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i

Connecng
News, views and stories from people living with aphasia
The magazine from Connect the communication disability network

Issue 1
Autumn
2015

Nicole, Colin and Carole fundraising


for Connects Brighton & Hove dropin at ASDA. Read more on page 9

In this issue:
Meet Pelucy

Weymouth drop-in
out and about
3
Research: In hours
v. out of hours
4
Sarah Gray and
her encaustic art

Jerry Johnson,
busy busy

Coryn Memory on
peer support
7
Aphasia Research:
Will you help?
8
Brighton & Hoves
fundraising success 9
News from Leeds
and Canterbury 10
Matthew Hickson:
a portrait
11
Befriending?
Go for it!

12

Bromley donates 12
Connect, St Alphege
Hall, Kings Bench St,
London SE1 0QX
www.ukconnect.org
info@ukconnect.org
020 7367 0840

f facebook.com/
connectaphasia
twitter.com/
connectaphasia
Registered charity 1081740

Welcome!
Welcome to the rst issue of
Connecting, formerly Aphasia News
I hope that you like the new look and that
you will nd the articles inspiring and
interesting. Many have been written by
people living with aphasia.
Do let us know what you think, at info@ukconnect.org
Sally McVicker, Chief Executive, Connect

What is peer-led work?


All of our activities are 'peer-led', which means that they
are led by people who have direct experience of living
with communication disability. For example, our drop-in
peer leaders all have aphasia. We believe that the
support that they can oer is unique.
You can nd details of whats on in your area and read
inspiring stories from people living with aphasia at
www.ukconnect.org
If you would like Connecting emailed as a pdf le, which
saves Connect money, please email:
info@ukconnect.org

Connecting Editorial Team


Sharon Baker
Basia Grzybowska
Gerald Hartup
Matthew Hickson
Gareth Jones
Colin Lyall

Tony Palluotto
Rob Welch
Titus Young
Jonathan Smith
Connect Communications Ocer
Design: Lucy Ward www.lucyward.co.uk

Articles have been published as received and reproduce the


authors text and use of grammar.

Prole by Basia Grzybowska

Meet Pelucy
Pelucy had stroke in September 2014 and now lives
with aphasia. At the time she was working as a
security guard, sometimes at night. She lives with her
brother in Forest Hill, South London.
Pelucy was born in Uganda. She went to university
there, studied Adult and Community Education.
In London, she got a Masters degree (City
Regeneration) at London Metropolitan University.
Pelucy have lots of relatives in Uganda. Last time she
saw them it was 2013. Pelucy wants to nd a job more
suitable for her qualications. Her speech is normal
now, and she can read but she nds dicult to write.
Before her stroke and now, Pelucy attends church.
Also she joined a choir and learning to swim.

Find out about the


Connect groups which
Pelucy attends
Wednesday drop-in,
Womens group and
Communication
group. We would
love to meet you too!
Call 020 7367 0845,
or click Whats on in
my area? at
www.ukconnect.org

Gardens,
cream teas
and a wishing-well
We all took a stroll around the small but pretty gardens
in Upwey, Dorset, examining the dierent owers, the
little brooks and bridges winding through the garden. It
was a beautiful day, full of colour and smells. There were
3 little ducks swimming near the Well, with the mother
duck keeping watch.
All of us armed with silver coins to throw into the Wishing
Well, all at sometime or other trying to nd out what the
other wished for. A good conversation subject whilst we
waited for our Cream Teas to be ready. It was a nice change
of venue for the Weymouth Aphasia Groups meeting.

Pat Browne,
Weymouth peer
leader, wrote about
drop-ins day out.
Connect has two
drop-ins in Dorset
Christchurch and
Weymouth.
Visit www.
ukconnect.org
3
to nd out more

In hours versus out of hours


Are outcomes dierent if you are admitted in
or out of hours? an important investigation is
underway
Text by Gareth Jones
Gareth will update
readers in a future
issue of Connecting

There is a research project running looking into 24/7


cover for all aspects of care from nurses, consultants,
physiotherapists, speech and language therapists and
health professionals covering patients arriving at all 8
Hyper Acute Stroke Units (HASUs) in London. So far it is
the only study that has looked at 24/7 cover.
How speedily are patients seen? Are there delays seeing
a consultant if the patient is admitted out of hours? If
there are delays, are there signicant outcomes to their
recovery? Run by Dr Rob Simister, who runs the HASU at
University College Hospital, it is looking at Patients
arriving in hours (Monday to Friday 08-30am to
17-30pm) and those arriving outside of these times.
Me and Stan Spinks (who used to come to Connect dropin) are the lay people on the steering committee and we
were asked to give our input on the questionnaires the
researchers would use amongst other things.
The researchers are going to pick 4 people from each
HASU, 32 patients in total, though we mentioned the
low number being selected.

Dr Rob Simister

The project was supposed to run over two years, in the


rst year to gather the data and in the second year to
analyze it, but for reasons like getting ethical approval
(standard practice but a slow procedure) they started to
collect data six months behind schedule. Dr Simister
has asked for a six month extension.

It was in hospital that I met with two befrienders from


Connect, both with aphasia. It was so refreshing to meet
and talk to other people who had been in the same
situation, giving me hope and reassurance. Jon, Cornwall
4

Peaceful pictures
created by Sarah
Gray, who
discovered a
remarkable talent
following her stroke

Sunshine, flowers
and rivers
Following her *haemorrhagic stroke in 2012, Sarah
was admitted to Oxfords Centre for Enablement. It
was here that she was introduced to encaustic art
painting in wax. Remarkably, she had not painted
until then. Sarah says that it is now an activity that
gives her a huge amount of pleasure. She refers to
zoning out, as she creates her peaceful pictures
of sunshine, owers and rivers. Living with aphasia,
Sarahs story is all the more remarkable as her brain
injury left her registered blind.
Sarah attends Oxford drop-in for people with
aphasia. She says: People respect you for who you
are and not what you can or can't say. If you know
someone in the Oxford area with aphasia, tell them
about drop-in. For more information contact peer
leader Chrissie Wright chrissiewright65@gmail.com
/ 01865 604 329 or visit www.ukconnect.org
*Haemorrhagic stroke, caused by a rupture in a
weakened blood vessel in the brain

Above left:
Glimpses of Heaven
Above: Sarah creates
a work using wax and
an iron
Sarahs work is on
display until the end
September at The
Mill, 46 Cowley Rd,
Oxford. Call 01865
263758 for details.
The Mill is run by the
charity MIND.
The website
www.nevergray.co.uk
was built by Sarahs
son Tom, to raise
awareness of aphasia
Text by
Jonathan Smith
5

Jerry Johnson, busy busy


Jerry has contributed to many Connect training
events and aphasia research projects

Becks and Jerry


Johnson

I was born in 1965 in New South Wales, Australia.


I was diagnosed with a heart murmur. In 1973 family
returned to the UK, to Northampton. I worked in
music and publishing and married Becks my lovely
and supportive wife. I was very busy for 8 years with
overseas trips and I was tour manager for a band Viva
Art Music. During routine check-up 1995 my heart
problem had got worse and I have surgery.
I became a student at Northampton University
(Politics and Philosophy), then MA (Political Behavior
in Elections) at Essex University. In 2002 I suered a
minor stroke, which only aected my eyesight. In
2004/06 I went to Manchester University to do MSc
(Social Research and Statistics) and to study for a PhD.
On May 8th 2006 walking to the Northampton
University oce, strange thing my head is fudge,
wandering in the corridor and the outside, I bumped
into a colleague. I tried to say hello but nothing
came out! My colleague rang 999. I was taken to
Northampton General Hospital. I had a stroke.
Every day I had speech and occupational therapy,
I couldn't speak or read and had cognitive problems.
For 12 months after my stroke I also suered epileptic
seizures. Even now I have problems speaking.

With thanks to Basia


Grzybowska for
organising this
article

Since 2010 I have been Coordinator for Dierent


Strokes Northampton and I work for Dierent Strokes
Head oce, part-time, as a bookkeeper. I volunteer for
dierent jobs including: training for professionals and
aphasia research projects for Connect, one-to-one
communication at Stroke club, talking to speech
therapy students at Manchester and Northampton
University and Aphasia Alliance meetings.

from a deep place of


understanding
Coryn Memory re-tells an act of kindness
seen at a peer-support group
Our original peer support group started out as ve men
aected by stroke meeting fortnightly. Now, one year on
we have about 15 members, aected by stroke, aphasia,
dementia, autism, mental health conditions, all-sorts.
I was chatting to one of the original members who was
lamenting the fact that the group had changed from
being stroke only. We were discussing what made a
group A Peer Support Group. Was it that everyone had
the same condition? Or was it that
everyones condition aected them in
similar ways and so they could
with a
Are you living
?
on
iti
nd
co
h
support each other with real insight
long-term healt
and understanding.
es and peer
riending schem
Connect runs bef
ire for people
in Gloucestersh
support groups
other
and
a
en
ke, dem
living with stro
dions
long-term con

As I continued chatting, Anita,


another group member, came in. She
had only been to four meetings. And
she had only met John, a younger
group member aected by a number
of strokes, on a couple of occasions. She came straight
up to him and gave him a gift of 20 CD audio books of
the Classics. She knew he would like them and knew that
his strokes had made it dicult for him to read. She also
knew that he would not feel humiliated by this gesture
as it came from a deep place of understanding. I leaned
over to the group member I had been chatting with and
said THAT is peer support. He got it.
to one
eriences one
with similar exp
Meet others
or in a group
munity
h your local com
Reconnect wit
support
Find and give

Coryn is Connects
Peer Support Enabler
in Gloucestershire
Connect runs peer
support groups and
befriending schemes
in Gloucestershire for
people living with
stroke, dementia
and other long-term
conditions, funded
by Gloucestershire
NHS Clinical
Commissioning
Group and by Health
& Social Care
Volunteering Fund.
Contact Coryn on
0747 999 919 or
corynmemory@
ukconnect.org
To nd out whats on
in your area, visit at
www.ukconnect.org

...people come in to drop-in


and smile because everyone
is the same. John, Warrington
7

Aphasia research
Aphasia researchers across the UK are looking for
people with aphasia to get involved in their work

Will you help?


You can support
aphasia researchers
across the UK who
are looking for
patient and public
involvement in
developing their
ideas by contacting
the Research Design
Service on ppi@
rdslondon.co.uk
Article by Tony
Palluotto, who is
attending Aphasia
Research Group
presentations.
Tony will update
readers in a future
issue of Connecting
*Primary progressive
aphasia PPA
A rare neurological
syndrome in which
language capabilities
become slowly and
progressively
impaired, while other
mental functions
remain preserved
8

The Aphasia Research Group develops contacts between


researchers and clinicians and those interested in
aphasia. They are looking for people with aphasia to
help them in their work. I attended the rst meeting of
the Aphasia Research Group (ARG) in February.
This group has been setup by a forum of researchers
within University College London (UCL) in 2013. The
Group is run by Anna Volkmer and Claudia Heilemann.
Anna Volkmer had interviewed participants for a research
project developing conversation training program for people
with Primary Progressive Aphasia* (PPA) and their partners.
Anna has noted in her investigations, that although this
group requires the same supports and strategies that
people with Non Primary Progressive Aphasia benet
from, they need additional information like future
planning to deal with future continued language loss.
Most people with PPA and the families feel that it is a
useful and innovative approach for them.
There were two speakers at the meeting, Dr Katherine
Hopkins from Research Design Service and Dr Holly
Robson, a lecturer in Clinical Language Sciences from
University of Reading and Stroke Association Senior
Research Training Fellow.
Holly Robson spoke about Auditory Comprehension
Research of Wernickes Aphasia. People with the condition
are unable to understand language in its written or spoken
form, and even though they can speak with normal
grammar, syntax, rate, and intonation, they cannot
express themselves meaningfully using language.
Dr Katherine Hopkins spoke about services oered by
RDS (Research Design Service) London and how to
access them. www.rds-london.nihr.ac.uk

Brighton & Hove rocks!


Highlights from a busy year of fundraising by
Brighton & Hove drop-in

Congratulations to
Brighton & Hove
drop-in, who raised
almost 2,000 in 12
months
Colin Lyall wrote this
article. He was rst a
befriendee in the
scheme described on
page 12, before
attending drop-in. He
is now a peer leader
and a befriender to
others with aphasia

Collecting for Connect!

In July 2014, Ana (Outreach Mentor) ran the British 10k


in London and raised over 260 for Connect Brighton &
Hove. We held an aphasia awareness and fundraising
event at Tesco Hove the same month and 45 was
raised. A lot of fun was had, dog sitting customers dogs
while they went shopping!
In September 2014 Nicole (peer leader) and Ana were
invited to dinner at The Inner Wheel Group in Hove.
Nicole talked about her experiences of having a stroke
and living with aphasia. Connect became their Charity
of the Year. 800 was donated to our group.
Carole organised a successful Christmas Fair at
Christmas and 95 was made for our group.
Guitarist and singer, Mandy Woods, entertained us in
May this year and we raised 48. Mandys two
dachshunds, Chilli and Silva, are also regular visitors to
drop-in. www.mandywoods.co.uk
On Wednesday 20th May we had a joint stand with the
local NHS Community Neurorehabilitation Team at
ASDA at the Marina, in Brighton. We raised awareness of
aphasia as part of Mays Stroke Awareness Month.

Do you know
someone on the
south coast with
aphasia? Tell them
about drop-in.
Contact Helen Mann,
helenmann@
ukconnect.org /
020 7367 0864 to
nd out more

Videos to
watch:
What happens at
Brighton & Hove
drop-in? Peer leaders
tell us in this video,
available from the
home page of
www.ukconnect.org
Another peer leader,
Paul, has made some
videos about living
with aphasia. Search
Paul Stocky on
YouTube
9

To nd out more
about Leeds drop-in,
contact Helen Mann,
helenmann@
ukconnect.org /
020 7367 0864
Bristol drop-in has
just opened and
before the end of
2015 Connect will
open a drop-in in
Sheeld
Full details of all
Connect drop-ins and
activities can be
found by clicking on
Whats on in my
area? at
www.ukconnect.org

How are we doing?


... asks Kath Coleman from Leeds drop-in
As a new drop-in, launched in March 2015, we are slowly
growing in numbers here in Leeds. We have grown from
4 to 8 regular members in a short space of time. We feel
the drop-in has:

Improved our speech and increased our condence


Allowed us to smile and laugh again
Made us feel less alone
Oered new friendships
Allowed sharing of ideas on how to cope with life
with aphasia

As new members join, so the original members all grow


in condence and provide invaluable support. We could
have not done this without the amazing support from
Warrington peer leaders Donna and John. Thank you!!

Canterbury tales
Our group is steady, the people with aphasia eagerly
come for the social drop-in and the volunteers look
forward to the date. All are stimulated which I am
deeply satised.
Inspired by Connects
London centre,
Sharon Baker
founded Canterbury
drop-in, which meets
twice a month.

I started Canterbury drop-in. The people in Marshalsea


Road [Connects former London home] inspired me
and now pleased, that so many more groups have
formed throughout the nation. My idea was to mirror
Londons drop-in to converse or not, to be relaxed
and have a cup of coee or tea with biscuits.

Contact Sharon on
aphasiadropin@
gmail.com / 07530
398 220 or visit
www.ukconnect.org

However the group is limited as Canterbury is a small


city. I have posted the ier to the relevant places often
enough. There was an article about me and aphasia in
the local newspaper. Maybe we havent advertised
fully how welcoming our group is and how friendly we
all are? We look forward to welcoming new members!

10

Matthew Hickson
A portrait

Written by
Sharon Baker

Matthew was a chemistry teacher at a secondary


school at Canterbury. He was struck down with a
brain haemorrhage at October 1999, was diagnosed
with an Arteriovenous Malformation* (AVM), taken
to surgery to reduce the AVM but the surgery was
only partially successful. In December 2014 he was
given radiation to remove the weakened blood
vessels and he is waiting to see if it had worked.
He has reading and writing diculties, aphasia and
epilepsy and cannot drive unless he is seizure free
for a year.
He attempted to work and the pattern ingrained of
teaching was intact and chemistry formulas were
not a problem but reading the students paper
creates a new diculty, he could not focus. He had
seizures every three or four weeks and took several
weeks to recover as the seizure causing recurring
aphasia.
He decided to end his career after deep thought and
has joined voluntary groups where he had been a
valuable member.
Yet Matthew seems unscathed and friends and
acquaintances ask why he is not back to work? They
fail, not intentionally, to see the scar inside, which
leaves Matthew with continual disappointment. If
only they see the invisible post-stroke rather how he
looks and acts with a cheery smile would be so much
better. It would alleviate the distress on him, to
accept him as he is.
Matthew enrolled in Canterbury College to pursue
joinery as he enjoys working with wood. He has a
lovely family and two dogs. He enjoys sailing with
his brother who owns a boat, and attends
Canterbury drop-in.

Matthew and family

People understand
you, no judgement
and I always leave
with a smile on my
face says Matthew
about Canterbury
drop-in
Read stories and
blogs at
www.ukconnect.org
from people living
with aphasia who
describe how
Connect is helping
them reconnect
with life
*Arteriovenous
Malformation AVM
a term used to
describe a tangle of
blood vessels with
abnormal connections
between arteries
and veins

11

Thinking of befriending? Go for it!


Written by Emily
Clarke, Brighton
& Hove drop-in
Sussex Aphasia
Befriending Scheme,
run by Sussex
Community NHS
Trust, is looking for
Befrienders and
Befriendees. Call
01273 242271 / email
SC-TR.ABS@nhs.net
Connect runs
befriending schemes
in Surrey, Rotherham
and Gloucestershire.
Click Whats on in my
area? at
www.ukconnect.org

Sussex Aphasia Befriending Scheme covers the


Brighton & Hove area. Befrienders provide
communication practice, advice and support for
Befriendees with the aim to reduce social isolation.
My friend Nicole, also a peer leader at Brighton &
Hove drop-in, became a Befriender. She feels it has
been great for her and those that she has supported.
Her favourite experience was when she helped a
Befriendee to be more independent and able to take
the bus by herself. I started by phoning my
befriendees husband when she arrived into town
and when she was getting on the bus to go home
so that he wouldnt worry, and now she can make
the journey for herself without her husbands help.
Nicole says: I like going to see Befriendees because
it gives me a sense of purpose. In the winter I just
sit at home so it makes me go out and meet lovely
people. What would Nicole say to someone
thinking of befriending? Go for it!

I saw first-hand the difference


Connect made to his life

Former Bromley
Mayor, Julian
Benington and
Connects Chief
Executive Sally
McVicker
12

At the start of his term as Mayor of Bromley, Julian


Benington nominated Connect as a chosen charity.
I became aware of Connects work after a great friend
of mine had a stroke. I saw rst-hand the dierence
Connect made to his life, he said.
A year on and Connect recently welcomed the Councillor
and his wife to its Southwark centre. To a chorus of cheers
and thanks from Connects Chief Executive, Councillor
Benington presented a cheque to Connect on behalf of
the people of Bromley for 12,000. Funds will go towards
a drop-in centre in Bromley, due to open later this year.
Bromleys current Mayor, Councillor Kim Botting, has
also nominated Connect as a chosen charity.