1. Tel: 01308 426372 Email: angie.coster@shinecharity.org.uk 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: angie.coster@shinecharity.org.uk

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: jackiemoore59@me.com 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: angie.coster@shinecharity.org.uk

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: angie.coster@shinecharity.org.uk 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