Autumn newsletter maddie banner

Chatterbox
Autumn Edition
Maddie’s Journey
“Maddie has come a long way
since she started Oxygen
Treatment; although she has a
long tough journey ahead of
her, she is already doing things
that doctors didn’t think were
possible” Kayleigh, Maddie’s
mum.
Maddie was nine weeks old when
her parents brought her to the MS
Therapy Centre for Oxygen
Treatment. She has Hypoxic
Ischemic Encephalopathy (HIE) oxygen deprivation. Maddie
suffered a lack of oxygen during
birth and was actually born
without a heartbeat. It took
several minutes to resuscitate her
causing a substantial amount of
brain damage. The brain damage
caused Maddie to have problems
with vision and hearing, she was
classified as Deaf Blind, she has
Cerebral Palsy, severe Reflux and
Epilepsy.
After the initial two weeks of
oxygen “saturation” her parents
noticed that Maddie slept better,
was more alert when she was
awake, wanted to interact, her
vision improved rapidly and her
muscle tone improved.
The biggest change that they
saw in Maddie was the Fat
Necrosis (a hard layer of fat
over her back, arms and in her
cheek) she was born with, had
completely disappeared after
six months of Oxygen
Treatment. They were advised
by their consultant that it would
take years to disappear and
may need surgery to remove it
completely. In July Maddie had
a vision assessment, she now
has useable vision in both eyes
– given that her parents were
initially told Maddie may be
completely blind, they are
thrilled with her progress.
“We are unsure of Maddie’s
future. All we can do is make
sure that her quality of life is
the best it can be. Oxygen is
and will be a part of Maddie’s
life. It has been such a success
so far that there is no way we
can see ourselves stopping it
any time soon” Kayleigh.
We need your help to support
people like Maddie.
Please DONATE now by:
Phone: 01454 201686
Online:
www.mstherapybristol.org.uk
Post: Cheques payable to “MS
Therapy Bristol” to the
address below.
Thank you.
The West of England MS Therapy Centre
Bradbury House Clinic, Wheatfield Drive, Bradley Stoke, Bristol, BS32 9DB | 01454 201686
info@mstherapybristol.org.uk | www.mstherapybristol.org.uk | www.mstherapyblog.org
Registered Charity Number 801155 | Registered Co. Number 2312916
New research from
the MS Society
Fatigue Management
Researchers funded by the MS
Society and based at Bournemouth
University and Poole Hospital NHS
Foundation Trust have developed
an effective method to help people
with MS manage their fatigue.
Physiotherapy and Kerplunk?
Mary-Jane, our Lead
Physiotherapist, regularly talks
about Kerplunk with her clients.
Kerplunk, for those who do not
know, is a game consisting of a
plastic tower with lots of holes
through which plastic sticks are
placed to hold marbles on top.
The aim of the game is to remove
the sticks one at a time and not
allow the marbles to fall to the
bottom. Frequently a number of
sticks are removed without any
marbles dropping but then one
vital stick is removed and the
marbles all come crashing down.
But what has that got to do with
physiotherapy?
out plastic sticks’ until at last we
pull one and all the marbles
come tumbling down - so we end
up badly injured.’
As Mary-Jane explains: ‘I use this
analogy frequently whether I’m
talking to carers, volunteers, staff
or clients. We all have bad
habits, such as sitting incorrectly,
or repeatedly moving objects in
ways that could injure us. We
may have small injuries that
cause us to slightly change our
movement to compensate for
pain or stiffness, but however we
carry on, not addressing the
problem. We think we are fine
until we lift, sit or bend in the
wrong way, and our bodies are
not able to adopt further coping
strategies - we’ve weakened
ourselves by gradually ‘pulling
Our Centre Physiotherapists
specialise in neurological
conditions and can provide one
to one sessions or group
exercise classes.
There are a
range of classes for varying
levels of mobility and balance,
currently held on Mondays and
Wednesdays.
People with a neurological
condition may be aware that their
walking, balance or fitness is not
as good as it was, or that their
fatigue is increasing, but they
decide to do nothing about it maybe because they’re busy at
work, with family or simply don’t
have time.
But having a
physiotherapy assessment early
on and addressing any problems
could help reduce longer term
knock-on effects.
So why not come along to the
physiotherapy gym and see what
we do - remember that by asking
for assistance early on you may
be able to prevent longer term
knock-on effects.
Don't let yourself go Kerplunk!
The fatigue management
programme, named FACETS
(Fatigue: Applying Cognitive
behavioural and Energy
e ff e c t i v e n e s s Te c h n i q u e s t o
lifeStyle) 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.
The team 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
practice only.
Participants who attended the
FACETS programme also showed
a statistically significant
improvement in reported selfefficacy, indicating that they were
more certain of their ability and that
their newly learned techniques
could help to control their fatigue.
We hope to start running our
own FACETS course, once
funding has been secured.
Physiotherapy Exercise
Classes
Wheelchair based classes: Monday
10.30 - 11.30 and Wednesday 10.45
- 11.45 (with equipment)
Lower ability standing classes:
Monday 12.00 - 1.00 and
Wednesday 9.30 - 10.30
Medium ability standing class:
Wednesday 9.30 - 10.30
2 x High ability standing classes:
Wednesday 12.00 - 1.00
Centre News
Techy Tea Party
Last month a group of volunteers
from EE kindly came to the
Centre to help resolve some of
our members’ tech issues with
tablets, mobile phones, laptops
and even digital cameras. The
event was a huge success.
Chatterbox
The next Chatterbox groups are
Wednesday 24th September from
12:30 and Tuesday 28th October,
from 10:30.
Everyone is
welcome to drop in for
refreshments and a chat.
“It is such a friendly group, I was
able to be myself around people
who knew how I felt. I haven’t
laughed so much in ages!”
Shelley, a Chatterbox regular.
Your Centre needs
YOU
To find out more contact Angela
on 01454 201 686.
Evening Oxygen
O x y g e n Tr e a t m e n t i s n o w
available on Thursday evenings.
Fundraising leaflets
The Future of your Centre
Help us to circulate our
Fundraising Leaflets to your local
cafes, businesses and social
groups.
How can the Centre better serve
your needs?
What additional
services would you like to see at
your Centre?
The P3 (24 feet) dive will run
from 6.30 and is open to anyone
who would prefer an evening
treatment.
Collect your leaflets from the
fundraising team. Thank you.
Please tell us your suggestions
by filling in a form at reception or
emailing
info@mstherapybristol.org.uk
If you would like to book into the
Thursday evening session,
please call us on 01454 201686.
Meet and Greet Volunteers
Every day visitors come to the
Centre to see the services we
provide. Who better to show new
people around the Centre and
explain the therapies, treatments
and support we offer, than you our Centre members.
All volunteers will receive
training. We need 50 volunteers,
can you help?
If you are interested, write your
name and contact details on the
Centre News Board or email
info@mstherapybristol.org.uk
and we will be in touch.
Yoga Classes
Flu Vaccinations
Our very popular Yoga Classes
will return on Thursday 2nd
October.
Autumn is upon us; remember
to get your free annual flu
vaccination.
These classes will concentrate on
relaxation, breathing and
stretching. All poses are carried
out from a seated position and
can help to improve muscular
strength, balance and flexibility.
Flu is a highly infectious
disease with symptoms that
come on very quickly. A bad
bout of flu can be much worse
than a heavy cold, so it is
important to get vaccinated.
If you would like to find out more
about yoga, contact Suzanne on
01454 201686.
Talk to your doctor for more
information.
Nightrider
Upcoming Events
Call 01454 628725 or go to
www.mstherapybristol.org.uk/events to register
Take the Plunge
13 September 2014
Get rescued by Newfoundland Dogs from
Portishead Marina, or come along on the day to
watch all the fun.
Zip Wire
5 October 2014
Experience the thrill of a 700m long, 70m high zip
wire.
6-7 June 2015
Nightrider is an exciting 100km moonlit cycle passing
London’s iconic landmarks. The route takes you over
Tower Bridge, through Canary Wharf, around the
bright lights of Piccadilly Circus, past the London Eye
and cycle across the famous crossing on Abbey
Road.
As the city sleeps, over 3,000 cyclists will take on this
night-time challenge, raising over £2.5m in one night
for charities.
If you would like to take part we will need to reserve
your place, so please get in touch with the fundraising
team on contact@mstherapybristol.org.uk.
All caked up
Ongoing
Hold an afternoon tea party with your friends and
family to raise money for the Centre.
Autumn Fair
18 October 2014
Grab a bargain at our Autumn Fair. We’ll have arts
and crafts, home made cakes, jams and more.
Sainsbury’s Adds
Value to MS
Pumpkin Patch
We are delighted that Sainsbury’s
East Filton has chosen us as their
Charity of the Year and we are
looking forward to working with
the Sainsbury’s team.
Wheatfield Primary School pupils
are growing pumpkins on the
Centre grounds to raise money for
the West of England MS Therapy
Centre.
The store invited three charities to
present to the staff and they
decided that we were the best
charity to work with, in making a
real difference to the lives of
people living with a neurological
conditions.
Prizes will
be awarded
to the largest
and the best
n a m e d
pumpkin,
and the most
imaginative
fancy dress costume on the day.
Teachers, parents and members
can get involved too by entering
the pumpkin carving competition.
Come along and join in the fun on
the 23rd October!
Our thanks goes to:
‣ Bradley Stoke Town Council
£500
‣ Hanham Parish Council £250
‣ Congresbury Parish Council
£250
‣ Nailsea Town Council £350
‣ Mangotsfield Rural Parish
Council £250
‣ Backwell Parish Council £150
‣ Patchway Towns Council
£300
‣ Winscombe & Sandford
Parish Council £250
‣ Long Ashton Parish Council
£200
‣ Downend and Bromley Heath
Parish Council £200
‣ Hanham Abbots Parish
Council £200
‣ Yatton Parish Council £200
‣ Keynsham Parish Council
£300
‣ Cheddar Parish Council £300