www.pwsa.co.uk

PRADER-WILLI SYNDROME ASSOCIATION UK

Cure the challenges of life with Prader-Willi syndrome

The Newsletter for Adults with PWS written by Adults with PWS

Issue number 13 Autumn 2020

Reg.Charity No. 1155846

Taylor’s

new lease

of life!

2

The Adult PWS Focus Group

Hi Everyone!Welcome to your autumn edition of “Wise Owl Feathers”! Wise Owl Feathers is a magazine written by adults with PWS for adults with PWS.

We have had contributions from lots of adults with PWS in this issue which I’m sure you will find really interesting. We need more articles though for the next magazine in January so do send in your articles about:

• Places you have visited

• How you exercise

• Books you have read

• Films you have seen

• Your pets and anything else you would like to write about or would like to discuss with other people with PWS

Send them through to jhorsfall@pwsa.co.uk

Looking forward to hearing from you!

Healthy Futures We wanted to put together “easy read” information for our adults (16+) with PWS and, thanks to Aviva, we have been able to do this!

We asked the OWL Focus Group to tell us which subjects they felt were most important to them and should be included. They suggested three subjects initially:

• How to cope when I’m feeling anxious or upset

• Relationships, Social Life and Hobbies

• Vision and Care of the eyes/healthcare

So we put these together into a “Healthy Futures” folder and presented to it to the OWL

Focus Group for their opinion. They were very positive and found it really helpful. So we decided to launch it at the Nene Park “Walk Over PWS” 2019 event where we distributed it to around 50 adults with PWS. We intend to gradually add to the contents to produce a really useful tool for our young people.

If you haven’t received your “Healthy Futures” pack and would like a copy please either email mrowley@pwsa.co.uk or pwsa.co.uk or phone (01332) 365676

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CChhaarriittyy NNoo 111155884466

 

 

 

 

 

   

 

 

 

 

 

 

HHEEAALLTTHHYY FFUUTTUURREESS AA gguuiiddee ffoorr aadduullttss wwiitthh PPrraaddeerr--WWiill ll ii ssyynnddrroommee

PWSA UK Annual General MeetingSaturday 28th November 2019, 10am-10.45am

Our Annual meeting will be held over Zoom this year and it is an occasion where our Trustees report back to members the activities of the Association the financial year 2019 to 2020. It is also an occasion where Trustees are voted onto the board.

Our Annual meeting (AGM) will be held over Zoom

• Trustees (people who plan how we work), will tell our members what the Prader-Willi syndrome Association has been doing this year.

• Trustees will be voted onto the board.

Plan for the AGM Danny Leslie, our Chairman will welcome members to the meeting 1. Members will read and discuss the notes

from the AGM last year on 23rd November 2019

2. Our chairman will read his report3. Susan Passmore is our Chief Executive. She

will read her report4. Trustees will tell members about how we

have spent our money this year.5. Members will be asked to give their

agreement to choose Auditors (people that check our bank accounts)

6. Some people will resign from the group of trustees

7. Some people will be elected to the group of trustees

If you are a member, and interested in attending the Zoom AGM, please email admin@pwsa.co.uk and we will send you an invite to the meeting.Charity No. 1155846

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Issue 13 Autumn 2020

Stephen’s Scottish breakHi, I’m Stephen James Hagger, aged 35. I have just come back from a lovely holiday in Scotland. We stayed in a three-bedroom lodge in Loch Lomond and visited Edinburgh for the day. We all had a lovely time together. I’m lucky to have the support of my parents whenever I go to visit for a holiday, as they are always careful with me while at home. I’m lucky to have a mum who does the cooking, cleaning, washing and ironing for us all when I’m at home but that’s the not the only reason I’m writing

this today. I would like to wish my mum a very happy 70th birthday from Kevin, Kelly, Stephen and big brother and sister who are called Paul and Trisha. We hope you all have a wonderful birthday as you deserve and I’m proud to have a caring mum like you.

Charles Warner’s Alton Towers adventureHello Everyone,It hasn't been long since I last contributed to Wise Owl Feathers. This time I am going to talk about Alton Towers where I went over the weekend.On Saturday 19th September, I got up very early at 3.45am and got changed and went in the car. We drove towards Alton Towers for a few hours and stopped for a toilet break and a hot drink around 7.30. We then got back in the car and had breakfast in the car as I packed some Weetabix and some milk along with a fruit box. We then arrived at Alton Towers at 9.30am. We had parked at the top of the hill, so we had to walk down and joined the queue to get into Alton Towers. We then showed our tickets as they were prepaid in advance. We then went to the box office to find out about fast-track, but as another group was going, they very kindly added us on and we all got a red armband each which allowed us to have unlimited rides all day.The first rides we went on were The Smiler and Oblivion. The Smiler was an upside-down ride as it had 14 loops. The ride did the first seven loops and then stopped for a few seconds as it said halfway. It then carried on by going up a really tall track and before you knew it, it went down again and did the next seven loops and came to a stop and that was the end of the ride. We then went on Oblivion which went up a tall track and then went around on the track and came to a standstill over a big black hole for a few seconds. It then went down the big drop really fast and came to a stop which was the end of the ride. We got a light lunch which was just a shish kebab wrap. We were told it was best to have a light lunch because of the rides going upside down. We then went on Wicker Man, Galactica, Nemesis and Rita. Wicker Man was a ride that just went round and

round like a rollercoaster but very fast and I got a cap to remember the ride. Galactica was a ride where you flew. You sat in your seat and the the floor went down and your seat went up and then turned you face forwards and went really fast and made you feel like Superman. Nemesis was an upside-down ride as well and went really fast. Rita was where I got bruises as it went really fast when it started and then went round and round and back to the beginning. Once we had gone on all the rides we went on the rides that we liked again, so I went on Smiler five times, Oblivion three times and Wicker Man a few times. We also had quite a long time in the park as it was Oktoberfest. So we all had until 8pm and we went on Wicker Man last to get a better look at the ride as it gave out flames.

At 8pm we went back to the car and drove to our hotel. We then went to Brewers Fayre to eat. I then had a shower in the hotel and went to sleep around 12am as I was very knackered. We all then slept until 8.15am,, but I kept my member of staff up with my snoring. We then had a shower and got changed and went to breakfast for 8.45. We then set off home at 12pm. We got to Bristol and got stuck in traffic as a lorry had overturned and was spilling petrol all over the place. So they had closed the road off and made us drive the back way.

Wise Owl Feathers - The Newsletter for Adults with PWS

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Book & Film Reviews - By Francis Booth

Book One - Blood Sisters'In this sensitively and brilliantly crafted novel is a story of transition from the innocent ideals of childhood to the reality of adulthood amidst the beauty and violence of Africa.'

In Kenya during the 1950s three girls, from vastly different backgrounds, during their childhood in the Kenyan Highlands become blood sisters. The promise that nothing will ever destroy the bond between them. This is tested to the limit by the legacy of the Mau Mau rebellion and the tensions and upheavals of a newly independent Kenya. Separated by distance and family obligation

the three young women are a world of conflicting interests. Camila becomes a very successful model, Sarah is sent to university in her native Ireland but longs to return to Africa and Hannah with her family struggle to keep their farm. Their friendship is tested time and time again by violence, love interests and broken promises. Political unrest is never far away and with it violence which causes a brutal murder. Read the book to follow the lives of Hannah, Sarah and Camilla and find out how their friendship manages to survive from their families’ past and the instability of life on the African continent they call home.

The Langani Trilogy by Barbara Keating

Book Two – A Durable Fire'This stunning sequel set in a newly independent Kenya following the lives of three friends Hannah, Sarah & Camilla is about friendship, hope and redemption.'

The three young women return to the Kenyan highlands. Hannah is struggling to preserve her farm, Langani Farm, where a series of unexplained violent attacks threaten her security and recent marriage. Sarah is studying wildlife using her work to help with the death of her sweetheart.

Camilla, now an international fashion icon, abandons her career in London and returns to Kenya partly fuelled by her love for a charming hunter and safari guide.

A huge secret hangs over Langani and overshadows the friends' attempts to establish themselves in the volatile atmosphere of an independent Kenya. Read the book to continue to follow the lives of Hannah, Sarah and Camilla and how they manage to survive life in Africa.

Book Three – In Borrowed Light'In the final instalment of the Langani trilogy,set fourteen years after independence the enduring friendship of the three women has carried them through periods of violence and loss in Kenya. A stunning conclusion to this unforgettable story of strength, loyalty, friendship, betrayal,

deceit and outstanding courage.'

Hannah and her husband Lars still live and own Langani Farm where they are still struggling to protect their wildlife and land from poachers and corrupt government officials. Their family and their marriage is tested deeply with the developing relationship between their daughter and a young

African boy with a terrifying past. Sarah still immersed in her work as a renowned wildlife researcher and photographer is now married to an Indian journalist. A shadow hangs over them as their inability to have children puts a great deal of strain on their relationship Camilla, international fashion icon, both model and designer, has given up her career to work with the man she loves, charming safari guide Anthony Chapman. Anthony harbours bitterness of events in his past and still has a fear of commitment that threatens to shatter Camilla’s dreams. Read this stunning conclusion to the Langani trilogy to find out what happens in the lives of Hannah, Sarah and Camilla as they continue to live in Kenya.

Cinema Revisited

Babe – Certificate U''A charming film with heart about a pig determined to have a future and not to end up as a Sunday roast! This beautiful story has a wonderful cocktail of perseverance, friendship, love and making dreams come true.”

A young pig fights convention to become a sheep dog in order to be useful and not end up on the dinner table. Stunning special effects coupled with a brilliant script helps bring Dick King-Smith's children's book magically to

life. Babe separated from his family is sad and confused. He finds out he is living on a farm and the fate of most pigs is the dinner table. Befriended by one of the farms friendly sheep dogs 'Babe' begins to learn how to herd sheep. Farmer Hoggett, beautifully brought to life by James Cromwell, recognises what he believes is natural talent that Babe can herd sheep. Despite huge scepticism farmer Hoggett enters 'Babe' into a sheep dog trial and wins! Babe also realises his dream to be useful and not to end up like most pigs as dinner!

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Issue 13 Autumn 2020Wise Owl Feathers - The Newsletter for Adults with PWS

Shakespeare In Love – Certificate 15''A delightful romantic comedy that is endlessly witty, beautiful to watch, superbly acted and full of the essential ingredient - romance. It is about a young Shakespeare who has writers block and is running out of money, who then meets his ideal woman. This woman becomes his muse and inspires him to write one of his most famous plays.” William Shakespeare (Joseph Fiennes) has writers block but hasn't been able to write a hit play for years. Phillip Henslowe (Geoffrey Rush) owner of 'The Rose' theatre is trying to keep his theatre open by keeping creditors at bay. In a desperate

attempt to keep his theatre open he bets everything on the success of Shakespeare’s new play 'Romeo and Ethel,the Pirate's Daughter'. The problem is the play is still in the young playwright’s head, that is to

say not a word of it has been written.

Lady Viola (Gwyneth Paltrow) is an enthusiastic theatre-goer (scandalous for a woman of her breeding) who admires Shakespeare’s plays. She is promised to a man she does not love. Feeling like her life is not her own she decides to dress up as a young man and win a part in his new play - Romeo. She does.

The playwright Will soon discovers the deception but decides to go along with it. A love soon begins to blossom between them which gives the playwright his muse. William and Viola's romance grows and comes to its inevitable conclusion and gives birth to the tragic play about love, we all know as 'Romeo and Juliet'.

Healthy Eating - Recipe Time!

Thai spiced turkey patties with noodle saladTreat yourself to this low-fat, healthy Thai dish after a hard day's work - it's quick and easy to make.

Prep Time: 15mins Cook Time: 10mins Serves 4

Nutritional Information – Per serving

Kcal: 173 Fat: 2g Saturates: 0g Carbs: 14g Sugars: 5g Fibre: 2g Protein: 27g Salt: 1.48g

Ingredients400g turkey breast or fillet, roughly chopped

1 lemongrass stalk, finely chopped

2 garlic cloves, crushed

1 lime, zest and juice

3 tbsp low-sodium soy sauce

1 small bunch coriander, chopped

1 red chilli, deseeded and chopped

2 nests medium wheat noodles

300g pack mixed peppers stir-fry vegetables

sweet chilli sauce, to serve (optional)

Method

1. Heat the grill to Medium. Put the turkey in a food processor and pulse until minced. Add the lemongrass, garlic and lime zest, and half the soy sauce, coriander and chilli, then pulse again until combined. Tip the mix into a bowl and add some black pepper. Shape into 8 patties, then transfer to a non-stick baking tray and grill for 3-4 mins each side, until cooked through.

2. Meanwhile, soak the noodles following pack instructions, then drain and add the vegetables, the remaining soy sauce and the lime juice. Toss well, divide between plates and sprinkle with the remaining coriander and chilli. Serve with the turkey patties and some sweet chilli sauce for dipping, if you like.

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Healthy Eating - Recipe Time!

Green cucumber and mint gazpachoThis zingy, delicious no-cook soup is packed with four of your five-a-day

Prep Time: 20mins Serves 2

Nutritional Information – Per serving

Kcal: 186 Fat: 11g Saturates: 2g Carbs: 15g Sugars: 14g Fibre: 5g rotein: 8g Salt: 0.28g

Ingredients1 cucumber, halved lengthways, deseeded and roughly chopped

1 yellow pepper, deseeded and roughly chopped

2 garlic gloves, crushed

1 small avocado, chopped

1 bunch spring onions, chopped

1 small bunch mint, chopped

150ml pot fat-free natural yogurt

2 tbsp white wine vinegar

2-3 shakes green Tabasco sauce

1 bunch chopped chives, to serve

Method

1. In a food processor or blender, blitz all the ingredients, reserving half the mint and yogurt, until smooth. Add a little extra vinegar, Tabasco and seasoning to taste, then add a splash of water if you like it thinner.

2. Chill until very cold, then serve with a dollop more yogurt, mint, chives and a few ice cubes if you like. The soup will keep in the fridge for 2 days – just give it a good stir before serving.

Recipes taken from BBC Good Food Website

Taylor's Story Leaving home and moving into a residential care setting was a difficult first step for Taylor – but it soon became a journey that would positively change her life. Taylor comes from a loving caring and committed family, who were as determined as she was to ensure she had every opportunity to live a full life.

As she was growing up, her parents felt that many of the challenges she experienced were the result of a lack of understanding of Prader-Willi syndrome. The protective family would often express their concerns about the treatment she received from others, but Taylor refused to be affected by other people’s perceptions and continued to pursue her goals. The various educational settings she went to were slow to understand her cognitive and educational needs. However, Taylor was determined to remain within a mainstream elementary school. She then went on to do very well at a secondary school for individuals with moderate learning difficulties before moving on to a mainstream college to continue her study.

As Taylor reached adulthood, her family realised it was becoming increasingly more difficult for them to provide her with the quality of life she deserved. They struggled to help her as she battled her insatiable appetite and her frustration manifested into outbursts she fought hard to control. Her health began to decline, and she developed Type 2 diabetes and mobility issues. Her quality of life suffered further due to her increasing isolation and frustration. Recognising that Taylor deserved all-encompassing and specialist support, the family suggested that they could support her to explore the possibility of living at Gretton House, a specialist PWS service in Northamptonshire. At first, Taylor was very

reluctant. However, after further discussion she decided to attend an initial meeting with the team at the service.

Taylor’s father said: “Throughout her life, we have nurtured and motivated Taylor to never give up. But another undeniable strength of her character was her ability to understand and accept that she now needed more help and support.” Following the meeting, the team planned a transition period for Taylor over the course of a month which involved day visits and alternate overnight visits.

“The transition period was invaluable as it gently eased me into the way of life at Gretton House,” said Taylor.

“After this I felt much more at ease and was really excited about starting my journey living there.”

After moving in, Taylor felt she had quickly become a different person.

“Living at home, I had problems managing my emotions and my rapid weight gain had become difficult to control,” she said.

“At my first weigh-in I weighed 19st 13lb and my weight quickly started to drop as the team helped me to become a more healthy, confident, positive and happy person.”

Taylor has now found a new lease of life, enjoying bowling, swimming, shopping trips and visiting the local country parks. She has also enjoyed a special outing with her fiancé to gokarting and has made many new friends who she enjoys passing the time with and having fun whilst doing activities.

Tips for staying safe onlineAt our regular Zoom meeting for adults with PWS, we looked at how to stay safe when using the internet.

What do you use the internet for?

• Shopping on Amazon and eBay

• Using social media such as Facebook, TikTok, Instagram, Twitter and WhatsApp

• Watching films and TV

The internet can be useful for doing all these things and for keeping in touch with friends and family.

There are some things that you need to know about, that are not so good:

• Be very careful about sharing your personal data – name, address, phone number, date of birth and bank details.

• Some people want to use your personal data to take money from you so always check

with someone like your parent or carer before giving out your details.

• If you get an email or a text message from someone you don’t know asking you to share personal data. SAY NO.

If you are going to do shopping on line, or sign up to sites that ask for your personal data, only use websites where you can see the padlock at the top of the screen or the address starts https. The S is important and is stands for SECURE

Sometimes you get a message that pops up, saying you have won something. NEVER click on these links as they can infect your laptop, tablet or phone with a virus.

NEVER share your passwords If you’re unsure about anything online always ask someone for help.

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Issue 13 Autumn 2020Wise Owl Feathers - The Newsletter for Adults with PWS

How Zoom has helped Rowena stay connected with her friends during lockdownMy name is Rowena Ashbee. I started lockdown at my Mum and Dad's, due to the coronavirus and I knew I wouldn't see any of my Prader-Willi syndrome friends. So I decided to text Linda and Karry about doing a Zoom meeting every Saturday, so at least once a week we can all get together, see each other and chat on Zoom! Sally, Olivia, Kate and Abbie started with me, then Joni joined a few weeks ago. Then Rose and Imogen joined us! So now I have got nine of us on Zoom together every Saturday.

When it was Joni's Birthday, we decided to do a Zoom meeting on that day instead of next Saturday. James joined us on Sunday and Saturday. I am now back at home and we are still continuing to do the Zoom meeting each week. We look forward to seeing each other as we still can't meet up. I still think it's a good idea to do a Zoom meeting as I set it up from when lockdown first started at my Mum's.

Hopefully we can still continue to do this throughout the year as part of a PWS Zoom chat. No one can go out, and this is a way that we can all see each other and celebrate birthdays and other events that are happening. I did not think it was fair that we didn't celebrate birthdays, just because of the coronavirus. In July, we did a virtual one for Sally as it was her 18th birthday in March and her party had to be cancelled due to the coronavirus.

So, I send invites out to my friends so they can have a link to the Zoom. We have 40 minutes on Zoom which is good. It starts at one. We finish at half one to two o'clock. We chat about school and what we have been doing. I have really enjoyed setting the meetings up because I am very good at technology. Also, I now have a new laptop and it's even better than my iPad because I can see everyone on my laptop! Linda and Karry thought it would be a great idea too.

Happy Birthday!Johanna Barnes

Aneil Bhogal

Katie Brockley

Jacob Burges

Joshua Butler

Claire L. Campbell

David D. Carter

Clair Challenor

Sarah Cuthbert

Alfie Dandy

Claire Darley

Joanne E. Davis

James Dewar

Grant Domagala

Josie Drake

Jennifer Eggl

Mikala Elliott

Rebecca Evans

Richard R C Field

Emily Fleming

Garfield Fuller

Harry J M Godier

Charlie Gooding

Kathryn Graham

Sarah Joanne Greenhalgh

Rebecca L. Griffin

Alexandra Grussing

Robyn Hatton Bloomfield

Marina Hicks

Rebecca Higgins

Elizabeth Holmes

Paul Homer

Thomas P. Hue

Tina Huggett

Emily James

David Kelly

Emma Kerley

Neil Kipling

Chanil Kisthoo

John M. Laidlaw

Jonathan M. Laverick-Brown

Anthony K. Lawson

Duncan I. Logie

Jameel Mandeel

Hayley P. Marsh

Christy A M Matthews

Amy McAllister

Lesley-Anne McKinnon

Eve Metcalf

Jamie Miller

Matthew Minton

Stuart Mitchell

Nicholas Murduck

Elizabeth S. Owen

Mia Phillips

Julie Pinel

Henry Pullen

Ashley J. Redford

Sean Samways

James A. Sanderson

Arron J. Simpson

Natalie Slevin-Greer

Lydia Smith

Tamzyn M. Softley

Paul Streeter

Richard Tallon

Alison J. Thomson

Philip Tremain

Sharon T. Waldron

Elisha J. Wallington

Kate Wedlock

Elizabeth Wilson

Archie Woollacott

Send your answers to the quiz and your completed Wordsearch by 15th December 2020 to:

Maggie at PWSA UK Suite 4.4 Litchurch Plaza Litchurch Lane Derby DE24 8AA

REMEMBER … make sure you put the correct postage on your envelopes!

We would also love to receive your drawings, articles, letters, photos of pets, recipes in fact anything you would like to see in YOUR magazine.

Name: .......................................................................................

Address: ...................................................................................

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Top Ten Hits Of The 1990s QuizBeware the consonants have been removed! Each line represents a letter. There are clues for each conundrum. Have fun!

1. _ O _ _ E _ _ A _ In 1996 The Beautiful South reached the number 5 slot in the UK charts with this song where 'everyone is blonde, And everyone is beautiful, And when blondes and beautiful are multiple, They become so dull and dutiful'?

2. _ A _ _ I E / _ I _ _ In 1997 Aqua reached the top position in the UK Charts with this song wher 'Life in plastic, it's fantastic'?

3. _ O _ _ I _ _ / _ O _ _ A _ E _ / _ / U In 1990 Sinead O'Connor reached the top position in the UK charts with this song where she sang the lyrics 'It's been seven hours and fifteen days, Since you took your love away'?

4. _ _ I _ _ / _ _ I _ E In 1994 Celine Dion reached the top position in the UK charts with this song where she asked 'Are you thinking 'bout you or us'?

5. _ I _ _ _ / _ U _ _ / _ A _ _ / T O / _ A _ E / _ U _ In 1994 Cyndi Lauper had a UK no. 4 hit where she sang 'My

father yells, 'What you gonna do with your life?, Oh daddy dear, you know you're still number one, But.......'?

6. I'_ / _ O / A _ _ _ _ I _ _ / _ O _ / _ O _ E (_ U _ / I / _ O _' _ / _ O / _ _ A _ ) In 1993 Meatloaf reached the top position in the UK charts with this song where he sang 'I'd run right into hell and back'?

7. _ A _ ' _ / _ E E _ / _ _ I _ / _ E E _ I _ _ I _ In 1998 Cliff Richard No. 10 in the UK charts with this song where he sang 'I just got to tell someone about the way I feel'?

8. A / _ I _ _ E _ E _ _ / _ E A _ In 1996 Boyzone reached No. 1 in the UK charts with this song where they sang 'Let's not forget this place, Let's not neglect our race.....'?

9. _ U _ A _ A _ In 1999 The Corrs released this song and reached No. 2 in the UK charts where they sang 'I'm never gonna stop falling in love, with you'?

10. _ _ A _ / A _ O _ _ E _ / _ A _ In 1994 East 17 had a Christmas No. 1 with this song where they sang 'Baby if you've got to go away, I don't think, I can take the pain....'?

1. TPSES

2. LRBU

3. ASOSI

4. BTKATRSECE SBYO

5. PCSEI LGRSI

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Cure the challenges of life with Prader-Willi syndrome

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Anagrams

Can you unscramble the letters to get the popular 1990's Bands? Have fun!