still felt as if I didn't know some people and I wanted people to know why I came to join the volunteering team.
As an English student at the University of Liverpool over the last three years, I was a volunteer with the Get Into Reading project (http://thereader.org.uk). They run reading groups across Liverpool and other parts of the UK, which aim to share reading and make it enjoyable, accessible and improve people's wellbeing through the power of words. The project which interested me in particular was the group at the neurology ward and the residential care home, which was investigating the link between rhyme and dementia. It was fascinating that the words which came most easily to the tongues of the men and women were “Humpty Dumpty sat on the wall” or “Mary had a little lamb”, nursery rhymes which had been learned in childhood. The key to unlocking more speech, memory and confidence could be found in reading rhymes, lyrics and poetry aloud together through the projects. The reading groups ran for all ages and it was fantastic to know that at the same time as these groups were being held, there were young people learning about fairy tales and nursery rhymes in a new generation too.
I completed training to be a reading group facilitator, whilst continuing my studies but unfortunately my timetable as a student clashed with the reading group times for another year. At the end of 2009, I came to Neurosupport to find an alternative time to continue reading. It was sad to leave the Reader Organisation (who run the groups) but thanks to Maureen and Lorna, a group was funded through Neurolife and started at Neurosupport. This was exciting, because now the love of reading could be extended and explored to people with all kinds of neurological conditions outside of dementia! But it was not to be, my university timetable clashed again with the time of the reading group at Neurosupport. It was very frustrating but I used the opportunity to be a volunteer at Neurosupport to learn more about the conditions and the remarkable people who live with them daily. Volunteering in admin for Neurolife, the Working Life Project and the library has really taught me how many different services Neurosupport provides. The library in particular is like a sweet shop to me, as a book lover! In addition to being a student and a Neurosupport volunteer, I have also been tutoring in one-on-one sessions with literacy; some are autistic, some dyslexic, It is challenging and fun to learn with reading, writing and verbal expression.
In the future I look forward to combining further studies into the benefits of reading aloud with individual sessions as well as groups. This means going back to university and being a student again! Liverpool, is the perfect environment for this because there is such positivity and encouragement from the staff and the participants of reading schemes across the city. Neurosupport superbly reflects this attitude and I hope that I have future anniversaries as a volunteer with you all. Verity Bradley

THE BINGO CALLER AND LOVELY ASSISTANT JAN

2011-01-18T07:25:00.001Z

HOW COULD I MISS THOMAS THE JONES OUR VERY OWN BINGO CALLER

CHRISTMAS 2010 OH SO LONG AGO

2011-01-18T07:04:00.009Z

IT ALL SEEMS SOO LONG AGO NOW AND I HAVE ONLY JUST GOTTEN AROUND TO ADDING CHRISTMAS PICTURES TO THE BLOG IN NEED TO GET MORE ORGANISED DID WE ALL ENJOY OUR VERY OWN CHRISTMAS AROUND THE FIRE AND WITH ALL THAT SNOW AND ICE I THINK THAT WAS THE BEST PLACE TO SAY ROASTING ROASTING YOUR VERY OWN HOT CHESTNUTS COULDN'T RESIST. KEN DODD IS ALIVE AND WELL .THEN AGAIN I HAVE BEEN WATCHING HIM AND HIS CRAFT OF JOKES AND VERY OWN BRAND OF HUMOUR SINCE I WAS 14 YEARS OLD AND THAT'S A LONG TIME .

HOPE WE ALL ENJOYED THE TIME AND LOOK FORWARD TO THE NEW YEAR AND DONT FORGET OUR NEXT VOLUNTEER MEETING ON 9TH FEBRUARY 1.00PM TILL 4.00PM WITH LUNCH BEFORE SEE YO ALL THERE

I HOPE ALL THE BLUE NOSES WILL NOT BE OFFENDED BUT OUR VERY OWN POET GORDON HAS BEEN AT IT

King Kenny

The atmosphere at Anfield has been lacking for awhile
The players and the staff they did their best to smile
A new manager was needed, a man the people knew
A man of great stature in life there are a few
Dalglish is his name what changes can he bring
In remembered times gone by, his name the Kop would sing
Hard work would be ahead, he could only hope and pray
This man is full of courage. a man of yesterday
He has come to take the reins of a depleted team
Their performance on the field the likes you've never seen
They'll wear the shirt with pride, they'll fight for all it's worth
Give their all with passion, never yield on the the Anfield turf
This man has seen some troubles, Hillsboro and Heysel too
It brought him to his knees there was no more he could do
But change it is upon us to infinity and beyond
Hard work he will administer there is no magic wand
So buckle your belts you players he's been let of his leash
The King of Anfield is here, our man Kenny Dalglish

GW MILWARD
12 Jan 2011

THANK YOU

2010-12-25T14:23:00.002Z

As i sit here typing when did i think that i could type maybe the 2 fingers count I'm not sure i would just like to say merry Christmas and a very Happy new Year to all the volunteers at Neurosupport for their support and help in equal measures.
You may ask what I am doing writing this on Christmas day well why not enjoy the holiday and look forward to the New Year.
A special thank you to Sue who helps me with the newsletter and keeps me in check otherwise I would ramble on as I'm doing now but to Sue thank you once again and for all the voluntees who enjoy our newsletter.

HELP

2010-12-19T15:42:00.002Z

Is it just me or is technology getting harder.Over the last few months after buying myself a laptop I have been stuck lots of times and I would like to thank all the people who take the time to fill in the help pages that appear in most of the programmes you open these days.
For the last week after trying for what seemed a lifetime about half an hour I was trying to do something that I had been doing for the last 3 years that is using Office documents and copying and pasting the words onto the Blog that you are reading now.
All of that happened on my desk top computer (the kitchen table) using Office 2003 and windows XP but now I have windows 7 and office 2007 surely it would be easier until I found a help comment about a compatible button on my webpage and that will help and yes it did so thank you all those Bloggers and yes this is on Word and copied and pasted I hope and how easy was that and the button can be found next to the refresh button

A POEM AT CHRISTMAS

2010-12-14T14:29:00.003Z

OUR RESIDENT POET LAUREATE GORDON W. MILWARD JUST SENT ME THIS I THOUGHT YOU MIGHT ENJOY

Remembering Christmas Past
Where have all the old Christmases gone?
A Christmas day and a birth rolled into one
When did we last roast chestnuts on an open fire?
Can you remember the last time you heard a Christmas choir?
Church bells would ring at this happy time
People would wish you the best and life would be fine
Wake up in the morning before the sun
Christmas day would be a bundle of fun
You would feel about for the presents Santa had left
He had put them beside you on the bed where you slept
Times would be hard then but happy we would be
Sitting around a real Christmas tree
The decorations you made hang low from the ceiling
You would be happy with life what a wonderful feeling
Open your presents –football boots and a ball
An apple, an orange, some pennies would fall
Turkeys in the oven a smell to behold
I wish it could stay and never grew old

Oh theses happy times we shared with Mum and Dad
Things can’t stay forever and that makes us sad
Traditions have gone it’s a time of worry
People rushing round, can’t speak in a hurry
Children wanting the biggest and best
Parents are tired they just look for a rest
Central heating is on, no coal for the fire
There’s no ‘Knocker up’ or even a ‘Town Crier’.
G.W.Milward
Dec 2007

CHRISTMAS

2010-12-13T14:48:00.002Z

OVER THE LAST WEEK SALLY AND ME WENT TO VISIT COLOGNE AND YES CHISTMAS MARKETS AND WHAT A GREAT TIME WE HAD, HOWEVER SALLY HAS RETURNED WITH WHAT IS A VERY BAD COUGH AND HAS STAYED IN BED SINCE WE ARRIVEED HOME ON THURSDAY ONLY TO EMERGE ON SATURDAY BUT ALTHOUGH UP SHE IS DEFINETLY NOT ABOUT AND CHRISTMAS DECORATIONS TO PUT UP BUT I AM SURE THEY WILL BE UP SOON.
I WAS GOOD TO SEE NEUROSUPPORT LOOK SO WELL THE OTHER WEEK WHEN WE HAD OUR CHRISTMAS DINNER THANKS TO CHRIS, CAROLYN AND THE REST OF THE STAFF WITH LUCK I WILL BE ABLE TO PUT SOME PICTURES UP SOON OF THE DAY
ENJOY THE QUIET FOR NOW AS NEXT WEEK WILL BE HECTIC

PICTURES AND THINGS

2010-11-23T11:21:00.001Z

AS WITH ALL OF THE POSTS YOU HAVE TO WORK OUT WHERE THEY ALL BELONG
HOPE TO SEE EVERYONE LATER TODAY

NEURO NEWSLETTER NOV/DEC 2010

2010-11-23T10:59:00.008Z

COULD THIS BE THE GHOST OF CHRISTMAS STILL TO COME THE ONE ON THE RIGHT IS THE REAL SCROOGE

MY OLD SCHOOL GRANTON ROAD

THE OLD LIBRARY WHERE I FIRST STARTED MY ROAD TO READING AND STILL WEARING SHORTS EVEN IN THE WINTER

NOVEMBER/DECEMBER 2010 ISSUE 18

A CHRISTMAS TALE IN OCTOBER/NOVEMBER

My one constant in life, apart from family, is reading books, ok! maybe some other things as well, the cinema, music, going out & actually listening to people who can sing, concerts and for my birthday treat, (you remember you all signed a birthday card not so long ago) I went to the Royal Court with Sally to see ‘Lennon’, a birth to death musical memory, with Andrew Schofield playing Lennon in his later years, appearing in a white suit with long hair. The music of my youth, what a great show it turned out to be. If Lennon had lived he would have been 70 years old on 9th October. One of my favourite Lennon songs contains these lines :

‘All these places have their memories

Of lovers and friends that went before

Some are dead and some are living

In my life I've loved them all’

But back to reading. Reading books is one of those things you either love or hate, a bit like Lennon, (who for me was always different). I remember the first adult book I read and no! it was not what you think, it was book that I had taken out of the adult section of the library when I was in junior school, and yes I can remember that far back, just. It was a time when to join the library you paid a small fee, even a 10 year old child. The library in question was a very ornate building in St. Domingo Road called Everton Library, which as far as I knew was still going strong, or had become a community centre, but when checking this on the magic of “th’internet”, I found that unfortunately, it had not become a community centre. It was now a neglected and unloved building, as the picture I found shows, which is rather sad as it started me on my road to reading. Will this be an insight into the future, a tale of neglect, the reason for my ramblings will become clear as you turn the page.

My early years were spent in what was officially called Breckfield School, built in 1880, but was known locally as Granton Road School, as it was in Granton Road, Anfield, and it is no longer standing, as I found out when I went on a nostalgia trip, with my great-nephew who had started school and was feeling, as do others who enter that alien world of school, a bit scared. So I thought a little trip to my old school would help, it being of another age and although, as I recall very dark and foreboding, I had enjoyed my early school years there. When we arrived, there it was or in this case wasn’t. It celebrated its 100 years in 1980, but I don’t know when it was knocked down. As you can see I can get easily distracted, so back to my first adult book ‘The Great Escape’ by Paul Brickhill and yes it was the book of that film, so imagine what it must have been like for a 10 year old, with the war years still fresh in most memories, this tale of escape and adventure. I went on to read ‘The Wooden Horse’ by Eric Williams, another tale of escape, but that is the world of books for me, a chance to see into other people’s lives, to see how they live, that moment when you cannot wait to turn the page and find out what happens next or to finally learn “who dun it”. Those early years of reading were the start of a friendship with books that will be with me forever. Mrs Cameron, our headmaster’s secretary (who I would like to thank, albeit a bit late), was the first rung onto the ladder of reading, all those years ago. She had paid my fee to join the library as I did not have any money, and is indirectly responsible for this story of the adult section, where somehow I had wandered into looking for my first book. However on my next visit when I presented the next ‘adult’ book, I was told that I was not allowed to take books from this section until I was older, my words of protest went unnoticed, as I was only 10. So back to the junior section I was sent.
You can just make out the inscription erected 1896, not long after my school was built, but as you can see it’s still standing, waiting for some developer to come along and turn it into “Apartments” maybe.
Later on as I got older my tastes changed from science fiction to crime to adventure and back again, I rarely read what you might call non-fiction, although I have now and then ventured into auto-biographies, but I want to be led on an adventure, to escape to the worlds the author creates, to get to know their characters with the rich tapestry of life that they create. One author whose words always makes me enjoy the English language is Charles Dickens. As that time of the year is near at hand “A Christmas Carol” the tale of Ebenezer Scrooge and how the ghosts came to visit him as he lay sleeping and the view of his world through the eyes of Jacob Marley, his old partner. As I write this we seem to have had another Ebenezer Scrooge appear, on the 20th October to be precise. We don’t have to wait to see if Scrooge is coming this Christmas, I am afraid he is already here, as the old joke goes Christmas has been cancelled! The name of the ghost of Christmas to come is George Osborne and David Cameron, sorry that’s 2 ghosts, as they look at incapacity benefit, DLA and all the other things that help make our lives easier.

The benefit system is in for a big shake up the likes of which hasn’t been seen since the days of Charles Dickens, when they didn’t even have access to benefits. There will be lots of other cuts announced, so by the time you read this we will all know that Christmas has definitely been cancelled. Will I still have my bus pass, will we have enough money for the central heating if the winter fuel payment stops? There will be lots of questions over the coming months, so make sure you have the right advice about your benefits and use the service that we offer at Neurosupport to find out the answers to your questions, don’t be afraid to ask. As I listened to the news last night the talk was of defence cuts and aircraft carriers without planes? Surely I misheard or maybe not.

Can you spot the real Scrooge? I know it’s the one on the right but after “the budget” I am not so sure.

So where will all this lead to? as figures come out concerning job loses, services about to be changed or lost, maybe keeping the same service but make savings elsewhere, I am not sure I understand it all or where it will end. I do know that although I think Christmas has been cancelled I don’t think anyone seems to have noticed. In the shop I was in today, only 2 days since the announcements, people seemed to be in a spend, spend mood and there appeared to be no shortage of money, or are they all using the ‘magic’ credit card and will worry about paying next year. So back to my world of books I will go. You may have seen the advert of a new detective series Thorne starring David Morrissey, based on books by Mark Billingham, I am half way through his latest “From the Dead”, it’s better than worrying about the new “Scrooge” we have in our midst.
Since first writing this item and passing it to my little helper for proof reading. I have finished that book. So if you enjoy a good book on crime or enjoy reading fiction, (as the facts I read today in the paper were very depressing) go to your local library, It costs nothing to join now, check out a book and if they haven’t got it in stock they will order it (for a small fee of course), but with my now limited budget it is a better alternative than Waterstone’s or the like, even when it’s on “offer”. Keep away from the facts and stay with fiction it’s a much better world!

Alan Clark

VOLUNTEER UPDATES AND ‘DON’T FORGET’

Wendy Mitchell is making a slow recovery after her op. You will be able to give her your good wishes at the volunteer’s Christmas party, as she hopes to be there . So don’t forget come along and join us on Thursday, 2nd December around 1.00pm, to enjoy turkey, tinsel and meet the new volunteers. Final details will be given at ou volunteer’s meeting on Tuesday, 23rd November or check the board in reception. To those who may be unable to make our ‘‘Do’, we wish you all a very merry Christmas and a great 2011. Alan Clark

THE ANNUAL REVIEW - 2010 NEUROSUPPORT

It has been several years since I have attended an Annual review and to be honest I have always found them rather long and laborious. So I was pleasantly surprised to find myself enjoying this years. It may have been the knowledge that a buffet was waiting for us or the anticipation of seeing if one of the raffle tickets I had sold would win the much coveted ipad. Whatever it was, I found the afternoon went along at a pace, all of the speakers were easy to listen to and the content of their talks informative.
The interval music was provided by Erica Van Drunen, who attends LIPA. She gave a brief personal history and played 3 enjoyable pieces, which she had composed herself.

It was very encouraging to hear about the new group for young people, run by young people. They told us how they had met and got to know each other. The adventures they had during the Summer, what they hoped to achieve for each other and with the group in the future. It had all began when Jake Brown was asked to organise a young persons group. So assisted by support worker Molly Gardner, with funding from Roald Dahl’s Children's Charity and help from Neurosupport based Working Life Service, Jake got to work organising. The group, for the moment called ‘Young Persons Group’, was launched earlier this year on 29th April, at an open day held in Neurosupport. They began with 2, which became 4 and has gone from strength to strength. I was very impressed with the confidence and enthusiasm they displayed when giving their talk. Perhaps Annual reviews are not so boring after all. S. Brooks-MacDonald

If you know of a young person with a neurological condition, aged 16-24 years old, who would interested in joining the group contact Jake or Molly for further information at ypg@neurosupport.org.uk

A SHORT TALE OF MOTORING WELL MAYBE A LONG ONE

2010-11-16T20:41:00.003Z

WHEN SOMETHING WENT BANG, HISS!!!!

As they say a funny thing happened to me and Sally on the way home from a short trip around Leeds, Skipton, Harrogate, York and the Lakes. As you maybe aware from my other ramblings (articles) that I like to be prepared for you hope most things and at my tender years, messing about with cars I leave to the “professionals” and I have breakdown cover that will repair the car at the roadside as well as get the car and all the passengers home when we need it, well that weekend we nearly did, well part of it.
On the last day Sunday I drove from Scotch Corner at the top of the A1 to cut across to the Lakes on the A66 and then on then on to Kendal the destination of choice. So on this bright sunny day, why is it always bright and sunny on the last day when the others days had been indifferent, rain, wind and sun to name but a few, so off we set to Catterick before we got to Scotch Corner, a place where my dad did his basic training before his 6 years holiday abroad to such far flung places as El Alamein, Monte Casino and Rome to name but a few but I digress, well maybe not as I am writing this today we are celebrating 70 years of Winston Churchill’s speech “Never in the field of human conflict was so much owed by so many to so few” when the Battle of Britain was raging over our skies.
Back to the plot; Sally and me had stopped off at Catterick at a Sunday( yes you’ve guessed) market at the race course a pleasant stop before going on to Kendal a drive of around 60 miles.
As we turned off the A66 to a more sedate road to Kendal, passing through different places around 25 miles from Kendal a fact that was told to me by Mr Little he will appear soon in the story I heard bang hiss. I looked around for a lorry and the air brakes going off but none in sight so yes you’ve guessed a puncture which became very apparent as I drove 10 yards on when the steering went funny the front wheel dropped and I heard that sound that all motorists around the world dread the sound of a wheel on the road without the help of a fully inflated tyre, lots of flat spent rubber flapping on the road, the place was Kirkby Stephen on the A685 ( a fact I didn’t find out till later), a place that lot’s motor bikers use as the roads wind a lot. I call it a 1 road town, everything is on 1 road, pub, post office, shops, tourist information and a church, although this one had been turned into an antique centre but was closed on Sunday like a lot of places, a fact that was mentioned a lot by Mr Little. Their was a good thing though in all of this I was travelling a lot slower down to 30mph and slower again as I was approaching traffic lights, 10 minutes earlier I was travelling at the speed limit 70mph. After coming to a stop and managing to pull over the road to park at the back of some parked cars in a lay bye, if they wanted to move difficult but I would be on my way soon once I changed that tyre with the freshly pumped up spare tyre that I had checked a week before we set off, it was a little flat when I checked but with more air it seemed ok, how wrong can you be After emptying the boot of “stuff”, how much do you need for a 3 night break, well with a car the “just in case” goes to whole new level. I think I need to adopt the Ryanair and Easyjet policies in future. So with what seemed all our worldly possessions on the street I eventually got to that spare tyre beneath the boot and although it looked ok if you had wanted to blow a balloon up with the air in it you would be very lucky. That was plan A and as they say I quickly moved on to plan B, a breakdown company, a tow truck and a Mr Little. It was nearly midday when I phoned my breakdown service not that nice man who use to salute you a more watered down version cheaper and explained where I was, a fact that I found out from a nice lady who sold hot Panini’s, freshly made balms and tea with a drop of sympathy, but that came later. A text arrived and told me a Mr little breakdown was on his way and would arrive in about 45 minutes, so we sat in the car and waited for him to arrive, however 5 minutes later a phone call from the man himself I am minutes away, things were looking up. Mr Little arrived a local man from the sign on his truck, he was to say the least helpful in a Will Hay sort of way if anyone is old enough to remember a sketch when he was in charge of a fire station when someone rung to report a fire and the conversation went something like this “Is it a big fire as we have just started our tea break, could you keep it going till we get there and we will be along shortly, we have the pools coupon to fill out as well”
“You’re in a bit of a mess” said Mr Little and thought that a compressor to blow up the spare was the answer and so did I, how wrong could we both be, as soon as the connection to the valve was released all the air came out a faulty valve, perished rubber as I found out later. Is their no Kwik-Fit around I asked as I am out my comfort zone and you are in yours. Well it’s Sunday and the nearest one is in Kendal it will be shut and its 25 miles away as though it was on another planet. Visions of an extra night stay were looming into my brain. If we take the valve out of the tyre on the car and replace the one on the spare that should solve it, however I need to go back to the garage and try and find a tool that will do the trick, I wont be long said Will Hay, sorry Mr Little and off he went. Living as we do in Aigburth Kwik-Fit is 4 streets away and always open on a Sunday, so can things be so different we are only 100 miles away from home and yet we some how seemed a million miles maybe because I have lived all my life in Liverpool a big city who knows, so on this very bright Sunday now afternoon their was only one way to find out ring them and find out. Not ringing Directory Enquiries that often I resorted to the 118 advert, which probably cost me as much as the new tyre, but I am going to far ahead after getting the number and the nice lady asking me did she want her to put you through and ring the number an offer I declined, I contacted Kwik-Fit, Kendal and behold a shining light they were open said Mr Kwik as long as you can get here by 2.00pm but we are open till 4.00pm, light was starting to appear at last.
Mr Little came back after my phone call to the breakdown company who in turn told him that someone was open on a Sunday a miracle. When Mr Little returned in his truck he said “I had been busy, how did you find out “the phone was nearly my reply but as I would soon need this man’s help to get to Kendal I refrained and with much stopping of traffic and loading the car and all our worldly possessions which we had loaded as soon as I found out Kwik-Fit was open of we set for a very picturesque drive to Kendal crossing the M6 motorway. We arrived at Kwik-Fit with time to spare around 1.45pm and Kwik and Fit got on with the job in hand replacing the faulty valve and the very flat tyre with a new one and of course £40 lighter in the wallet and we back driving into Kendal at 2.15pm.
So what has all this to do with volunteers apart from I hope an amusing story about me the volunteer, part of it I think is the kindness of strangers, the lady with the kiosk who gave us a cup of tea and reminded me that we were lucky we were going slow, Mr Little who must have been 70+ he did help and as we found out on our journey with him he had travelled the day before up to the Highlands of Scotland and back again, no wonder he seemed in a daze and in his words “He was Knackered” and to the last two in this Mr Kwik and Mr Fit who just got on with the job in hand and showed their help and courtesy to us both, even though it was Sunday.

So back to me while I was volunteering at the Walton Centre information desk the other day a man came looking for a garage, his car wouldn’t start and he had come from Cheshire. After some discussion with Reception a garage was not far who maybe could help but remembering people who had helped me I offered and took him to the garage and explained his problem give me 10 minutes was the answer. As I chatted to him he had got lost and he also needs to come back next week for a scan, his wife was having trouble he explained in more detail the trouble, for him and his wife it could be the start of a long journey with a different type of breakdown man needed, I do hope not. His car had gone when I looked later and I did see him again the next week, his wife had come for the scan and he had remembered the kindness of strangers and brought me some eggs and tomatoes for my troubles. Some people do care and go that extra mile to help strangers in trouble.

WHAT A DAY

2010-10-30T23:21:00.002+01:00

World stroke day on Friday29th October turned into a very big thing much bigger thing than we all thought
When I was talking to Mike Morris a Cheshire governor, what seems so long ago about holding some event in Neurosupport when we had the meet the Walton centre governors back in June we spoke at length about what we could do aand after a few weeks iI haad thought that we comr do something about memory and movement but when I saw that it was world stroke day on 29th October it made me think that the event could be stroke and with the help of Maureen Kelly cheif exec of Neurosupport and Margaret Matthews along with Jeanette Lunt of the Stroke Association the day seemed poossible.
After talking to Deborah Morris of the Royal Liverpool hospital we all joined forces to promote and plan the day and the 1 in 6 was born
On the day we had the event opened byMaureen Walsh from radio Merseyside who gave us an insight to something that happened to her which was a small stroke but slightly more complex even the BBC turned up after filming a young couple were the husband had had a stroke while working away and was now recovered but wants to promote the condition so the BBC followed them fom home to Neurosupport filming parts of the day and also talking to the doctor who spoke about the effects of stroke the film was later shown that night .

Just a big thank you to everyone who turned up on the day and made ita big success

Alan Clark

time goes so quickly

2010-10-15T09:00:00.002+01:00

In the last edition of Neuro News when i gave a shorten version of what happened to myself when in early 96 our life changed i had published some of the story of how i ended my working life? as a volunteer so here is the full article at last

THE STORY OF A CARER, ALLEGEDLY AND WHY DAFFODILS MEAN SO MUCH

The story started in early 1996 when I found my wife struggling on the bathroom floor after being sick from a violent headache, but I think I need to rewind the story a bit to earlier in that day when our life changed forever, when we left the old one behind and found a new one.

We had been to Mold early that morning to visit an antique fair and we had bought a figurine of a boy and girl, a hobby that we both enjoy and still do but without the money to buy too many these days although we still find it if something takes our eye that is not too expensive. We had the use of a relatives car and they were due back from holiday so this was the last weekend and we were going to make the most of it, hence the visit to Mold and we were going to stay out but my wife said she felt unwell, sick. When we arrived home our next door neighbour was having car problems and could I help him bleed his brakes, so my wife went in and I helped with the car, but when I went in a bit later I found my wife lying on the bathroom floor and complaining of a violent headache and being sick and with my help she went to bed and the headache came and went over the next couple of days so I called our own GP who gave her some tablets and said to contact him if it got no better. By the end of the week no better was what it was so we called him again on the Friday and he called an ambulance as we headed for our local hospital.
A funny aside to that day was that the figurine was on display, unwrapped and in pride of place in the hall where it still sits to this day all of course before the bathroom incident.

As you can imagine a bad headache does not have the same priority as other patients so we waited what seemed and was hours with just seeing a nurse who took the history. Eventually we saw a doctor and he found a bed and a lumbar puncture was done as one of the tests and of course they found blood and a transfer to the old Walton Hospital was needed I found this out when I phoned the next morning as I had been sent home around 9.00pm. As it was the weekend the scanner was not staffed, I think, so the scan was done on Monday and the doctor wanted to see me that night when I came to visit. He explained that a bleed in the brain had been the cause and drew a picture of what had happened, a bit like a blackberry bursting and we need to put a clip on the neck. The conversation after we shave the head and fold back the skin all went in a blur as we need to do this tomorrow or it will happen again and she could die.
The next day Tuesday came and my next door neighbour gave me a lift so I could see my wife before the operation. When I saw her waiting in the bed we talked about her own mother, who at the same age 49 had died of a brain haemorrhage so you can imagine how she felt as she says the man in the green wellies came for her.

So what do you do when you have to wait 3-4 hours while the operation that will save your wife’s life is going on? For me the answer was simple you feed the ducks. As we had both worked together and led a very hectic working life in Liverpool’s city centre we now lived by Sefton Park, which is at the bottom of our road, it had become a haven for us and the simple pleasure of walking around the park and feeding the ducks had became a routine to us so I feed the ducks, sat, waited and wondered of how things would turn out. This was the time of PMP pre mobile phones unless you remember the house brick that was a phone. So I went home and phoned the hospital all had gone well and the doctor will see you later to explain. Seeing my wife in a hospital intensive care bed with lots of tubes was for me a scary thing when hospital was a very alien place, we had both led reasonable healthy lives and only visited when someone else was there not your own wife. A couple of weeks was the verdict, words were a bit muddled and phoning her sisters turned into a comedy sketch but that was solved by a piece of paper with all the numbers on her memory was not the same it will get better was an answer but short term memory may be not. However going into the third week and all was not going as well as they thought, she had no appetite and was losing weight a good thing she said so another scan revealed their was some swelling in the brain and a course of steroids was the answer.

By week 4 my own body was going into shutdown, all the not eating right and drinking had caught up with me and I was in bed for around the time that my wife improved . A friend of mine said she got better because I stopped going to see her he thought the coincidence was too much. Anyway I recovered just in time to see my wife recover fully and she was coming home.

The weeks that followed seemed strange to everyone, family and friends helped a lot in the early stages but apart from the shaved it seemed ok. Ok is a word we still use when people ask how my wife is, it is easier than to say depressed, fatigue, lost for words, the constant checking, afraid to leave the house without me and just not right. Things that we have learned to live with over the years and the family see the looking well (Make-up) walking and talking and think that everything is ok and if I am honest I suppose it is we have found a very different rhythm of life that the one we had before. After 12 months she was discharged but remained unable to work ever again.

So why do daffodils mean so much. After 5 weeks of not leaving the house, the shaved head down one side is not the best look on a woman but with gentle coaxing we had a walk down to Sefton Park and sat on a bench surrounded by daffodils in full bloom for what seemed a life time, we both knew that we had been lucky and life as we knew it had changed forever, we had been given that second chance. Why allegedly a carer, I am not sure who looks after who, I myself have some health problems and as we both grow older we have slipped into a rhythm of life that suits us both.

As I write this in spring of 2010, 14 years later when the daffodils are still in bloom but some are fading and dying I remember that time on the park bench, we both do that wonderful day we sat surrounded by daffodils. Life has been different for us both, work was not possible but volunteering for me was. We had gone to a meeting about brain haemorrhage and a possible support group that was held in the Glaxo Centre, known now by the name Neurosupport in Liverpool city centre. Over the coming months we went to meetings at this centre and by now 2 years had passed and when I heard they were looking for volunteers to help staff the patient information desk at the new Walton Centre I signed up “To give something back” a phrase you hear a lot in volunteering and so in September 1998 I went on an induction course and have been there ever since. My role has changed over the years, although I still volunteer, I now represent volunteers at staff meetings, write a newsletter, and write on our own blog and with my long association with The Walton Centre I have also become a hospital governor when it became a Foundation Trust in 2009. One of my other volunteering roles is that am a committee member for The Brain Haemorrhage Support Group a cause very close to my heart. To give my time and to help others in a similar situation, this has given me the greatest reward of all. So when our life changed in 1996 maybe things do happen for a reason who knows. What I do know is that every year we always enjoy the daffodils and remember.

NEURO NEWS— NEWSLETTER SEPTEMBER / OCTOBER ISSUE 17

2010-10-15T08:04:00.011+01:00

OUR BBQ ‘DAY IN’ - 5TH SEPTEMBER 2010

At our volunteer’s meeting in June, some discussion turned to the volunteer’s day out and where we should go. It had been mentioned earlier in the year and talk of trips on steam trains, river boat rides or a visit to gardens had all been discussed. Carolyn had worked to find out costs etc, when Pauline, our receptionist, had the idea (on June 22nd to be precise), of a ‘Day In’. That is a day out where we all stay in! and so after lot’s of yeses and that sounds like a good idea! a BBQ party was born.

So, in August we had our first and last planning day. What food should we have? who would do the cooking, should we charge? what about a vegetarian option, drinks and Karaoke? (Pat and Dianne are desperate for a Karaoke party), but they were headed off at the pass, as they say in the old cowboy movies .

Music in the background was the order of the day, along with a small charge of £5.00 to include 2 guests. It gave family and friends a chance to see our workplace, where we spend our time as volunteers. The option to bring your own beer and wine, if you wanted to, held a certain charm for me, as an ex-licensee (who now drinks cups of tea in pubs, most of the time, these days). For once the car would stay at home and the magic bus pass would come into play, so with a bag of ice, courtesy of our local supermarket, along with some beer, and spirit in every sense, Sally and I set off, with a friend we had invited, to enjoy the day. We arrived in plenty of time, and things were well under way, after a technical hiccup or 2 (the table top was burning, due to the heat of the throwaway BBQ’s), but these minor problems were soon sorted out. Tom, Maureen's husband, with his able helpers (Neurosupport staff) and Thomas the Jones lending his helpful hands, were in full charge of the BBQ.

Having a BBQ was always going to be a problem, given our English weather, and although I had arrived in shorts to try and encourage the sun to show, it managed to keep itself hidden most of the day. With the help of a gazebo, Tom did a great job cooking the food, while we and 2 of our trustees Mike Boggild and David Britt, all enjoyed the results of his labour inside. There was plenty to eat and drink, served up by some wonderful people young and old. The food was
delicious, burgers, sausages, salads and the usual mixture of rice etc: not forgetting the strawberry gateau. A wonderful day, with good food, company and laughter enjoyed by all. I think someone said that laughter is good for you and if that's true, we must have all come away feeling better, because there was plenty of laughter, on the day we had our ‘Day In’.
The photos were taken by our very own poet laureate, Gordon W. Milward, plus part of this article as well, so thank you, Gordon for your help in putting this together.
Alan Clark (& Gordon W. Milward).

VOLUNTEER UPDATE
Wendy Mitchell, one of our volunteers on reception, (who has done more years than me as a volunteer) will be going into The Walton Centre for an operation at the end of September. From our conversations it may be a long recovery and I along with all of you and the staff would like to wish her well.

Also this month we will see some new faces starting the road to volunteering when they attend the induction course, so if you see any new faces say “Hello” and introduce yourself.

CONTACT DETAILS:
If you have something that you would like to include in Neuro News, contact me on my email alan.clark200@hotmail.com or leave details at reception. Check out our website http://neuronewsletterspart1.blogspot.com/
You can also find the link through the Neurosupport website.

THEATRE TICKETS

One of our volunteers, Janet, can get discounted tickets for certain shows. She has obtained a discount for the following 2 shows:

Calendar Girls £17.00 on Wednesday, 29th or Friday, 1st October
Sound of Music £16.50 on Tuesday, 12th October (first night)

A third option is behind you, Oh no it’s isn’t! Oh yes it is (that time of year)! Panto time– and taking names for:
Aladdin - (possibly) on Thursday, 16th December

Janet can check for alternative available dates and supply leaflets if needed. If you would like to take advantage of these offers or speak to Janet. You can contact her by leaving a message in the library pigeon hole or email info@neurosupport.org.uk

‘IT’S A KNOCKOUT’

The 22nd of August saw Neurosupport make it’s very first venture into the alien world of ‘It’s a Knockout’. Our team consisted of staff, volunteers, and I think someone who just happened to be standing in the wrong place, at the wrong time, signed the form and he was in, (our joker in the pack, our very own “Ringer”), but more of that later. The team threw themselves, quite literally in some cases, (as the pictures show) into the spirit of the day.
I took the easier(?) option, (that’s my hat, chair & balloons in the photo) and helped on our information stall, (which I have been doing on and off since 28th September 1998 when I first started my induction course). Our tombola had it’s second airing, with prizes donated by all, as well as footballs, soft teddies and (pink?) elephants, to encourage people to the stall. It was again a great success. I even got to talk to our very own Lord Mayor.
However while myself and others were enjoying the sunshine and I must say, a more sedate approach to the day, things on the other side of the field were developing “what have I got myself into” thoughts. A certain Geoff Shaw, our volunteer on reception, who in his words thought he was “reasonably fit”, will now give you his story. He is the fit(!) looking one on the left of the picture. Alan Clark.
************************
I awoke to beautiful sunny Sunday morning, birds singing, church bells ringing and It’s a Knockout calling. A shiver went down my spine (and the rest of my body later!!) but presuming this to be another sign of fairly advanced middle age, I worried not and set off with gusto to Mossley Hill Athletics ground for Fun Fun Fun. Everyone was in an expectant mood as the music system beat out a fair rhythm, and the tension mounted before the games began (I know now what it must be like before the World Cup Final). I took part in most of the events, and handsomely won the sack race and rope climbing (slowest time wins, right?) got wet and eventually wandered off into the sunset with a vacant look on my face. (First time for everything).
Many other charities from Liverpool took part, and judging by the amount of water most people were wringing out of their tee shirts, everybody had a great time. Hopefully, if I’m not too busy doing a shoot for The Bionic Man this time next year, I’ll be there. Bring it on!!!! Geoff Shaw.

P.S.
We did finish a respectable 14th of the 17 teams who took part and as Geoff says “Bring it on”, and our Joker? I think he had the last laugh, he was seen entering the beer tent never to be seen again. Alan.

Remembering Malcolm Hawkins

This photograph is how I shall always remember my ‘mate’ Malcolm. I first met him when he arrived at the (then Glaxo) Centre some years ago. He had retired from work, following an operation to remove brain tumours, and had come to join the library team. As time rolled along, I learnt he was a passionate photographer, who did not hold with these new ‘fan-dangled’ digital cameras, and I watched him determinedly look for his favourite film & paper, (as Kodak and other well known companies stopped producing them) rather then be forced to ‘downgrade’ to a digital. He was a keen member of the local camera club in West Kirby, where he lived; his work has been displayed in various venues, won several competitions, both in the UK and abroad. His unique way of looking at life, showed in his pictures and was a pleasure to see. As anyone who has seen, bought (or been gifted) one of his photographs will know. So it was a surprise to learn one set of his recent photographs, had been taken with one of those fan–dangled gadgets. He had been persuaded, via one of his fellow snappers, to borrow (& use) a digital camera. Malcolm had found a whole new way to express himself and there was no stopping him now. He loved music, especially jazz, and looked forward to the Matthew Street Festival, where he mixed his joy of music with his love of photography. He liked to go to music nights in the local wine bars & pubs, preferably on a curry night, and if he heard music & liked it, would often just follow the sound to find the source. This is how he found the South African drums, he joined the band , learnt to play the drums and performed with them at the Empire in Liverpool. Sadly an event I missed.
When Suduku puzzles arrived, he quickly became an avid fan, and tried to impart the secret to completing them to me (without success, as my brain wouldn’t function in the way required). He often spent his train journey home solving them. However they did not stop him falling asleep (a side effect of the tumours) on the train and would wake to find he had been at his station for some time….luckily he lived at the end of the line and the staff checked the carriages for left luggage.

Malcolm’s battle with his medical condition was constant and ongoing. In the Autumn of last year, he was told he would need to have an (his 3rd) operation to remove yet another tumour. Sadly, whilst the tumour was removed, complications during and following the procedure, left him paralysed. He spent the next 10 months in the Walton Centre before being moved to a nursing home, where he died at the end of August.
Malcolm’s passion for life, his humour and need to explore and learn new things, I found inspirational and daunting at the same time. He never seemed to let things get him down and took life on the chin, no matter what it threw at him. His love for his wife, Moira, their family and life long friends (‘the gang’) shone through.

Malcolm, you were a good friend and I will truly miss you. Su xx

BBQ AND A PLAN 5TH SEPTEMBER CONFIRMED

2010-08-08T18:49:00.003+01:00

SOME OF US MET FRIDAY 6TH AUGUST FOR A QUICK TALK ABOUT THEY FORTH COMING BBQ AND IT WAS DECIDED THAT A LETTER WILL GO OUT TO ALL EXPLAINING WHAT WILL BE ON OFFER.

HAS ANYONE GOT ANY HANGING BASKETS THAT THEY CAN LOAN FOR THE DAY OR BUNTING MAYBE FROM THE WORLD CUP AND ENGLAND.

BURGERS AND HOT DOGS ARE THE ORDER OF THE DAY

KEEP A LOOK OUT FOR THE LETTER

BBQ 5TH SEPTEMBER

2010-08-01T18:51:00.004+01:00

I AM NOT SURE IF WE WILL HAVE ONE THIS SIZE BUT I AM SURE IT WILL BE A GOOD DAY FOR US ALL

NOT TO FORGET IT'S A KNOCKOUT 29TH AUGUST

NEURO NEWS JULY / AUGUST 2010 ISSUE 16

2010-07-29T07:06:00.008+01:00

AS YOU CAN SEE YOU CAN SOMETIMES THINGS WORK OUT OTHER TIMES NOT THE PICTURES ARE ALL THERE YOU JUST HAVE TO WORK OUT WHERE THEY GO

11TH JULY WARRINGTON (DAD) DISABILITY AWARENESS DAY

OUR VERY OWN “OUR DAY OUT”

I don't know if anyone remembers “Our day Out” by Willy Russell, they have now turned it into a musical (which will be on the Royal Court from 27th August to 9th October), Sally and my good self went last year to see it and it was laughter all the way, with the young cast doing a wonderful job of singing and dancing, along with a few of the adult Royal Court regulars, a great show that is not to be missed.

Back to our very own ‘Our Day Out’, to Warrington, Maureen and myself had been there since around 9.30am, and we had everything set up, just as the crowds started to jostle for a place in the tombola queue. We were kept busy until the minibus brought a very welcome sight to our eyes, more volunteers!!

The reinforcements arrived in the guise of, well here are pictures of some of the volunteers on the day, with Gordon, Brenda and Keith bringing up at the rear, as you can see the lollipops went down well too, they are not just for young kids, but for grown up kids as well. As you can see we are all wearing tee-shirts with our logo on, so if you fancy a mini bus ride next year come along and enjoy what is a great day. Over the day we raised £340 from the tombola and around £70 from ticket sales so a big thank you for your prizes and for the efforts on the day of the volunteers who came along.

OUR VERY OWN “OUR DAY OUT” PART 2

For the first time (and I think not the last), our very own Tombola was used. This machine is a wonderful example of what you can make with a bit of wood, paint, stickers, (plus lots of effort and ingenuity on the part of Carolyn’s dad), truly a tombola worthy of an Oscar, if they gave one to tombola's.

Over the day the tombola worked well, with lots of prizes going to very worthy winners, along with sales of our prize draw tickets. The main prize to be won this year being an ‘ I Pad ’ plus lots of other prizes, and at £1.00 a ticket a real bargain. So don’t forget to collect your draw tickets (to sell) and help raise some much needed money for Neurosupport. The prize tickets will be drawn at our Annual Review on Wednesday 13th October 2010.

Another person who you can see in the pictures, is Neurosupports’ very own poet laureate Gordon. W. Milward, and yes he was signing and selling books on the day and I have included one of his new poems below.

Alan Clark.

The Heart of a Volunteer

There’s nothing as strong as the heart of a volunteer

Talking to patient’s maybe shed the odd tear

Help them face the future, for the life that they lead

Understanding their worries it’s kindness they need

Spending time listening to their hopes and dreams

Cup of tea and a packet of custard creams

A Volunteer is someone who cheers them up

When they're feeling down or a bit rough

Somebody else to talk to and listen to their woes

You’re a Volunteer that’s as far as their story goes.

G.W.Milward March 2010

‘MEET THE WALTON CENTRE GOVERNORS’

24TH JUNE 2010

Just a quick note to say thank you to all those who attended this event. It was well received, and in case you didn’t manage to make this one we will be doing it all again in the New Year. So as they say “Watch this space”, and lots of others as we plan to get the message out to everyone a lot sooner then originally planned.

The picture on the left is of Joe Paton presenting a cheque to Maureen for £230 after walking up Snowdon with some friends.

As I have mentioned the “New Year “ that means we can talk about the man in a red suit, no! not the new Liverpool manager Roy Hodgson (I think he will need a suit of armour before the season is over). Sorry ladies and some men I have ventured into that do not talk about “FOOTBALL” or in England’s case NOT FOOTBALL zone. I will stop now before that dreaded vuvuzela is mentioned. No, I don't care if I have spelt it wrong and someone wanders through reception blowing one, but back to the plot. Sorry I mean back to the man in a red suit, SANTA and thoughts of the Santa Dash, it’s a fun event, at around 5 Km long or to you or me 3 miles give or take, all are welcome. We would like to enter a team of 10, with them all getting sponsors and contributions in order to raise as much money as we can. The entry cost alone, is around £20, which will provide you with the red suit, as you can see just to enter a team of 10, it will cost at least £200 (told you I was good at maths). If you think you can manage the dash, which as far as I know starts at the Pierhead and finishes at the Town Hall, taking in the Churchill flyover, and you would like to join our team , then contact Maureen or myself.

Talking of myself you may have noticed I am absent on a Tuesday, at the moment with being involved with Walton Centre governors, the brain haemorrhage support group, as well as various committees, I have had to stop volunteering on a Tuesday. I still come in for staff meetings representing yourselves and I am still working at the patient information desk on a Thursday so I am still volunteering.

Alan Clark.

VOLUNTEER UPDATES

Malcolm Hawkins (ex-libary vol), who after a long stay in the Walton Centre, has now moved to his new accommodation in the grounds of the Countess of Chester hospital. For those who want to keep in touch, his new address will be: The Pinetum Nursing Home, Countess of Chester Health Park, Liverpool Road, Chester CH2 1UA Tel: 01244 380731

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

Our best wishes also go to 2 of our volunteers, Sharon and Pauline, who are having to spend short stays in hospital. We hope they will return soon

A JOKE OR A LESSON IN FEMALE LOGIC?

I was walking down the street when I was accosted by a particularly dirty and shabby-looking homeless woman who asked me for a couple of pounds for dinner.

I took £10 out of my wallet and asked, 'If I give you this money, will you buy wine with it instead of dinner?
'No, I had to stop drinking years ago', the homeless woman told me.
'Will you use it to go shopping instead of buying food?' I asked.
'No, I don't waste time shopping,' the homeless woman said. 'I need to spend all my time trying to stay alive.'
'Will you spend this on a beauty salon instead of food?' I asked.
'Are you NUTS!' replied the homeless woman. I haven't had my hair done in 20 years!'
'Well, I said, 'I'm not going to give you the money. Instead, I'm going to take you out for dinner with my husband and me tonight.'
The homeless Woman was shocked. 'Won't your husband be furious with you for doing that? I know I'm dirty, and I probably smell pretty disgusting.'
I said, 'That's okay. It's important for him to see what a woman looks like after she has given up shopping, hair appointments, and wine.'

CONTACT DETAILS: email to alan.clark200@hotmail.com

or check out our website http://neuronewsletterspart1.blogspot.com/

You can also find the link through the Neurosupport website.

If you have something that you would like to include in Neuro News contact me on my email or leave it on reception.

24TH JUNE 2010

2010-07-13T12:14:00.003+01:00

JUST A QUICK THANK YOU TO ALL WHO TURNED UP AT THE MEET THE WALTON CENTRE GOVERNORS THE OTHER WEEK I HAVE ALSO MADE A LIST OF THOSE WHO DIDN'T AS WELL ONLY JOKING YOU KNOW WHO YOU ARE

HERE A QUICK PICTURE OF JOE AND MAUREEN WITH JOE PRESENTING A CHEQUE AFTER WALKING UP SNOWDON

THE EVENT WENT WELL AND WE ARE HOPING TO REPEAT IT SO THE ONES WHO DIDN'T MAKE IT CAN REDEEM THEMSELVES

TOO LONG??????

2010-06-13T15:35:00.002+01:00

WHY DOES ALL MY COMPUTER WORK TAKE SO LONG THESE DAYS

I HAVE STRUGGLED TO JUST PASTE AND COPY HOW THOSE WORDS SEEM SO INNOCENT WHEN I FIRST BECAME THAT SILVER SURFER WAY BACK IN 2007 AND HERE I AM WRITING A BLOG AND MY WHOLE LIFE STORY OR PART OF IT ANYWAY

THE LAST FEW ENTRIES OF TODAY HAVE RELATED TO OUR NEWSLETTER WHICH SHOULD BE ON IT'S WAY TO YOU ALL AS I WRITE THIS

ONE PIECE OF NEWS FROM THAT IS THAT NEUROSUPPORT WILL BE AT ST GEORGES HALL THIS THURSDAY 17TH JUNE AROUND 10.30 AM TILL ABOUT 3.00 PM FOR ADVICE FOR CARERS I WILL THERE WITH THE WALTON CENTRE TRYING AS MUCH AS WE CAN TO TELL PEOPLE ABOUT WHAT THE WALTON CENTRE DOES AND ENCOURAGE SOME TO SIGN UP AND BECOME MEMBERS AND ALSO INVITE THEM TO OUR "MEET THE GOVERNORS EVENT THAT WE ARE HOLDING 24TH JUNE SEE PREVIOUS POST FOR DETAILS

SO COME ALONG FOR FREE GIFTS AND NEUROSUPPORT IS PROVIDING TEAS AND CAKES ON THE DAY AS WELL AT THE NEUROSUPPORT CENTRE IN NORTON STREET JUST UP THE ROAD FROM THE HALL

HOPE TO SEE YOU ON THE DAY OR ON THURSDAY 24TH

THANKS FOR ALL YOUR SUPPORT

ALAN CLARK

MORE NEWS FROM THE BACK PAGE

2010-06-13T15:31:00.000+01:00

VOLUNTEERS MEETING

THE NEXT VOLUNTEERS MEETING WILL BE ON

TUESDAY, 22ND JUNE, 1.00-3.00pm with lunch before the meeting starts. Check the agenda enclosed

Volunteers update

A warm welcome to our new volunteers, Verity Kent., Sally who is on a 13 week placement with WLS Sheryl Brooks and Sharon Campbell. Please say hello & join with me in wishing them an enjoyable experience during their time (whether long or short) with Neurosupport.

ZEN Teachings

4. Always remember you're unique. Just like everyone else.

5. Never test the depth of the water with both feet..

8. If at first you don't succeed, skydiving is not for you.

11. If you tell the truth, you don't have to remember anything.

14. Good judgment comes from bad experience ... and most of that comes from bad judgment.

15. A closed mouth gathers no foot.

17. Generally speaking, you aren't learning much when your lips are moving.

MEET THE WALTON CENTRE GOVERNORS

2010-06-13T15:27:00.000+01:00

Where: The Clinical Sciences Building on the University Hospital Aintree site

(next door to the Walton Centre).

When: Thursday, 24th June, between 4.30pm and 7pm

The Merseyside & Cheshire Governors of the Walton Centre are launching a new event. They are asking the public to come along to find out more about the work under way at the Trust and give their opinions on the hospital (the UK’s only specialist neurological NHS foundation Trust). Various neurological charities and other health organisations will also be there to talk to anyone interested in finding out more about specific conditions, including Merseyside Regional Epilepsy Assoc. Alzheimer’s Society, Huntington’s Disease Assoc. and Parkinson’s. Stroke. MS. Carers Liverpool

Everyone is welcome, members and non-members alike. Admission is free and refreshments will be available.

REMEMBERING AMEENA ROBERTS

2010-06-13T15:23:00.001+01:00

How do you say goodbye to someone you have worked with for 10 years?

Ameena Roberts was a bit like me, someone who has been part of Neurosupport, on a Tuesday for a long time, along with Jessie (now retired), Margaret (now doing a different day) Wendy and me. Over those 10 years, as I got to know Ameena and her husband Phil, one thing you noticed about her was her smile, she could make the grey day brighter in that moment when you saw her. Her sense of fun and laughter was always with her. She had problems with her health over the years, but she kept smiling through all her bad times, as well as the good.

Over the last 2 years Ameena had been in and out of hospital, (more in than out I’m afraid) but last year she did put in a brief appearance on reception, taking her old job back answering the phones. She and Phil joined us on our canal boat trip in October last year and even when we were all cold towards the end of that day, Ameena still kept smiling. For a brief moment in time we were all back together again and recaptured our sense of fun and laughter, remembering our times together, when it became clear that Ameena would not return to work again. Over the last year I have visited Ameena in hospital many times, my last visit just a week before she died, and even then although she was very ill, she still had her smile and her spirit always shone through, something that I think we will all miss, I know I will.

I would like to say thank you to everyone who wrote on the card and contributed to the collection for Ameena, which Phil has donated to ward 19 at Aintree Hospital, where Ameena and Phil were both looked after; Phil said to me the staff went that extra mile for them both The money will be divided between buying a piece of equipment for the ward and the nurses social fund. Alan Clark.

NEURO NEWS— NEWSLETTER FOR VOLUNTEERS OF NEUROSUPPORT MAY/JUNE 2010

2010-06-13T15:09:00.003+01:00

MAY/JUNE 2010 ISSUE 15

CELEBRATION OF VOLUNTEERS’ WEEK

The first week of June was volunteers’ week. Volunteers’ week is an annual event which celebrates the fantastic contribution that millions of volunteers make across the UK, a time when we all get a pat on the back. The week plays a huge part in raising the profile of those who regularly contribute to society in this way, while inspiring others to get involved too.

On the 1^st June, we met at Neurosupport for our celebration, with tea, cakes and company. Our chair of trustees Mr. Ken Morris and his fellow trustee David Britt joined us. Mr. Morris later presented certificates to volunteers. It was good to see some new faces, along with shall I say “The Usual Suspects”, but in a good way.

The raffle was won by Ron Kermode, his prize being a lovely basket of toiletries, which I know has now been divided between his daughters, after I mentioned to him that the beauty treatment wasn’t working. We all enjoyed the tea & cakes, along with lots of catching up.

So why do we volunteer? For me the answer is simple “To give something back”. This is probably the most common answer, along with “To meet other people”. There is of course the fringe benefits, i.e. food in the guise of Tony (“There is food left from the buffet, as some didn’t turn up for the meeting,”) Bonner. If you happen to work on the day when Tony says “help yourselves to food”, a plague of locusts springs to mind.

Recently, when we were asked by Danny Start to write something about ourselves, that he could use when the media contact him for items about Neurosupport. I had, as it happens also been asked to write my story, from the view point of a carer for someone who has had a Brain Haemorrhage, (in another role I am on The Brain Haemorrhage Support Group Committee). Here are a few extracts from my story, they may be something other carers will read & perhaps relate to. If you would like your story to be used either by Danny, contact him in the first instance, he can help you (if needed) to write your story. Let Danny know if you want it to be featured in our newsletter, he will then pass it to me for inclusion in the next issue; so to part of my story.

THE STORY OF A CARER, ALLEGEDLY,

AND WHY DAFFODILS MEAN SO MUCH

So why do daffodils mean so much? After 5 weeks of not leaving the house, (the shaved head down one side is not the best look on a woman), but with gentle coaxing, we had a walk down to Sefton Park and sat on a bench, surrounded by daffodils, in full bloom, for what seemed a life time, we both knew that we had been lucky, and life as we knew it had changed forever, we had been given that second chance.

Why allegedly a carer? well I am not sure who looks after who, as I have some health problems and as we both grow older we have slipped into a rhythm of life that suits us both. As I write this, in the Spring of 2010, 14 years later, the daffodils are still in bloom but some are fading and dying. I remember that time on the park bench, we both do, that wonderful day when we sat surrounded by daffodils. Life has been different for us both, work was not possible but volunteering for me was. We had gone to a meeting about brain haemorrhage and a possible support group that was held in the then Glaxo centre, (now Neurosupport) in Liverpool city centre. Over the coming months we went to meetings at this centre, by now 2 years had passed, and when I heard they were looking for volunteers to help staff the patient information desk at the new Walton Centre I signed up. “To give something back”, a phrase you hear a lot in volunteering, so in September 1998 I went on an induction course and have been here ever since. My role has changed over the years, although I still volunteer, I now also represent the volunteers at staff meetings, write a newsletter, and contribute to our own blog. Following my long association with The Walton Centre, when it achieved Foundation Trust status in 2009, I became a hospital governor. One of my other volunteering roles is being a committee member for The Brain Haemorrhage Support Group, a cause very close to my heart. To give my time and to help others in a similar situation, this has given me the greatest reward of all. So when our lives changed in 1996, maybe things did happen for a reason who knows. What I do know is that every year we always enjoy the daffodils and remember.

Alan Clark.

SOME MORE PICTURES FROM OUR TEA AND CAKES FOR VOLUNTEER WEEK 2010

2010-06-04T15:59:00.001+01:00

2010-06-04T15:58:00.000+01:00

TEA PARTY JUNE 1ST 2010

2010-06-04T15:56:00.000+01:00

NEURO NEWS MARCH APRIL 2010

2010-04-25T07:46:00.004+01:00

I THINK WE CAN WORK OUT WHERE THIS SHOULD BE
THIS REFERS TO WHAT HAPPENS IF YOU DON'T MAKE THE LITTLE BOYS ROOM

Snatches of conversation and other things.

Am I getting too old? A question I ask myself most days. The world has changed so much, from coal fires to central heating, from press button A to walking around with a phone.

I had a conversation with a friend the other day about someone, who is (let’s just say a little bit younger than both of us in their years), still in school and who was wondering what coal was? (see I told you I had a bus pass). “How do you build a fire” was the question?, the young grandson asked when my friend collected him from school.

When using my pass, now and again I listen to snatches of conversation on the bus, “I’m on the bus, I should meet you in the Pilgrim in about 5 minutes”, “Did you get that email I sent you the other day about that 4 page spread” or (at the religion that is Saturday’s Greatty Market) “What size does your Tony take? they have some coats here for only £5.00” and the last one I heard, as I was visiting that well known restaurant Mackey Dees with my great-nephew, (where else do you go with an 8 year old after school, when he has had a hard day killing baddies with me on a PS3 game before school, then he had to give a presentation using his pen driver (his words) on Cocoa Beans to his whole IT class, he did get a clap when he finished so he must have got it right).

Without going into too much detail it involved the little boy’s room and a conversation on the mobile phone in the only last place where you can have a quiet reflection on life and other things, needless to say there was much laughter when we related the story to Sally.

But do we need to hear all this chatter that is going on around us?

(The picture on the right is an example of what may happen if you don’t make the little boy’s room.)

There are other snatches of conversation that I hear too, “I forgot to ask the doctor about” or “What did he mean by that, what does it all mean?”, “What’s an MRI scan?”, “How long will I have to wait for the ambulance?”. These are snatches that I hear while I sit at the Patient Information Desk at The Walton Centre. Sometimes these are punctuated with tears and the frustration of the diagnosis that the doctor has just given, these snatches of conversation have changed their lives and the lives of the family around them, forever.

To all the snatches of conversation that we hear as we go about our daily lives, they are all important to the people holding the conversation, even the man in the little boy’s room.

VOLUNTEERS PROFILE

My name is John Evans, a volunteer for “Neurosupport”. I think I’m in my ninth year (maybe tenth) and the majority of my volunteer time is at the “Information Desk”, at the Walton Neurological Centre.

I am also a volunteer for the Merseyside branch of the Myasthenia Gravis Association and have recently become chairman, for a second time. Two years ago I had completed seven enjoyable years for the association.

In November of 2009 we organised a charity fundraising ball at the “Marriot Hotel” in Liverpool for the association. To raise funds, it was decided to have an auction at the ball, beside a four course meal and entertainment. Items included in the auction, were signed shirts from different football clubs (i.e. Wayne Rooney, Stephen Gerrard, Tim Cahill, a Rangers team signed shirt and a limousine for ten persons) and many more. One of the committee members worked extremely hard in obtaining the items.

An amazing amount of £11, 000 was raised. This helped the branch to raise an amount of £21,000 for the year and we were rewarded with the Charles Read trophy, a trophy awarded each year to the branch that has raised the largest amount through fundraising. (See photo)

We were so delighted that we are currently arranging another ball for 27^th November 2010. If you wish to contact John concerning MGA or maybe make a donation please phone 0151 480 5231.

On a personal note, I attended the MGA AGM (How many points would you get on Scrabble?) on 27th April, to talk about Neurosupport and The Walton Centre, where I received a very warm welcome from John and all the members, so thanks for the invite.

Which brings me on to the advert for the forth coming meeting in The Walton Centre

MEET THE WALTON CENTRE GOVERNORS

As you may be aware, someone elected me a governor, so thank you to those 2 people, who can now come along and meet us all from Cheshire and Merseyside 12 in total on 24th June starting at 4.30pm at the Clinical Science Building just behind the Walton Centre (the big white building) and have a talk and get some information. Everyone is welcome, members and non-members alike. See the full article in the latest Glance and Neuromatters and keep a look out for more information on posters nearer the time.

Minutes from Volunteers Meeting 22/02/10

Maureen welcomed and thanked those present for attending. Those present introduced themselves and their role.

Staff Update/Move

Maureen informed the group that finance and admin staff will be swapping with Working Life service staff

Alec Hughes will be working full time from the beginning of March. Volunteers requested he give a presentation of what he does at the next meeting.

Fund Raising

Maureen set a date for the fundraising committee to meet.

The aim will be to come up with several ideas and take these forward.

Maureen informed the group about the work being done with Tesco. Overall aim of which is to become Tesco charity of the year and raise awareness of Neurosupport.

Alan Clark mentioned his idea for a ‘Head Matters’ event.

Volunteers suggested several events we could get involved with.

Health and Safety- DVD and Evacuation chair demonstration

Chris wall showed a health and safety DVD this can be shown in small chunks

Maureen informed the group about the successful capacity builders grant and the alterations this would bring, new lighting, automatic doors, smart board etc.

New Telephones and telephone training

The new system is imminent a training session will be set up as soon as it is complete

Christmas party. Alan asked volunteers what they thought of holing the party outside the building.

Following discussion they agreed to hold it in the centre on alternate years.

Volunteer week /carers week. The group were asked for ideas on what they would like to do during these weeks.

Any suggestions for a volunteer day out this year are requested but consideration on how to fundraise for this needs to be addressed

Training for 2010 Training for the coming year was identified as

Diversity

Disability Awareness

Date and Time of the Next Meeting Thursday 29^th April 2010. 1-3pm

Morris, an 82 year-old man, went to the doctor to get a physical.

A few days later, the doctor saw Morris walking down the street with a gorgeous young woman on his arm.

A couple of days later, the doctor spoke to Morris and said, 'You're really doing great, aren't you?'

Morris replied, 'Just doing what you said, Doc: 'Get a hot mamma and be cheerful''

The doctor said, 'I didn't say that... I said, 'You've got a heart murmur; be careful..'

**********

I like long walks, especially when they are taken by people who annoy me.

I have to walk early in the morning, before my brain figures out what I'm doing..

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

FOR SALE ADS

JOINING NUDIST COLONY!
Must sell washer and dryer £100.

FREE PUPPIES
1/2 Cocker Spaniel, 1/2 sneaky neighbour's dog.

FOR SALE BY OWNER.
Complete set of Encyclopaedia Britannica, 45 volumes. Excellent condition. £200 or best offer. No longer needed,
Got married last month. Wife knows everything.

Volunteers update

A couple of the volunteers from the Walton Centre Patient information desk have recently left, Joanne Hurley and Maria McGowan. I worked with them both and wish them well for the future

Disclaimer-The opinions expressed in this newsletter are personal and do not reflect the opinions of Neurosupport

A couple of the volunteers from the Walton Centre Patient information desk have recently left, Joanne Hurley and Maria McGowan. I worked with them both and wish them well for the future

CHANGES

2010-03-15T08:52:00.002Z

NEUROSUPPORT IS CHANGING. OVER THE LAST FEW WEEKS YOU MY HAVE NOTICED SOME WORK AND MEN IN THE BUILDING HELPING US CREATE A NEW OFFICE SPACE UPSTAIRS AS WELL AS THE NEW AUTOMATIC DOOR OPENERS ON TOILETS.

I HAVE MISSED THE LAST FEW WEEKS AT THE CENTRE DUE TO TOO MANY MEETINGS THAT SEEM TO HAVE SPRUNG UP FROM NOWHERE. SO I HAVE HAD TO HAVE SOME SORT OF HOME LIFE FOR SALLY SO I TOOK THE EASY OPTION AND HAD A FEW WEEKS OFF INCLUDING TOMORROW WHEN I WILL BE ATTENDING A GOVERNORS MEETING IN THE WALTON CENTRE IN THE EVENING. WHICH BRINGS ME TO WE ARE GOING TO HAVE A CONSTITUENCY MEETING 24TH JUNE 4.30PM TO 8.OO PM AT THE CLINICAL SCIENCES BUILDING ON THE AINTREE SITE JUST BEHIND THE WALTON CENTRE SO IF YOU WANT COME ALONG AND JOIN IN ALL ARE WELCOME AND WITH LUCK WE SHOULD HAVE TEA AND CAKES ON THE AGENDA.