South Cornwall Branch

Monthly Magazine

The Lifeboat

July 2013

Megan Robins

1

MS News

Page 3 MS Society appoints new Chief

Executive

Researchers develop effective

fatigue management programme

Page 4 MS Society predicts devastating

impact as new claimants access

PIP Page 5/6 Potential MS treatment shows

promise in early research

Carers Week research reveals

carers’ experiences in UK

Page 7 The real laws of nature

June Recipe Page 8 Who is this? Page 9/10 Quiz page 58

Page 11/12 The County Executive

Committee meeting Page 13/14 The Bleeper

Here to help

From Chris Sargent Page 15 Megan’s page Page 16 Youth group Page 17 Read-A-Thon

Schools awareness DVD Page 18 Events Page 19 Information page

Cover page: I did get to take some pictures of Megan and I took so many I was spoilt for

choice, these are just a few of them and as usual I like to have options for the front cover,

as you can see Megan is very photogenic and makes a great subject. Thanks Megan Who is going to be next for the front cover, don’t be shy, send me an email and we will

get YOU!! on the front cover.

Inside the Lifeboat

this month

2

Chairman’s Report

Editors Note

I am pleased to

announce that

Karen Stribley

has joined our

team as the new

Carer's Support Officer and takes over from

Neville Reed who has been in the office for

several years. I would like to thank Neville

for filling in when I became Chairman. Both

Neville and Judy will stay on the committee

as support team members. The support

team are soon to announce a list of events

which will be both enjoyable and also finan-

cially beneficial to our Branch , so watch

this space.

Both Malcolm and Mike May are working

on schools awareness DVD using the

branch video camera.

Is there anybody who would like to form a

photographic club using the camera and

also their own? You would be welcome to

use our bungalow to run it . Finally, can I

ask you to turn out your cupboards, garage

and shed to find articles for our car

booter's Amanda and Richard as they are

selling goods at a fantastic rate and as

such making money for our branch. Did I

say finally? Well a final request for all of you

to become more pro active in the Branch.

Don't just sit there waiting for the

committee to suggest events etc. Help us

by you doing it .

MikeMikeMikeMike

Hello everyone,

Whatever happened to

flaming June, or is that

something I vaguely

remember as a child.

Never mind it can only

get better.

There is still so much going on in the South

Cornwall branch, the Schools DVD,

Awareness DVD, County Executive

Committee, the Read-A-Thon, A new web

site soon to be on line with your magazine

included.

We wish all the best to Allan Sargent and

look forward to seeing him back, we do

miss him. I will be reporting on the County Executive

committee meetings where there are

exciting things on the agenda and hopefully

branches will be working closer together for

the good of their members. MS branch

awareness being a priority and working

with the Merlin Centre to achieve common

aims, all these things can only enhance our

status and public perception.

We are working on the issue of rural

location and the ability of our members to

attend events, reaching every member is a

difficult task but we must continue to

address this issue.

You can help by sending in your

suggestions and ideas, they are all

important to us as is, getting it right for our

members. Is there anything you would like to see in

your magazine? Jasper continues to be a

pain and Megan’s stories just get better

and better, I would thank all those who

have sent in articles and letters, its what

your magazine is about. By the time you receive this issue we would

have had our get together and I would have

had a makeover and a picture taken, I will

report in next months Magazine.

MalcolmMalcolmMalcolmMalcolm A pain am I? it will take more

than a makeover to sort him

out, he would be good in a

pantomime (ugly sister)

Researchers funded

by the MS Society

and based at

Bournemouth

University and Poole

Hospital NHS Foundation Trust have

developed a highly effective method to help

people with MS manage their fatigue.

The fatigue management programme,

named ‘FACETS’, incorporates ‘energy

effectiveness techniques’ like lifestyle

decisions and ways of working that

maximise the energy people have

alongside cognitive behavioural strategies,

helping participants to learn helpful ways of

thinking about fatigue.

Research results

A team of researchers led by Professor

Peter Thomas at Bournemouth University

Clinical Research Unit have recently

completed a randomised controlled trial of

the FACETS intervention.

They reported that 40% of participants who

received FACETS in addition to their routine

care had a meaningful improvement in

fatigue levels compared with 19% of

those who received current local 3

News from the MS National Centre

MS Society appoints new Chief Executive

Researchers develop effective fatigue

management programme

The MS Society is delighted

to announce the

appointment of Michelle

Mitchell as its new Chief

Executive from September.

Michelle is a highly

experienced leader and is

currently Charity Director

General at Age UK.

Michelle will be taking over from Acting

Chief Executive Patricia Gordon; her

appointment follows the departure of

former MS Society CEO Simon Gillespie.

She has led pioneering, high profile

campaigns and driven policy change in a

number of critical areas, including social

care funding, which have resulted in

fundamental improvements for those in

later life. She also led on core elements of

the merger between Age Concern and

Help the Aged and the brand launch to

create Age UK.

Michelle previously worked for NSPCC and

in Parliament, and is currently a Trustee of

Platform 51 and the British Gas Energy

Trust.

She said:

"I am delighted to be joining an excellent

team at the MS Society. I believe the

charity’s inspirational work, from

world-class research to practical

information and support, is fundamental to

improving the lives of people with multiple

sclerosis.

"I am looking forward to working with staff

and volunteers to build on the excellent

achievements of the last 60 years."

Hilary Sears, Chairman of the MS Society,

said, "Michelle has a successful track

record as a leader and brings with her

extensive experience in public affairs,

strategy development and research and

was part of the team that led the merger of

Age Concern and Help the Aged and

launched Age UK.

"The Trustees and I are looking forward to

working with her as the MS Society enters

an exciting and dynamic phase of its

development, creating a clear vision for the

next 20 years to ensure we meet our bold

ambition to stop MS in our lifetimes."

4

practice only.

Participants who attended the FACETS

programme also showed a statistically

significant improvement in reported

self-efficacy, indicating that they were more

certain of their abilities and that their newly

learned techniques could help to control

their fatigue.

Accessing FACETS

This group based programme is already

being delivered by healthcare professionals

across the UK and could help thousands of

people with MS manage one of the most

debilitating symptoms of the condition.

There is considerable interest in the

programme and researchers in France are

currently translating it and considering how

it can be delivered to people with MS in

their country.

We encourage healthcare professionals to

look into how they can deliver it to people

with MS in their area,

email education@mssociety.org.uk for more

information about training opportunities to

deliver this programme.

People with MS who are interested in

receiving FACETS should speak to their

local healthcare professionals (physios,

OTs, MS nurses) and find out if it is

available in their area. If it isn’t, people can

ask their health care professional to contact

the MS Society for information about

training opportunities.

The trial

Researchers studied 164 people with MS

and saw groups of participants (between

six to 12 at a time) attend six weekly, 90

minute group sessions at trial sites in either

Poole, Bristol or Southampton.

Each session was led by two senior

healthcare professionals (an MS

nurse,occupational therapist or

physiotherapist) and attended by others

with MS.

A month after the six week intervention, the

researchers surveyed participants for self

reported fatigue severity, self efficacy and

quality of life improvements.

A further survey was carried out four

months after the end of the course.

Dr Sarah Thomas, Senior Research Fellow

at Bournemouth University Clinical

Research Unit led the development of the

FACETS programme and said: “We have

shown that FACETS is an effective

treatment for managing fatigue in people

with MS, addressing one of their worst

symptoms”.

She continued “It has been designed so

that it can be provided in the health service

with relatively little cost. This is a good

example of researchers and charities

working together to provide improvements

in patient care.”

The full results of the trial were published

this week in the Journal of Neurology,

Neurosurgery and Psychiatry.

MS Society predicts devastating impact as

new claimants access PIP

The MS Society,

along with over 50

other charities

forming the

Disability Benefits

Consortium (DBC), today warned the

government of a devastating impact on

people with MS and other disabilities if it

ignores concerns about the roll out of the

new Personal Independence Payment

(PIP).

As the programme is extended to new

claimants today (10 June), the MS Society

is concerned that the government’s

intention to save money will leave many

people living with MS and other disabilities

without vital support.

PIP was launched in the North-West and

parts of the North-East of England in April

and will be extended to include all

current DLA claimants from 2015.

Wrongly withheld

Following the reform, 600,000 fewer people

will qualify for financial support to help with

the costs of living with a disability as PIP

5

Potential MS treatment shows promise in

early research

properly qualified to do them.”

The MS Society is working hard to make

PIP as fair as it can be for people with MS.

For updates on what we’re doing and how

you can get involved, please join our

campaigns community. For more

information about PIP visit our web page

If you or anyone you know has begun a

new claim for PIP, we want to hear from

you. Email campaigns@mssociety.org.uk

Researchers in Switzerland, Germany and

the US have worked together to develop a

new type of treatment for people with MS.

This potential treatment aims to

re-programme the immune system to try

and reduce attacks on myelin.

The treatment involves taking white blood

cells (immune cells) from an individual with

MS and putting large quantities of myelin

antigens (parts of the immune system that

recognise myelin) into them. These immune

cells containing myelin antigens are then

injected back into the participant.

This causes the immune system to

recognise myelin specifically as harmless

and develop a tolerance to it, so as not

attack it in future. The therapy seems to

have the advantage of doing this without

altering or suppressing the function of the

rest of the immune system (which some

current MS treatments do).

A small trial

The new treatment was tested in a phase 1

(early stage) clinical trial which involved just

nine people, 7 with relapsing-remitting MS

and 2 with secondary progressive MS.

The aim of the study was to check the

participants could tolerate the treatment

meaning whether it appeared to be

relatively ‘safe’ in these individuals.

The study was very small, so researchers

couldn’t establish whether the treatment

could potentially prevent the progression of

MS. Their observation was that those

participants who received the highest

replaces Disability Living Allowance (DLA).

Mobility support could be wrongly withheld

from those who need it as the criteria is

extremely strict and stipulates that if people

can walk just 20m – even using aids such

as sticks – they won’t qualify for the

enhanced rate of the benefit, and could

lose up to £1,800 a year or their Motability

vehicle.

The DBC, which includes Parkinson’s UK,

Mind and RNIB, along with the MS Society,

also has major concerns about the

application process and how people are

assessed. For example, a claimant could

be ‘clinically’ examined by a healthcare

professional who isn’t a doctor and does

not have a detailed understanding of their

condition.

Fair assessment

The DBC is calling on the government to

look into these issues to ensure that all

claimants are assessed fairly so their needs

are properly met and their independence

safeguarded.

Claire Nurden, Senior Policy & Campaigns

Officer at the MS Society and Co-Chair of

the DBC said:

“We are seriously concerned that the

change to PIP will have a devastating

impact on people living with MS and other

disabilities who really need support.

"Despite the government’s claims that the

benefit is to help those in the greatest need,

we believe that it’s many of these people

that will lose out.

Urgent revision

"We are calling on the government to

urgently revise the mobility criteria for the

benefit, which currently deprives anyone

who can walk even slightly further than 20

metres – the length of just over one double

decker bus – of the support they need to

remain independent. "We want assurances

that the assessment process will be as fair

as it can be that means proper use of

additional evidence and the abolition of

clinical exams that are currently set to be

carried out by assessors who aren’t

6

Carers Week research reveals carers’

experiences in UK

Carers Week have also produced a guide to

help people prepare to care.

Prepared to care?

Released as part of Carers Week 2013, the

findings show that:

• 75% of carers were unprepared for all

aspects of caring.

• 81% of carers say were not aware of the

support available.

• 35% believe they were given the wrong

advice about the support on offer.

The research outlines the emotional,

physical and financial effects that caring can

have as people are not prepared for the

impact of their caring role.

The report shows that carers often struggle

to balance work and caring responsibilities,

with 45% of carers saying they had to give

up work. It also highlights how carers’

physical, emotional and mental wellbeing

can be affected. 61% of carers have

experienced depression and nearly all

carers surveyed (92%) say they feel more

stressed because of their caring role.

Ron Brown, who is 68 and cares for his wife

Jan who has MS, says: “To get the help,

you have to do everything yourself. It’s

difficult to access too. Most carers don’t

know they can have an assessment of their

needs. Carers will struggle on, seeking help

for the person they care for rather than

themselves. Being a carer is not a job you

apply for, it’s something you step into as a

husband, a wife or a partner.”

Celebrating and supporting carers

Sue Allison is strategic lead for carers at the

MS Society: “Families and carers have told

us that because MS can be a fluctuating

condition, it is really difficult to feel prepared

to care. There are times when an MS

relapse can mean that the person they

support may suddenly have increased care

needs which can tip the balance of being

able to cope with increased caring

responsibilities alongside work and other

family commitments.

New research from Carers Week of over

2,100 carers has revealed that many carers

lack support and information when they first

take on a caring role, and were unprepared

for all aspects of caring. The findings from

the report, Prepared to Care? show that

support is not being made available to new

carers. With around 6.5 million carers in the

UK and 6,000 people taking on a new

caring role every day, the charities within

the Carers Week partnership including the

MS Society are calling for the government,

GPs and health and social care

professionals to ensure that more support

is given to carers from day one of their

caring role.

dose of myelin antigen containing white

blood cells showed the largest reduction in

attacks on myelin.

Full results of the trial were published this

week in the journal ‘Science Translational

Medicine'.

A priority for the MS Society

Dr Susan Kohlhaas, head of biomedical

research at the MS Society, said:

“Treatments that could stop the

progression of MS are urgently needed and

this is a priority for the MS Society. Being

able to stop the immune system specifically

attacking myelin while keeping it fully

functional poses an exciting potential

therapy for people with MS.

“We were interested to see this novel way

of re-programming the immune system was

shown to be well tolerated in this very small

study. More research is now needed and

we eagerly await the results of any future

larger clinical trials of this therapy.”

Future research

Researchers are hoping to carry out a

larger phase 2 trial, which will further test if

the treatment is safe in people with MS. It

will also test whether there is evidence that

the treatment can be effective in slowing or

stopping the progression of MS.

7

Law of Mechanical Repair -After your

hands become coated with grease, your

nose will begin to itch and you'll have to

pee. Law of Gravity- Any tool, nut, bolt, screw,

when dropped, will roll to the least

accessible corner. Law of Probability- The probability of being

watched is directly proportional to the

stupidity of your act. Law of Random Numbers- If you dial a

wrong number, you never get a busy signal

and someone always answers. Supermarket Law- As soon as you get in

the smallest line, the cashier will have to call

for help. Variation Law-If you change lines (or traffic

lanes), the one you were in will always

move faster than the one you are in now. Law of the Bath - When the body is fully

immersed in water, the telephone rings. Law of Close Encounters- The probability of

meeting someone you know increases

dramatically when you are with someone

you don't want to be seen with. Law of the Result- When you try to prove to

someone that a machine won't work, it will. Law of Biomechanics -The severity of the

itch is inversely proportional to the reach. Law of the Theatre & Hockey Arena

At any event, the people whose seats are

furthest from the aisle, always arrive last.

They are the ones who will leave their seats

several times to go for food, beer, or the

toilet and who leave early before the end of

the performance or the game is over. The

folks in the aisle seats come early, never

move once, have long gangly legs or big

bellies and stay to the bitter end of the

performance. The aisle people also are very

surly folk.

The Coffee Law

As soon as you sit down to a cup of hot

coffee, your boss will ask you to do

something which will last until the coffee is

cold. Murphy's Law of Lockers

If there are only 2 people in a locker room,

they will have adjacent lockers. Law of Physical Surfaces- The chances of

an open-faced jam sandwich landing face

down on a floor, are directly correlated to

the newness and cost of the carpet or rug. Law of Logical Argument-Anything is

possible if you don't know what you are

talking about. Brown's Law of Physical Appearance -

If the clothes fit, they're ugly. Oliver's Law of Public Speaking- A closed

mouth gathers no feet. Wilson's Law of Commercial Marketing

Strategy

As soon as you find a product that you

really like, they will stop making it. Doctors' Law- If you don't feel well, make

an appointment to go to the doctor, by the

time you get there you'll feel better... But

don't make an appointment, and you'll stay

sick. This has been proven over and over

with taking children to the paediatrician.

Sent in by Judy Reed: The real laws of

nature

June Recipe

A Japanese dish of crisp fried chicken in a

rich curry sauce. Simon Rimmer's version

has less fat but all the flavour of the original.

8

I have been rummaging through some old

photos that I found, when I came across

this one. If anyone has any idea or knows

who this is, I would love to hear from them.

Please either phone or text me on

07721868170 or drop me an email:

nikkijenkin@googlemail.com

Many thanks Nikki Jenkin xx

Who is this?

Help needed to find the mystery person!!!!

I am not sure

who this is but I

have seen him

before

somewhere,

I don’t like not

remembering

things, it make

my ears twitch.

I will have a cup

of tea and think

again.

IngredientsIngredientsIngredientsIngredients

For the sauceFor the sauceFor the sauceFor the sauce

1 tsp cumin seeds

1 tsp coriander seeds

1 tsp fennel seeds

1 tsp fenugreek seeds

2 cardamom pods

2 tbsp vegetable oil

2 onions, sliced

2 garlic cloves, sliced

2 small red bird’s-eye chillies

1 x 400g/14oz tin chopped tomatoes

2.5cm/1in piece root ginger, peeled, grated

1 tbsp ground turmeric

250ml/9fl oz chicken stock

1 tbsp honey

1 tbsp soy sauce For the katsu curryFor the katsu curryFor the katsu curryFor the katsu curry

150g/5½oz plain flour, seasoned with salt

and freshly ground black pepper

200g/7oz Japanese panko breadcrumbs

2 free-range eggs

4 chicken breasts, cut into strips

4 tbsp vegetable oil

3 carrots, sliced

2 spring onions, chopped

cooked basmati rice, to serve Preparation methodPreparation methodPreparation methodPreparation method

For the sauce, fry the spices in a dry frying

pan for 2-3 minutes, then grind to a

powder in a mortar and pestle.

Heat the oil in the same frying pan used to

the fry the spices and fry the onions for

8-10 minutes, or until golden-brown. Add

the garlic, chilli, chopped tomatoes, ginger

and turmeric.

Bring the mixture to the boil, then add the

stock and simmer for 25 minutes.

Leave to cool slightly, then blend the

mixture until smooth, then stir in the honey

and soy sauce. Keep warm.

Meanwhile, for the katsu curry, sprinkle the

flour and breadcrumbs onto separate

plates. Beat the eggs in a bowl.

Dredge the chicken pieces in the flour, then

dip in the egg and coat in the

breadcrumbs, shaking off any excess.

Heat the oil in a frying pan over a medium

heat and fry the chicken pieces for 2-3

minutes on each side, or until

golden-brown. Remove from the pan and

set aside to drain on kitchen paper.

Meanwhile, cook the sliced carrots in a pan

of boiling water for 4-5 minutes, or until

tender. Drain.

To serve, stir the cooked carrots and spring

onions into the curry sauce. Spoon the

cooked rice onto serving plates, spoon

over some sauce and top with the fried

chicken pieces.

9

July quizJuly quizJuly quizJuly quiz June Quiz answersJune Quiz answersJune Quiz answersJune Quiz answers

Thought of the Month

I know that everything happens for a

reason but sometimes I wish I new

what that reason was

Target

£2,000.00

Actual

to date £914

Money Boxes

Happy birthday to:

5th 5th 5th 5th Glynis Donnelly

8th 8th 8th 8th Pam Aldwinckle

11th 11th 11th 11th Jackie Rowse

15th15th15th15th Caroline Green

27th27th27th27th Carole Whalley

28th 28th 28th 28th Jenny Newport

29

9

What’s this mystery object?

1 BAR

2 ELK

3 ORDER

4 BEEFEATER

5 ARMY

Number in bracket indicates number of

letters in each answer 1 Molten rock (4)

2 Belief (4)

3 Changes direction (5)

4 Has (4)

5 Looked at (4)

6 Wagers (4)

7 Hold up (5)

8 Mr Reed (singer) (3)

9 Christmas treat (5,3)

10 Contributor (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 13 July 13 July 13 July 13 58, 29, 62, & 7

August

September

6 ANA

7 ONE

8 EWE

9 BRIEF

10 DEPOT

Poetry CornerPoetry CornerPoetry CornerPoetry Corner

Can you spot the 10 differences 10

June mystery object

To see a world in a grain of sand

and heaven in a wild flower

Hold infinity in the palm of your hand

and eternity in an hour

Lots of you had trouble finding all ten

differences, that’s probably because there

are only eight. Sorry, I won’t do it again

but it did get you going didn’t it!

11

The County Executive Committee had their

first meeting on the 29th May,

representatives from each branch were in

attendance.

The discussion was constructive and

forward thinking with the main points being: Working with Merlin:Working with Merlin:Working with Merlin:Working with Merlin:

Working with the Merlin Centre was agreed

to be a positive step forward in creating

awareness together giving an opportunity

to show what branches are and what they

can offer.

Malcolm Glister was delegated to meet with

Loraine long with regard to the following

initiatives:

♦ Work with the Merlin Centre for a

shared stall at the Royal Cornwall

Show and Stithians show in 2014.

♦ Possible shared fund raising.

♦ A county branch and Merlin awareness

day with radio Cornwall at the Merlin

Centre, followed by an evening social

event, using Fire ‘n’ Ice as

entertainment. Branch Awareness materials:Branch Awareness materials:Branch Awareness materials:Branch Awareness materials:

Malcolm Glister showed the original County

Brochures used during the awareness

project, Chris Heaman suggested that we

use them as both county and branch

brochures, the committee agreed. Malcolm

Glister would email the brochures to the

committee for any changes in telephone

numbers and get a quote for printing.

Committee members to notify MG of

changes. Posters: Posters: Posters: Posters:

Brian Southgate noted that posters did not

work efficiently, with the issue of them

being removed and not read. The

committee agreed and decided to stick

with brochures at this time. Chris Heaman

suggested that the brochure could be

called “Cornwall Together”, this was agreed

by committee.

The County Executive Committee meeting The Media:The Media:The Media:The Media:

There was great debate on the media

awareness issue resulting in the following

initiatives:

♦ Open and awareness day at the Merlin

Centre with radio Cornwall, Malcolm

Glister to contact Lawrence Reed and

Loraine Long.

♦ Bring back the original press release

from the awareness project and make

it a county release rather than one for

each branch. This will ensure a

“Cornwall Together” image. The press

release would be sent to all media

throughout the county to coincide with

the open day at Merlin. Committee

members to email Malcolm Glister with

their local press contact details.

♦ Drive to Rome: Brian Southgate

informed the committee that two

people were going to drive from St

Blazey to Rome in a car costing no

more that £350. They will be

donating sponsorship to the MS

branches in Cornwall.

It was suggested that each branch can

collect sponsors and keep the money

raised. More information to be

obtained Consistency of service:Consistency of service:Consistency of service:Consistency of service:

The committee agreed that it was difficult to

sustain a consistent service throughout the

county with varying available funds. This

issue would be addressed as and when the

county branches have become more

established by working together with a

higher profile and increased funds.

To be discussed at future meetings. County Website:County Website:County Website:County Website:

Malcolm Glister explained that South

Cornwall’s IT manager was in contact with

London regarding the national website and

was negotiating a county website with links

to each branch.

There have been great difficulties in the

past, hopefully to be resolved in the near

12

future.

Each branch would have the opportunity to

enter their details on their own web page.

Malcolm Glister to report at next meeting Young people’s group:Young people’s group:Young people’s group:Young people’s group:

Following the conference in April

Malcolm Glister has requested a meeting

with Julie Collingbourne to discuss a young

people’s group.

Pending that meeting South Cornwall has

put an article in the June magazine to

encourage young people with MS to come

forward if they wish to form a sub group of

South Cornwall, the sub group would have

its own committee and work independently.

South Cornwall would fund the project. The committee were encouraged to do the

same in their newsletters to

encourage young people into the MS

society. CABCABCABCAB

Since the CAB discussions at

conference Malcolm Glister met the CAB

representative to gain information on where

the referrals were coming from and the fu-

ture costs of the service.

The results are: 36 from South Cornwall

20 West Cornwall

27 Mid Cornwall

2 North Cornwall Most CAB appointments are referred from

Treliske MS nurses, this could be the

reason that North Cornwall only have 2 as

most people affected by MS in North

Cornwall attend Exeter or Plymouth

hospitals.

South Cornwall currently pays for the

service (£3,350.00)

But to effectively continue with the

volume of referrals the CAB would need

more time and therefore a higher charge.

Malcolm Glister suggested that we all pay

some towards the service as the benefits

are county wide.

Chris Heaman suggested that branches

pay for the usage in their area.

Malcolm Glister is to continue discussions

with CAB and determine a price for more

hours; this would be used to calculate the

cost for each branch using the area referral

information. County Grants:County Grants:County Grants:County Grants:

South Cornwall grants officer is to look into

available grants open to the county. Amalgamation of Branches:Amalgamation of Branches:Amalgamation of Branches:Amalgamation of Branches:

Mid and North Cornwall – It was felt that

due to the geographic location and rural

areas it was not possible to amalgamate at

this time but the committee agreed that it

would be good for each branch to work

together where possible.

South and West Cornwall- West Cornwall

are holding their AM after the executive

committee meeting; therefore we await a

decision from them in the near future.

Malcolm Glister has written notes for West

Cornwall on the benefits of a merge.

Have your say!Have your say!Have your say!Have your say!

The formation of the County Executive

Committee is an exciting development in

the history of Cornwall’s MS branches,

working together is an essential part of

becoming successful in offering services to

our members. However, our members must

have a voice in the decisions that are

made, branches are there to support

membership so your communication is

important to your committees. If you have any thoughts on how you would

like to see your branch progress please

send them to me, all of your comments are

important and will be taken on board. Help us help you, get in touch now! I will report again after the next executive

committee meeting on the 24 July Thank you for your input

Malcolm

answer a phone call,

turn on the television,

and ring a friend. Of

course, I can’t move my

wheelchair out of the

way or get a DVD out

and put it in the ma-

chine.

So my life has been

improved but there are still many

restrictions on me. Even writing this has

involved Sue and she’s taking the dictation.

People are always coming up with good

ideas like talking books – I can’t read

because I can’t turn over the pages – or

voice-recognition computer programs; the

list could go on but I don’t wish to think of

other “helpful” suggestions.

The bleeper has a voice so people relate to

it; some knock it by mistake and

immediately get an answer like “call nurse”!

This can infuriate some people and so they

push it again, which causes the red light

above my bed to go on which means that

the nurse call is activated; so then they will

turn the red light off. Other people, if they

knock it, will proudly wait till the man says

“space” and then knock it which turns it

off.

I was given a particularly sensitive bleeper

as I couldn’t use my hand very effectively

on it.

Once, when I had a meal, the man giving it

to me took off the bleeper to avoid

knocking it. I said “You will remember to

put it back”- he said “Of course!” When I’d

finished the meal, as he walked out we

were talking and he forgot to put the

bleeper back on me. Without the bleeper I

felt totally terrified; on one side of me the

lady had died, and on the other side there

is a lady of 102 who is very deaf. Luckily

the carer had left my door open and so I

shouted “Help!” a number of times. As I

was working out that someone would be

coming with my supper in about an hour, I

yelled a bit more and then gave up, feeling

totally helpless. 13 5 5 13

The Bleeper by Mary Smith The Bleeper has enriched my life.

I am totally disabled by multiple sclerosis;

by totally I mean my legs don’t work, my

right arm and hand don’t work; the only

things that do work for me physically are

my left hand, I can move my head, I can

talk and think and swallow. For many other

things I need the help of someone else:

feeding, washing, bathing and showering,

drinking, working my computer, putting the

wireless on and off, brushing my hair or

teeth.

To call a nurse or carer or friend I press the

bleeper pad, which is fixed high up on my

nightie or shirt, by

moving my chin or

fingers.

After the first

press a man’s

voice says “Nurse

call”; the second

thing he says is

“phone on/off”, the third thing is “space”.

After that there is a list of various peoples’

phone numbers beginning with Adrian (my

husband) and then my

siblings, then friends, and then matters

relating to turning the telly on or off and

then the various channels. There is a

display screen on a stand beside my bed or

wheelchair which lights up each option as

he talks. I now know it off by heart.

Once the bleeper hits the person or thing I

want to activate I bleep it and then it will

dial the number or put on what I want. This

all works due to the Possum. Possum in

Latin means “I am able”.

The numbers are put in by John who, I

believe, covers the south-west of England;

it is his voice on the Possum. If people

change their numbers I phone him to

register the change on the Possum.

Since I got the Possum about five years

ago it has changed my life. In this nursing

home I have my own telephone which my

husband has installed so now I can

14 6 14

Luckily a lady at the end of my corridor,

who is not deaf, sounded her buzzer and

someone came down. I shouted again and

they came in and gave me my bleeper. The

person who had left it off came down and

immediately apologised to me. I realise that

the carers are very aware of how

dependent we feel.

People are always saying they can’t

imagine how it must feel to be me. By

writing this I hope I can give them some

idea of my predicament. Mary Smith 24.5.13 Thank you for your input Mary.Thank you for your input Mary.Thank you for your input Mary.Thank you for your input Mary.

Last month we read how Mary Smith’s son

Henry ran the marathon, well here he is

finishing the run, I think we will leave that

sort of thing to you Henry. Well done.

Betty Oxley

It is with regret that we

report the death of

Betty Oxley, Betty was

the newsletter editor for

the Carrick branch

some years ago.

We send our

condolences to her

family and thank them

for the funds donated in

lieu of flowers.

On the 2nd May Captain Mike George and

the crew of the Lifeboat launched the boat

for Allan. He fell at home and broke his hip.

There followed a number of problems and

Mike advised and helped us through them.

All this was completely unexpected and

made me realise how important the South

Cornwall Branch can be in an emergency.

The support, kindness and friendship has

been reassuring for us both. I would like to thank the Branch Members

for all the telephone calls, cards and visits

to Hospital we have had. It really has been

so helpful with Allan's recovery. He will

probably be in Marie Therese House for

another 3 to 4 weeks. I have been sending Physiotherapy

Vouchers out for a while now and know

how important these are for our Members.

Please support our Branch and Committee.

Come to meet everyone at the events the

Branch organises for you, there is no

charge for most of them and you will have a

very warm welcome. The benefits of having

the South Cornwall Branch are important to

all our members. Hopefully you won't need

the emergency help that we did but, it is

there for any member who needs it. Please

don't take this help for granted. The

Committee needs support and

encouragement too.

From Chris Sargent

15

Megan’s page

Megan’s page

Megan’s page

Megan’s page

15

The Coma Part 2

When I wake up the next morning I

feel awful! My bodies completely stiff

and my eyes are sore and aching. I

look over at the clock 12pm! I scan

the room in front of me and can’t look

at her bed and I begin to wonder what

would it be like right now if we hadn’t

had that argument and she hadn’t

been in the crash and if she was here

with me now.

All of her stuff is in exactly the same

place she left it. I lie back down and

wrap myself up like a cocoon in my

soft, warm duvet cover and suddenly

in a dream world, Everything’s light

and fluffy. It feels like I’m floating, I’m

not the only one here of course. I’m

with Taylor; she’s happy and radiant

just like she used to be before she got

in with the wrong crowd. We are

jumping all over the bouncy

marshmallow road only stopping when

we got hungry.

We’re flying in the air, soaring, we do

loop-the-loops

everywhere and it feels amazing, no

worries not a care in the world, just

the two of us alone together in dream

world.

I wake up to the alerting sound of the

fire alarm, great, Lizzie’s cooking

again. I clamber out of bed, wrap my

dressing gown around me and I make

my way down the stairs. It’s like a mad

house, Kids running free, everywhere

they could. Two are even playing

catch with an expensive vase.

Christine’s obviously been left in

charge again. I walk into the living

room and everyone suddenly stops

what they’re doing and sit down

quietly. I slouch down on the

un-comfy sofa and turn on the TV but

I’m not really watching it, I’m going

back into

dream world. A

happy,

care-free place.

At three the

hospital calls

they say that

there’s no

difference and

I was welcome

to go in if I

wanted to.

Christine offered to drive me when

the others get back but I said that I’d

rather walk. She looked unsure but

nodded anyway. I get ready and then

head out of the door.

62

16

JasperJasperJasperJasper

16

It’s cold and it looks like it’s going to

rain but I carry on anyway. I get to the

hospital soon enough and head to

Taylor’s room. Nothing’s changed

except there’s another bunch of

flowers on the bedside table alongside

the other ones.

I walk around to the chair and sit

down. I start telling her about my

dream and how I’d do anything to go

there with her right now.

No response.

I tell all of the places we could go to

if she wakes up.

No response.

I tell how much I miss her and wish

that she’d wake up.

The machines suddenly start beeping

loudly. Nurses run into the room and

usher me outside…

To be continued……….

Jaspers Jokes

I am filling in for the youth

group this month as they are

very busy at school with

exams and other activities.

A blonde, a redhead, and a brunette were

all lost in the desert. They found a lamp and

rubbed it. A genie popped out and granted

them each one wish. The redhead wished

to be back home. Poof! She was back

home. The brunette wished to be at home

with her family. Poof! She was back home

with her family. The blonde said, "Awwww, I

wish my friends were here."

A man needed a horse, so he went to a

temple and got one. Before he left, the

priest told him that it was a special horse.

In order to make the horse go, you say,

"Thank God," and for it to stop you say,

"Amen." So the man left, and a few minutes

later he dozed off on his horse. Hours later,

he woke up and his horse was racing him

towards the edge of a cliff. Just in time, he

shouted "Amen!" and the horse stopped a

few inches from the edge. "Whew," said the

man, "thank God!"

Excuse me! Do you have

a book called “Husband–

the master of wife”

Sir.. comic department

is on the 1st floor

South Cornwall branch

MS Youth Group West

“Making Sense”

Read-A-Thon news

17

From the first round of

the schools Read-A-Thon

the schools raised

£2,000.00 This is just a start and we are

now encouraging other

schools to take part.

If you know of a school who

would like to get involved in the

Read-A-Thon please let me know,

there are many benefits to be had both for

the students and the schools.

I will be happy to come and talk to any

school who is interested in taking part. I am finalising the presentation of awards

and the Oriste competition, by the end of

July all schools would have been awarded

with their certificates and trophy. The Oriste prize will be awarded to the

competition winner, I will publish names

and pictures in the August magazine.

Malcolm Glister

Schools awareness DVD

For some time now I have been working

with students from Cape Cornwall School

to produce a schools MS awareness DVD.

Mike May has been working his magic with

the camera and we hope to have

something to show by the end of the year. The students have been great and the

schools staff support has been second to

none.

Thank you Cape Cornwall School.

Meet some of the students:Meet some of the students:Meet some of the students:Meet some of the students:

There are eight students on the project and

I will publish all their pictures and names in

future editions of our magazine.

Second DVD

The next project is with Megan’s Youth

Group, we are going to make a DVD for the

Read-A-Thon which will enhance the Read-

A-Thon material. I hope to have them both completed by

2014. Working with schools is so important to the

MS society, educating young people about

MS is setting foundations for the future of

our branches and creating awareness of

MS.

Something seems to be

amiss here, as a member

of Megan’s youth group

and a participant of the

Read-A-Thon (I read Brer

Rabbit six times) and raised

several pounds of carrots

for the Christmas dinner.

Yet up to now I have not received a

certificate, I will be putting in a complaint

to Malcolm.

For those who haven’t read

this book you must hop out

and get a copy, great book,

kept me up all night

reading.

I will of course report on the

results of my complaint, I

have copied to Megan.

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

7

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!!

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 Events Events Events

CalendarCalendarCalendarCalendar

Chairman: Chairman: Chairman: Chairman: Mike George

Telephone: 01872 862031

email: cornishmike@talktalk.net

Treasurer: Treasurer: Treasurer: Treasurer: Malcolm Thorne

Telephone: 01209 717237

email: malcolmt.southcornwallmssociety@live.co.uk

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: malcolmt.southcornwallmssociety@live.co.uk

Secretary: Secretary: Secretary: Secretary: Christine Sargent

Telephone: 01209 315386

email: christine.southcornwallmssociety@live.co.uk

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: nevnjude.southcornwallmssociety@live.co.uk

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: malcolmglister@btinternet.com

Branch Web manager: Branch Web manager: Branch Web manager: Branch Web manager: Mike May

Telephone: 01872 272 957

email: mikem.southcornwallmssociety@live.co.uk

Membership: Membership: Membership: Membership: Betty Alderton

Telephone: 01872 270901

email: betty.southcornwallmssociety@live.co.uk

Minute Secretary: Minute Secretary: Minute Secretary: Minute Secretary: Moe Fisher

email: moefisher@hotmail.co.uk

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: nikkijenkin@googlemail.com

Events CoEvents CoEvents CoEvents Co----ordinator ordinator ordinator ordinator Carol Batchelor

Telephone: 01326 373464

email: carol.southcornwallmssociety@live.co.uk

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