Event Date/Time: December 20, 2014 1:30PM – 3:30PM
Location: Northwood Parish Hall, Keelings Road, Northwood, Stoke-on-Trent, ST1 6PB
“Come and join us for a traditional fun packed Xmas party!”
There’ll be Santa, food, fun and lots of party games. All are welcome, but the party will be geared towards families with young children aged 0 to 10 years who have spina bifida and/or hydrocephalus.
Event Date/Time: December 17, 2014 10:00AM – 12:00PM
Location: Shine HQ, 42 Park Road, Peterborough, PE1 2UQ
A support group for parents/carers of children aged 0-5 years who have spina bifida and/or hydrocephalus/IIH.
Come along and enjoy a cup of coffee or tea whilst the children play.
Commenting, Shine Support and Development Worker, Sharon Lapsley said:
“This is a great opportunity to meet other parents. In addition a Shine Support & Development Worker is on hand to discuss in confidence any issues you may wish to raise.”
Parking is very limited at Shine but there is a Pay & Display car park located very close to our offices.
- Event: Shine Event
- Event Type: Social
- Event Cost: Free
Event Date/Time: December 16, 2014 12:00PM – 2:30PM
Location: Brewers Fare, Premier Inn, Etruria Road, Hanley, ST1 5NH (Map)
The menu is priced from £10 for two main courses, or the festive menu starts at £8.99 per person.
If you would like further information or to confirm your attendance please contact Liz Potts as soon as possible, by E: email@example.com or T: 07789 616469 or via Facebook!
PLEASE NOTE: A deposit of £5 per person is required by the venue and this will be deducted when you pay for your meal
Event Date/Time: December 12, 2014 10:30AM – 12:00PM
Location: Online event
“An opportunity to share concerns and stories about your experiences with spina bifida occulta, tethered cord and related issues.”
- Event: Shine Event
- Event Type: Social
- Event Cost: Free
For further information please contact Robin Barnatt via E: firstname.lastname@example.org or on Facebook.
Find out more about spina bifida occulta by CLICKING HERE!
Q: What is a Google Hangout? A: To find out CLICK HERE!
We value our members above all else – please make sure everyone who can benefit is signed up. It’s been great to watch Shine’s membership grow over the past four years and to experience the huge sense of community which is developing between people throughout England, Wales, and Northern Ireland.
Shine members pay nothing to join and automatically become a part of that community, able to receive Together, access our free health and education advisory services, get to know our regional Support and Development Workers and attend our support groups. Members can stand for election to the Shine Adult Members Council (SAMC) and put themselves forward for election to the Board of Directors. Many members have also become part of peer support networks events or formed friendships at a local level.
The SAMC, elected by Shine’s membership, monitors membership issues, advises on what is important and highlights issues of concern. At a recent meeting, the SAMC noted that many people with spina bifida and/or hydrocephalus (SB/H) were not aware of Shine, and that many of these would want to benefit from our services and our community if only they knew. We know that some members who ‘discover’ Shine have felt tragically isolated for years before they realise there is a supportive community available.
At the same time, we noticed that a lot of individuals with SB/H and their families who were getting really involved with our social networks thought they were members of Shine, but had never actually filled in the membership form.
Finally, we have some parents who think they are members but in fact they are not. If your child is under 16, then the membership is through you as a parent. Once a young person reaches the age
of 16, they become a member in their own right, and we communicate with them directly. If, as a parent, you want to be a member of Shine as an individual, then please complete the application form.
To make this much easier than before, we have developed an online form. This is available on our website at W: www.shinecharity.org.uk/membership
By Jackie Moore
I was born with hydrocephalus but wasn’t diagnosed until ten years ago. I had to finish work, so got involved with paper crafts – I was hooked, but found it hard to keep up. Then I found Shine and began making cards for the Benny Bear Club.
I also started a club for older people with spina bifida and/or hydrocephalus to share their interest in crafting. That has since become Craft4Shine, which has dozens of members from across the country.
Craft4Shine is a private Facebook group for Shine members and friends. As well as learning from each other, we make cards and knit blankets for Shine’s charity shops. The group has encouraged many people to start making things again where they had lost confidence and motivation, and has given many a renewed interest in life.
By Gill Yaz, Health Development Manager
Puberty is a difficult time for most young people, with changes to your appearance, hormones, and feelings.
Starting puberty early can make it harder to deal with, and for young people with learning challenges it can be very hard indeed. As well as the difficulties of mood swings and periods at a young age, children must also cope with having physical changes ahead of their classmates, such as breast development or body hair. They may also start to show sexualised behaviour, which might be difficult for the child, and others, to understand.
Early puberty also results in short stature in adulthood, because we stop growing once puberty has ended. This means the younger – and therefore shorter – we are when puberty begins, the shorter we will be as adults.
Most girls with bladder problems find it is worse (with more leakage) around the time of their period because the hormones relax the pelvic floor, which is crucial for keeping the bladder neck closed.
Having first signs of puberty before ten years old for boys, or nine years for girls, is known as Early Puberty. Showing signs of puberty under the age of nine for boys, or eight for girls, is classified as Precocious Puberty. This is common amongst children with hydrocephalus, and spina bifida with hydrocephalus. Recent research found that puberty started early, or very early, in around three quarters of girls and two thirds of boys in
children with shunts (but without spina bifida). For children with spina bifida, around half of girls and a third of boys experienced early puberty.
Why does this happen?
Because we don’t fully understand how puberty is controlled in typically developing children currently, we’re not sure exactly why this happens. The organ responsible for coordinating puberty and hormones (the pituitary gland) is found at the base of the brain. It’s thought that increases in pressure in this area, either before shunting, or during shunt malfunction, can change the pituitary gland and cause early puberty. Early puberty is also seen in children with third ventriculostomies (ETVs), which would support this theory.
It’s possible to delay precocious puberty for a few years, by giving the child a hormone that blocks the action of the body’s natural hormone. By delaying it the child is able to cope better with the changes when puberty is allowed to begin.
Timing can be difficult. By the time the earliest physical changes are spotted puberty is underway. However, the growth spurt that heralds puberty usually begins around six months before puberty begins. Spotting this can provide time to arrange to see your paediatrician, or get a referral to an Endocrinologist (a doctor specialising in hormones) to see if puberty can be delayed. It may not always be possible or desirable to delay puberty, but getting an opinion could be helpful. So, measure your child’s height every few months. If you think growth is especially rapid, you can measure arm span if it is difficult to measure height accurately.
If you have any questions, please contact Gill Yaz on E: email@example.com or T: 0208 8054181 – or YOU can leave a message below!
by Gill Yaz, Health Development Manager
Physiotherapy is a healthcare discipline which focuses on muscles and movement. Physiotherapists are trained to know how the body moves when we’re healthy, and how illness, injury, or disability can be improved with targeted exercises. Physiotherapists are also experts in how the brain develops control over our movements from the time we are born. Conditions of the brain, such as hydrocephalus, can delay or alter this development, which then has a knock-on effect on our everyday activities, such as handwriting or dressing.
When a child is born with spina bifida, some muscles may not work because the nerve which controls them is below the spina bifida lesion. This may mean that surrounding muscles are not used and they then become weaker, which in turn can cause circulation/tissue problems like lymphoedema and cellulitis. Advice from your physiotherapist will help keep muscles as active and strong as possible.
Specialist neuro-physiotherapists promote movement through encouraging brain development, and this is particularly helpful for children with spina bifida or hydrocephalus. Learning to move promotes learning in other areas of development, and is especially effective in the first few years of life. Some organisations, such as Brainwave, or Snowdrop Development Trust, can carry out assessments for your child, and set you up with a programme of activities to encourage brain development and movement skills. Unfortunately, some physiotherapy techniques, commonly used in countries such as Germany and the USA, aren’t available here on the NHS. Treadmill therapy and Galileo (a technique which uses a vibrating plate to help nerves and muscles work) are achieving great results. Hopefully, we will collect the evidence to get the NHS to offer these treatments.
Physiotherapists can help overcome back, shoulder, and neck problems which people can find an issue after many years of wheelchair use or walking with sticks. Over the years, posture can change, trapping nerves or causing pain. Targeted exercises, with the correct mobility aids, can make all the difference in keeping you mobile and pain-free. Myofascial release is a special massage technique used by some physiotherapists to help with pain arising from postural or muscle problems.
Sometimes, the symptoms of tethered cord in older adults can be helped a little by physiotherapy, delaying the need for surgery.
So, explore what physiotherapy can do for you and your family. If you feel you’re not getting what you need, ask why not? Keeping your muscles and joints in good condition is so important for your long-term wellbeing, and ensuring your baby’s brain development is as good as it can be is an investment in their future that will last a lifetime.
It was back in March that we first became aware of the story of Lottie Wilcocks and her assistance dog, Velvet.
At the time Lottie and Velvet were on their way to Crufts, the world-famous dog show. The pair had been put forward by the organisation Dogs for the Disabled to show what a great relationship they have together.
At Crufts, Lottie and Velvet came third in the online/ telephone vote and a number of people in the Shine community were asking who this amazing young lady was, and what having an assistance dog is all about.
With this in mind we travelled to West Yorkshire to meet Lottie and Velvet to find out more about how they met and what a difference it has made to Lottie’s life as someone who has spina bifida and hydrocephalus.