Silver dreams news edition 3

Silver Dreams News Registered Charity No. 249338

Welcome to the 3rd edition of the Silver Dreams Newsletter! - written by and for Shine members in the 50 plus age group

Shine50Plus celebrates THE BIG STITCH! Shine50Plus members belonging to the Crafty Silver Dreamers met together for the first time at Shine’s national office in Peterborough on 15th October to complete the blanket they have been working towards for the last 6 months. They also took this opportunity to “Wear Yellow and Shine” in aid of Spina Bifida and Hydrocephalus Awareness Week. Older members from all over the country have been knitting squares to make up this blanket which is to be dedicated to Liz Barnett, a member who died earlier in the year

T: 01308 426372 E: angie.coster@shinecharity.org.uk www.shine50plus.org.uk

and whose knitting wool was donated to the project by her family to help us complete it.

We were assisted by members of Handmade in Peterborough who kindly came in to give us a much needed hand with the stitching. Other craft items made by our members including greetings cards, bunting and a jigsaw as well as knitted items were put on display and, along with the completed blanket, will be sold in our charity shops in West Sussex.

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You never know when you might need it!

A Shine50Plus carer member’s experience of an Emergency Care Plan by Andrew Briggs I am the carer of my partner, Jenny, who has complex health problems, meaning she has to be cared for in bed most of the time. I have hydrocephalus and a visual impairment. In June this year, I had to be admitted to hospital urgently. Before the ambulance arrived, I managed to call the care agency that helps us and asked them to put into place our Emergency Care Plan. This is something that Lincolnshire County Council arranges when you have a carer’s assessment. You can refer yourself or someone else can do this on your behalf. I was hoping we would never have to use it, but there we were, relying on it!

Within two hours, someone from the Care Team visited Jenny and discussed her care needs with her. He agreed to arrange waking care for that night and in the end came himself, as he wasn’t able to find an agency to do it and Jenny had said she didn’t mind having a male worker. Meanwhile, in hospital, I was immensely reassured that she was being looked after well.

Fortunately, I was only in hospital for two days before being discharged home. I was impressed by the offer when I got home of a continuation of the excellent care that Jenny had received, with the relief of knowing someone was on hand to Continue from front page

Shine50Plus celebrates THE BIG STITCH! The Crafty Silver Dreamers was the inspiration of Jackie Moore whose enthusiasm and commitment to helping others has been unwavering despite her own health problems associated with hydrocephalus. Through this “microvolunteering” activity (people can do as much or as little as they want from the comfort of their own homes) lots of connections have been made between members with an interest in all things crafty. Some firm friendships have been established – all at a distance. People have also been encouraged to take up crafting again or as a new interest, and we have the pictures of people with knitting needles in their hands who haven’t done this for years to prove it!

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Keep crafting you Crafty Silver Dreamers!!!

assist me if needed. And the care we got for the first 48 hours was free. If it had been any longer, we might have had to pay towards it, but that first crucial couple of days just gives you the time to decide and plan what happens next.

Nobody could have cared for us better during this difficult time. Jenny knew that she was safe, and I was able to recover knowing that she was being cared for well in my absence. I carry around a key fob at all times, which was given us when we registered with the Carers’ Service and alerts people as to what to do in the event of anything happening to me. I would urge anyone who is a carer to find out if there is something similar in their local area. You never know when you might need it!

NPH Connections

Does anyone with NPH or their carer/family member want to make connections with others living with this condition?

NPH (Normal Pressure Hydrocephalus) is characterised by problems with walking, memory, and urinary incontinence. It usually occurs in people over 50 and can be difficult to diagnose. Once it is, treatment to alleviate symptoms may be possible. However many people have never heard of NPH and those diagnosed can be left feeling isolated. A small group of people with the condition are aiming to build up a network of contacts. If you are interested please contact Barry Perkins at E: barryjperkins@gmail.com or by contacting Angie Coster on T: 01308 426372.

The here and past (the 1940s and 50s)…

by Margaret Twyford

I was born with spina bifida in 1945 and there was a huge difference between the experiences of those of us born then and those born after us. By the 1960s, there were a range of surgical procedures available, but we managed and survived without.

When I was a baby, my parents were told “she will never walk, nothing can be done”. My grandmother, who was very determined, put dining room chairs back-to-back for me to walk through, and I ended up walking and was given knee callipers at five years old. I lived in a road with a primary school, but I wasn’t allowed to go in case I got knocked over in the playground.

There were no disposable incontinence aids, and I was in nappies until the age of thirteen which my parents had to pay for, as well as lots of other things, without support from benefits such as Disability Living Allowance (now PIP).

There was little information available to help us understand my disability. I was never told what hydrocephalus was and wondered why, every so often, someone at a residential school I went to measured my head!

One day when I was twelve, my younger brother said, “have you heard of Elvis Presley?”. I said “no”, and he replied, “he is wonderful, we will have to get his records”. To say that I ended up idolising him would be an understatement; he was God! I got all the information I could, was able to make friends locally and abroad, went to

functions, had parties with like-minded people and we started a club about him, with a good membership! What a way to get through your hormones and adjusting years as a disabled teenager. All for a man who didn’t know I existed!

As I got older I faced more challenges. When it came to finding a job, the DRO (Disabled Resettlement Officer) would send me off for interviews, and I would arrive to find a flight of stairs to negotiate.

My surgeon was excellent, but some of his young registrars knew little about spina bifida.

On one occasion I was asked “what questions should I be asking you?” and “when did you get spina bifida?”.

In 1971 I got married to a man who also had spina bifida; his parents had been told, “you don’t get girls with spina bifida!”.

I look back at that time of my life and reflect at the way it has changed, and not always for the Core Volunteer Group Meeting in Petrborough better.

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When time stood still This is a poem about a pet that has passed on and time is of no importance.

When you look up to the stars tonight, the brightest star shining will be just me, you will be sad and that I understand, as time has stood still since I had to leave you behind, but I am still with you and will never depart, time has no meaning as I have been freed from age, I live on through your hours, kept alive because I am in your heart, as you gave me life which was filled with love.

On the wings of a calling I am following a new path, but I will leave behind some of my love in a dream, as you made your place my home for all

A tribute to Kathy Smidmore …

by Diane Morgan

I first met Kathy back in 1995 when I started working for Shine. I would visit periodically to assist Kathy and her husband Steve, who also had spina bifida, with various issues that cropped up - the idea being I would advocate on their behalf. This turned out to be somewhat of a misconception. Kathy may have needed information, but she was more than a match for any officious busy body who troubled her and Steve with their administrative queries.

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Kathy was born with spina bifida, but her ‘spine’ was pure steel. She was feisty and opinionated but also kind and compassionate. Whatever her own issues, she was always interested in others’ lives and had a great memory for birthdays and significant dates for those she cared about. She had many interests and made lots of friends at her lace-making class and archery group.

those years, the unconditional love stays with me and I shine through the dark, I just felt so weak and needed to sleep.

All the times and memories that we shared, was a magical moment and will connect me with you, as I journey to my place among the heavenly stars, you gave me so many happy years and my living time where I had no fear, fed and kept me warm and in my darkest hours you gave me peace, now when I look down on you, you will know I am near, it’s my turn to throw a light in your darkest hours, as I shine down brightly to wipe away all your tears.

By Sue Bennetton. September 2013

Kathy held strong views about the many inequalities disabled people face. She was a vociferous member of her local association, South Thames ASBAH. Kathy and Steve were key contributors to ASBAH’s publication ‘Independent Living - Make it Happen’ printed a few years back.

Despite periods of poor health, Kathy and Steve never let this get in the way of making plans, whether it was to visit family in Sunderland and Hastings, go on holiday or attend concerts.

Kathy and Steve were a perfect fit and remained devoted to each other throughout their marriage.

The photo of Kathy accompanying this article was given to us by Steve. Kathy was a great inspiration and one of the founder members of the Shine50Plus Facebook Group

Rise and Shine!

by Rowland Bass

I attended the Rise and Shine event at Stoke Mandeville on 20th July and thought it might be interesting to give my thoughts on it. It was advertised as an adult lifestyle event to promote getting involved in social activities including sports.

The demonstrations of wheelchair badminton, basketball and dancing were enjoyable, and there was an opportunity to try them. We were also able to have a go at Boccia which is similar to bowls. Unexpected was the presence of the British Disabled Power Lifting Team, who were

Although it was a weekend event, I decided to only attend on the Saturday. The Shine team were already busy setting up when I arrived early, but the extra hour before the start gave me an opportunity to look around the stadium facilities, which I found impressive.

After David Isom’s introduction and warm welcome we were free to roam. The Shine area had a lot of useful information and provided quiet areas for discussion. Tony’s art class, Brush Strokes, and Rebecca’s sugar crafts, allowed you to get hands-on experience, whilst Val offered complimentary therapy options.

On the exhibition side, Maureen had obviously tried very hard to assemble a varied and interesting group of exhibitors, so it was disappointing for all that several exhibitors pulled out at the last minute. Those that were there were interesting and the staff attentive.

A Shine stand selling items of clothing was good, as while you can buy these online, the opportunity to see them and check sizes was really useful.

Rowland Bass

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Skiing in Sauze d’Oulx In 1992 my husband and I received a letter from the local Disabled Skiing Club inviting us to go skiing in Austria. We hadn’t even heard of the club, never mind the fact that we didn’t realise that we would be able to ski.

Although I was interested, John didn’t fancy it. I informed John that he would stay at his parents’ house for a week, while I tried this skiing lark out. I had a fabulous time!

Seventeen years later, and now over pension age, I headed off to Sauze d’Oulx in the Italian Alps in March this year with 28 other skiers and buddies from the club, to enjoy my sixteenth year of hurtling down mountains.

The airport at Newcastle hadn’t been informed by the tour operator that there would be 6 wheelchairs, 6 sit-skis and a number of walkingwounded travelling, so we got off to a bad start.

Having sorted that out, we managed to arrive in Turin Airport with all our equipment intact, and were duly transported in a coach up to Sauze d’Oulx, where we were also informed by the hotel management that they had not been informed about our wheelchairs. Fortunately, the lift could take a wheelchair and one other person, but the bathroom doorways were too narrow. We eventually sorted something out for each of the wheelchair people.

Monday morning, we were transported to the Ski School where the news was much better. We were all treated like VIPs, and introduced to our Continued from previous page training that weekend at the stadium. Several members of the team have spina bifida and competed in the Paralympics. We were invited to try it and I took up the offer. Whilst I am probably the wrong age to start taking up power lifting seriously, it has given me new ideas for when I am in the gym.

Possibly the most important benefit of attending the event was the opportunity to meet and talk to other people with spina bifida, and their partners and carers. I also met Liz and Nick from the Shine50Plus Group.

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I regret that I did not stay overnight - perhaps next time! I would like to say a big thank you to all the Shine staff and volunteers for arranging an interesting, useful and successful event.

by Helen Robinson individual ski instructors. This was the first time we had had a ski instructor for every disabled skier, as in the past we shared instructors and buddies.

My instructor, Andre, suggested that I should try one of their Tessier bi-skis, instead of using the one I had brought with me, as the Tessier had a training bar on which mine did not. It was much bigger than mine, but after one run, I fell in love with it. So easy to handle, and after a few minor adjustments, I found it so comfortable.

In previous years, I had only skied on the nursery slopes and blue runs, but this year, Andre had me on red runs on the first day!

Unfortunately, after three hours of skiing, my arms gave up and when Andre said, “Turn left”, 200 metres from the school, I went straight on into a pile of snow. Fortunately, we weren’t injured and he ended up skiing me back to base.

The rest of the week went without incident, and I had a tremendous week of skiing.

BMW run a sponsorship project with the Sauze d’Oulx ski school where they pay for all the instructors, lift passes and transport for all disabled skiers who visit the village.

Sauze d’Oulx is a quiet little village in the Italian Alps popular with English skiers. The skiing area is excellent, but it was expensive when it came to eating out.

Although we had a bit of bother with the bathroom/shower rooms, the hotel staff put themselves out to make our visit as comfortable as possible. It was clean, comfortable and the food was wonderful.

It was the best skiing holiday I had ever had!

Normal Pressure Hydrocephalus a book review by Sue Skinner Normal Pressure Hydrocephalus: From Diagnosis to Treatment

by Adam S. Mednik Published by Addicus Books ISBN No: 9781936374960 Available on Amazon (cost approx. £12) Sold

by The Book Depository

What our members say about …vacuum cleaners “ I use a Dyson DC35 Multi Floor rechargeable vacuum cleaner which is great for doing one room and for cleaning spillages, e.g. sugar.” - JH “I use a GTech model SW18 (www.gtechonline. co.uk) battery-charged carpet sweeper which is great and easy to use.” - SB “I have an autocleaner, with a remote control and sensor. So when it hits something it stops, goes round in a circle and double backs on itself. I can fully recommend it for hard floors; it’s not so good on piled carpet. When the charge has run out, it makes its own way back to the docking bay ready to be plugged in and charged up again. You have to bend down to empty it, but it does pick up the bits really well and you can see where it has been.” - LJ “I have an upright MacDonald Oreck vacuum cleaner – the lightest one they do.” - PC

I recently came across this book which was of great interest; having searched high and low looking for one on NPH I was elated to have found this one! It is very informative and easy to follow. The way it is written is in short paragraphs so can be picked up easily and read at ease. There are also a few life stories in it written by people with the condition which always makes interesting reading. The author seems to have a very empathetic understanding of Normal Pressure Hydrocephalus. Topics covered include: l l

l l

“Being an older person with SB, and a wheelchair user, cleaning the house is not easy.

I have just bought a Dyson DC38 Multi Floor vacuum cleaner. It is small, light, very powerful, and is easy to pull along due to its ball fitting. It only weighs 5kg and so is very easy to pick up and push around. Dyson staff are very helpful too. Dysons may cost a bit, but I would say that having their cleaners has helped me to retain a higher degree of independence, which is priceless.” - BS If you have any tips on cleaners, then please let us know!

an overview of NPH getting a diagnosis – general and neurological examinations and tests treatment for NPH after surgery.

I would recommend this to anyone who has NPH, and their family/carer.

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No regrets

by Janet Handley

The 1970s and 1980s saw a lot of discussion about young disabled people seeking ‘independent living’, often facing the vagaries of badly planned care packages, whilst living in rented flats. It was definitely frowned upon to stay in the parental home and benefit from good support networks in accommodation already adapted for your needs, where you felt safe and loved.

I attended a local university where I gained an upper second class degree and a social work qualification. I worked full-time until I was 50 and my mother and I had a good lifestyle, which included a lot of foreign travel to some wonderful places. I really believe that my life would have been less fulfilling had I followed the path of independence, and I do not regret the path my life took.

We are both getting older: my mother is 90 and I am almost 57. We have both developed new health problems and our lives are now more restricted. A shopping trip feels more challenging than a six week cruise once did.

We are apprehensive about the challenges

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the future holds. We have registered with a Crossroads Carers Scheme, which would offer either of us a few days care if something happened to the other one.

The balance of the caring relationship changes over time, first becoming more equal and then sliding the other way. For any ‘child’ to care for a parent requires role reversal but our situation is more complicated.

We feel isolated except for friends from Church.

We have no support from the Local Authority and pay for a cleaner, gardener and odd job man. A neighbour is good in crises. Tesco delivery men are great and our wonderful taxi driver does a lot for us.

I think this is a difficult issue for people to talk about. Is there anyone else out there in a similar situation who would be interested in making contact? If so please email me at E: janethandley@rocketmail.com or write to me c/o Angie Coster, Project Coordinator (Silver Dreams), 42 Park Road, Peterborough PE1 2UQ. I don’t know what we can do but as individuals coming together we can have a think!

It’s never too late!

by Evie and Geoff Miles

Evie: From an early age I was surrounded by people whose marriages weren’t working, including that of my own parents. So getting married was never something that I thought was for me. Also I didn’t think anyone would want me. Eventually I got fed up of disliking myself, and started attending assertiveness classes and hypnotherapy workshops. At one of these I met someone who remarked on what I was wearing and realised I enjoyed being noticed for the first time. Up till then I had tried hard not to be noticed! My spina bifida wasn’t diagnosed until I was in my 30s, and it was some time after this that a mutual acquaintance of mine and Geoff’s suggested we should meet. We immediately got along and were close friends for 3 years before our relationship developed into something more.

We became engaged in 1999, but for various reasons including health and family problems, it wasn’t until this year that we eventually got married. The ceremony was lovely. Since we got married it has changed everything for the better.

It has done something, but I don’t know what. I am so proud of Geoff – he is perfect in my eyes, and I can’t believe my luck that I met him.

Geoff: I had got to the stage in my life when I didn’t care whether meeting someone and getting married happened to me or not. In some ways I had written myself off. I then met Evie and realised how much I enjoyed being friends with this wonderful lady. I did think it would be nice if it was something more, and eventually it became so. We had all sorts of problems, including my own deteriorating health, and so much was happening that we didn’t move in together until 2008. Marrying at the end of July this year has brought us together in unexpected ways. We thought we knew each other very well after such a long time, but getting married has definitely deepened our feelings for each other.

It has given me a stable place in the world.

Congratulations to Geoff and Evie from all of us at Shine!

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Five hot tips for disabled cruise guests

by John Fletcher

As a travel agent who is disabled and with a visually impaired partner, I understand how great cruise holidays can be for those with accessible travel needs. However, with a little planning and forethought, a disabled person and their family can have an even better experience, and a considerably less stressful holiday. So here are my 5 top tips for a carefree cruise holiday for a disabled person…

1. Be honest Talk to your cruise specialist about how your disability affects you, and what sort of assistance you feel you may need. It always surprises me how many disabled cruise guests do not do this. Don’t play down your access needs. If you do, you really are not doing yourself, your agent or your cruise line any favours. Agents and cruise lines prefer to know exactly what you need so they can make sure that they can do all they can to make your holiday a great one. You will be surprised how much agents and cruise lines can do for you and

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sometimes even suggest additional help that will make life easier for you.

2. Check out your itinerary Ask your cruise specialist about the accessibility of the ports of call. Remember to use a tender boat; generally, the rule is that you must be able to step on or off it. So, if you are a full-time wheelchair user, a cruise with mostly tendered ports would not be suitable. Also, some ports may require a steep gangplank to disembark so these ports may not be suitable for a wheelchair user, and a person with visual impairment may find it difficult. Sometimes, if agents can forewarn the cruise line, they can find an alternative way off the ship for you. However, you should remember that if a cruise line cannot disembark, you it’s not a case of them being difficult - it is a decision they have taken to maintain your safety. A good cruise specialist will always talk to a cruise line to establish the suitability of an itinerary if needed, so choose your itinerary carefully.

3. Choose your ship carefully It is a fact of life that not all ships are suitable for all disabled cruise guests. Some of the smaller and older ships may not have wheelchair accessible features, and other lines do not have a DEFRA licence for assistance dogs.

However, your cruise specialist, if he or she is fully aware of your needs, should be able to find a suitably accessible ship for you. Some lines such as NCL, Royal Caribbean, Celebrity, Cunard, Princess and P&O are rightly proud of their accessibility for disabled clients, and given warning, go the extra mile for their disabled clients.

Ask your cruise specialist about some of the accessible features of the ship. Some of the features and assistance that I have arranged in the past for clients have been large print menus and bulletins, wheelchair accessible cabins, and some ships have features like accessibility hoists in the swimming pools, guide dog spending trays, and raised lettering on signage around the ship and in lifts.

4. Think about how you are going to get to the port If you are flying, my advice is always take advantage of assistance. It can cut down on the stress of getting to your gate on time, and with many airports being spread out, it can mean long walks for those with walking difficulties. As a person with a walking difficulty, I am always glad of the wheelchair ride. Also, ask your cruise specialist to arrange a private accessible transfer. It is possible to arrange accessible transfers from your home to either an airport or port, so do ask.

5. Share your experience

What a difference a year makes!

by Angie Coster, Project Coordinator (Silver Dreams)

Autumn 2012 saw the start of Shine’s Big Lottery 18 month funded project for the over 50s run in conjunction with the Daily Mail as part of their Silver Dreams Programme. It began life as “The Innovative Guide to Ageing with Spina Bifida and/or Hydrocephalus” and became Shine50Plus – a much easier name to remember and say!

Over a year into the project, Shine members in this age group have come together to create an identity that is now firmly established. They have raised awareness of the issues around living with spina bifida and hydrocephalus that can particularly affect people of this generation.

As well as mobility, continence, cognitive, and medical problems often not addressed in any coherent way by health and social care services, there is also the social isolation that many people experience as parents die, employment finishes and getting out and about becomes more difficult. On the plus side, we have witnessed the many achievements of members in organising events, running successful businesses and careers, keeping fit, volunteering in their local communities and for Shine, being active grandparents and campaigning for better services.

Our core volunteers have worked hard to develop and support Shine50Plus activities. We still have lots to do with a national conference coming up next year and tele-friendship groups to organise – but the over 50s are looking good and what a difference a year makes.

As a cruise specialist, I am always interested to hear from my clients what they enjoyed about their holiday and what, if any, improvements can be made. I, like many cruise specialists, am always looking for how we can improve your experience and by sharing yours, we can help make improvements on your next cruise.

There is a saying that there is a cruise out there for everyone, and I am a firm believer that this is certainly true for disabled cruise guests.

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A lifestyle event for adult members with spina bifida/hydrocephalus

A Pioneering Generation Are you aged 50 or over?

Shine are holding their first ever conference for people in this age group with spina bifida and/or hydrocephalus as part of the Shine50Plus Project and Shine’s Life Long Opportunities Programme

The Academy, Holiday Inn, Coventry, M6 Junction 2

Hinkley Road, Walsgrave, Coventry CV2 2HP

From 12:00pm Saturday 1st March until 12:00pm on Sunday 2nd March 2014 Conference to include:

Presentation by leading medical specialist in spina bifida l Latest research on impact of hydrocephalus l Workshops on mobility, continence and social media l

Closing date: 10th January 2014 Come along and hear other peoples’ experiences and celebrate the achievements of this pioneering generation!

To book your place contact Lynn Hart at Shine 42 Park Road Peterborough PE1 2UQ E: lynn.hart@shinecharity.org.uk or T: 01733 421321

For more details contact Angie Coster, Project Coordinator (Silver Dreams) Liz Potts E: angie.coster@shinecharity.org.uk or T: 01308 426372

In the next newsletter… l Volunteering - your stories

l Focus on NPH (Normal Pressure Hydrocephalus) l Shine50plus - next steps

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

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www.shine50plus.org.uk

£10

Registration Fee