Have you heard of NPH?

Normal Pressure Hydrocephalus, or NPH, is a condition usually affecting older people that can go undiagnosed, sometimes for many years. Symptoms include difficulties in walking, confusion and memory problems similar to dementia, and urinary incontinence. Depression is also often associated with it. If treated, these symptoms may be alleviated or even go away completely. Many people have never heard of NPH and their GPs may not have come across it. If someone has a diagnosis they and their families can be left feeling isolated as they don’t know anyone else with the condition. They may also have lots of unanswered questions as we recently found out through the Shine50Plus project! NPH Meeting Oct 13

The project has recently facilitated a meeting of people with NPH and their spouses at the home of a Shine member in Oxfordshire. People came from as far away as Leicester and Somerset to have the opportunity to share information and experiences. We were lucky to have the expert advice on hand of Rosemary Ellis, who was employed by Shine as a Senior Health Adviser for many years and now volunteers for us. With Rosemary’s help the group is putting together a list of Frequently Asked Questions about NPH which we hope can be made available to people who are newly diagnosed. The group is also keen to set up a nationwide peer support network for people with NPH. So watch this space as NPH Support gets going!

Listen to our Shine50Plus members talking about living with spina bifida and hydrocephalus

It is Spina Bifida and Hydrocephalus Awareness Week! Hear what it is like living with these conditions

The Big Stitch!

Jackie and Jackie in yellow

Shine50Plus members belonging to the Crafty Silver Dreamers, part of the Shine’s Silver Dreams Project, 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 by knitting squares. They also took this opportunity to “wear yellow and Shine” to mark the beginning of Spina Bifida and Hydrocephalus Awareness Week (19th – 26th October). 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.

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 who have been supporting each other through all sorts of difficulties associated with their conditions, including social isolation. 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.

Keep on crafting you Crafty Silver Dreamers!!!

Am I alone or does anyone else have this?

This is the question frequently asked in the Shine50Plus Group on Facebook by our older members with spina bifida and/or hydrocephalus. It is asked about everything from pain in parts of the body only people with spina bifida experience to bumpy pavements for those with mobility difficulties. And there are always replies showing people are indeed not alone. But they didn’t know this before joining the Group, which now has over 60 members from all parts of the country, many of whom visit the Group daily.

Shine50Plus member and Shine's Health Development Manager

Sharing can help

Online peer-to-peer support for those who have access to it can be life-changing. One of our members found out in the Group about a medical procedure that his GP had dismissed as unsuitable. What he learnt from others in the Group gave him the confidence to pursue this option which has proved successful and completely transformed his quality of life.

Members have also been sharing their experiences of extended hospital stays as children which has certainly been an eye opener for the rest of us! Tin dinner plates and outside wards used to be the order of the day back in the 1940s and 50s. Things have certainly changed since then.

The Here and Past – a Shine50Plus member tells it like it was

Photo of Margaret Twyford

Margaret Twyford in her late husband Alan’s corner of the garden

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 the shunt had been invented and 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.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 came to measure my head! As I got older I faced more challenges, for instance when it came to finding a job, the D.R.O (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 better.

Ordinary People, Extraordinary Lives

I have just returned from a couple of days away recording the experiences of some of our Shine50Plus members to raise awareness of spina bifida and hydrocephalus. Growing up with spina bifida in the 1960s was a very different experience to that of children today. For a start their parents (and sometimes they David Phyall with Angie Coster in Coventrythemselves) were told they wouldn’t reach adulthood or “make old bones”. This seems to have spurred some families on to proving the professionals wrong and making sure their children were as physically fit and independent as they could possibly be. Just getting on with it and no excuses made were the attitudes of the day. Going to a specialist boarding school at a young age was not uncommon. These were strict establishments that sometimes didn’t allow parents to visit very often but which gave children the skills to manage independently that have carried them through into adulthood and middle age. Many contemporaries have died along the way due to medical complications that arise with spina bifida. Most people have had more operations than they can remember, on their feet, legs, back and for bladder and bowel management. Tissue damage in pressure areas is a nightmare. But life goes on and people get jobs and have careers, get made redundant, fall in love, get married, have children, get divorced, become become single parents, lose a spouse, care for their elderly parents and grandchildren or live the single life to the full. As one of our members said “I’m just ordinary” – but he has had an extraordinary life.

Shine50Plus members get crafty

Handmade Benny Bear card

Handmade Benny Bear card

It’s great to see the creative enthusiasm of our members, as the Crafty Silver Dreamers, led by Jackie Moore, Shine50Plus volunteer, join together across the country to collaborate on card-making and knitting activities to raise awareness of older people living with spina bifida and hydrocephalus and to make links with the younger ones. Fabulous handmade cards are now available for Shine to promote the Benny Bear Club for young children and to use for fundraising. People are sending in their knitted squares to make our cosy Shine50Plus blanket. This will form the centrepiece of a display in one of our south coast charity shops later in the year. Before that some of the Crafty Silver Dreamers are hoping to meet in person (none of them have met yet!) at Shine HQ in Peterborough to sew their blanket squares together and share all things crafty.

A radio star is born!

Sue Skinner and David Isom at Radio Plus Coventry May 2013This week saw Sue Skinner, a Shine50Plus Core Volunteer, appearing on a local radio show in the Midlands together with David Isom, Shine’s Development Manager for the area. Sue has Normal Pressure Hydrocephalus (NPH) and was raising awareness of this rare condition which is often misdiagnosed as a dementia illness. This was Sue’s first time in front of the microphone but you wouldn’t have known it if you had heard her. “I feel passionately about letting people know about NPH, a debilitating condition often with unknown causes which usually affects people over the age of 60 but which I acquired very young” says Sue. “The Shine50Plus project has given me a new lease of life and the confidence to do things I never thought I would do again. I have driven for the first time in many years and doing the radio show was something I couldn’t have imagined being able to do before. I am really looking forward to developing my publicity role as part of the Shine50Plus project”.

Tele-friendship Groups – the way forward?

Many of our members find it difficult to get out or travel distances. Finding alternative ways of making connections with others other than physically getting together is therefore a key aim of the Shine50Plus project. Those who use the internet have found they can “meet” people face to face using video links such as Skype and Facetime. They can join in “conversations” in our Facebook Group or Forum. But what about people who are not online? This is up to two thirds of our membership of people with spina bifida and/or hydrocephalus aged over 50.  They all have telephones. Last week saw three of our volunteers with these conditions  begin training sessions to become tele-friendship group facilitators. Martin F version4The training is being delivered over the phone by Community Network www.community-network.org, a social enterprise company who specialise in telephone conferencing and have a track record in promoting tele-friendship groups to combat social isolation.  “There was a lot of information to take in within a short space of time but I am finding it easier as the course goes on” commented Martin, one of our volunteer trainee facilitators who has spina bifida himself. We look forward to piloting our first group!


The children can be our inspiration and we can be theirs

Older and younger person FOW
Posted by Jackie, Core Volunteer with Shine50Plus:
As someone born with hydrocephalus but untreated until later on in life I have been volunteering with Shine50Plus, Shine‘s Silver Dreams project. I was pleased to be asked by Shine to assist with the Family Opportunities Weekend in Coventry with the under 5s who have spina bifida ad hydrocephalus. I was asked to make Easter cards with them and as this was my first time, I was unsure what to expect and what their abilities would be. I spent a number of weeks planning and preparing things for them to do and what an inspiration these children are. They had a great time – with the glitter and glues especially!

I will remember this weekend for a very long time and I will always keep in mind when I feel under the weather and struggling through the day, these little children, and know in my heart that all the hard work and fundraising of Shine staff and volunteers will be helping them now and in the future. I hope being a volunteer leading the crafting on the Silver Dreams project, we can incorporate some fundraising for future events for the children as we more mature members have a very good insight into what the future holds for them. I feel passionately that we should have these little ones in mind when we are setting up and fighting for things such as services and funding. We need to be an inspiration for them.