SPRING 2016
This Is Me... … is a Shine group for anyone between the ages of 11 and 18 who has Spina Bifida and/or Hydrocephalus.
A Golden Year ahead! 2016 is Shine’s Golden Anniversary year! We’ve been around for 50 years, first as ASBAH and then as Shine… We’ll be celebrating all year and officially launching this Spring, so keep an eye out on the Shine Facebook, the website (www.shinecharity.org.uk), This Is Me and more!
A New Year! It’s a New Year, and a new beginning – so here are some fun ways to get healthy and active this year, whether you make a New Year’s resolution or not!
Fancy an active challenge for 2016?
Can I play sports if I have Hydrocephalus? If you have Hydrocephalus, and have a shunt, you may worry about whether your shunt will be damaged through exercise. In fact, shunts are difficult to break or dislodge and most sports and activities should be fine. Here are a few tips to help: • It may be wise to avoid high contact sports where players are grabbed around the neck such as judo or rugby, or where it is likely you’ll get hit hard in your stomach • Non-contact sports like rounders, track events, cross-country running and tennis should be fine • Swimming is an excellent all round sport! If you have Spina Bifida you may not notice that your legs are getting cold, so don’t stay in the water for too long
Exercise can help keep you in shape. It helps to boost circulation, keeps your muscles strong and, if you regularly use a wheelchair, it can reduce the risk of pressure sores. There are loads of ways to keep in shape, including sports.
• Don’t hang upside down (eg from wall bars) for any length of time
It can help to set yourself a fitness goal. Aim for something you can achieve:
• Follow the safety advice for your sport. Wear helmets for anything where injury to the head may occur – such as horse riding, skateboarding, cycling, climbing, and canoeing
• Do a 5K in your wheelchair - lots of 5K races are wheelchairfriendly. It’s an achievable distance and a great opportunity to train for strength and endurance! • Complete the Great North Run - this half marathon is in September, giving you nearly 9 months to train. Shine has charity places in the main event (minimum age 17) if you want to raise funds too! • Take part in a TribalSeries event - these are fully accessible mass-participation events designed for people of all abilities who have a disability. Choose from ParaTri (complete alone or as part of a team), ParaSwim, or ParaRun/Push. For more information on how to get active, to find an event, or for active challenge fundraising ideas, contact Cheyenne on 01733 421307 or email cheyenne.graves@shinecharity.org.uk
Get yourself ‘Wheely Fit’! Here are some handy contacts for wheelchair sports: • www.getkidsgoing.com • www.parasport.org.uk • www.wheelpower.org.uk • www.efds.co.uk/
• If you have an LP (lumbar peritoneal) shunt, avoid twisting, as in aerobics and some dance, or sports where you need to twist at the waist, such as golf
• Contact Shine or your GP or Neurosurgeon if you have any questions
Kaela says...
“I have just started going back to wheelchair basketball and it is really good fun. I don’t use my wheelchair very often at home so basketball is a great way for me to build upper body strength. My arms ache a bit after a two hour session but this gets better the more I go. I love the fact that at wheelchair basketball I can go at the same speed as everyone else and everyone is treated equally. I also love swimming. This is a great sport for someone with Spina Bifida. My legs don’t work well in water but I am a strong swimmer and am good at all the strokes, using mostly my arms. My favourites are front crawl and breaststroke.”
Imogen says...
“I love cheerleading, swimming and trampoline lessons. Trampolining is the most amazing thing ever. I’m looking forward to being in a cheerleading show with my cousin and friends”
Are you drinking enough? You can’t survive without water. It makes up over half your body and is vital for you to work well. So drinking water is important. It doesn’t have any calories and (tap water) is free – and if you drink enough water, it can make your skin look great too! Here Shine’s Health Development Officer, Robin Barnatt, gives us a few tips about staying healthy. Drinking enough is something that all of us need to keep an eye on in hot weather or if we’ve been physically active.
Here are some tips for staying hydrated: 1. Keep a bottle of water with you during the day, so it’s within easy reach. That will also help to remind you to drink 2. Drink little and often (try to drink up to two 1L bottles every day if you can) 3. Drink water before, during, and after exercise 4. Limit how many other types of drink you have such as smoothies, juice, squash and fizzy drinks, as they may contain lots of sugar which isn’t good for you, and choose ‘low calorie’ versions with ‘no added sugar’ on the label.
Don’t get dehydrated If you don’t drink enough you may become dehydrated. Dehydration can be very serious and even lead to kidney problems, because your body stops getting rid of waste products, and can affect the balance of your salts and sugars. If you have Spina Bifida it’s especially important to keep well hydrated. One way to tell if you are dehydrated is the number of times you go to the loo and the colour of the urine – it should be pale yellow. If you don’t need to go as often as usual, or you only pass a small amount each time and it’s dark in colour, it’s likely that you’re dehydrated. Other signs include: having a headache, feeling tired and weak, mood swings and dry lips. Drinking more water should help to sort this but if you are worried talk to your GP or pharmacist. lt’s extra important for people with Hydrocephalus to make sure they remember to drink enough.
Shine Summer Rez Hello, my name is Daniella and I am part of the Shine Youth Council. I just wanted to tell you guys about the Summer Rez. It was the best holiday because I made so many new friends and did some really fun activities, including archery, swimming, different crafts and meeting goats! For any of you who are wondering whether or not you should go, do it because no matter how anxious you are it will be something you won’t regret! Yes - we really did meet some goats!
Do a ‘Wee’ check... How dehydrated are you? A quick way to test how well you are hydrated is to check the colour of your urine.
Can dogs play too? Very pale yellow or no colour Too much – cut back on the water a little. Pale yellow You’re doing well. Keep it up! Mid yellow Normal, but maybe drink a little more to get back on track. Dark yellow/orange You could be dehydrated. Drink some water now.
Is it a rat or a mouse?
Eat Yourself Healthy! Here are a couple of ‘Healthy’ recipes that you might like to try in the New Year…
Vegetable Chilli Serves 4 You will need: 1 dessertspoon of vegetable oil 1 onion, chopped 1 courgette, sliced 1 red pepper, chopped 410g tin chopped tomatoes 210g tin kidney beans, drained 1 tablespoon tomato puree 2 teaspoons chilli powder 1 teaspoon paprika 1. In a saucepan cook the onions for 5 minutes until soft. 2. Add the courgette and pepper and cook for a further 5 minutes. 3. Add the chopped tomatoes, tomato puree, chilli powder, paprika and kidney beans and simmer for 20 minutes. Stir occasionally. Make sure you taste your chilli as you might like to add some more chilli powder to make it hotter. 4. Serve with rice.
Rowan’s Triple Chocolate Cookies (OK, not quite so healthy but a yummy treat!) Makes 24 biscuits You will need: 100g soft brown sugar 100g golden caster sugar 100g butter, softened 1 egg 225g plain flour 140g milk chocolate, melted
Enjoy!!
85g white chocolate chips 85g plain chocolate chips Serves 4 Cut four medium size potatoes into half, then into quarters and then into wedges. Place them on a baking tray and drizzle over some vegetable oil, then sprinkle with garlic salt and paprika. Cook in the oven at 200°C or Gas No. 6 for 25 minutes until crispy. Turn the chips over halfway through cooking.
7. Bake in the oven for 8 – 9 minutes until golden but still soft to touch. 8. When firm and cool, place on a cooling rack and drizzle over the remaining melted chocolate.
1 teaspoon vanilla extract
Cheery Chips!
6. Use a tablespoon to scoop out balls of dough and place them on the baking tray. Leave enough space between the balls for them to spread.
1. Turn oven on to Gas No. 6 / 200°C. 2. Line two baking trays with baking parchment. 3. Mix together the sugars and butter with a wooden spoon. 4. Add the egg, vanilla extract, flour and half the melted chocolate. Mix well to form a dough. 5. Stir in the white and plain chocolate chips.
Youth Council The last Shine Youth Council weekend was held in October at the Zinc Arts Centre in Essex. We had a very busy weekend discussing the role of the Youth Council, what TIM members want from Shine and how this can be incorporated into Shine’s plans for the future, and a session on peer mentoring. The weekend finished with an information session on the history of Hydrocephalus and shunts, and the opportunity to see a shunt. Two of the main issues discussed were how TIM members can make contact with one another, especially those that are too young to be on the TIM Facebook page and how those already on Facebook can be encouraged to contribute. It was agreed that we would try to put TIM members in contact with one another by e-mail or letter. Included with this newsletter is a form for you to complete if you would like to do this. Please remember that if you are under sixteen your parent/carer will need to sign the form too. If you are on the Shine TIM Facebook page, look out for some new things happening – Daniella has set up Book Club and Rowan is uploading a weekly song. Please don’t be shy, we would love to see more members joining the Facebook group! It is a closed group, so no one outside of the page can see your comments, and it is monitored by Shine staff who can provide support with any issues you may have. Angela Bailey
What do YOU want from This Is Me? Would you like an interactive website? Do you want downloadable leaflets on ‘teen’ topics or paper copies? If we held information days what areas would you like covered education, independent living skills, good mental health, continence issues....? What sort of social events would you like? Please e-mail your thoughts and suggestions to angela.bailey@shinecharity.org.uk Registered Charity no 249338 www.shinecharity.org.uk 01733 555988
Many thanks for the generous support from the ScottishPower Foundation which has helped us to develop the Shine Youth Council.