the south cornwall branch of the ms society june magazine 2013
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This is the June 2013 edition of "The Lifeboat" the monthly magazine from the South Cornwall Branch of The MS Society of Great Britain. Multiple Sclerosis Society. Registered charity nos. 1139257/SC041990. Registered as a limited company in England and Wales (07451571).TRANSCRIPT
June 2013
The Lifeboat
South Cornwall Branch
Monthly Magazine
1
Inside the Lifeboat
this month
MS News
Page 3 Legal review into decision to tighten
PIP mobility qualifier
MS care lottery revealed by
ground breaking MS Society
research
Page 4 MS Society volunteer survey
MS Society announces new
research projects
Page 5/6 Life isn’t Fair!
Page 7/8 members page
Page 9/10 Quiz page
Page 11 Young people and newly
diagnosed group
2
Page 12 Henry’s marathon
Anthony Rogers
South Cornwall Branch and the
CAB
Page 13/14 Malcolm and Jackie’s
Northern Lights trip
Page 15 Megan’s page
Page 16 Youth group
Page 17 Read-A-Thon
Page 18 Events
Page 19 Information page
Cover page: I always make two or three designs for the front cover which give me choices
but this time I was debating for some time which design would be on the front cover.
I thought that we needed some summer colour to cheer us up so I chose to put them all
in. Consider them a bouquet of flowers from me
2
Chairman’s Report
Editors Note
Dear members,
sadly, I am
thinking that It is
time for me to
retire as your
Chairman and my thoughts are to join our
treasurer Malcolm and leave in December.
I know it may be considered early in saying
I may be leaving but I am keen to see
branches in Cornwall develop and grow
together and if this does not appear to
happen over the next few months then I
fear my time as the chairman of South
West Cornwall will be over.
I would urge each branch to take the
opportunity to work closely with each
other for the good of our MS community. On a lighter note I must remind all our
carer's that our summer lunch is booked
at the Falmouth Hotel on 20th of June
12.30 for 1.00pm. It is a lovely venue to
have our subsidised meal with us all
sitting around a round table which we
find very conclusive to enable us all to
feel part of a team.
I would also like to encourage other
carers to join our group just give me a
call.
MikeMikeMikeMike
Hello everyone,
Well, as usual its all
happening here in
Cornwall, with Mike
thinking of leaving and
myself not far
behind, if not before.
We need to see some positive development
in our Cornwall branches if we are to
survive well into the future. The first county
branch executive meeting is at the end of
May, after this edition of the Lifeboat goes
to print.
The meeting will hopefully bring some
structure to Cornwall’s branches working
together and even merging in some cases,
this of course will have to be seen.
Certainly my future with the MS society
depend on the executive committee
outcomes. I will report on the meeting in
the July addition of The Lifeboat.
Talking about lifeboats we must not forget
the South Cornwall motto “South Cornwall “South Cornwall “South Cornwall “South Cornwall
consider themselves to be a lifeboat ready consider themselves to be a lifeboat ready consider themselves to be a lifeboat ready consider themselves to be a lifeboat ready
to be launched for anyone affected by MS” to be launched for anyone affected by MS” to be launched for anyone affected by MS” to be launched for anyone affected by MS”
To live up to this statement we need to hear
from you, don’t let issues get you down, we
are here to help you and we are good
listeners.
On a lighter note, don’t forget to book in for
your makeover on the 29th June, myself
and Jasper are already booked in and after
the makeover we are having our photo
taken.
So come and enjoy the afternoon, meeting
people, eating food and having a good
laugh.
Our thoughts go to Alan Sargent who is in
hospital after a fall, we wish him well and a
speedy recovery.
Your letters and articles are coming through
well and I fit as many in as I can. they will
always be published but don’t be
despondent if they do not appear for a
month or two.
There never seems to be enough room for
everything to be said and here I am coming
to the end of my editors notes. Look out for
my report on the first executive committee
meeting, there's a great deal hinging on its
success, please make contact if you have
something to say about what is happening
in your area or you need clarification on
anything at all. MMMMaaaallllccccoooollllmmmm
3
News from the MS National Centre
Legal review into decision to tighten PIP
mobility qualifier
A campaigner has succeeded in his fight
for the High Court to conduct a judicial
review of the decision made by the
Department of Work and Pensions’ (DWP)
to introduce stricter criteria for people
for the mobility component of PIP.
Earlier this year the DWP changed the
distance people had to walk to qualify for
the enhanced rate mobility component of
the disability benefit from 50 metres to 20
metres. There was no public consultation
on this decision.
Over 95% of people with MS currently
receive the higher rate of the mobility
component ofDLA– soon to be changed to
PIP – which often allows people with
mobility problems to pay for an adapted
car, use taxis or purchase walking aids to
help them remain mobile and independent.
What is a judicial review?
Individuals and organisations can seek a
judicial review if they think a decision by a
public body – like the DWP – has been
made unlawfully.
The review, carried out by a judge, looks
only at the way the decision was reached,
rather than whether it was correct or not.
If the High Court decide the decision to
change the walking distance was unlawful,
this could lead to a reconsideration of this
part of the assessment criteria for the
benefit.
Challenging the DWP’s decision
Steven Sumpter does not have MS but his
actions could benefit thousands living with
the condition across the UK. His disability
means he can only walk a few metres with
a stick. He was assessed as eligible for the
higher rate of the mobility component for
DLA but is worried that in the new changes
under PIP mean he’ll miss out on this vital
benefit, especially as he did not have a
chance to put his views to the DWP.
Steven is working with Public Law Solicitors
to take the decision to court.
Karen Ashton from Public Law Solicitors is
representing Steven. She said: “The higher
rate of mobility benefit can make an
extraordinary difference to a disabled
person’s life. But the Government failed to
mention the reduction to 20m in their
consultations and so those who might be
affected did not have the chance to put
their case and explain how devastating the
consequences will be.”
MS care lottery revealed by groundbreaking
MS Society research
Alarming numbers of people with MS in the
UK are facing a lottery when it comes to
accessing the care and support they need
to manage their condition.
Our report, A lottery of treatment and care:
MS services across the UK, is published
today to mark the start of MS Week. It
uncovers major disparities across the UK in
access to MS medicines, social care
support, employment support and health
professionals for people with MS.
Find out more about our MS Week
campaign
It found:
• 6 out of 10 eligible people with MS are
not taking a disease modifying drug for
their condition
• Just two in 100 people with MS use one
of two licensed symptom management
treatments
4
• If you have MS and live in Northern
Ireland you are twice as likely to be
taking a DMT than if you live in Wales.
• Half of those who are struggling
financially and are in need of social care
support are unable to access it. By
contrast, nine out of 10 of people who
are financially comfortable and need
social care are able to access it
• Access to MS nurses, neurologists,
powered wheelchairs and support to
make home adaptations is often based
on where you live, not your clinical
needs
The findings are based on a survey we
issued last year asking people with MS
what services they needed and to what
extent those needs had been met over the
previous 12 months. More than 10,500
adults responded – the largest ever survey
of people with MS in the UK.
Stop the MS LotteryStop the MS LotteryStop the MS LotteryStop the MS Lottery
To coincide with the report, we’re launching
the Stop the MS lottery campaign, calling
for everyone with MS to have fair access to
the treatments and services they need,
when they need them, wherever they live in
the UK. We want every person with MS to
have a personalised treatment, care and
support plan, with two comprehensive
reviews each year.
Nick Rijke, Director for Policy & Research at
the MS Society, said: “Our survey findings
worryingly suggest that the likelihood of
someone receiving a life changing
treatment or service is often based on luck
– like where they live or how helpful their
healthcare professional is – rather than their
genuine clinical need.”
“When it comes to MS drug prescription
rates, the UK ranks 25th out of 27
European countries. Given the relative
wealth of the UK this is simply
unacceptable."
If you would like to view the report and read
about the campaign please follow this link
to the MS Society website: http://
mslottery.mssociety.org.uk.
A big thank you to all of you who
completed the recent volunteer survey. We
had a fantastic response with more than
1,400 volunteers returning the survey.
We heard from volunteers in every part of
the UK, the Channel Islands and the Isle of
Man. It’s encouraging to hear the views of
so many of our volunteers.
The results are now being analysed and
we’ll let you know the full details and our
action plan in June.
If you have experienced any difficulties in
accessing services that you need in
Cornwall, including to disease modifying
therapies/drugs, MS Society service
development officer for the South West,
Andrew Kemp, would be pleased to hear
from you. Where appropriate he will be
discussing local issues with health and
social care professionals and other service
commissioners and providers. His contact
details appear below. Andrew Kemp Tel 020 8438 0767
email: [email protected]
MS Society volunteer survey
We’ve just announced funding for 11 new
research projects, taking our total spend on
new research in 2012 up to £2 million.
Progressive MS continues to be priority,
with research trying to understand more
about the onset ofsecondary progressive
MS, the role of brain inflammation in
progression and exploring exercises that
help with bladder problems. Two interesting
biomedical projects will investigate the role
of the Epstein-Barrvirusin the development
of MS and why remyelination fails in MS.
A novel project will also look at using FES
with robotics to help arm movement and
we have also funded the next stage of a
successful project that identified that using
textured soles could improve balance and
walking.
MS Society announces new research
projects
5
Sent in by Mary SmithSent in by Mary SmithSent in by Mary SmithSent in by Mary Smith
Life isn’t Fair!
by Jonathan Smith, son of Mary On the day I “lose my legs”, what matters
most to me is looking back and knowing
that I made the most of everything that life
had to offer. I was eight when my Mum
“lost her legs” and was confined
permanently to a wheelchair through
Multiple Sclerosis. As a child, whenever I would complain to
my parents that something “wasn’t fair”
Mum would respond “life isn’t fair”. I still
haven’t found a comeback which counters
this response effectively. Ironically, Mum
found herself suffering from an incurable
disease with no understanding of how she
got it and only one certainty – a relentless
loss of physical control until her body was
paralyzed. She was a brilliant and
energetic mum to her four boys, so at
eight years old, whilst witnessing her
horrendous physical demise, the reality
struck me with distressing clarity that truly,
life isn’t fair! Upon this realisation, I decided to adopt a
personal mantra: “tomorrow I might lose
my legs”. Recalling this phrase has helped
me to gain perspective and strength in
tough times, enabling me to compare
whatever ‘unfairness’ was currently
afflicting me to the prospect of losing my
legs. It has also inspired me to be
adventurous, courageous and unafraid of
the “less travelled” path and reminds me
every day of the importance of committing
to achieving my dreams no matter how
unlikely, and most importantly, to live each
day as if it were my last. My first living
memory was of my Godmother Debbie
sticking a huge poster of Cologne, the
world’s tallest Cathedral on my bedroom
wall. I was fascinated by the beauty of the
building and the way its size made the
cars and vans in the photo look like little
toys. I grew to love the slightly smaller
Truro Cathedral and used to insist that
Mum and Dad take me in there on
shopping trips to just wander around and
listen to the beautiful music from the
choristers. I used to dream that one day I
would join the choir and sing with the
choristers, or maybe visit Cologne to see its
magnificence for real. We couldn’t afford singing lessons, but
aged eight I convinced Mum and Dad to let
me trial to be a chorister at Wells Cathedral.
Following the trial, the choirmaster
concluded that I wasn’t good enough to be
a chorister. This didn’t deter me. Despite
my lack of training, I wanted the
opportunity to learn, so I insisted that Mum
and Dad allow me to trial at Truro
Cathedral. I was accepted with a
scholarship. Later, the choirmaster
explained that although I lacked technical
ability, my enthusiasm and the twinkle in my
eye convinced him of my potential. Three years later the Wells choirmaster,
who originally rejected me, transferred to
Truro Cathedral and despite his original
assessment, he appointed me Head
Chorister. After training for three hours a
day for five years I had blossomed as a
singer, now performing in commercial
recordings, singing numerous solos
(including to the Queen) and leading the
choir on tours through France and
Germany. Aged 13, in my final concert, I
sang a solo in Cologne Cathedral and
fulfilled my unlikely dream.
Without the lessons and perspectives of
Mum’s situation would I have had the guts
to wish for such an unlikely dream? Would I
have given up when so completely rejected
by Wells? Would I have worked so hard to
develop my ability to sing, simply because I
loved it? Would I have developed the
leadership traits which led to my election as
head chorister without having to grow up
so fast due to having an ill Mum? I don’t
know. What I do know, is that these types
of stories echo consistently throughout my
life, and in the critical moments when I
6
need to take key decisions or decide
whether I will commit to something,
inevitably my mind returns to Mum, and I
think of what decision I would make if I
knew I were losing my legs tomorrow. At Oxford I became passionate about
rowing. As the “un-sporty” brother this was
a surprise to my family and friends and
initially rowing didn’t come naturally to me.
However, following three years of
committed training, my rowing performance
and leadership traits led to my election as
Trinity College Boat Club Captain. One week prior to the annual Oxford
“bumps” races two 1st VIII rowers had a
bicycle crash. Our number five dislocated
his elbow and our stroke fractured his wrist.
It was devastating news and a typical
example of a “life isn’t fair moment”. I had
ignored the 15 missed calls on my phone
because I was hungry after the morning
training and eager to get to lunch. I
remember with perfect clarity walking into
the dining hall at Trinity College after
morning lectures and hearing the hall go
silent. Everybody looked at me and slowly
people started to approach me to give me
their commiserations assuming our race
chances were finished. Once I got to the
bottom of what had happened, I remember
laughing to myself at the level of unfairness
in this situation – it was unreal, especially
after 9 months of committed training!
However, I also knew this was not a
moment for giving up; it was my job as
captain of the team to rally the troops and
use the situation to our advantage, to
galvanise them (as mum has so
successfully done for our family down the
years). I remained calm, immediately calling
a team meeting to promote a committed
squad rower to replace our number five and
reassuring the team that the situation was
under control. I then worked with a medic
to construct a wrist cast for the stroke with
the fracture which was shaped so it could
slip over his oar and allow him to continue
Maintaining our technique was critical and I
hoped he could continue to set our rhythm
even if he couldn’t apply pressure in the
water. We had trained harder than any
other boat on the river over the last nine
months, so I knew we had the capacity to
cover the power shortfall from the stroke
not rowing. It was unorthodox but it
worked. We made boat club history by
winning “blades”, whilst bringing Trinity 1st
VIII back to division one for the first time in
30 years. 22 years on since Mum became wheelchair
bound, she remains a complete inspiration
to me. Despite her paralysis, she still
maintains her positivity, sense of humour
and lust for life. We talk as often as I can
through my busy life and she seems to love
hearing my news. I am sure she takes
immense pleasure in knowing that her
greatest unfairness is my biggest source of
strength, inspiration and success.
A guy goes to a psychiatrist. "Doc, I keep
having these alternating recurring dreams.
First I'm a teepee; then I'm a wigwam; then
I'm a teepee; then I'm a wigwam. It's
driving me crazy. What's wrong with me?"
The doctor replies: "It's very simple. You're
two tents."
Three retirees, each with a hearing loss,
were taking a walk one fine March day.
One remarked to the other, "Windy, ain't
it?" "No," the second man replied, "It's
Thursday." And the third man chimed in, "So am I.
Let's have a coke."
Jaspers jokes:
Do you have any jokes?
Send them to me, (Jasper)
for the magazine
7
I received this letter and poem from our
friend Susan Creese with our first entry for
the photo competition.
When the world is all at odds
And the mind is all at sea
Then cease the useless tedium
And brew a cup of tea
There’s magic in its fragrance
There solace in its taste,
And the laden moments vanish
Somehow into space.
The world becomes a loving thing
There’s beauty as you’ll see,
All because you briefly stopped
To brew a cup of tea.
This little poem was sent in by Marjorie
Sargent who lives in Grantham, Lincolnshire
and is a member of our South Cornwall
Branch.
Thank you Marjorie
From Susan Creese:
I’ve been unwell, stuck in bed so pleased to
received your magazine again. I liked
Wendy Hughes piece which prompted my
poetry.
Looking back on good memories, photo of
myself and two grandsons, if I was to put a
picture with the poem that would be it,
Wonderdust = Rust on ship
background. I would also
like it put forward in your
best photo competition
( As Sydne`e/Squid as we
call her took it!)
Along with my own photos of my
embroidered pictures to Squid for her
birthday in 2000, when I was sick in bed
after an operation. I wanted to give her
something different and loved Winnie the
Pooh, so whilst ill in bed, I embroidered
them for her, then framed them for her.
Sydne`e’s 13th
birthday cake
Its not something I can do now due to
numb digits but, its so wonderful to look
back on good achievements done from
love and that I’d actually taken a photo
back then as they took me 6 weeks to
achieve, now hopefully into the photo
competition, along with Squid’s 13th
Birthday photo I took.
Squid is back to school after Easter and
overloaded with tests for her next year
class directions but she hopes to put
forward some things soon via email.
Hope to see you all at Carnon Downs on
29th June
Susan Creese.
Thank you Susan for your correspondence,
a great input to our magazine and I am sure
people can relate to your experiences. Sydne`e - If you are reading this, good luck
with your education and I look forward to
hearing from you.
MalcolmMalcolmMalcolmMalcolm
8
Wonderdust by Susan Creese
Madness is said to be all in the mind
Or is it ….
Madness is said to be a state of mind
Or is it?
Is it the chemicals that make us so blind
A toxic reachon : a fall out metaphor
Nuclear reactor abundant world wars
Do we need any of these, I doubt it?
A pivotal axis moves us while the sun shines
Rock on supersonic products, drown us
Chemical depleted toxins raising atmospheric pressures
Engulf us in a sea of debt
The African aboriginal man called Adam
Ancestral generic Grandfather time
Begetter to mothers and fathers
Who leave their children behind
Inherent successive mutations
Oppressing the people: exploiting mankind
Bold moves to live on Mars
Overthrust on the third climb
Seascape from mans creation
Reactive the product waste
Pollination in the next generation
Madness– the fertilisation from red copper dust C
Just a thank you
I would just like to thank all
those who send in letters,
information, articles and
poems. The Lifeboat is very much your
magazine and the articles that
you send in are an important
part of it.
I realise that many of our
members cannot get out and
about but the magazine is a
form of communication, just a
phone call or email will get your
views and articles published. The branch is here to help its
members in any way possible,
your communication gives us
an insight to your requirements
so keep the communication
coming. To all those young people out To all those young people out To all those young people out To all those young people out
there:there:there:there:
Your input is important to us,
we need to know what you
require to enhance your branch
membership.
Please respond to the article
on page 11 and lets cater for
the young people in their own
environment.
Malcolm GlisterMalcolm GlisterMalcolm GlisterMalcolm Glister
Jaspers joke,
Laughing is
compulsory
A teacher was giving a lesson on the circulation of the blood. Trying to make the
matter clearer, he said: "Now, students, if I stood on my head the blood, as you
know, would run into it, and I should turn red in the face."
"Yes, sir," the boys said.
"Then why is it that while I am standing upright in the ordinary position the blood
doesn't run into my feet?"
A little fellow shouted, "'It's because yer feet ain't empty."
9
June quizJune quizJune quizJune quiz May Quiz answersMay Quiz answersMay Quiz answersMay Quiz answers
Target
£2,000.00
Actual
to date £914
Money Boxes
Happy birthday to:
1st 1st 1st 1st Lin George
1st 1st 1st 1st Helen Mennear
4th4th4th4th Sue Gascoigne
5th5th5th5th Lauren Nankervis
6th6th6th6th Beverley Peek
10th10th10th10th Angela Dutton
14th 14th 14th 14th William Pashley
20th20th20th20th Hilary Hendra
21st21st21st21st Katie Horrocks
22nd22nd22nd22nd Wendy Hughes
28th 28th 28th 28th Desmond Coad
60
9
What’s this mystery object?
1 Benign
2 Flood
3 Carat
4 Born
5 May
The number in the bracket indicates the
number of letters in the answer. 1 Exclude (3)
2 Large deer (3)
3 Arrange (5)
4 Yeoman of the guard (9)
5 Land force (4)
6 Mother of the ancient Irish gods (3)
7 A person in general (3)
8 Female sheep (3)
9 Short (5)
10 Bus garage (5)
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
August
September
6 Hems
7 Haze
8 Pants
9 Dahl
10 Tam
Thought of the Month
Assertiveness is not about being rude or
demanding, its about standing up for what
is right for you!
Try saying no when you don’t want to and
yes when you do.
Poetry CornerPoetry CornerPoetry CornerPoetry Corner
Can you spot the 10 differences 10
Birthday cards
If anyone would like a birthday card send
from the branch please contact Betty
Alderton—Contact number on back page
May mystery object
You were like a mountain, always
there, never to leave, and I, I was like
water forever on my way.
Puzzle, puzzle me from the inside out
maybe then you will see what I am all
about
Young people with MS
between the ages of 17
to 30 years and those
newly diagnosed need
a different type of
support and activity to
the normal committee environment.
For many valid reasons this age group
would rather deal with their issues
separately and with people who think alike
and have the same interests, away from the
more advanced and more mature
membership. South Cornwall would like to give that
opportunity to young people by inviting
them to form a sub group of the South
Cornwall Branch. How would it work?How would it work?How would it work?How would it work?
The sub group would run independently
from the main branch giving the autonomy
for the group to arrange and involve
themselves in their own desirable activities.
The group would have their own committee
who could have a representative on the
main South Cornwall Committee for
updating and communication.
Finances:Finances:Finances:Finances:
The main branch could finance the young
peoples group although they would be
expected to hold their own fund raising
activities.
11
Young people and newly diagnosed group
We must recognise the requirements and
feelings of the young and newly diagnosed
and give them the opportunity to find their
way in their own and comfortable
environment
So lets do it! How do we start? Its easy, call or email me
Malcolm Glister :
Tel: 01209 860754
Email: [email protected]
And we will:
⇒ Sit around the table and discuss your
requirements and how you would like
to proceeded.
⇒ Discuss the financing of the sub group.
⇒ Start a young persons article in the
magazine.
⇒ Discuss how we can help each
individual in their own time and in their
own way.
This is an opportunity not to be missed for
all those young people including carers.
To all members:To all members:To all members:To all members:
Please inform any young person with MS or
who is a carer or has been newly
diagnosed that this option is available to
them.
Thank you
Malcolm Glister
12
JasperJasperJasperJasper
Anthony Rogers, Carwinion.Anthony Rogers, Carwinion.Anthony Rogers, Carwinion.Anthony Rogers, Carwinion.
We are saddened to learn of the death of
Anthony Rogers after a long illness, we
send our sincere condolences to his family.
As some of you are aware, Jane & her team
have raised several thousand pounds over
the years for our branch, but Jane will be
leaving Carwinion later in the year so this
year’s “ Bring a Plant, Buy a Plant “ event
will be the last. Therefore let us all do our
best to make this the most successful ever
and turn up in overwhelming numbers.
The date has not yet been fixed but is
expected to be in early September, we will
of course give you as much notice as we
can.
Malcolm ThorneMalcolm ThorneMalcolm ThorneMalcolm Thorne
From Mary Smiths son From Mary Smiths son From Mary Smiths son From Mary Smiths son
HenryHenryHenryHenry
"The London Marathon
was a great
experience. Early on in
my training regime it
became clear that
completion was the
target with everything
else going on! Times
and things went out of
the window and
although I did the first
half in two hours, the
second half took just over three, with
regular walking intervals. It was physically
extremely hard - my legs just weren't
prepared for much over 17/18 miles when
the going got tough. There were times
when even walking was tough and it was a
real mental battle. We have raised a good
amount (more than 3K) which is great and
we'll split it evenly between the MS Society
and Preston Neonatal Unit. It was very hot
on the day, which didn't help, but meant
there were spectacular crowds all the way. I
was running with people obviously running
for very powerful, moving causes and
personal reasons, which was pretty
inspiring. There is something very special
about the whole thing."
Anthony Rogers
I hopped the 2013
marathon, the only
problem I found was
the lack of tea on the
way round.
I compensated by
calling in on all the tea
houses I could find. Of course I reported
this error of judgment
to the relevant
authorities.
South Cornwall Branch and the CAB
For the past two years South Cornwall
Branch have been financing a dedicated
officer from the Citizens Advice Bureau.
If you are concerned about your finances
and or benefits or need any advice please
use our link to the CAB. We have a dedicated CAB officer who will
help you through your concerns and may
well inform you of finances you should be
claiming. With the changes in legislation and benefits
these are worrying times and sometimes
our entitlements are not entirely
understood, this is a golden opportunity to
clear any misconception about what you
are entitled to and give peace of mind. All you have to do is call our support
number 01872 274911 and arrange a
meeting with our CAB representative who
will guide you through your particular
situation. you may get Mike Georges Ryan Air
answer phone message but don’t worry,
you are in the right place, just leave your
message and we will get back to you.
13 5 5 13
Diary of our holiday
Northern Lights Cruise 14th Feb 2013 12th. To London. Comfort Inn.
Left Camborne 13.00 arrived 21.45. Found
hotel but on 4th floor & lift only went to 3rd.
13th. Museums.
Cold but sunny. Walked round corner to
taxi rank & took cab to V & A museum.
Wonderful place, saw Chinese room, silver,
gold, statues, miniatures, snuff boxes &
paintings. Had coffee then went on to Nat.
History. Crowded with school children. Had
lunch, saw some of the quieter bits then
abandoned it & went to Science. Most
interesting. Later arrived cab back at hotel.
14th To Tilbury for embarkation.
Sunny, Walked
across road to
Victoria departures,
bus to Tilbury on
time, then
embarkation. Shown
to cabin,
luggage waiting for us. Surprised how
much room we had. Compulsory fire drill.
Dinner at 18.00, met Maggie & Ron, &
Chris & Steve.
7 Courses every night if we wanted it
(which we didn’t). Brilliant with gluten free
food.
15th. Amsterdam.
Sunny, Arrived 09.30, went ashore 09.45
for the tour of Amsterdam & canal cruise.
Took us to the
floating flower
market, nipped into
café, coffee & apple
pie. Saw some of
the market before
time ran out, Back
to bus & return to ship 13.45 for lunch. 5
courses each day if wanted (we didn’t).
Sailed 14.00 .
After the article on Malcolm and Jackie’s
Northern Lights trip, you have asked for
more information and here it is.
16th. At sea.
Sunny, sea calm throughout voyage.
Interesting talk by Prof. David Southwood
former boss of the European Space
Agency, talked about The Sun, the Earth &
the Northern Lights. Captain’s reception,
dressed up. After dinner went to the Rock
& Roll show, very good.
17th. Alesund.
Cold drizzle, nothing
booked so went
ashore for a short
walk. Sunday, shops
shut except for
souvenir shop
beside the quay.
18th. Svartisen
Glacier. Northern
Lights.
Cold, sunny. Ship
went up fjord to glacier, spectacular.
Crossed the Arctic Circle on way north.
Another good talk by David Southwood,
Aurora & Magnetism. After dinner saw An
Audience with Valerie Leon, Bond Girl &
Carry On girl. Just getting ready for bed
when the call came that the Northern Lights
were on. Threw on the thermals etc & went
out on deck. Watched for about an hour &
a half, wonderful, beautiful, awe inspiring,
etc. etc. Pictures & films do not prepare
you for the real thing.
19th. Narvik. Northern Lights.
Cold & sunny again. Left at 11.15 for a trip
on the Ofoten Railway which winds its way
along the fjords & up the mountains to just
across the Swedish border. Hotel among
3-4 feet of snow, opened specially for our
lunch. Train was late coming back so we
got more time in the snow. Another look at
the Northern Lights tonight but not as
spectacular as last night.
20th. Alta
Cold & sunny yet again. Took
the 14.00 trip to the Igloo
Hotel, had our (free) drink in
an ice glass, vodka &
curacao, very nice. Seems
14 6 14
unbelievable that the hotel is built from
scratch each year. Heard a talk on how the
experts decide on where to go for the best
chance of seeing the N. Lights based on
weather forecasts & expectations of cloud
cover. Went on the 21.00 outing to find the
Northern Lights. Saw 2 moose beside the
road on the way. Jackie saw the lights from
the coach but that was it. Those that went
at 20.00 saw them briefly but they did not
reappear. Still a lovely evening walking in the
snow. Free cups of hot chocolate provided.
21st. Alta
Cold & sunny, Took the shuttle bus to the
town centre, big shopping centre, found a
chemist for cough syrup & throat sweets,
very expensive, nearly £20. Later saw
We Will Rock You, a show of Queen music.
22nd. Tromso
Snowing !!! Took the
city tour, including
the cathedral & the
Tromso museum
which has displays
of Arctic wildlife &
traditional ways of life. Time for a walk in the
snow in the afternoon .Found a Post Office
& posted our cards. During dinner we heard
crunching noises, & looked out of the
window to see that we were sailing through
an ice field. Classical concert in the
evening. Excellent.
23rd. Sortland.
Raining, cold & icy underfoot. Nothing
booked so stayed on board. Told later that it
was a dismal place & we hadn’t missed
anything. It was the first time the Marco
Polo had called there & probably the last.
24th. At sea .
David Southwood talked on Cassini/
Huygens: an Odyssey to Saturn & Titan for
which he designed an essential part of the
probe.
Evening show was An Audience with
Caroline Munro, another Bond girl & the
face of the Lambs Navy Rum adverts .
25th. Andalsnes.
Still cold & sunny. Outing today to see local
handicraft centres, nice but very, very
expensive knitwear & felt goods. More
affordable were the bits for sale at the
centre where a chap paints traditional
designs on wooden things. Bought a nice
glass dish here .
On our way from the first to the second we
discovered that neither the driver nor the
guide had actually been there before, & we
took quite a long detour up a single track
road into the mountains before he found a
place to turn round & look for the turning he
had missed earlier. Stopped off at the Troll
Wall on the way back.
Evening entertainment was comedian/
magician Andy Leach .
26th. Bergen.
Warmer, snow only on high ground. Took
the city sightseeing tour & visit to
Troldhaugen, home of Edward Greig, lovely
place beside ( frozen ) lake. Walked part of
the way back to the coach with Valerie
Leon, no airs & graces about her.
27th. At sea.
Afternoon talk on the history of the Marco
Polo, launched in 1965 as the Alexander
Pushkin for the Russian cruise fleet.
In the early nineties a wealthy Greek bought
the ship & spent £60m having the insides
ripped out & rebuilt. Now on long term
lease to Cruise & Maritime Voyages.
28th. Tilbury.
Back in UK. Still sunny. Disembarkation
worked without problems & we were back
at Victoria in good time for the coach to
Camborne, arrived home about 21.30.
Northern Lights Cruise
Jackie & I were asked to put this article in
the newsletter, giving more details of our
cruise in February. To keep it relatively short
we have submitted it in diary form, but we
are more than willing to talk in greater
detail, so if anyone wants to know more
please give us a call. 01209 717237.
15
Megan’s page
Megan’s page
Megan’s page
Megan’s page
15
I jumped into a
taxi and told the
driver where I
wanted to go and
then we were
off, speeding down the road. After
about 10 minutes we reached the
hospital. I hopped out of the taxi and
threw the taxi driver a few notes. I
rushed up to the front desk and
asked the receptionist which room
Taylor Stewart was in.
She led me down a long,
winding corridor and we
eventually got to room 117.
She opened the door and there lying
on the bed was my sister.
She has been in a serious car accident
and is critically injured. Her face was
covered in cuts, bruises and scrapes.
Coma Story! Part 1
Her head was wrapped up in a
bandage. It was the same with her arm
and her left leg. The nurse explained
that she’d broken 2 ribs as well as her
arm, leg and three fingers, and that
currently she’s in a coma that she
might not wake up from, even if she
does there’s a high chance that she’ll
have brain damage.
I collapsed in a chair next to her
hospital bed while the nurse left the
room. She was going to be okay, she
has to be okay. If she dies that’ll mean
that I have no one left. My dad died
before I was born and my mum left us
when I was 3.
Ever since that day we’ve been in
care. If my mum hadn’t have left, this
never would have happened. My
sisters 16 years old, she’s nice and all,
it’s just the people she hangs around
with that makes her come across as
bad.
Since the day my mum left she’s
looked after me. She’s given up
numerous offers to live with foster
families so she can stay with me. When
her friends were all going to a party
and I was ill she’d make up an excuse
to stay home and look after me. That
doesn’t really happen anymore as
seeing as I’m now 10 and don’t really
need looking after anymore. The night
of the accident (tonight) we’d had a
massive argument about which side of
the room was mine and which was
hers it ended in her storming off to
her friend’s house where she then
got into the car that may well kill her.
They drove off, speeding really. Down
the busy highway, a truck pulled out
in front of them. They drove into the
side of it.
None of them
have died Yet.
I sit by her
bed all night
holding her
hand and telling her all of the good
times we’ve had together, asking her
to tell me if I get anything wrong but
she doesn’t. The Nurse said that she
might be able to hear me, but might
not be able to respond back. I carry
on talking until my throat gets to sore.
I wake up in the morning at around
10.00.
A bunch of flowers have been left on
the side cabinet on the opposite side
of the bed. I slouch back into the
chair and fall back to sleep. I stay
with her for the whole week until my
social worker forces me to go home
and get a proper night’s sleep.
I asked the nurse to call me if there’s
any change. When I get back home I
go straight to our room to escape all
of the questioning eyes and worried
faces.
Look out for part 2 in next months Look out for part 2 in next months Look out for part 2 in next months Look out for part 2 in next months
magazine!magazine!magazine!magazine!
34 16 16
South Cornwall branch
MS Youth Group West
“Making Sense”
How young people
grow up,
Malcolm has asked
me to write this article
because my ears are
bigger than his
Way back in 2010/11 I heard that Megan
liked to write stories so I told Malcolm and
he asked her if she would write one each
month for the magazine and Megan
agreed.
Do you remember Megan back then, if you
don’t here’s her magazine picture from that
time
Since then Megan has written
stories for our magazine and
become the youth leader of
the South Cornwall Branch
MS Youth Group West,
earning herself an MS
Shinning Star award.
Growing up fast and
making me feel old
Megan’s pictures are
changing as time goes
by but we still get her
support.
This is the story of Megan’s page, a story
that is long overdue and one that will get
my ears boxed when Megan reads it.
JasperJasperJasperJasper
We thank Megan for
her commitment and
her parents Paula
and Ian for
supporting her work
with the MS Society.
If she ever stops
boxing my ears, I
hope Megan will
agree to be on the
front cover of our
July magazine
Read-A-Thon news
17
Schools completed:Schools completed:Schools completed:Schools completed:
Cape Cornwall, St Just
Darite CP School, Liskeard
Lanivery School, Bodmin
Kehelland school, Camborne
Gulval school, Penzance St Mary’s C of E Primary
Devoran School,
Daniel and Martha are friends who are in
the same class at Lanivet primary school.
Even though their school didn’t choose to
do the read-a-thon they asked if they could
do it themselves. They both surprised their
parents with their commitment over half
term.
This completes the first round of schools, I
will print the funds raised next month
Daniel and Martha
Daniel chose to be challenged on the
amount of pages he could read in a week.
When he told his parents that he would try
to read 300 pages they were worried
because normally he barely read three or
four pages a day when asked to for school.
However, he surprised everyone by reading
over a thousand pages and being very
self-motivated. Martha likes stories and
reading but also impressed her parents with
her self-motivated commitment. Between
them they raised £80.00 for South Cornwall
MS Society. They have both written a little
about themselves in their own words. I
would only add that at the end of March
they both starred in the school pantomime
in a variety of chorus roles. Daniel played
the part of a mouse and rat whilst Martha
was a dancer and fairy. It was a show
enjoyed by the whole community.
Daniel aged 9 Daniel aged 9 Daniel aged 9 Daniel aged 9
My name is Daniel and I like to play football.
Sometimes I play in football tournaments.
Also I’m a lifeguard in training and when
I’ve finished my training I will have a chance
to be a lifeguard.
Secondly, I love to play guitar. Also like the
opportunity to help people with MS
because my Mum has it. I like to go
camping with my friend Luke.
Martha aged 9Martha aged 9Martha aged 9Martha aged 9
My name is Martha. My age is 9. Reading
has always been one of my favourite
subjects.
I love to go swimming and to do swimming
galas. I also love to draw pictures (all sorts
of different things such as animals, portraits
and landscapes).
When I’m older I would like to be a zoo
keeper, or a vet at the zoo.
Well done Daniel and Martha, we thank you Well done Daniel and Martha, we thank you Well done Daniel and Martha, we thank you Well done Daniel and Martha, we thank you
for taking part in the Readfor taking part in the Readfor taking part in the Readfor taking part in the Read----AAAA----Thon and on Thon and on Thon and on Thon and on
your own back too, raising £80.00your own back too, raising £80.00your own back too, raising £80.00your own back too, raising £80.00
What an achievement!What an achievement!What an achievement!What an achievement!
MalcolmMalcolmMalcolmMalcolm How about sending me some of those
pictures Martha
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? 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.
Ellie May,
Communications and Corporate
Events Manager
Tel: 01726 885530
South Cornwall Branch
events 2013
70
In next months Lifeboat magazine: Members pages & Magazine Bingo Youth Group page MS News Megan’s page Branch events Read-A-Thon news
Events taking place at Merlin MS Centre
18
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
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!!
Get TogetherGet TogetherGet TogetherGet Together
The next get together is on the 29 June at
the Carnon Inn, Carnon Downs.
Don’t miss this one with makeovers, photos
and great prizes.
Book now with Chris 01209 315386
Carers LunchCarers LunchCarers LunchCarers Lunch
The carers lunch is on the 20th June at the
Falmouth Hotel so don’t miss it! 12.30 for
1.00pm
To book call Mike Tel 01872 862031
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.
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: Neville Reed
Telephone: 01637 875823
email: [email protected]
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 Carol Batchelor
Telephone: 01326 373464
email: [email protected]
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 Tuesday of each month: Last Tuesday of each month: Last Tuesday of each month: Last Tuesday 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