SURREY ASBAH NEWS JULY 2010
Welcome to the summer edition of our Newsletter.
Forthcoming Events
Summer picnic
Please join us from 3.30pm on Sunday 18 July for a Surrey ASBAH picnic. We are once again meeting at the Old Pheasantry which is located at the top of Colley Hill near Lower Kingswood. The Prize Draw will take place at the summer picnic.
The Old Pheasantry is a large country house with 3 acres of gardens which includes a play area for children. There's a verandah which leads onto the gardens. In case of rain, we also have use of the large downstairs room, kitchen and loos. If the weather is good, we will stay until about 7pm to enjoy the early evening. There is wheelchair access to the house via a ramp.
Please bring your own picnic and hope for a sunny afternoon – we’ve been lucky so far! If you need help with transport or you need a companion with you to enable you to come to the picnic, please contact a committee member. We will do our best to help.
Canal Boat ‘Angel Blue’, Dapdune Wharf, Guildford
Many thanks to all those who said they were interested in another canal boat trip. As a result Angel Blue has been booked for the afternoon of Saturday 18 September 2010 from 1.30 to 4.30 - please reserve your place now! First come first served, so book early.
Angel Blue is owned and run by Surrey Outdoor Learning & Development and is fully wheelchair accessible. There is room for 10 passengers (lower age limit of 7 years) and the trip is open to all members and their families / carers. Prices have stayed the same so the trip will again be free to disabled members and £7 per head for everyone else. It will be subsidised by Surrey ASBAH.
The trip will be on the picturesque canal (Wey Navigation) and through a lock. Everyone is encouraged to get involved whether steering or dealing with the locks, although you might like to just sit back and enjoy the ride. There will be an experienced skipper in charge. Perhaps it would be good to meet earlier for a picnic lunch by the side of the canal.
If you are interested please contact Sarah.
Back to the top
Fundraising
Prize Draw
At our AGM in March, we launched the 2010 prize draw and you will have already received a few books of tickets with your last newsletter (and an envelope for their return).
Please help support our prize draw by selling as many tickets as possible as this is an important part of our fundraising activities. The prizes this year include:
Philips portable CD player; DAB Digital Radio; Bottle of champagne; Next Perfume and Toiletries; Teddy Bear; Bath and Hand Towel Set; Scented Candle; Mug & cuddly toy; Royal Jelly Handwash set; £10 Tesco voucher; Box of chocolates; Bottles of wine
The Draw will take place on Sunday 18 July so please make sure that you return your ticket stubs and money well before this date. Good luck and thank you!
Sponsored event
Ironmen and Ironwoman
Three clearly mad colleagues of Jim’s have signed up for a team Iron Man event in Copenhagen in August. Lisa will swim an amazingly long distance (3.8km in a lagoon), Kenny will power through a marathon 26.2 miles and Stuart faces a 180km bike ride. Lisa and Kenny are training hard, whereas Stuart is currently eating and drinking too much as he watches the World Cup on holiday in South Africa. Reality is going to bite hard when he gets home and gets on his bike but he is ironman enough to get through it.
The team is raising money for ASBAH and plans to split their sponsorship equally between National and Surrey ASBAH. If you would like to donate or to find out more please visit
http://www.justgiving.com/3inCopenhagen
Updates on their heroics will be provided in future newsletters.
What would you like to do?
London and South would like to hold a family day to get families together. What would you like to do? Please send your suggestions by email or phone to Diane. Suggestions so far are a pantomime trip, London Zoo, meeting at a hotel and laying on entertainment. The event can be held anywhere within the M25 north or south.
Living with hydrocephalus
Gill recently came to our coffee morning in Sutton and led a discussion about the effects of hydrocephalus. It was a fascinating morning and she has kindly written up the main points from her talk.
I recently had the pleasure of attending a Surrey ASBAH coffee morning, where I was asked to talk about the issues and challenges facing people with hydrocephalus. This is a huge topic, and different people may be affected in totally different ways, but the informal atmosphere of the event meant people were able to ask about issues they were most concerned about.
Working memory is often affected; we used to talk about short term memory being affected by hydrocephalus, but it is more useful to think about working memory. Working memory lets us hold information in our minds while we use it. For example, when taking notes in lectures, we have to remember what was said while our brain puts it into our own words and then we write it down. In adult life, we use working memory for many ordinary daily tasks such as cooking, or reminding ourselves to carry out tasks. People with hydrocephalus may not remember to do routine self-caring tasks, especially when in a strange environment where familiar cues may be absent. Even using checklists or visual timetables only help if you can remember to look at them! Some people find that saying the words they are trying to remember is helpful; different areas of the brain would be used, and the more parts of the brain working on remembering the same thing, the better the chances of remembering Starting young, playing games involving remembering objects, or words may help.
Many people with hydrocephalus have their sense of the passing of time affected. A study in USA some time ago found this made a big difference to people’s ability to remember to carry out tasks; they knew the task had to be done, but didn’t realise that ‘now’ was the time to do it. Building in structure and routine to the day, with prompts, may be helpful. Young children can be helped to learn what time passing feels like, with games around time using cooking timers, sand-timers and so on.
We talked about motivation, which can be a difficult aspect of hydrocephalus to appreciate. We need motivation to carry out tasks which we need to do but don’t want to, and this can often be an issue for people with hydrocephalus. People with spina bifida may have to carry out a number of tasks to keep themselves well, for example self-catheterisation, bowel care regimes or attention to their pressure areas. Personal hygiene and keeping on top of housework can also need some motivation, especially if you have a physical disability which makes these things a bit harder. If tasks are left for later, there’s a risk they may be forgotten completely, so it can help if children are brought up with a ‘do it now’ message, which can become a good habit. Finding the ‘want to’ in a ‘have to’ task, such as smelling fresher, or having guests come to a clean, tidy home can be helpful, Having someone to do the task together with may make it more fun, and help to break larger tasks into manageable chunks can prevent a feeling of being overwhelmed.
It might be difficult for someone to make decisions, which can lead to them ‘choosing’ the easy option. It’s important to remember that for a choice to be made, both options have to be possible. Sometimes people may need support to overcome motivation issues, and sometimes changes to the task itself to make it easier or quicker mean it’s more likely to be done. I think acknowledging that people with spina bifida often have to do things that are arduous and boring, such as catheterisation, can help with some of the conflict which families can get into, when prompting turns to nagging, and ‘leaving it till later’ turns to forgetting completely.
Much more was discussed at a thoroughly enjoyable morning, I do hope to be asked back to another.
National and Regional ASBAH
Request - National has made a request for families who would be either
i. happy to talk about how ASBAH has helped them, or
ii. happy to provide, at short notice, social comment on news items that relate to disability.
Families who are interested are asked to contact the Media Development officer, Darren Fower, at National.
The ASBAH website (http://www.asbah.org) is a valuable source of information. It provides a full list of publications which can be ordered on-line or by phone. Leaflets are in pdf format and can be printed from the website.
Advice for travel
Key Points When Travelling
In order to have a relaxed and enjoyable trip it is important to remember some key points before you make further plans for your travel:
• It is advisable to book your travel insurance prior to booking the holiday to ensure you don’t pay a deposit for the holiday and then find you cannot acquire suitable insurance. Remember the cheapest quote isn’t always the best. Check the excess costs and exactly what you are covered for before making a decision.
• Insurers should be made aware of any disability or pre-existing health condition you may have to ensure you are suitably covered during your trip. Insurers are entitled to differentiate between people with and without a disability and may charge more if they can show that insuring someone with a disability is a greater risk. They may, on some occasions, ask for a doctor to confirm that someone is well enough to travel.
• Carry a doctor’s note for all items of medication to avoid delay at customs. Take spare medication in case of delay or lost luggage, but keep this separately.
• For people with hydrocephalus it is important to drink plenty of fluids whilst flying to avoid dehydration. You may wish to take a CD-Rom of your latest scan; your neurosurgery unit may be able to provide this for you.
• For people with programmable shunts, avoid close contact with security equipment at airports and ports as the magnetic field can interfere with the shunt setting. It is advisable to carry a shunt alert card to show staff. For further information please follow the guidance given to people with heart pace makers or ring the helpline and ask to speak to a health adviser.
• It is advisable for all family members to be covered on the same policy to avoid complications in the event of a claim.
• Please note – if you have an annual policy, the insurer should be informed if there is a change to your condition during the period you are covered.
• The shunt alert passport document provides information about your shunt in eight languages: English, French, German, Italian, Spanish, Portuguese, Greek, Turkish.
• It is advisable to take additional medical supplies with you when you travel abroad. You never know when you may be delayed (the recent volcanic ash cloud delays for example) and it may not be possible to obtain exactly the same medical supplies such as enemas and catheters in other countries.
To find out more about the Shunt Alert Passport contact the Helpline:
Tel: 0845 450 7755 or
Email: helpline@asbah.org
Register your interest now for the London 2012 Olympic and Paralympic Games
The world’s greatest sporting events are coming to London! Tickets for the London 2012 Olympic Games and Paralympic Games will go on sale in 2011. You can make a start by registering your interest with London 2012. Click on this link below to register your interest. http://www.tickets.london2012.com/
Advertisement
The MedicAlert Foundation – speaks for you when you can’t!
The MedicAlert Foundation is the only non-profit making, registered charity that provides a vital life-saving service for people with hidden medical conditions and allergies.
MedicAlert members wear either a bracelet, necklet, wristband or watch, known as an Emblem, which bears the international symbol for medicine. The Emblem is engraved with important medical details such as main medical conditions, a personal ID number and a 24 hour emergency telephone number providing access to the member’s medical records and personal details from anywhere in the world in over 100 languages. In an emergency, medical personnel have immediate access to vital information on the back of the MedicAlert disc. By phoning the emergency number, they can gain further medical and personal information.
Membership starts from £25 plus the cost of your choice of Emblem. As a special incentive for members of Surrey ASBAH, if you call freephone 0800 581 420 and quote ASBAH you will receive a discount of £5 from the initial joining fee.
To view the entire range of Emblems, with a variety of styles visit www.medicalert.org.uk.
Mrs Angela Bailey – Telephone 01293 775775.
Mrs Diane Morgan -
Telephone 020 8659 3060
Mrs Jo Francis – Manager, ASBAH London & South Regional Office on
020 8449 0475.
Your committee members are:
Chair: Mrs Liz Tadd
Treasurer: Mr Jim Stoner
Secretary: Mr Simon Marsh
Other committee members:
Mrs Linda Corbett
Mrs Sarah Kelemen
Mrs Sarah Smith
Mr James Tadd
Please feel free to contact us if you would like help or advice, information about activities or fundraising or if you have some good ideas to pass on.
- Surrey ASBAH
- c/o ASBAH LSRO
- 209 Crescent Rd
- New Barnet
- Herts EN4 8SB
01293 775 775
Email Us