July 2016
This Is Me...
… is a Shine group for anyone between the ages of 11 and 18 who has Spina Bifida and/or Hydrocephalus.
The Holiday Issue
It’s Holiday Time!
Shine in the Summer
Going on holiday? Robin Barnatt, Shine Health Development Officer, shares tips for a great time... It’s good to get away! If you have spina bifida or hydrocephalus, preparing well can help you have a great time. Wherever you go, take your shunt alert card, any prescriptions, enough medication, and equipment such as catheters – you can get handy all in one kits, plus hand cleanser and wipes. (Shine Home Health Delivery can arrange this – if you want to be part of the scheme, let me know via Facebook or email robin.barnatt@shinecharity.org.uk or 01733 421355.)
Relax, have fun and try new things over the holiday – Angela Bailey, Shine Support and Development Worker shares some ideas… Enjoy food and fun with friends and family – a DVD, pizza and popcorn evening, picnic at a park, a ‘Bake Off’ challenge (you could ‘sell’ your cakes to raise funds for Shine!) or try your own ‘Beach Party’ – with our fruit cocktail too (page 4)! Get active – why not take up a new sport such as tennis (parks often have courts you can use for free), swimming, bowling, archery or boccia, or try the local gym?
If you are flying, split medication between your hand and hold luggage (and follow instructions at the airport on labelling liquids). If you have a shunt, take your latest scan, and unless your neurosurgeon advises otherwise, flying in a regular jet is usually fine (though a small, unpressurised plane may not be – seek advice first). The airport whole body scanners are usually fine, but let the staff know that you need the same care as someone with a pacemaker. Make sure your travel insurance covers you for your existing conditions and all the activities you want to do on holiday. If you can’t feel your feet well, never walk barefoot, use plenty of suncream, and moisturise and check your feet and legs regularly to keep them in tip-top shape. Oh, and remember to drink plenty of bottled water too! Robin
For book-worms... check your local library for the summerreadingchallenge.org.uk or set up your own challenge and see how many books you can read over the hols! It’s good to recycle… enjoy a ‘Swap Party’ with friends to exchange clothes, DVD’s, games and anything else you no longer need. Check out the offers – there are some great films coming up (page 3). If you receive DLA or PIP, see www.ceacard.co.uk as you may qualify for a carer to go with you for free. Look out for vouchers in newspapers, on cereal packets or online. See National Rail’s daysoutguide.co.uk and www.accessibleguide.co.uk for great ideas, offers and accessible places to visit all over Britain… Angela
Inside – find out how Millie is having fun this summer! Find more news and sharing on your This Is Me Facebook group (for over thirteens) www.facebook.com/groups/Shine.ThisIsME
A Shine Summer of Sport! Get sporty this summer – there’s plenty of sport to watch or do!
Rio, here we come! Joy is off to Paralympic Games, 7th-18th September... Shine member, Joy Haizelden, 17, from Southampton, is set for Rio, Brazil, as part of the GB women’s wheelchair basketball team at the Paralympic Games. Joy, who has spina bifida, was delighted to have been selected: “This is just the beginning, let the hard work begin!” Track Joy’s progress @JoyHaizelden
Getting a kick out of life...
Gareth’s arms only challenge
When Garin Davies from Caerphilly was diagnosed with spina bifida occulta at the age of 14 it knocked his confidence so much that – for a time – he gave up the thing he loved most, kickboxing. But Garin decided to persevere with training and within two years was invited to join the Welsh kickboxing squad!
At 15, Gareth Picken from Cheltenham completed an amazing 100 miles swimming and 100 miles wheelchair racing in just six months to raise funds for Shine. Gareth, who has spina bifida and hydrocephalus, uses only his arms for these sports. He got his first racing chair in 2014, trained hard and made it to the England Nationals! Gareth’s advice for budding young sportspeople? “Don’t think you can’t do things – you can do things, but differently. If you want to do something just do it – don’t let your disability stop you.”
In the Spotlight Check out… the cinema
Hello! My name is Imogen. I am 14 years old and live in Sandwich, Kent. I have hydrocephalus. I’ve had four shunts since the age of five months old because I had meningitis as a baby. I have had lots of hospital visits to London. Recently I had my shunt valve changed to a programmable one with an antisiphon device.* They also inserted a monitoring device because I had slit ventricle syndrome* and this was causing me to get bad headaches. This new shunt feels very strange and is taking some getting used to! I am in year nine at Sandwich Technology School. It is a very large, busy and noisy school but I get lots of support with my learning and my Teaching Assistants are really supportive. They have extra supported study groups running after school if I need to catch up on anything I have missed out on, as I have lots of appointments. I often need help with exam revision as I find exams tricky. I love going swimming whenever I can. It makes me feel really good about myself and I’m really good at it. I really enjoy cooking at school – I am creative and find it an easy subject. All of my family (including my dog Millie!) enjoy tasting what I have made. I also like to draw and colour – I find it really chills me out if my mind is too busy. School can be really hard work for me so I look forward to the summer holidays – I’m so excited!
Along with other great films coming out this summer, including Ghostbusters, The Legend of Tarzan and Star Trek Beyond, will be Steven Spielberg’s new blockbuster, The BFG. Sophie (Ruby Barnhill) befriends a friendly giant named the BFG (Mark Rylance) as they set out on an adventure to capture the evil, man-eating giants who have been invading the human world... The original BFG, written by Roald Dahl, is available in print and as an audio-book, narrated by David Walliams. Did you know that Roald has a connection with hydrocephalus? When his son Theo developed the condition after an accident, Roald became so interested that he developed a much improved shunt device, which helped thousands of young people with hydrocephalus.
Imogen
Serves 4 You will need – 500 ml orange juice 500 ml cranberry juice 500 ml lemonade
Millie relaxing after one of Imogen’s fabulous feasts ... ready for some action! *anti-siphon device – a one-way valve that makes sure the fluid being drained goes the correct way *slit ventricle syndrome – a condition that can happen in a few people who use a shunt, where the ‘ventricles’ or chambers in the brain become drained of fluid and the shunt cannot work properly.
The BFG book illustration by Quentin Blake (courtesy AP Watts at United Agents)
Summer Orangatang Cocktail Invite some friends round to try this refreshing summer special.
Mix the juices and lemonade together in a large jug. Serve with ice, a slice of orange or lime and a straw!
Enjoy fun and fundraising by holding a Shine Bright Quiz! Find your pack at www.shinecharity.org.uk/quiz or email us at fundraising@shinecharity.org.uk
Wear yellow and Shine!
Summer Puzzle Fun
Have fun wearing yellow and raising funds for Shine! You can wear yellow, bake yellow, ride yellow, sing yellow – whatever works for you... See www.shinecharity.org.uk/wyas for more!
Unscramble the letters on each scoop to find out what ice-cream flavours you can enjoy over the summer! 1. ________________ 2. ________________ 3. ________________
Celebrate with a Shine pin!
4. ________________
To celebrate Shine’s Golden Anniversary Year, why not buy a Shine pin? Avaliable on ebay for only £2. There are lots of other fun things to buy on the Shine ebay site too! www.stores.ebay.co.uk/shineukcharitytrading
This Is Me
is your newsletter! We love to hear from you and thank you for sending your ideas for This Is Me! Keep them coming! Email angela.bailey@shinecharity.org.uk or share your ideas via your Facebook group www.facebook.com/groups/Shine.ThisIsME
5. ________________ 6. ________________ 7. ________________ 8. ________________
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9. ________________
Shine Summer Days word scramble cheab ensrsecun oftlabo oplo lodyahis rbueecba reamwntelo '
Summer puzzle: 1. strawberry 2. vanilla 3. pistachio 4. cherry 5. peach 6. coconut 7. coffee 8. chocolate 9. mint Word scramble: Beach, sunscreen, football, pool, holidays, barbeque, watermelon (School’s Out!)
SHINE – Spina bifida • Hydrocephalus • Information • Networking • Equality Shine, 42 Park Road, Peterborough, PE1 2UQ www.shinecharity.org.uk • firstcontact@shinecharity.org.uk • 01733 555988 Registered Charity No. 249338 • VAT number 135 6056 23 Printing kindly sponsored by Irwin Mitchell solicitors
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