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This This is the August 2013 edition of "The Lifeboat" the monthly magazine from the South Cornwall Branch of The MS Society of Great Britain. Inside - the latest news on the drug Nuedexta, being approved for MS. The latest news about PIP's. The latest news and pictures of The Cornwall Readathon. The launch of our Young People's Group. Introducing new Committee Member's. The report on our most successful "Get Together's" that we have ever had !!! Multiple Sclerosis Society. Registered charity nos. 1139257/SC041990. Registered as a limited company in England and Wales (07451571).
Citation preview
South Cornwall Branch
Monthly Magazine
The Lifeboat
August 2013
Coming soon a 1940’s Night, Coming soon a 1940’s Night, Coming soon a 1940’s Night, Coming soon a 1940’s Night,
look out for more details next look out for more details next look out for more details next look out for more details next
monthmonthmonthmonth
1
MS News
Page 3 Nuedexta drug approved for
people with MS.
Government to re-consult on PIP
mobility criteria
Page 4 Thinking about a supported short
break?
Zebrafish research gives clues for
myelin repair Page 5 Thought for the month
Page 6 Sky Dive
Page 7 Read-A-Thon Page 8 Read-A-Thon Page 9/10 Quiz page
14
Page 11 Young peoples group
Page 12 Members
Page 13/14 The get together
Page 15 Megan’s page
Page 16 Carwinion
Page 17 Carers page
Page 18 Events
Page 19 Information page
Cover page: A good reminder that there is going to be a 1940’s evening in the Autumn
this year so you can dress up in your 1940’s outfits and enjoy the evening, there will be
food and music, 1940’s of course.
Watch out for details in next months magazine.
Inside the Lifeboat
this month
2
Chairman’s Report
Editors Note
Hi Everyone
Yet another busy month
has flown by with lots
developing in the
pipeline.
Great news from Mike
about the replacement
for Malcolm, we all welcome Hilary aboard.
The Money raised by Chapman family is a
welcome addition to our funds.
I am pleased to say that the get together on
29th July was a great success, the venue
was full and for a moment I thought it
would not be enough room but there was
and everyone had a great time.
I am now working on the next theme. The Read-A-Thon awards have taken
place, what a great experience this has
been and MS awareness within schools
has certainly increased, some of the
schools pupils I have re-visited after a year
still recall the MS presentation and its
content, and of course there’s the money
raised to help people with MS. September
see the next round of the MS
Read-A-Thon.
Hello everyone.
I am very pleased
to announce that
when Malcolm
Thorne retires
soon, a young lady called Hilary has agreed
to replace him. Of course no one can fully
replace Malcolm because he has with his
wife Jackie been very active and supportive
members of our Branch. Both have been
good friends of mine with the ability to bring
unique qualities rarely found nowadays. I
am talking as they have left already but they
are leaving in December. The Chapman
family continue to raise money for us at car
boot sales and recently accepted a very
generous offer from Hayle Rugby Club of a
whole bucket of pennies donated by the
public. To our surprise it contained over
seventy pounds.
If there are any artists out there, I have an
old strong artists easel at home going
begging. There are loads of things that I could
ramble on about but there is only so much
that you can take, so I will let you relax and
continue with reading our fantastic, expertly
compiled, very interesting ( I wish I could
remember all the exact things Jasper said
the magazine contained ) Do you find him
like me soooooooo funny! and a creep!
MikeMikeMikeMike
I must thank Mike May who I have dragged
out at all hours to take pictures of the
presentation of awards, I can recall starting
at 7.00am in Penzance and finishing at
3.00pm in Truro having visited more than
one school in the county. Thanks Mike.
Mike May also comes with me to film the
awareness DVD, he is our camera man as
well as our Web Manager.
Look out for our 1940’s evening in the
autumn, it promises to be great fun, you
can get dressed up in your best 1940’s
outfit but watch out for Mike Georges
choice of costume, we wait with baited
breath!
Another exciting venture is our Young MS
group, read about it on page 11 and if you
are interested get in touch we will be
pleased to hear from you.
The last Carwinion open day for MS is on
the 21st September, please make an effort
to support this event, we can’t thank them
enough for their support over the years and
it will be a sad loss to the South Cornwall
Branch.
MMMMaaaallllccccoooollllmmmm
3
News from the MS National Centre
Nuedexta drug approved for people with
MS
Nuedexta, a drug
used to help
manage
uncontrollable
emotional
outbursts,
has been
approved for use in Europe. We believe it
will make a significant difference to people
with MS who experience the condition.
Nuedexta was first approved in the USA in
2010, and the benefits of the drug include
its ability to reduce the number of episodes
of uncontrollable emotional expression.
The roll-out of the drug in the UK and
Europe, as granted by the Committee for
Medicinal Products for Human Use
(CHMP), will provide significant respite to
people experiencing this condition who
require support to help manage it.
Uncontrollable emotional outbursts in MSUncontrollable emotional outbursts in MSUncontrollable emotional outbursts in MSUncontrollable emotional outbursts in MS
Uncontrollable bouts of laughing or crying
which are unrelated or disproportionate to a
person’s emotional state affect around 10
per cent of people living with MS. It’s
something that can be distressing,
embarrassing and confusing for people
living with the condition, including family
and carers.
It’s also known as ‘affective release’ or the
‘Pseudobulbar Affect’ and is thought to
come from MS-related damage to nerves in
the brain that control the formation,
modification and expression of emotions.
The emotional outbursts can sometimes
lead to problems recognising that someone
with MS is really troubled and that real
problems aren’t taken seriously.
Our MS Essentials on mood, depression
and emotions has more information on
affective release and other emotional
symptoms of, and reactions to, MS.
A positive stepA positive stepA positive stepA positive step
Ed Holloway, Head of Care and Services
Research at MS Society said:
“The MS Society welcomes the news that
Nuedexta is being made available in the UK
and Europe. A significant number of people
living with MS experience ‘affective release’,
and the introduction of a new treatment
option to help manage and treat the often
distressing symptoms is a really positive
step.”
For help and support for any emotional
issues, please contact our Helpline.
Government to re-consult on PIP mobility
criteria
The Government has
announced it will
review a recent
decision to change
mobility criteria for
Personal
Independence Payment (PIP).
The u-turn means people with MS, and
other disabilities, will be able to raise their
concerns at changes which would cause
large numbers of people to miss out on
fundamental support.
Devastating changesDevastating changesDevastating changesDevastating changes
The move comes after the MS Society and
50 other charities which form the Disability
Benefits Consortium (DBC) voiced
concerns that the strict mobility criteria for
PIP would have a devastating impact if it
wasn’t reviewed.
The DBC highlighted that if people can walk
20m even using aids such as sticks they
wouldn’t qualify for the enhanced rate of
the benefit,
4
The Good Care Group, an award-winning
care company, have developed a new
home respite and holiday care service for
people with MS, as a result of working with
the MS Society. The new service is available from 1 June
and enables people with MS to access high
quality live-in care services for short periods
of respite care. The Good Care Group’s professional carers
are receiving specialist training about MS
from the MS Society.
and could lose up to £1,800 a year or their
Motability vehicle. Many people rely on this
to maintain their independence and live
their daily lives.
Positive step forwardPositive step forwardPositive step forwardPositive step forward
Claire Nurden, Senior Policy and
Campaigns Officer at the MS Society and
Co-Chair of the DBC said:
“We are extremely pleased that the
Department for Work and Pensions has
decided to review this vital area of the PIP
benefit. It’s a crucial opportunity for the MS
Society and people with MS themselves to
highlight the potentially devastating impact
this policy could have on people with the
condition.
"If the policy is changed as a result of this
consultation, it will be a positive step
towards ensuring that all people get the
right access to vital support in order for
them to retain their independence and
everyday way of life.”
Help change policyHelp change policyHelp change policyHelp change policy
If you think you‘ll be affected by the 20
metre rule, either through loss of the upper
rate of the mobility component of DLA or
the loss of a Motability vehicle, we want to
know about it.
Please email [email protected]
and we’ll tell you how you can get involved
in the campaign. The sooner you get in
touch the better as the consultation ends
on Monday 5 August.
Thinking about a supported short break?
They have also been working with a
specialist MS service provider to ensure
their carers have a true understanding of
MS in order to provide the very best
support. How it works
Following an assessment, clients purchase
a period of one week of care. This can be
taken in one go or can be split over two
shorter periods (a minimum of three nights)
over the following six months. The care can
be delivered at home or away (ie. in
accessible accommodation). Future periods
of care can then be booked in minimum
periods of three nights. This specialist MS service is available as
either:
♦ A live-in basis across England and
Scotland
♦ A holiday service that enables you to
take a carer with you wherever you go
in the UK or overseas. For more information or to discuss your
specific needs contact The Good Care
Group on 08000 234 220, or
[email protected] or see
their website at
www.thegoodcaregroup.com/ms. The MS Society’s Short Breaks and
Activities Fund can provide grants for the
costs associated with short breaks and
holidays with care. To find our more and to
apply, call 020 8438 0700 and ask for a
member of the grants team or email
Zebrafish research gives clues for myelin
repair
Researchers based at the MS Society
Centre for Translational Medicine, University
of Edinburgh, have used zebrafish to
understand how myelin repair works. The
results could give important clues on how it
doesn’t work as efficiently in people with
MS.
5
Ros Parker is going to be
writing our thought for the
month and August is her
first.
Welcome to the Lifeboat
Magazine Ros
LIFEBOAT – THOUGHT FOR THE MONTH
AUGUST AUGUST AUGUST AUGUST
Pushing my rollator up what used to be a
gentle slope but is now something akin to
Everest, I was making my way to the
doctor’s surgery; a journey which in the ‘old
days’ would have taken me perhaps three
or four minutes. Today I left just after ten for
my 10.35 appointment. Plenty of time to
stop for a rest! As I walked, I got to thinking
how lucky I am. ‘I have all the time I need to
get there’, I thought, and silently thanked
God for my good fortune. I met a friend on
the way so had a perfect excuse to stop. It
was good to have to rest for a minute or
two but it was what she said as we parted
that set me thinking; “Take care”, a
common enough thing we say often say on
parting. Normally I would have been sitting
in my wheelchair and the person who
‘takes care’ of me would be the one doing
the walking. Another thing to thank God for!
If only he had known when we married 48
years ago what he would be doing now......
How easy life used to be. Did I ever thank
God then? No, I don’t think I ever did. Now
I know how truly blessed I am to live in this
beautiful county, to have a great deal of
support from many and various people,
from doctors and social services personnel
to friends, and even strangers, not
forgetting of course the South Cornwall MS
Society and Merlin. Whenever things look
bleak I try to remember all the blessings I
have.
Until the next time, I promise to pray for all
you members and carers. And may your
God watch over you.
Ros Parker
The team used zebrafish, a type of tropical
fish, because they share more than 80 per
cent of the genes associated with human
diseases. They’re also transparent, which
means researchers can look at their
nervous system without surgical or physical
intervention.
The research, published today in the journal
Developmental Cell, looked at the ability of
individual cells called oligodendrocytes to
generate myelin. The researchers found the
cells have only a very short time period of a
few hours in which to make this protective
coating.
Promoting myelin formationPromoting myelin formationPromoting myelin formationPromoting myelin formation
The researchers are now focusing on how
manipulation of genes and the use of
treatments might promote myelin formation
in zebrafish. We hope the results of this
study will be used to find ways of
encouraging myelin repair in people with
MS.
Dr Susan Kohlhaas, head of biomedical
research at the MS Society said:
“These new results demonstrate, for the
first time, that myelin repair happens in a
matter of hours. Although this is early stage
research, it’s encouraging to see new
techniques being used to tell us more
about how myelin repair works.
"One of the MS Society’s priorities is
developing new myelin repair treatments so
we look forward to finding out about what
the researchers at the University of
Edinburgh are able to achieve next.”
Together to beat MSTogether to beat MSTogether to beat MSTogether to beat MS
Around 100,000 people in the UK have
MS. It affects two million more.
We offer hope for the future by investing
millions in research, and help for today
through our information, support and
campaigning.
6
Sky dive
This is one brave lady, Rebecca Barker-
Brown is the Executive Head at Lanlivery
and Darite schools, having supported the
Read-A-Thon Rebecca is now going to
completed a sponsored sky dive in aid of
MS.
By the time you read this magazine
Rebecca would have completed the dive
but you can still send in your sponsor
money. All the money raised is coming to
the Cornwall MS Branches.
How to sponsor:How to sponsor:How to sponsor:How to sponsor:
Make cheques payable to mss South
Cornwall and send them to me, editors
contact details are on the back page.
Please support Rebecca if you can, we
really appreciate her efforts and support
and she is jumping out of an aeroplane for
you.
MalcolmMalcolmMalcolmMalcolm
Is there anything I can’t do?Is there anything I can’t do?Is there anything I can’t do?Is there anything I can’t do?
Of course I have been skydiving for
years, I could give Rebecca a few tips
but it will be all over by the time this
magazine goes out.
I have the advantage of being able to flap
my ears so I don’t spill my tea!!
Jaspers Joke:Jaspers Joke:Jaspers Joke:Jaspers Joke: A blind man was describing his favourite
sport - parachuting. When asked how
this was accomplished, he said that
things were all done for him: "I am
placed in the door and told when to
jump. My hand is placed on my release
ring for me, and out I go." "But how do
you know when you are going to land?"
he was asked. "I have a very keen sense of smell and I
can smell the trees and grass when I am
300 feet from the ground," he answered. "But how do you know when to lift your
legs for the final arrival on the ground?"
he was again asked. He quickly answered "Oh, the dog's
leash goes slack."
I hope to have some pictures for the next
magazine.
Let me know if you feel like jumping out of
an aeroplane or have any exciting fund
raising events.
Read-A-Thon news
7
July saw the presentation of awards in all but two of the schools that
took part in the Read-A-Thon. Working with these schools has been a
pleasure, I must thank the Head Teachers and Staff for their valued
contribution to the Read-A-Thon.
Cape Cornwall SchoolCape Cornwall SchoolCape Cornwall SchoolCape Cornwall School
Cape Cornwall school has over 400
students and has supported the MS
Society with the Read-A-Thon and the
awareness DVD. Our thanks go to Head Teacher Mrs Julie
Nash, Librarian Mrs Megan Nelhams
and Emily hill Deputy Head as well as all
the staff and students who have and are
still supported us.
Cape Cornwall School
Lanlivery School
Lanlivery SchoolLanlivery SchoolLanlivery SchoolLanlivery School
Lanlivery School was one of the first to take on the Read-A-Thon challenge and has held
other fundraising events for MS. We thank Mrs Rebecca Barker-Brown, her staff and all
the students for their continued support.
You will see Rebecca Barker-Brown on Page ? for her sky dive, we hope it all went well
and perhaps we can publish some pictures in September’s magazine.
8
St Mary’s C of E School
As you will know from previous magazines
students at St Mary’s School took part in
the Read-A-Thon and raised a great deal of
money, but they where also winners of the
Oritse JLS prize.
You can see them here as proud owners of
the Hat and signed photo of JLS.
St Mary’s C of E School supported us well
with the Read-A-Thon. A great thank you
goes to Head Teacher Hilary Tyreman and
her staff.
Darite School
The executive head teacher at Darite School is also the head of Lanlivery, Mrs Rebecca
Barker-Brown, as you can see we had a great time presenting the awards and thank all
the students who took part and the school staff, it is this kind of support that make our
relationship with schools so successful.
Rebecca Barker-Brown is going to complete the Read-A-Thon again in September.
Devoran School
I must thank Mike May who I have
dragged out at all hours to take
pictures of the presentation of awards, I
can recall starting at 7.00am in
Penzance and finishing at 3.00pm in
Truro having visited more than one
school over the county.
Thanks Mike.
Mike May also comes with me to film
the awareness DVD, he is our camera
man as well as our Web Manager.
Pictures by Mike May
9
August quizAugust quizAugust quizAugust quiz July Quiz answersJuly Quiz answersJuly Quiz answersJuly Quiz answers
Target
£2,000.00
Actual
to date £914
Money Boxes
Happy birthday to:
1st1st1st1st Bertha Ferguson
5th 5th 5th 5th Amanda Durnford
17th17th17th17th Tony Parkes
23rd23rd23rd23rd Mr B Clutterbuck
26th 26th 26th 26th Heather Ashton 66
9
What’s this mystery object?
1 LAVA
2 VIEW
3 TURNS
4 OWNS
5 EYED
1 Name the largest fresh water lake in the
world.
2 Where would you find the Sea of
Tranquillity?
3 What is someone who shoes horses
called?
4 What item of clothing was named after
its Scottish inventor?
5 What kind of weapon is a falchion?
6 What is another word for lexicon?
7 Name the seventh planet from the sun.
8 Name the worlds biggest island.
Bingo numbers called in: Bingo numbers called in: Bingo numbers called in: Bingo numbers called in:
January January January January 10, 26, 43, & 61
FebruaryFebruaryFebruaryFebruary 52, 90, 76, & 85
March March March March 5, 30, 46 & 67
AprilAprilAprilApril 13, 49, 23, & 73
May May May May 79, 45, 16, & 28
JuneJuneJuneJune 65, 18, 41, & 87
July July July July 57, 3, 8, & 69
August August August August 83, 59, 71, & 20
SeptemberSeptemberSeptemberSeptember 38, 63, 75, &1
OctoberOctoberOctoberOctober 33, 77, 55, & 89
NovemberNovemberNovemberNovember 51, 86, 48, & 35
DecemberDecemberDecemberDecember 11, 32, 53, & 68
January 13 January 13 January 13 January 13 81, 31, 15, & 25
February 13 February 13 February 13 February 13 40, 22, 78, & 36
March 13 March 13 March 13 March 13 44, 56, 21, & 6
April 13 April 13 April 13 April 13 80, 39, 50, & 74
May 13 May 13 May 13 May 13 42, 84, 24, & 37
JuneJuneJuneJune 13131313 2, 60, 34, & 70
July 13 July 13 July 13 July 13 58, 29, 62, & 7
August 13August 13August 13August 13 14, 66, 12, & 82
September
6 BETS
7 DELAY
8 LOU
9 MINCE PIE
10 DONOR
What's the difference between roast beef
and pea soup? -- Anyone can roast beef.
" What do you call a deer with no eyes?
No eye deer. "
Can you spot the 9 differences 10
July
mystery
object
Did you spot the ten differences?
Poetry Poetry Poetry Poetry
CornerCornerCornerCorner
" What happens when you get scared
half to death twice? "
11
Young MS and
friends
Hi,
My name is Lauren Jenkins and I am the
Young MS and friends group officer for the
South Cornwall Branch of the MS Society. Welcome to the group and what it can offer
you.
Are you a young person affected MS?
Ever wondered what it would be like to
speak to other young people affected by
the condition?
Have you just been diagnosed and need
some help and advice away from the
general MS branch Joining the South Cornwall Multiple
Sclerosis Young Persons group will allow
you to learn and exchange experiences that
other young people have had or are having
when affected by MS
The young peoples support team can help
you to consider future goals and managing
your condition to the best of your ability Realising your potential and abilities!Realising your potential and abilities!Realising your potential and abilities!Realising your potential and abilities!
Sharing experiences with other people can
allow you to focus on what you are good at,
living with MS can be challenging however
you shouldn’t be beaten, together with
friends we can focus on the positives and
develop new and exciting activities. # Who’s
in? The MS young people’s team are here for The MS young people’s team are here for The MS young people’s team are here for The MS young people’s team are here for
youyouyouyou----
Why? Why? Why? Why? Because we understand that it can
sometimes be hard to talk and
communicate with people outside your age
group, talking about the personal things
that MS can bring!
Being able to talk to someone like yourself
can help in many ways. How? How? How? How? Meeting with people with MS will
give you the chance to exchange how the
condition effects you, friends can help with
emotional support~ so lets hear your side
of the story! Understanding what you want from life!
Do you want to learn more about yourself?
Proving activities can help you bond with
new people and talk.
Are you newly diagnosed with MS:Are you newly diagnosed with MS:Are you newly diagnosed with MS:Are you newly diagnosed with MS:
Have you been diagnosed with MS
recently? Do you feel like you don’t know
who to turn to for advice of support?
Young MS and friends can help you to
understand your condition.
Friends can give you the companionship
when learning to cope with being newly
diagnosed.
Having the support of others will help you
to be able to start thinking about the
potential changes that you may have to
make in your life,
however just because you have been told
you have MS doesn’t mean you have to
stop doing the things you love doing~
never stop trying, continue to be a high
achiever. Contact the Young MS and Friends group
and find out more: Tel: 01209 860754
Email: [email protected]
12
In next months Lifeboat magazine: Members pages & Magazine Bingo Youth Group page Young MS and Friends page MS News Megan’s page Branch events Read-A-Thon news
Jackie Thorne will be away for a few weeks
so as from 1st March 2013 please make all
voucher requests to Chris Sargent
01209 315386
IMPORTANT NOTICE
South Cornwall Vouchers
Hi Malcolm and everyone I just wanted to say what a lovely time we
had at the recent branch event at the
Carnon Inn. I was able to catch up with
people, meet some new and enjoyed a
'natural looking' make over.
Also, the food was really nice, I did notice
Kev went up a few times…
I have continued to read the pages from
Mary Smith - and by offering this piece, she
must have thought that this would not be
easy reading for some of us at times.
However, as she says, 'People are always
saying they can't imagine how it must feel
to be me...give them some idea of my
predicament.' It certainly does that Mary, I
really had no idea, you're a very brave lady
and your poetry and writing make me
think, thank you.
I feel I should mention Megan on the front
cover: this young lady's picture makes me
smile every time I look at her happy face!
Oh...forgot the quiz… Thanks to all, Wendy and Kev Hughes Thanks for your comments Wendy it’s Thanks for your comments Wendy it’s Thanks for your comments Wendy it’s Thanks for your comments Wendy it’s
always good to get feedback and we always good to get feedback and we always good to get feedback and we always good to get feedback and we
appreciate yours and Kev’s support at our appreciate yours and Kev’s support at our appreciate yours and Kev’s support at our appreciate yours and Kev’s support at our
functions.functions.functions.functions.
We are trying to vary the programme so We are trying to vary the programme so We are trying to vary the programme so We are trying to vary the programme so
“everyone”, give us your feedback, we “everyone”, give us your feedback, we “everyone”, give us your feedback, we “everyone”, give us your feedback, we
nnnneeeeeeeedddd iiiitttt!!!!
Important notice Helston & Lizard Group meeting: Wheal
Dream Restaurant, Helston
from 11.00am to approx 2.00pm. Lunch at
discounted rate.
This has changed from the last Tuesday to
the last Monday of the month.
Correction: Physiotherapist Wendy Lobb has had
incorrect contact details issued resulting in
patients being unable to contact her for
treatment
The correct details are:
Telephone number: 01209 698896
Wendy Lobb contact details
13 5 5 13
The get together
What a cracking get together we had at the
Carnon Inn, so many people and so much
going on.
This must have been one of the best get
togethers yet, the room was packed with
people from all areas, even as far away as
Fowey.
The makeovers were a popular feature
particularly with the men! Although for
many of us it was too late, there wasn’t
much to work on the ladies of course
looked beautiful.
We must thank Karen Richards from
Body Shop for her time with us. Her
work made people feel special and
pampered.
The QuizThe QuizThe QuizThe Quiz
The quiz got us all thinking, there was a
great deal of head scratching going on but
of course the brainy ones got there in the
end and won a box of chocolates which
didn’t appear to last very long, I think that
Mike George had a lot to do with it!!
It was lovely to see so many people with
their families. this made it an event for
everyone to enjoy.
Get together’s are difficult to judge with
varying tastes and requirements that have
to be catered for but the answer seems to
be in variety with different activities to suit
all ages.
If you would like to see a particular activity
at our next get together please let me
know and I will try to arrange them.
There is also the distance problem, we
were pleased to see Susan Creese and
family all the way down from Fowey but
not everyone can travel far, so we will be
holding our get together in different parts
of our area, watch out for the next one it
could be near you.
14
12
6 14
The food was good and lots of people had their photo taken so all in all a very good
afternoon. Don’t miss the next one! Our thanks go to:
Karen Richards Makeovers
Nikki Jenkin Quiz and raffle
Mike May Photography
15
Megan’s page
Megan’s page
Megan’s page
Megan’s page
15
Coma Story part III
Last month…
The machines
suddenly start
beeping loudly.
Nurses run into the
room and usher me
outside… I try to look in through the glass
window but I can’t see anything, the
beds surrounded by bodies of doctors
and nurses trying to find out the
problem. I turn around and sit in one
of the blue metal chairs that are
screwed into the wall. I must have
fallen asleep because the next thing I
know there’s a nurse sitting next to
me. I sit up straight and smile. She
introduces herself and tells me what
happened. She explains how Taylor had started
to breath by herself and that the
machine was just beeping to tell them
that it wasn’t needed anymore. She
talks to me like I’m five but at least
she speaks English unlike some of the
other nurses around this place,
saying all of those big words that
nobody really understands. I’m
speechless, I know that this doesn’t
mean she’ll definitely be OK but its
hope. I walk back into the white room she’s
lying there in the bed. I stand at the
end of the bed and watch her
breathing and I know that she’s trying
to come back to me. I stay at the
hospital until ten and then get the bus
home. I fall asleep straight away once
again visiting my dream world.
The next mornings a bit better than
the one before. I get dressed and pull
a brush through my hair. I then trot
down the stairs and waltz into the
kitchen where the smell of bacon
drifts up my nose making my mouth
water. Finally someone who can cook.
I look at the table where everyone’s
sat. Looking at me. I smile at them
and they all return it carrying on with
their breakfast. I get some bacon and
eggs and sit down digging in straight
away. By the time I’ve finished
everyone’s watching TV. I put my plate
into the sink and join them. At one I
get a lift to the hospital. I push the
door open to find a woman sitting in
my chair. She looks at me and without
saying anything gets up and leaves.
Who was she? How did she know my
sister? What was she doing here? All
of these questions were going around
in my mind.
I sit in my, now, empty chair and look
at another bunch of flowers that
have mysteriously appeared overnight.
Could they have been from her? And
if they weren’t who were they from? I
talk to her again until I have nothing
else to say. Then I just sit and listen
to her breathing in and out…
Another bunch of
flowers arrived
82
16
JasperJasperJasperJasper
16
Costly ButtonsCostly ButtonsCostly ButtonsCostly Buttons
Pushing a button
Easy, peasy lemon squeezy
Pushing a button
On a micro wave seafood
Easy, peasy lemon squeezy
Pushing a button
On government pressures`
cutting costs and cutting time
Easy, peasy lemon squeezy
Pushing a button
Tied to a chair
Force-fed a frozen meal
Horse meat and puffer fish included
But where’s the care?
Easy, peasy lemon squeezy
Pushing a button
Remorseful, drinking tea at 7(am)
Bullied and tucked-in-bed by 11(am)
Lights-out, fall-out, knocked-out
But no-one there
Easy, peasy lemon squeezy
“nearly half way there”…?
Pushing a button
There is no doubt
How the government push the disabled out
Disability living allowance in question?
to, personal independent payment
What a PIP
Yet another sjambok mock
doing a 20 metre two-seater rock
Leaving the disabled without
A streetcar named desire
Pushing a button
Ambush people into ticking time bomb
boxes
but not the noughts and crosses grind
just another government cost cutting
mastermind
Saving coffers` into 600,000 Coffins`
We have to RANT we have to shout
so 600,000 disabled don’t lose out
NOT SO EASY, PEASY LEMON SQUEEZY C
Carwinion Bring a plant Buy a
plant 21st September
A poem by Susan Creese
Teacher: "Anyone who thinks he's stupid
may stand up!"
*Nobody stands up*
Teacher: "Im sure there are some stupid
students over here!!"
*Little Johnny stands up*
Teacher: "Ohh, Johnny you think you're
stupid?"
Little Johnny: "No... I just feel bad that
you're standing alone..."
Sadly this will be the
last Carwinion open
day for MS.
We need to make this
the best ever so get
down to Carwinion on
the 21st September
and spend some time
and money in the
fantastic gardens. We
can’t thank Carwinion
enough for their
support over the years.
17
Meet Karen Moore our new carers officer,
Karen has taken over from Neville Reed
and we welcome her to our committee.
Karen attended the carers lunch for the first
time and said:
“I went to my first carers lunch on the 20th
of June, which was at the Falmouth Hotel,
the location was lovely with beautiful views
and we had lunch in a nice room around a
large round table. The food and the
company were excellent and every one
seemed to have a good time.
I have obviously been missing out on these
and will be going to more. As a carer myself
I found it very interesting and helpful to
meet others who where at different stages
in their own lives in caring for loved ones.
People were full of helpful information, but
most importantly it gave everyone that
came a chance to relax and have a chat
with each other.
I am very glad that I went and look forward
to the next one. If you are a carer and can
reach the next venue, then I would suggest
that you come along as it is really good”. From Karen Moore
Carers Officer 01872 274188.
New carers officer
FANTASTIC Raffle we have some fantastic
prizes for our coffee morning here are some
a children’s raffle FREE for all children that
come on the morning prizes include 1hour
session for canoeing, teddies, days out,
guess who, t/shirts, swimming, kids world,
and more, we also have a great tombola
a teddy tombola where you win a fantastic
teddy every time. (we have some beautiful
teddies) and a few will have a hidden day
out on them and if your lucky you may win
one and the teddy. Bric a brac with something for all ages we
have some very nice toys kindly donated
from baby up to all ages, lots of hand bags
like new ,jewellery and all we ask is for a
kind donation
Also some very nice books for all ages (we
have some very nice children’s books like
new for both boys and girls). Face painting, glitter tattoos and nail
painting,
Weather permitting we will be having a
bouncy castle, we also will have a visit from
the Toymaster puppy he will be coming
after 1.30 with some goodie bags for the
children and at 2.30 he will be drawing the
children’s raffle, and many more fun things
for all to do and on top of that we have lots
of cakes, buns, and if your not sure, why
not just come down for a bit of lunch we
will have pies, pasties, veg pasties, pork-
pies, vegetarian quiche cakes together we
will make money for a great Cornish charity
The Merlin MS centre, a centre for people
with MS + all cakes, buns, pies etc very
welcome.
For More information contact Bev Burt
through the Merlin Centre
Message from Bev Burt:
On August 9th 10.30 to 3pm at the Merlin
MS Centre
18
2 Dunlop 32” trolley
suitcases. 110 Litres
Capacity, expandable.
Black, used once. RRP £59.99 bargain at £30.00 the pair.
Contact Malcolm Thorne 01209 717237 Don’t miss this bargain!!
Events Events Events Events
CalendarCalendarCalendarCalendar
Christmas LunchChristmas LunchChristmas LunchChristmas Lunch
Christmas lunch 2013 is on the 7th
December at the Membly Hall Hotel
Falmouth. Book your places with Chris
Tel 01209 315386
Free for people with MS
£5.00 for carers
£13.00 for guests More events to come throughout the year! More events to come throughout the year! More events to come throughout the year! More events to come throughout the year!
we are still waiting for more responses from we are still waiting for more responses from we are still waiting for more responses from we are still waiting for more responses from
our events list so give us a call.our events list so give us a call.our events list so give us a call.our events list so give us a call.
Watch this spaceWatch this spaceWatch this spaceWatch this space
Events taking place at Merlin MS Centre
With a year to fundraising you have plenty
of time to join us for this trek of a lifetime.
Contact the centre for more information
01726 885530.
Merlin MS Centre are looking for willing
and friendly volunteers to help with their
supermarket collection days throughout
the year and throughout the county. If you
think you can spare an hour or two to
help then please get in touch with the
centre on 01726 885530.
AugustAugustAugustAugust
Fri 2Fri 2Fri 2Fri 2ndndndnd Johnny Cowling ~Johnny Cowling ~Johnny Cowling ~Johnny Cowling ~ The Cornish
comedian and singer will be at Sticker
Football Club from 7.30pm. Tickets£10
available from the Merlin MS Centre. This
is also the start of the Sticker Vintage
Rally and Country Fair weekend in the
grounds and fields of the football club.
Taking place from 10am on Saturday and
Sunday – loads of fun activities for all the
family with vintage vehicles, kids sports
day, car boot, craft stalls, trade stands,
fun dog show, bingo, inflatable rides,
licensed bar and food
Fri 9Fri 9Fri 9Fri 9th th th th Coffee and Fun DayCoffee and Fun DayCoffee and Fun DayCoffee and Fun Day 10.30am to
3pm at the Merlin MS Centre Bouncy
castle, face and nail painting, stalls,
cakes, pasties, children’s raffle,
Bric-a-Brac and a special visit form the
Toymaster puppy from 1.30pm
Fri 23Fri 23Fri 23Fri 23rdrdrdrd Pop Up Party Malaysian Curry Pop Up Party Malaysian Curry Pop Up Party Malaysian Curry Pop Up Party Malaysian Curry
NightNightNightNight at Merlin MS Centre 7pm for 7.30
start. Tickets £10.00pp available from the
centre September September September September
Sun 15Sun 15Sun 15Sun 15thththth Garden Party and Cream TeaGarden Party and Cream TeaGarden Party and Cream TeaGarden Party and Cream Tea
2.30 till 5pm At Pencarey, Trevilly Lane, St
Teath
Fri 20Fri 20Fri 20Fri 20thththth Pop Up Party Night Tapas EveningPop Up Party Night Tapas EveningPop Up Party Night Tapas EveningPop Up Party Night Tapas Evening
at Merlin MS Centre. The last of our
summer pop up evenings. 7pm for 7.30
start. Tickets £10.00pp available from the
centre
Details subject to change Ellie May, Communications and Corporate Events Manager
Tel: 01726 885530
South Cornwall Branch
events 2013
Sign up is open for the Grand Canyon Sign up is open for the Grand Canyon Sign up is open for the Grand Canyon Sign up is open for the Grand Canyon
TrekTrekTrekTrek---- 10101010thththth----17171717thththth May 2014 Trek.May 2014 Trek.May 2014 Trek.May 2014 Trek. Are you
ready to experience the breath taking
beauty of the Grand Canyon whilst raising
money for the Merlin Ms Centre?
Chairman: Chairman: Chairman: Chairman: Mike George
Telephone: 01872 862031
email: [email protected]
Treasurer: Treasurer: Treasurer: Treasurer: Malcolm Thorne
Telephone: 01209 717237
email: [email protected]
Address Coomar, 3 Chenoweth Close, Camborne
Cornwall TR14 7JR
Voucher Admin Officer: Voucher Admin Officer: Voucher Admin Officer: Voucher Admin Officer: Jackie Thorne
Telephone: 01209 717237
email: [email protected]
Secretary: Secretary: Secretary: Secretary: Christine Sargent
Telephone: 01209 315386
email: [email protected]
M S Support : M S Support : M S Support : M S Support :
Telephone: 01872 274911
Carer’s Officer: Carer’s Officer: Carer’s Officer: Carer’s Officer:
Branch Profile manager and Magazine Editor: Branch Profile manager and Magazine Editor: Branch Profile manager and Magazine Editor: Branch Profile manager and Magazine Editor:
Malcolm Glister
Telephone: 01209 860754
email: [email protected]
Branch Web manager: Branch Web manager: Branch Web manager: Branch Web manager: Mike May
Telephone: 01872 272 957
email: [email protected]
Membership: Membership: Membership: Membership: Betty Alderton
Telephone: 01872 270901
email: [email protected]
Minute Secretary: Minute Secretary: Minute Secretary: Minute Secretary: Moe Fisher
email: [email protected]
Branch Safety Officer and Youth Team: Branch Safety Officer and Youth Team: Branch Safety Officer and Youth Team: Branch Safety Officer and Youth Team: Nikki Jenkin
Telephone: 01736 787089
email: [email protected]
Events CoEvents CoEvents CoEvents Co----ordinator ordinator ordinator ordinator
Fund Raising Manager Fund Raising Manager Fund Raising Manager Fund Raising Manager Vacant
Branch contact details:Branch contact details:Branch contact details:Branch contact details:
Llawnroc, Mount Carbis Road,
Redruth, Cornwall,
TR15 2LD
Tel: 01872 274911
www.mssociety.org.uk/southcornwall Satellite eventsSatellite eventsSatellite eventsSatellite events
1st & 3rd Tuesday of each month:
Trelowarren Arms, Budock Water,
Falmouth, between 11.00am and
2.00pm approx. Coffee and/or lunch.
Open to all. Last Monday of each month: Last Monday of each month: Last Monday of each month: Last Monday of each month:
Helston & Lizard Group meeting:
Wheal Dream Restaurant, Helston
from 11.00am to approx 2.00pm.
Lunch at discounted rate. Every Thursday: Every Thursday: Every Thursday: Every Thursday:
Yoga at the Well Being Centre,
Nance Lane, Churchtown,
Illogan. 11.00am to 12.15pm. with
Carolyn Smith by appointment only. Every third Thursday of each monthEvery third Thursday of each monthEvery third Thursday of each monthEvery third Thursday of each month
Carers meeting at Mike George’s Useful contacts:Useful contacts:Useful contacts:Useful contacts:
MS National Centre: 02084 380 700
MS Helpline: 0808 800 8000
Care Direct: 0800 444 000
NHS Direct: 0845 4647
Editors Contact detailsEditors Contact detailsEditors Contact detailsEditors Contact details:
To send in articles or comments.
Malcolm Glister
Whispering Winds, Crellow Hill,
Stithians, Nr Truro,
Cornwall, TR3 7AQ
South Cornwall Branch Information
Need help or advice, call our
support number 01872 274911
All views expressed in this publication are individual and not necessarily the view or policy of the charity and its supporters.
Multiple Sclerosis Society Registered charity nos. 1139257 / SC041990
Registered as a limited company in England and Wales 07451571