Tamworth and Lichfield branch

Autumn 2014
Tamworth
and Lichfield
branch
Branch Helpline
01827 895719
Welcome everyone to our Autumn 2014 newsletter.
Our branch continues to evolve. I had the privilege of being
elected Chair of our branch in May and there are a couple of
other ‘new’ names on the committee. Sue Evans (Ukulele
player extraordinaire) is our very efficient secretary. Julie Kinch,
known to many of you through her work on the committee and
with her Garden Party Cake Breaks, has agreed to be Vice-Chair, and Margaret
continues as Support Volunteer Lead Officer. Thanks to them and a huge thanks to
Amy for putting all our bits and bobs together to form a coherent newsletter!
While Margaret and I were at the MS Life conference, she persuaded Mike Jones
to allow us to put his name forward for nomination as Treasurer, given that Mark
Stirling was stepping down from the role. Mike has held significant financial roles
within the Society over the past 30 years, so we feel very lucky to have him on
board. I would like to extend my thanks to Mark who has given up so much of his
time to the role of treasurer, and wish him and his wife Jo all the best.
Although they’ve not yet started their official training, we have two people who have
volunteered as ‘Support Volunteers’. Rob has already started shadowing Margaret,
and Francine will be doing the same over the next few weeks. So, welcome Rob
and Francine!
Contents
8 - 10 Fundraising
2
Welcome from the Chair
11
Canada
3
Wellbeing and Information Day
12
Tai Chi Benefits
Accessible Eating Places
Tamworth Fair Extravaganza
13
Poem - I don’t look sick
Support Groups
Research - what’s new?
Treat me right
14
Use your vote
Eukele anyone?
Publicity
Newsletter via email?
15
What works for you?
Your committee
16
Just Us
Staffordshire Neurological Alliance
4
5
MS Life
6
MS Life
Shift MS
7
2
Watch this space!
Short Breaks
Information Section
Wellbeing and Information Day
We’re planning a wellbeing and information day that we hope as many of you as
possible will come along too. We’re in the process of organising the day which will
involve treatments, speakers and much more. Please keep this date free in your
diaries - Saturday 21 March 2015.
The day will probably be held at Greysbrooke Primary School, Shenstone. As ever
if you have any ideas about what you’d like to see there, please let one of the
committee know or email [email protected]
Staffordshire Neurological Alliance
The SNA was formed in January 2011 to look at service provision for people with
long term neurological conditions. It is led by people with neurological conditions,
current membership includes representation from organisations for Stroke, MS,
Epilepsy and Parkinson’s amongst others.
To receive their free e-newsletter, full of information and with links to other
resources, go to: www.staffsneurologicalalliance.org.uk
Tamworth Fair Extravaganza
We had a stall at the Volunteering Fair
Extravaganza in Tamworth Castle Grounds on
Friday 6 July.
It was a lovely day and although we didn’t
meet any potential new volunteers we did
come across some people with MS who didn't
know we existed, so please help spread the
word.
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Poem - I DON’T LOOK SICK
I DON’T LOOK SICK, but my legs often feel like wet
spaghetti and will go numb and give out without warning.
I DON’T LOOK SICK, but I suffer from an intense, deep
exhaustion that makes every movement feel like I’m trying
to move at the bottom of the ocean.
I DON’T LOOK SICK, but I suffer from an extremely sensitive heat intolerance that
makes me feel light headed, ill and feint even in what feels like a normal
temperature to you.
I DON’T LOOK SICK, but my nerves often give me ‘phantom itches’ that make me
scratch myself raw at an itch that doesn't actually exist.
I DON’T LOOK SICK, but inside, my bones often feel like someone is using a
jackhammer on them, especially during a change in weather.
I DON’T LOOK SICK, but if anything, even something little, stresses or worries me,
my body rebels and symptoms flare up just for the fun of it.
I DON’T LOOK SICK, but it’s extremely difficult for me to concentrate on anything,
and as a result, my memory suffers dramatically.
I DON’T LOOK SICK, but the simplest tasks can take me 5 times longer and 5
times more energy to finish than a ‘normal’ person.
I DON’T LOOK SICK, but you’ll never know the struggle beneath the surface.
Support Groups
Come along to our Tamworth support meetings and Tai Chi classes at Sacred
Heart, Silver Link Road, Glascote, B77 2EA. Tai Chi is held every Tuesday between
11.15am-12.15pm and support meetings follow between 1-3pm.
In Lichfield, we hold meetings on the second Tuesday of each month between
12-2pm at the Holy Cross Community Hall on Chapel Lane, WS14 9BA. Tai Chi
classes run every Tuesday from 2.30pm-3.30pm and cost £3.00.
4
MS Life Guide by Diane Lucas
Margaret White and I attended the 2014 MS Life
Conference in April. It was held in Manchester,
and I think it’s fair to say that we had an
‘interesting’ time both at and outside of the
conference!
We had a stress-free journey to Manchester, and
British Rail staff were absolutely fantastic. Nothing was too much trouble and we
were treated as very special, valued customers. Thank you, British Rail!
The next morning, Margaret survived the short journey to the conference centre,
despite me being a novice wheeler. Unfortunately, I didn’t move her out of the way
quickly enough at the pedestrian crossing when a bus came round the corner on 2
wheels and drove straight through the deep puddle in front of us. Never mind, she
dried out quickly enough and hasn’t held a grudge!
The conference was everything I expected and more. It was
a heaving sea of bodies on the first day and there were so
many seminars and workshops to go to that it was really
difficult to decide where to focus our attention. Margaret
knew a lot of people there through her many years of
involvement with the MS Society, and was commandeered
to help with one of the information stations for a few hours.
I attended a number of stalls, gathering leaflets and information as I went. I also
attended some inspirational workshops and seminars, and it was just my luck that
some I was really interested in clashed – I had a difficult job deciding between
some of them.
We all have different interests within the MS arena, and if you go onto YouTube
and search MS Life 2014, you will be able to click on the seminars or interviews
that best reflect your interests. I would really recommend that you listen to Marie
and Stuart’s interview, ‘Living and Loving with MS’. It focuses on intimate
relationships, an aspect of MS that’s not often talked about openly.
55
Seminars that I found particularly interesting were: the research talk and discussion
of the FACETS programme, based on applying cognitive behavioural therapy
techniques to fatigue management. There were also talks on the latest DMTs
(Disease Management Therapies), exercise and the latest training for Pilates
instructors to support working with PwMS, stem cell research and everything from
singing your heart out with MS Voices to cooking! Take a look at YouTube select a
video you’d like to watch and settle down with a cup of tea.
Unfortunately, there was an ‘incident’ during the night at the hotel – a very l-o-n-g
incident which lasted for around 3 hours so we didn’t get the most out of our
second day as we were so sleep-deprived! To cap it all, the taxi to take us to the
station never turned up, we had to hi-jack someone else’s taxi (Sorry!) but still
ended up missing the train. To add insult to injury, the lift at Tamworth station was
out of order, so we were taken to Birmingham, had to double back on ourselves to
Tamworth so we could get off the train on the platform on the opposite side!
Shift.ms
Shift ms is a social network for
people with multiple sclerosis.
It’s run by its members and
aims to empower people with
MS so they are able to
acknowledge their MS, rethink
how to achieve their ambitions and get on with their lives. The speakeasy forum
was set up so recently diagnosed PwMS can talk to others already living with the
condition. The forum allows people to compare experiences and learn from each
other. There is also a range of videos for people to watch that explain the
symptoms of MS and show people sharing their experiences.
If you have a spare half an hour, it would be worth looking at. Simply type shift.ms
into any browser and the website will come up. For those of you into facebook and
twitter, they have a big presence on social media too. Search shift.ms on facebook
or look for @shiftms on twitter.
6
Watch this space!
There are going to be some changes ahead. Following a Development
Day in the Spring, we are widening our range of activities so please keep
your eye on the branch webpage for further details. We can’t give you
firm dates or venues yet, but so far we have the following planned: a
taster session for mindfulness / positive thinking; a session focusing on
challenges relating to sleep and fatigue; relaxation / meditation sessions;
Neal’s Yard aromatherapy hand massage treatments to loosen up hands;
a Reiki therapy session. The sessions are likely to held in the community
room of a school between Lichfield and Tamworth as we’ve negotiated a
free of charge room! In order to keep you all informed of these ‘pop-up
sessions’, it would be really useful to have email addresses of those of
you that use email. It will be so much cheaper, and less time consuming,
than sending out letters. We now have our own email address:
[email protected] and it would be wonderful if you
could send any general queries or comments, and your own email
address, to this address. The [email protected] email address
continues to be the address to contact Margaret in connection with all
issues related to support, help, requests, grants, etc.
Short Breaks
If you are thinking of going on a short break
and want funding for it, please talk to us
before you book.
We cannot help you get a grant once a
booking has been made so make sure you
chat to Margaret before you do anything, and she’ll be
able to give you some advice and put you in touch with
the right people.
7
Fundraising Section
We’ve had a really successful time on the fundraising front since the last
newsletter. A massive thank you to everyone who has helped out at our
collections, helped with our grant applications, held events for us or put tokens in
our chute at John Lewis, it all really makes a massive difference.
John Lewis - Here we’re picking
up the Community Matters cheque of
a whopping £1082 from John Lewis.
Left to right: Katie McElroy,
Caroline Cartwright, Julie Kinch, Sue
Evans, Margaret White and Connor
Brooks.
Quiz Night - On 26 July a quiz night was held in our honour at Dosthill Boys
Club and £201 was raised. It was a really successful night, with those who
attended asking for another one to be arranged for later in the year - watch this
space! Huge thanks to Dosthill Boys Club for letting us host the event at their
premises. Also a big thanks to Tamworth businesses, Shear Success, Sunsational
Tanning and Beauty, Jalalis International, Kerry Kreative Kindon and Bristan.
Finally, a huge thank you to Aimme and Jackie Ison, Jonathon Downes, Simon
Blaby, Samantha Collingwood, Ellie Cotterill, Nicole Lowe, Kelvin Mason and Ben
Shead for all their help in organising and running the event on the night.
Julie Kinch’s MS Garden &
Cake Party
Julie’s legendary garden and cake party on
17 May raised an impressive £614.10.
Thanks to Julie and everyone who helped
her on the day. The cakes look yummy!
8
Collections
Local Tamworth supermarkets have been kind
enough to let us collect money in from customers
leaving their stores.
On 19 June we were at Sainsbury’s collecting an
impressive £372.03!
Picture right: Here I am with our secretary Sue
We also went along to the Asda, Tamworth
store on 2-3 September and gathered £493.
Picture left shows our Vice Chair and
Fundraiser, Julie.
Another collection went ahead on Saturday 13
September at Tesco in Lichfield. We don’t know
how much we raised yet as the cans haven’t
been counted, but we’ll let you know on the
website soon! Big thanks to Gary from the
Lichfield group for helping to organise.
Grants
We have been successful with two grant applications Tamworth High Sheriff's Fund and Tamworth Borough
Council’s Grant. We were given £500 for each, one will
go towards Tai Chi costs in Tamworth and the other
towards premises costs at Sacred Heart.
We have heard about many other grants that we can
bid for, and Diane and Julie will be putting their heads
together to do just that over the next few months.
We’ll be applying for grants to help meet the costs of the Information Day in the
spring, for some fun musical instruments, to cover the cost of some of the sessions
mentioned on page 7.
9
South Staffordshire College Donation by Judith Greaves
Between 2013 to 2014 at South Staffordshire College I organised various
fundraising activities with my Level 2 Childcare students to raise money for MS.
.
Events began during the week beginning 11 December, posters were put up and
emails were circulated around the college to publicise the events. When the day
finally arrived, I was completely overwhelmed by the number of students and staff
that purchased raffle tickets for the chance of winning a Radley bag, Kipling bag
and chocolate bouquet. We also had a guess how many sweets on the sweet tree
competition and had a lovely stall of sweet cones and various other sweet goodies.
The students also took part
in a sponsored silence
where they all made
Christmas cards to sell. This
was another successful
event and the students were
really enthusiastic and
wanted to do more
fundraising.
They then came up with the idea of bag packing. This event was a chance for the
Level 2 students to socialise with the community and make people aware of Multiple
Sclerosis. The students have been really proactive throughout the events and
they’ve realised that having MS doesn't mean people can’t still lead active lives. I’m
living proof of this and feel this has helped the students realise that anything is
possible if you have a positive attitude.
Donations throughout the year raised a staggering £862 and this is all down to the
students wanting to support the MS Society. Well done and thanks to all!
Last but certainly not least, the Rosary Group at Sacred Heart have given us £100.
Thanks to all involved for their really kind donation.
Incredibly in the past four months that brings the total raised to £4,724.13 - an
amazing achievement, we promise to keep up the good work!
10
Health & Wellbeing Section
Trip to Canada
As a child I always wanted to go to Canada and in
June we went for 3 fantastic weeks. We started in
Whistler, a ski resort that out of season becomes a
Mountain bike resort. It’s full of adrenalin junkies
(with a lot of money) from 16 to 70 they live for the
thrill. It’s very interesting to watch them go up on the
ski lift with their bikes and then see them riding down the slopes.
To save money we stayed in a room where the bed came out of the wardrobe!
Each morning it was put up out of the way, like in James Bond. I think my Bond
jokes were wearing a bit thin before we left though!
We then went to Victoria on Vancouver Island. Victoria is a beautiful place, there
were water planes landing which we could see from our hotel bedroom, which was
really exiting. Everybody was so friendly and nice it was sometimes almost
unnerving - if you walked close to the road the cars would stop, just in case you
wanted to cross. How weird is that!
We caught the ferry and then arrived in Ucluelet which was
rugged with a spectacular coast line (my husband found it
tough pushing me though - isn’t love grand). My favourite
thing about Ucluelet was the wildlife, we saw otters, killer
whales, humming birds and brown bears. The bears were at
the water’s edge looking for crabs. We then arrived in
Vancouver and what a wonderful city it is. It’s so lively
you can actually feel a warm glow when you’re there.
It’s a natural harbour and the harbour’s the life and
soul of the city. We went walking around and saw 20 oil
tankers and cargo freight tankers and they did not look
out of place or too big.
I would recommend Canada to anybody, they look after wheelchair users and those
with mobility issues extremely well, everywhere caters for you. And yes the
Canadians do know how lucky they are!
11
Tai Chi Benefits
It was not until I was asked to write this article that I realised how much Tai Chi has
done for me. I am the world’s worst. I am impatient. I rush. I take easy short cuts. I
make do. If I can’t do it straight away, I give in.
Tai Chi has taught me to be patient, and not rush as with Tai Chi there is no need to
do things quickly, just slow and correctly.
When I first started Tai Chi I use to sit down. As I
became more familiar with the classes I became
more confident and wanted to stand up, but I was
terrified to stand on my own as I felt dizzy and
wobbly. Our instructor Heather, suggested putting a
chair in front of me and now I stand up with a chair in
front of me all of the time. It gives me loads of confidence. Heather gives loads of
praise and if I’m doing anything incorrectly, she shows me after class what I was
doing wrong. She shows us all lots of useful things to practice at home too.
I know exercise is very important - I was told very early on when I found out I had
MS ‘if you don’t use it, you’ll lose it’ and now I know how very true that is! I’ve lost
things that I wasn’t even aware I wasn’t using.
To accept Tai Chi you have to learn and accept its traditions and teachings, its
history, its philosophy. I really feel that I have achieved a lot after each class, and
that’s not something that you feel very often when you live with MS.
Please do think about joining us at one of the weekly sessions - details on page 4.
Accessible eating places
We’ve been talking about accessible eating places in and
around our area. If you’ve been to a fully accessible place
where it was a joy to relax, eat and socialise, do let us know.
It would be great if we could have our own ‘Good Eateries
Guide’. It doesn’t have to be a posh restaurant we want to know about everything
from a tea shop to a good old fashioned caff! The Bull’s Head in Shenstone has an
8
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accessible toilet and room with no steps, where you can both eat and drink.
Research Section
In this section, we’ll bring you the latest updates as well as point you towards any
guides that you might be interested in reading.
What’s new?

Fatigue management. A trial involving 1499 participants compared the
benefits of exercise and education treatments versus taking drugs such as
amantandine and modafinil. In June, results were published and
suggested that exercise and education treatments are more effective.

Further tips include eating a balanced diet with regular meals rather than
sugary snacks. Relaxation techniques such as yoga before bedtime
promotes better quality sleep.

Lemtrada (alemtuzumab) and Tecfidera (dimethyl fumurate) have been
approved by NICE and SMC and are now available on the NHS.
Let the MS Society help you to help yourself!
Ever wondered whether you’re getting the
best treatment? Ever felt you were being
sold short but weren’t sure how to go
about fighting your corner?
The MS Society has produced an
excellent guide on ‘Access to Medicines’.
You can access it through the following
link: www.treatmerightms.org.uk
The list of contents which we’ve
duplicated here gives you an idea of what
you can expect, and there are some
extremely useful letter templates that you
could use to help you campaign for the
medication you think you may be being
denied.
13
Feedback Section
We hope you used your vote!
Our Branch Chair, Diane, has been put forward as the West Midlands member of
for the England Council for MS. Voting closed on 18 September so sadly it will be
too late to vote by the time you read this.
Whatever you did, we just hope you voted one way or the other!
Ukulele anyone?
Our Secretary, Sue has offered to teach ukulele to anyone
who might be interested. Want to learn a new instrument?
Think you might fancy it? Well then get in touch with Sue,
or indeed any member of the committee.
If you’re interested in a fun, musical evening, The Ukulele Orchestra of Great
Britain is at Birmingham Town Hall, 9 November 3pm-7pm - Works outing anyone?
Know where we could publicise our work?
Wherever you live there must be places that you can think of
that we could publicise our support groups and tell people about
the help we can give them.
Make sure you let us know if there is a free noticeboard, shop
window or meeting place near you, we want to make sure we
reach as many people as possible.
Do you want to receive your newsletter via email?
To try and cut down on printing costs, we’d like to send as
many newsletters as possible out via email.
If you have an email address and would like to receive regular
information and your newsletters this way, please let Amy know.
14
What works for you? Share your advice!
Help us to make this YOUR branch newsletter!
It would be good to share some of the things that you’ve found work for you –
anything from battling fatigue to tasty recipes to exercise tips.
Are there any shops, businesses or services you have found particularly useful?
Diane found Neil at Cathedral ChemDry brilliant and he’s raised over £1000 for St
Giles in the last 4 years. Have you found a website where you can get that ‘thing’
you’ve been searching for ages? Would you like to sing anyone’s praises, from a
healthcare practitioner to your next door neighbour? Sometimes we’re quicker to
complain than we are to compliment, so let’s set the record straight now!
If you have any good news or some hints and tips you’d like to share for the next
newsletter, email us at: [email protected]
Your Committee
Name::Diane Lucas, Chair Tel: 07551 238238
Email: [email protected]
Name: Julie Kinch, Vice Chair & Fundraiser
Email: [email protected]
Name: Margaret White, Lead Support Officer
Email: [email protected]
Name: Mike Jones, Treasurer
Email: [email protected]
Name: Sue Evans, Secretary
Email: [email protected]
Name: Amy Rawlins, Newsletter & Website
Email: [email protected]
15
Comedy Night with ‘Just Us’ - 21 November
We’re hosting an evening of music and comedy from the local amateur
dramatics group ‘Just Us’ on Friday 21 November. All proceeds will go to
our branch.
The group's producer Ann Rowland explains: "Our shows are all about
having fun and comprise of comedy and music by way of sketches,
monologues, and singing.
"Audiences are always guaranteed a good night out whilst at the same time
raising lots of money for charity. We have performed numerous shows over
the years and have so far been instrumental in raising in excess of £50,000
for a great number of very worthy charities and good causes.”
They’ll be a raffle and bar too, so there’s plenty of entertainment for all!
If it sounds like something you’d like to come along to, just ask our new
secretary, Sue for details. Tickets cost £10 and doors open at 6.45pm with
the show beginning at 7.30pm.
The event is being held at Whittington Village Hall, Langton Crescent,
Whittington, Staffordshire, WS14 9LR.
Accessible parking is available in the car park behind the village hall.
All views expressed in this publication are individual and are not necessarily
the views or policy of the charity and its supporters
Registered charity number 1139257 / SC041990
Registered as a limited company in England and Wales 07451571