Tel: 01308 426372 Email: [email protected]www.shine50plus.org.uk Registered Charity No. 249338 The Shine50Plus project, funded by the Big Lottery, in conjunction with The Daily Mail as part of their Silver Dreams Programme, is now well under way. The aims of the project are to find new ways of connecting people with spina bifida and/or hydrocephalus, who are aged 50 or over. This is a pioneering generation with much to offer each other in terms of support and information about getting older with these conditions. Hopefully by sharing practical tips and experiences, people can have more confidence in managing the future. The project is driven by a dedicated group of Core Volunteers, Shine members from across the country who have come together twice so far (in Peterborough and Coventry), to plan and work on the projects’ activities. There is also a group of over 100 members who have said they would like to get involved. These are some of the project’s activities: Shine50Plus Facebook group This lively closed group now has nearly 60 members, all of whom have hydrocephalus and/ Silver Dreams News July 2013 Welcome to the second edition of Silver Dreams Newsletter! - written by and for Shine members in the 50 plus age group The over 50s are making their voices heard!
Welcome to the second edition of Silver Dreams Newsletter! - written by and for Shine members in the 50 plus age group!
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1. Tel: 01308 426372 Email: [email protected]
www.shine50plus.org.uk Registered Charity No. 249338 The
Shine50Plus project, funded by the Big Lottery, in conjunction with
The Daily Mail as part of their Silver Dreams Programme, is now
well under way. The aims of the project are to find new ways of
connecting people with spina bifida and/or hydrocephalus, who are
aged 50 or over. This is a pioneering generation with much to offer
each other in terms of support and information about getting older
with these conditions. Hopefully by sharing practical tips and
experiences, people can have more confidence in managing the
future. The project is driven by a dedicated group of Core
Volunteers, Shine members from across the country who have come
together twice so far (in Peterborough and Coventry), to plan and
work on the projects activities. There is also a group of over 100
members who have said they would like to get involved. These are
some of the projects activities: Shine50Plus Facebook group This
lively closed group now has nearly 60 members, all of whom have
hydrocephalus and/ Silver Dreams News July 2013 Welcome to the
second edition of Silver Dreams Newsletter! - written by and for
Shine members in the 50 plus age group The over 50s are making
their voices heard!
2. or spina bifida, many of whom check in daily to share
information and give each other support, both practical and
emotional. Everything gets discussed in private, from bowels to
benefits, holidays to hairdressers, cats to craft activities
whatever it is that people want to talk about. The group is looked
after by Sue Bennetton, one of our Core Volunteers, together with
Angie Coster, Project Coordinator Forum, Crafts and Recommendations
website Shine50Plus Website our dedicated volunteers Steve
Wilkinson and Janet Handley have worked hard to develop ways for
people to connect on our very own website www. shine50plus.org.uk
Crafty Silver Dreamers Knitting and card-making to raise funds for
Shine are two of the ways our volunteer Jackie Moore encourages
people to get involved and make friends through their shared
interest in crafting. Information on looking after yourself with
spina bifida and guidelines for GPs vital information for people
with spina bifida is being put together by our Core Volunteer,
Patricia Adley working with Gill Yaz, Health Development Manager.
Working closely with the staff at the Spina Bifida Clinic at
Chelsea and Westminster Hospital, guidelines on what GPs should be
doing to provide their patients with better care should also be
available soon. Telephone Friendship Groups Core Volunteers Martin
Fenney, Helen Robinson and Liz Potts have trained as
Tele-friendship Group Facilitators with an organisation called
Community Network. For those who do not use the internet this is a
really good way to meet up with others and share experiences The
impact of hydrocephalus/ spina bifida on the brain Another Core
Volunteer, Nick Woodward, is going to be finding out more about the
cognitive aspects of ageing by interviewing neuro- psychologists
from Westminster University specialising in this area of work. We
are hoping that some practical strategies that people can use will
come out of this. Campaigning Members have been providing evidence
for Shine of their experiences of healthcare as older adults with
spina bifida. At their suggestion a standard letter has been drawn
up which people can use to send to their MPs to campaign for NHS
specialised care Continue on following page Core Volunteer Group
Meeting in Petrborough
3. A word from the Chair by David Phyall I was puzzling over
the newspaper crossword, GGES (9, 4), when the phone rang last
September. It was Angie Coster from Shine who had been given my
name by a colleague, as someone who might be able to help with the
new Silver Dreams Project for the next 18 months. Well, I thought
to myself, its time limited and I have just stood down after many
years as a Trustee of a large charity, so I could do this. (I am
mindful though that Income Tax was introduced as a temporary
measure to pay for the Napoleonic wars and that 18 months could end
up being longer!). Several phone calls took place and then, Oh, you
sound just the sort of person to chair our Core Volunteers group,
said Angie. What have I let myself in for? I thought as I prepared
for our first meeting. I neednt have worried. It was a pleasure and
inspiration meeting the other Core Volunteers at our first meeting
in Peterborough in January; all of them, like me, over 50 and with
spina bifida and/or hydrocephalus. We ended up with some working
groups: crafts, IT networking and involvement, medical (looking at
providing advice for people with spina bifida and hydrocephalus and
for GPs), conference planning, and also a group who are going to be
connecting people through telephone conference calls. We had our
second meeting in May in Coventry. The progress of the working
groups was impressive. The determination, dynamism, and
productivity continue unabated. If this were a private company, it
would be growing at a pace and would be most profitable. Indeed, so
much so that much larger organisations would be looking to take it
over! It is a pleasure and a privilege to chair such a group of
amazing volunteers and I am confident in us achieving much in the
months to come. Ah, yes, just got the crossword clue scrambled
eggs! Internet Access The project has assisted several people to
start using the internet by providing a laptop, tablet or netbook
Publicity Sue Skinner has recently joined the Core Volunteer Team
and was interviewed on local radio in Coventry about her
experiences of living with Normal Pressure Hydrocephalus National
Conference This is to be held over the weekend of 1st/2nd March
2014 in Coventry venue to be confirmed. Dr Richard Morgan from
Chelsea and Westminster Hospital will be the keynote speaker. The
over 50s really are beginning to get their voices heard now!
Continue from previous page Get Involved! l Join the Shine50Plus
Group on Facebook l Become a Crafty Silver Dreamer knit or make
cards to raise awareness of and raise funds for Shine l Go on our
website www.shine50plus.org.uk and join the forum For more
information on getting involved with any of these activities
contact the Project Coordinator, Angie Coster on T: 01308 426372 E:
[email protected]
4. Im now a full-time wheelchair user, but for many of my 60
years living with spina bifida, I walked using sticks, preferring
not to use a wheelchair. Despite the challenges using a wheelchair
can bring, such as access to buildings, transport, etc., overall my
manual wheelchairs have given me much more freedom to get out and
about, and enjoy life to the full. In my work I run training
courses to educate people about living with a disability. In almost
every course, someone knows a friend or relative who refuses to use
a wheelchair. I can understand their resistance to a certain
extent. Ive experienced, as Im sure many of you reading this have
too, patronising attitudes and assumptions about our mental
capacity. Who has been in a situation where someone asks the person
youre with what you want rather than you directly? The does he take
sugar syndrome. Who has been unable to enter a building or use
toilet facilities because the business hasnt even thought about
their legal obligations under the Disability Discrimination Act /
Equality Act to make reasonable adjustments to remove physical
barriers, which was a requirement which came in nearly 10 years
ago? Things have improved over the years as more people encounter
wheelchair users. But there is still a need for greater
understanding, so more people will be prepared to use a wheelchair
alone or with friends, relatives or a carer to get more involved in
activities outside their homes. Estimates vary, but recent figures
suggest that there are 1.3 million people in the UK who currently
use a wheelchair. As people get older and mobility issues become an
issue for many, its imperative that wheelchairs can be available
for more people and the stigma associated with using one is
eliminated. Education about life in a wheelchair is important, and
the best people to provide that are existing users. I have a motto
on life which is If I can, so can you. I hope that as we share
experiences and information through this Shine50Plus Silver Dreams
Project, those of us who happily use and benefit from a wheelchair
can help those Keeping Fit! By Alan Cross Like many people in our
age group, I need to keep as fit as I can and watch my weight. I am
lucky in that I have managed to find a specialist gym at Queen
Marys Hospital in Roehampton, named after Douglas Bader, the famous
World War 2 pilot who lost both his legs. This gym is aimed at
people having rehabilitation, for instance after a stroke or an
accident, but it is open to the public. I found out about it
through a friend and have been going there for about a year. It is
exactly the same as any other gym, but the majority of equipment is
accessible to those in wheelchairs or with limited mobility. It
costs 10 a year to join and then a couple of pounds for each
session, so it is not expensive and who are resisting doing so,
perhaps for the reasons I outlined earlier. In 2008, Steve set up
International Wheelchair Day which is 1st March each year. The aim
is to celebrate this freedom and reflect on the challenges. For
more information see www.internationalwheelchairday.com To use a
wheelchair or not to use a wheelchair that is the question! By
Steve Wilkinson
5. I usually go between one and three times a week. It is also
a very sociable place to visit which makes it enjoyable. I used to
go to the local YMCA gym, which was also good value. Quite a few
gyms these days have adapted equipment and trained staff to help
people with all types of disability, make the most of what is on
offer. There were more muscled men at the YMCA but I never let them
get to me. I used to think Id rather look like me, than look like
you!. I would suggest to everyone that if they can, to check out
their local gym to see what it is like. I have certainly got fitter
over the last two years since I have been going to this one,
although I have to say I have not really lost any weight yet! And
there is always the social aspect to look forward to, if you are
lucky. I have just returned from a fantastic holiday at the Maison
des Landes Hotel in Jersey. It is a specialist hotel catering for
guests with disabilities. I kept a diary so that I would be able to
let other people know what to expect, as they may want to consider
this type of holiday. l Saturday We flew out on Flybe who have
collapsible arms on the aisle seats so I was able to slide
transfer. Met at the airport by a member of the hotel staff, and
offered refreshments on arrival at the hotel. Our room had a
profiling bed and hoist with an en-suite wet room, and there was a
safety alarm system. The hotel also had a heated hydrotherapy pool.
l Sunday We were taken into town in the hotels own minibus. We got
back and played pool (well, tried!). Quiz night our team only
scored 8 out of 20, but still a good laugh. l Monday We collected a
sandwich picnic lunch (provided every day if A fantastic holiday in
Jersey - by Lyn Jones you were away from the hotel). Trip to St
Helier really lovely beaches. Then taken to Ten Pin Bowling in the
evening, which again was a great laugh. l Tuesday Visit to Pearl
factory. Then taken on Island tour with a stop-off at a farm where.
Tonight was a Country and Western evening with guest entertainers,
which was really good fun. l Wednesday Another Island tour in the
minibus. We visited a huge indoor market. Tonight was a themed
Italian night. l Thursday Visit to the Gerald Durrell Conservation
Zoo, which was fab. l Friday Visited the Jersey Hospital Tunnel
which was very moving as it showed what it was like for the
Islanders when the Germans occupied Jersey. There were other trips
available and the hotel was also happy to try and accommodate
requests if people wanted to go somewhere special. I would love to
go back to do all the things that I didnt have time to do. Nothing
was too much trouble for the staff and I would highly recommend the
place. For more information visit www.maisondeslandes.co.uk or call
01534 481683
6. My personal shopping experience fantastic! By Pat Coley I
dont like clothes shopping at the best of times but I recently
needed to go for lingerie fitting, as we ladies do from time to
time. Dreading the whole experience as usual, I braved my local
Debenhams and ended up at their suggestion booking a Personal
Shopper. I would never have thought of doing this in a million
years but I have to say it was an extremely positive experience. I
was met at the entrance and taken in the goods lift (no Hi, my name
is Sue and I thought Id just share a little about myself with you.
Im a Mum of three lovely young adults and have a wonderful husband
of 28 years. I was diagnosed with Normal Pressure Hydrocephalus at
the age of 29 and it came as quite a shock having never heard of
it. It is also a very young age to have it diagnosed as it is
usually a condition affecting older people. After doing a lot of
research and coming into contact with Shine, I began to understand
more about its effects which explained what was going on with me.
At the time, I was a Reception/Year 1 Teacher, specialising in
children with special needs; a job I absolutely loved. I continued
in my job until my walking, incontinence and cognitive skills just
made it impossible for me. One day, Id set my little ones up with a
very simple sequencing task. When I put an example on the board,
one of them put a hand up, asking what it was. Mrs Skinner, but
thats back to front. We did laugh but it became very upsetting when
I couldnt remember the childrens names or parents. In the end, I
had to finish - leading to a huge sense of loss. Three years after
giving up work, I had a programmable shunt fitted and this has
improved my quality of life immensely. Im still what I choose to
call very dizzy but I blame that on being blonde...! I have a
dreadful memory and no sense of direction whatsoever and forever
leave things on around the house. My son still laughs after Id lost
my glasses for several days; he found them in the freezer along
with some knives and forks. We still laugh about it now. He will
often say when we cannot find something, if Mums had it, check the
freezer! The joys of what we live with However, I love my life and
make the best I can of every day. Im so looking forward to being
part of Silver Dreams. For me, its a way of giving a little back
after all the years of support I have had from Shine. Without them
Im not sure how I would have coped. So if I can help others to
reach out to each other through various forms of communication, it
would be amazing. Hydrocephalus can be an extremely lonely
condition. I know myself living with NPH, I struggle so much to
make sense of the simplest of things and to have someone on the end
of the phone or computer that understands how we feel, can make a
world of difference. A little bit about me by Sue Skinner one of
our volunteers with Shine50Plus Continue on following page
7. room for mobility scooter to manoeuvre into a passenger
lift!) to a room where I was offered complimentary tea or coffee,
and given the impression that nothing was too much trouble. I was
worried that this sort of service was reserved for the rich and
famous of this world, and the fact that I might want sale items and
have only a small budget would not go down well. I couldnt have
been more wrong. As well as my lingerie items, I was able to try on
and purchase other clothes that I needed, Hi my name is Jackie; I
have hydrocephalus and am a volunteer with the Shine50Plus project.
Being involved with the project has given me the opportunity to
have contact with some very talented and interesting people. I
really enjoy crafting, having started card-making after my first
shunt operation, and I set up the Crafty Silver Dreamers group so
we could link people over 50 who are into crafting activities. I
also got involved in helping out at a Shine Family Could you be a
Crafty Silver Dreamer? By Jackie Moore Opportunities Weekend for
young children and their parents which gave me more confidence. I
have made some great friends through this and feel a lot less
isolated with my condition. It was evident from the Shine50Plus
Facebook group that there was a lot of interest in crafting, so I
set up a Crafty Silver Dreamers group on Facebook. Current members
are posting pictures of their work, are encouraging each other and
chatting. It is really great fun to be part of! I am pleased that I
can put my skills to good use, giving me a purpose, and hopefully
inspiring other members, who may be sitting at home not sure of
what to do with their day, to have a go. However, people dont have
to be on the internet to join in. We would love to have some input
from members who are not online. We have two activities to get
involved in at the moment, both of which are going well. We are
knitting a blanket made with 8 x 8 inch squares sewn together, and
also making 3D decoupage cards with images of the Shine childrens
character Benny Bear. These will be for sale at Shine events and in
the charity shops. If you are interested and would like more
details about becoming a Crafty Silver Dreamer please contact me at
E: [email protected] or call Angie Coster, Project Development
Coordinator on T: 01308 426372 or Lynn Hart, Operational Admin
Assistant on T: 01733 421321. We look forward to hearing from you!
all in the comfort and unhurried atmosphere of my own changing
room, and looked after by my personal shopper. When I was unhappy
about the cost or colour of anything, she went away and came back
with alternatives. I even bought a pair of jeans which my friends
are in disbelief about! Sodont be put off the shopping experience
like a lot of us with mobility difficulties go for the VIP
treatment if you can and book a Personal Shopper. This has
certainly improved my shopping experience and is to be recommended!
Continue from previous page
8. I was born with spina bifida; I cannot walk at all. For many
years I worked as a social worker. I had a lot of contact with a
range of people, but I had the work/ life balance wrong, because
work was so exhausting, I had no time to develop a social life. At
the age of 50, I began to think about this issue, but working part
time would have had huge financial implications. Just before my
51st birthday, life, and spina bifida, took a hand. I developed an
abscess which burst leaving a massive cavity. I was bed-bound for
two years and had to take early retirement. In 2010, I was fifty
three and trying to rebuild my life, but I was very isolated. I
tried adult education classes and enjoyed them, but made no real
friends. In the spring of 2011, a local church was advertising the
Alpha Course. Alpha was started by a London vicar who wanted to
provide an opportunity for young professional people working in his
parish to explore Christianity. Alpha has moved far beyond those
wealthy upper class roots, and there are now Alpha courses in a
huge range of setting and countries. I had always considered myself
to be a Christian, but did not attend church and didnt know what I
believed. I had wanted to do an Alpha course before but it was one
of the things I put off during my working life. My Alpha course
started in April 2012 and I became a Christian as a result. I am
now a member of a very active church and the sense of belonging is
vital to me. Our Sunday service is both a chance to worship and to
meet friends. I attend other activities during the week and have
helped run an Alpha course! Alpha is great for anyone who feels
nervous of groups. It involves watching a DVD and discussion in
small groups. People are encouraged to contribute to the
discussion, but you stay in the same group for the duration of the
course, so you get to know people really well and, therefore, feel
safe. The Alpha slogan is explore life and life is worth exploring
so give it a go! The Alpha Course by Janet Handley How I became a
poster pin up girl by Karen Biddiss I got involved with Access
Dorset after receiving a letter from my Housing Association asking
for disabled peoples views about their needs. I have spina bifida
which is why I was asked. There was a feeling that officials did
not have disabled people skills and that Access Dorset could teach
them how to help and support disabled people. My experience along
with others was that because council officials dont understand our
needs, they ignore us and hope we will go away. So I started going
to panel meetings where we met with different council officials. I
was paid a small amount of money to attend. I even ended up as a
model on a local poster advertising Continued on next page
9. My Mum, Pamela, wrote an article for the Link magazine
published by ASBAH (Shine, as it now is) when I was 7 years old
back in 1969. It was about her experiences as Just a Mum giving
birth to me, because she wanted to give encouragement to all new
mothers of babies born with spina bifida. I always knew about this
article but was never allowed to read it. The Shine50Plus project
staff tracked it down and I must say, reading it 44 years later, I
am filled with mixed emotions. Both my parents have now passed
away; my Mum from Alzheimers in 2007, another road we had to travel
down, reluctantly. The intervening journey from 7 to 51 has been
one of discovery, achievements, disappointments and questions. At
age 11, I went to Treloar College, a specialist school.
Academically I did OK, but at the expense of emotions and
relationships, suffering separation and rejection issues which,
although unfounded, still live with me. At the age of 17, I was
ready to go to art school but couldnt face another 5 years away
from home and so got a job instead, leaving home a year later. I
moved from bedsit to bedsit, went on an office training course and
worked in Londons East End for four years which was rewarding, but
physically wearing. I did a number of other jobs but by the age of
35, the years of rushing around on crutches had taken its toll on
my knee and hips, and they began to let me down. Furthermore,
staring at a PC for hours each day played havoc with my shunt,
until in the end I had to stop working. A deep sense of failure
lingered for some years, followed by quiet acceptance. I couldnt
help but think I had failed my parents. Regretfully, I never
married or had a successful relationship, thanks to those old
demons I mentioned earlier. But I am the happy and proud uncle to 5
grown nephews, who have all succeeded in their own ways. Nowadays,
I live life quietly, in a small comfy council bungalow with my cat,
4 snakes and a tarantula! I still look after myself, Im a good cook
and am still very into art. Considering the original bleak outlook
my parents were given when I was born, back in 1961, I like to
think I have done OK. To the parents of todays kids with spina
bifida, I would say it is going to be a long hard road, but resist
the urge to carry them all the way. They can and will make it. I
did. Further Down the Road! by Bob Slaughter Access Dorset in my
newly adapted bathroom that they helped me to get. They nicknamed
me their pin-up girl and now lots of people know who I am, but I
dont know them! Access Dorset was just getting going as a user-led
disability organisation, and eventually I joined the Committee for
a year. I was the only person from my area in those early days, and
no one had heard of us and what we were doing. Now they do and
there are lots of members from my area who have been badgered by me
to get involved! We have been trying to establish an Continued from
previous page Independent Living Centre in my town, where people
can drop in for advice or a chat over a cup of tea, and also see
different types of equipment that might assist with daily living.
Disabled people often dont know who to ask for things in the first
place, and this is where we were hoping to fill the gap. We may not
get the centre, but we have raised awareness of the needs of local
people with disabilities. My involvement has given me a new lease
of life. I would say to anyone - see if there is a local disability
organisation in your area (you can do a Google search or call your
local council) and get involved if you can. We all need somebody in
our corner and thats what disability organisations are there
for.
10. valuable of all, I have received instruction from a
Continence Nurse and am now quite happily self-catheterising, which
has brought great relief as regards the bladder problem which soon
set in after my initial loss of mobility. The accompanying bowel
issues have yet to be resolved. Purely by chance, I discovered a
specialised disability gym at the Chasely Trust, Eastbourne. I have
to pay for sessions there myself (Ive become used to it!) but at 10
per week, I feel it is money well spent and unlike NHS physio, I
can do as much or as little as I wish. Dr Richard Morgan of the
Chelsea and Westminster Hospital holds spina bifida clinics and he
did warn me that if local services failed to provide prompt, joined
together treatment for my condition, it would deteriorate rapidly,
which is exactly what happened. My main bone of contention is that
although I am now receiving some sessions of treatment as described
above, some privately funded and some on the NHS, there has been no
cohesive coordinated care plan to address my full condition,
pulling all of these strands together. Shine is currently
campaigning for more specialist healthcare for people with spina
bifida. You can help by writing to your MP. Contact us for a copy
of the sort of letter you can send. Over a year ago, aged 62, I
completely lost the use of my legs. As a lifelong spina bifida
person, I had always felt fortunate that apart from a slight limp,
progressing from one to the use of two sticks in my late fifties, I
had enjoyed a perfectly normal life. All that stopped suddenly. The
degree of support, treatment and advice I have received since has
been patchy, to say the least. I was given exercises to try at home
but no access to the specialised gym equipment that was available
at the local hospital. I paid privately to see a neurology
consultant who referred me to the National Neurology and
Neurosurgery Hospital in London. They offered me a two week
in-patient stay for intensive physiotherapy due to begin in
September 2012. I didnt hear anything until April 2013 by which
time things had moved on and I decided against going. Having been
refused any substantive help from the local authority, I had to
spend a small fortune on a stairlift, electric bathing seat, small
indoor electric wheelchair and extensive concrete ramps as well as
adaptations to my steeply sloping garden to enable wheelchair
access. I had no proper advice and later found out I had spent 1000
on a wheelchair not right for my needs. On a positive note, I had
District Nurses to attend to my pressure sore/neuropathic ulcer
resulting from sitting all day (my wife does this now to save us
waiting in for them). Most Ups and Downs (A Journey into the
Unknown) by John Cornelius Get Involved! l Make a recommendation on
the website - tell others about the best accessible places to go
where you live l Tell us how you look after yourself if you have
spina bifida. What keeps you well? What health advice do you wish
youd had when you were younger? What health advice do you think
younger people with this condition should have?
11. Coping with social occasionsan email to my family and
friends before the event by Fraser Hughes I would like to attend
the family get together, but want to warn you in advance that
because of my hydrocephalus I find these occasions both enjoyable
and difficult, for the following reasons: l I easily get confused,
and am generally not able to cope with two or more people talking
to me at the same time, loud music, repetitive noises, especially
drums, car indicators, etc. l My memory is often poor, and I have
extreme difficulty in remembering large parts of my childhood,
specific events on demand, or even at all. l When someone asks me a
question, I can often answer, but it can at times take several
minutes or more for me to recall/ capture the words that I want to
speak, when I do know the answer. l Please can everyone wear a name
badge? Whilst I know everyone, it can take me some time to process
the information and produce the correct name (I have now learnt to
say to people who I know in the village I have lived in for 30
years, I know who you are, where you live, and who your children
are, but please could you remind me of your name?). l If you are
telling me something important, please also tell my wife, or write
it down for me in my notebook (which I carry in my manbag, which
contains my essentials which I may otherwise forget). Please do not
rely on my memory for anything. l Whilst I look normal, and can
sometimes walk short distances without walking sticks/a rollator, I
am not able to carry safely drinks/food or anything breakable, and
easily trip up, which I do frequently, and am quite clumsy. When
tired, my speech and walking can resemble that of someone who is
drunk. l I frequently forget why I am going upstairs or into a room
and due to bouts of ataxia, sometimes when I am talking to someone,
I start to walk backwards; not because I am bored, but because my
legs have a mind of their own! l Please understand that I have
great difficulty with modern technological items. I can use a PC
but do not use Facebook, Twitter, iPhones, iPads or even a laptop.
They are too confusing for me and too easily lost or broken. Nor do
I text, as it is far too fiddly for me. Otherwise, I am looking
forward to seeing you all. Get Involved! l Sign up to be in of our
new Telephone Friendship Groups l Get one of our standard letters
to write to your MP asking for better specialised care for people
with spina bifida l Write something for the next Silver Dreams
Newsletter l Register for the first ever Shine national conference
for people aged 50 or over, to be held near Coventry the weekend of
1st/2nd March 2014 For more information on getting involved with
any of these activities contact the Project Coordinator, Angie
Coster on T: 01308 426372 E: [email protected]
12. In the next newsletter l Members review of vacuum cleaners
l Caring and co-caring is this you? l Helping Others: Helping
Ourselves the first ever national conference for people with spina
bifida and/or hydrocephalus in the 50+ age group
www.shine50plus.org.uk To get involved or to find out more about
the Shine50plus Project contact Angie Coster, Project Coordinator
on T: 01308 426372 E: [email protected] New
Friendship Groups by Liz Potts Some Shine members in the 50 plus
age group may find it particularly difficult to get out and about,
or to travel long distances because of health or mobility issues.
Many say they would like to share experiences with others who have
been living with spina bifida and/or hydrocepha- lus. Not everyone
is on the internet. Finding ways to connect people is one of the
main aims of the Shine50Plus project. We are about to start up our
first Telephone Friendship Group and would like to hear from you if
you are interested in meeting others over the telephone. The groups
will be run by three of our Core Volunteers, all of whom have spina
bifida and/or hydrocephalus themselves and have had special
training to talk to people over the phone in a group. The way it
works is that the group meets once a week at a certain time, say
3.30pm on a Wednesday afternoon. Everyone in the group (between 6 8
people) waits by their phone at this time and receives a call. They
are then on the line together and can talk to each other, helped by
the volunteers. This could be a great way to make new friends,
share information and offer support to others in a similar
situation. Interested? Please call Liz on 07789 616469 or Angie on
01308 426372 Liz Potts