Wise Owl Feathers - The Newsletter
Hello everyone,
It’s that time of year again when I nag you about wearing suncream. It’s really important as the sun can damage your skin, even when it’s not very hot. Don’t worry – I don’t just nag you, I nag my children and grandchildren as well. The other thing is the need to drink plenty of water. Funnily enough, this topic came up in our Question and Answer session with Professor Tony Holland at the Owl Focus Group Mini Conference. Lots of
In
the PWS News magazine
this
you said that you don’t like the taste of water, but if you drink juice, there are too many calories in it.
I don’t like water much, but last week Lizzie who works in our office, gave me a drinking bottle with a built-in straw and I have started to drink water flavoured with fresh lemons, cucumber, limes and basil leaves. In the hot weather, you can put ice cubes in as well to help you keep cool. Why not try it out and let me know how you get on?
I love to hear from you so why not drop me an email at rconsterdine@pwsa.co.uk
summer,
we are looking at some of the changes that happen when you become an adult.
This can be a difficult for people with PWS and for their families too. There are so many things to think about:
Moving from school to college
Seeing a different set of doctors
Meeting new people and making new friends
Moving away from home
At PWSA UK, we are here to help both you and your family through this journey and we have lots of information that will help you to have a successful transition.
Some things that help include:
Having professionals who understand your PWS
It is really important that the people who are supporting you know about your PWS and how it makes you feel. They will need to know that you need to have a special low-calorie diet, but there are lots of other things too. Talking to adults with PWS, they want their carers to know how they are feeling, how they might have a high pain threshold and other issues that affect them.
Being involved in choices about where you live
It’s a good idea to go and look at some different settings when you are planning on moving into residential care or supported living. Your parent/s and other professionals will also guide you and be involved in making decisions.
Making sure all your benefits are sorted out, such as PIP
Your parent/s or social workers can support you with this.
At PWSA UK, we know that some people with PWS find changes difficult to cope with. Having support, encouragement and information can help you manage the changes ahead.
Relationships
Once you leave school or college or even if you move to a new setting, you will be thinking about the new people you will meet. You will be able to make new friends, but you can still keep in touch with old friends and family on WhatsApp, by email or Facebook. Everyone feels nervous about meeting new people, so don’t worry too much.
We have some really good short videos about growing up and relationships which you can find on the ‘I Have PWS’ page on our website.
Managing money
For many adults with PWS, managing money can be a problem and they have someone they appoint who manages their money for them. This will be something to talk to parents and/or carers about.
Owl Focus Group mini conference report
We all got together over Zoom at 10am on Saturday 10th June. Our new CEO, Jackie Lodge, introduced herself and said she was really looking forward to supporting people with PWS, their families and their carers too.
Next, we had a question and answer session with Professor Tony Holland, who is a psychiatrist with over 30 years’ experience of specialising in PWS. I read out the questions that had been sent in and lots of people wanted to ask:
Why don’t people (like doctors, teachers and social workers) understand PWS?
Jo moves into her own home!
My name is Joanne and I have PWS.
Recently I have moved into my own home.
I have been wanting my own space, but I didn't want to be away from my mum. I had been to look at residential homes, but they cook with sauces that are high in sugar and salt and they are not good.
When mum moved to a bungalow there was a garage and this is now my house.
My mum and my sister Emma filled in a form - it's called a disabled facilities grant and it was some money that turned the garage into my home. When I was told it was going to be my home, I was so excited, but I didn't like the waiting, I wanted it done straight away.
I really enjoyed going out shopping to choose my new sofa, my new lift-up bed, my coffee machine and my table and chairs. I found it hard as lots of my personal things were kept in boxes for a long time while the building work was happening. When my home was finished, I found it hard to know where to put my things, so my mum and big sister put it all out for me, and now I am in, I can put them where I want them.
Tony said it is because PWS is so rare. He said that some doctors like GPs will never meet anyone with PWS. However, he also said that if they have a patient with PWS, they should find out about it by looking at our website. Everyone thought this was a good idea.
Another topic that people wanted to ask Tony about was how to manage feelings of anxiety, or what to do if they get angry or upset especially when they are out at the shops or in the park. Tony said it was important to practice some strategies or ways to keep yourself calm. Think about times when you get upset anxious or angry –how do you feel? Hot, breathless, fidgety or a prickly feeling on your skin? Tell your parent/carer how you feel and ask for help.
Have a look on the ‘I Have PWS’ page of our website where you will find some good advice about coping with anxiety.
I love watching TV, and my DVDs - I have so many. My favourite things to watch are NCIS, Lingo, The Chase, Strictly and Neighbours.
I wasn't happy when my mum and Emma said I could have a fridge, but no food was allowed in this. I wanted to do my own shopping and fill the fridge. I now understand it's not a good idea, so I plan for each day with my sister, and we only have what I need for the day in the fridge. Mum cooks dinner at her house and then she brings it round to me, or sometimes we all eat together. With my support from my personal assistants, I count calories to keep my weight down, go to the gym, attend Zumba and Stretch and Tone classes. I attend adult education for maths and English skills and go to an art class. My support helps me to be part of my community, to use the local bus routes, to attend my volunteer job, complete my housework skills, go to the theatre and cinema and play board games in my new home.
I really like living in my new home. Mum always comes round, and I make her a drink with my coffee machine. I do miss our dog, Moss - he doesn't come round that often as he's getting an old boy. It's nice to have my own place as I can have my friends over.
Professor Tony Holland
Our Positive News
Charles’ weekend at Butlin’s
Charles Warner recently went away on a weekend to Butlin’s. Here, he tells us all about it:
Hey guys, I recently went on an adult weekend at Butlin’s. Beforehand, I got a new coat, we went from Friday lunch to Monday lunchtime. The first night went quite smoothly as we had to unpack and put things away. Then we went for food. I had a few drinks and we saw Gareth Gates and Blue the first night. We all went to bed about 1am the next day.
The second day we got up around 9am and went to Minehead for the day. We had a look in the market and went to the pub and had a drink. Then we went back into Butlin’s and had an ice cream which was nice. Then we went for tea and, in the evening, we saw Atomic Kitten and went to the silent disco, and afterwards went into the arcades for a little bit and then back to the chalet for bed.
The next day, I was very tired, so we went to the
Emily’s excellent customer service!
Congratulations to Emily James. Not only has she been taken on permanently by Marks & Spencer, but she has also been awarded for providing excellent customer service. Well done, Emily!
fair, went on the go-karts and then I had drink, then went back for a snooze then afterwards it was time for tea, and in the evening just a chilled night where we watched Big Brovaz and then I went with another member and just went on the arcades and went to bed.
The next day it was time to pack and take things to the car, and then we went for breakfast. When I got home, I went straight to bed for an hour as I was very tired.
Going Orange for PWS Awareness!
Thank you to everyone who joined us going orange for PWS Awareness Month! You all looked fantastic! As you can see, everyone at Team PWSA UK went orange too!
Fun at our community weekends!
We recently held our first two community weekends of the year – one at Sundrum Castle in Scotland and the other at Southview Holiday Park, in Skegness. It was lovely to see some of you – and we hope you had a fantastic time! Here are some photos from both events.
Sundrum Castle Skegness
Craft Corner
At the beginning of May, we held a Zoom craft session to make an orange crown to mark both PWS Awareness Month and the coronation of King Charles III. If you would like to make one of your own, then please follow the instructions below. You will need to draw your own crown template like the ones in the images below.
Colouring Time & Birthdays
Happy Birthday!
Elizabeth Amey
Jake Beresford
Tara Bevan
Frances Booth
John Bould
Matthew Brand
Lewis Brennan
Kelly Bridges
Jamie Brown
Jennie Bruce
Matthew Burns
Andrew Canning
Megan Carr
Mathew Carver
Rachel Chan
Alice Child
Samantha Cleary
Laura Cowsill
Samuel Davison
Richard Earle
Daniella Erez
Sacha Ferguson
Sebastian FischerBurrowes
Ruby Goode
Matthew Goodwin
Kerry-Anne Gould
Joanne Gunn
Adrienne Hacker
Stephen Hagger
Gordon Hamilton
Katrina Hardy
Megan Harrison
Jack Hayes
Simon Hobson
Carina Hodgson
Kaz HolmesMoorhouse
Emma Hughes
William Hull
Tara Hunt
Amanda Jones
Samuel Jones
James Kay
Rachael Keatings
Freya Laird-Bisset
Adrian Le Cras
Jorden Lee
Samantha Lett
Jane Linley
Gemma Lockett
Jonathan Lovell
Thomas Machin
Alistair MacLean
James McCafferty
Elodie Meanwell
Rebecca Medley
Alistair Meyrick
Joanna Miller
Stephen Mitchell
Angela Monachan
Emmy-Jo Morrell
Adam Moseley
Lisa Newell
Louise Newham
Katherine O'Dell
Grace O. Ovenden
Rupesh Patel
Rosie Peel
Clive Pepper
Andrew Rankin
Luke Reid
Aaron Richardson
Stephen Robertson
Jennifer Ryland
Catherine Scotcher
Conor Segrave
Danielle Sephton
Virginia Shaw
Sarah Simpson
Gurveer Sohanpal
Claire Stapleton
Ashley Telling
Gregg Wilcox
Eva Woods
18th birthday
Ella Chinnery
Rose Darbyshire
Edward Shryane
Jessica Wilks
21st birthday
Isabella Arikol
Ella-Louise Eagan
Aaron Gilmour
Leigh Reade
Promotional Merchandise Brain Teasers!
Puzzle Time!
Beware, the consonants have been removed! Each line represents a letter. Have fun!
Famous dogs
1. Which Disney and Pixar film starred a clownfish?
I _ _ I _ _ _E_O
2. This film was about a famous rock band and had the same title as their best known song.
O _ E _IA_ _ _ A _ _ O_ _
3. This 2006 film was the first Bond movie to star Daniel Craig.
A _ I _ O _ O _ A _ E
4. Sulley and Mike are the lead characters in this animated film from 2001.
O _ _ _ E _ _ I_ _
5. Hugh Grant, Liam Neeson, Alan Rickman and Emma Thompson star in this romantic comedy written and directed by Richard Curtis.
O _ E A_ _ U A _ _ _
6. This long-running film franchise stars Tom Cruise.
I _ _ I O _ I_ _ O _ _ I _ _ E
7. Which 1997 sci-fi film stars Bruce Willis and Gary Oldman?
_ E _ I _ _ _ E _ E _ E _ _
9. A film starring Brad Pitt, in which the lead characters ages in reverse.
_ E _U_IOU_ _A_E O_ _E_ _A_I_ _U_ _O_
10 This classic musical fantasy film featured ruby slippers, a yellow brick road and an Emerald City.
_ E _ I _ A _ _ O_ O_
WINNER! Congratulations to the winner of last issue’s quiz, ColmGrimes. A prize is on its way to you!
Send your answers to the quiz and your completed word search by 11th September 2023 to:
PWSA UK c/o Metcalf’s Commercial Decorators, 3 Deer Park Road, Moulton Park, Northampton, NN3 6RX
Name:
Address:
8. In which 2000 comedy film do characters played by Robert De Niro and Ben Stiller meet for the first time? _ E E _ _ _ E _ A _ E _ _ _
REMEMBER…makesureyouputthecorrect postageonyourenvelopes!
Overcome the challenges of Prader-Willi syndrome.