theory of everything wheelchair up for grabs
TRANSCRIPT
Reading and West Berkshire
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Registered Charity No 294354
Issue 81
January 2016
Theory of Everything wheelchair up for grabsThe Theory of Everything wheelchair is our wheel deal . . .
and it’s all thanks to Reading and West Berkshire branch’s quick-thinkingPolly Gorman
A wheelchair used by Oscar-winning film star EddieRedmayne in his portrayal of Stephen Hawking in TheTheory of Everything has been rescued from thescrapheap to raise more awareness of MND.
The wheel deal, which could also bring in vital funds atauction, is thanks to the quick-thinking of young Readingand West Berkshire branch volunteer Polly O’Gorman.
Polly was spending aweek gaining somework experience at theinternational filmcompany, WorkingTitle, renowned formaking hits such asBridget Jones’s Diary,Love Actually and TheTheory Of Everything.
During her short timespent at their Londonoffice multiple propskept appearing fromthe biographical drama about Professor Hawking who,with Redmayne, is a patron of the Association.
She said: “I saw these props as an opportunity to raiseawareness as the film’s plot had been based around thetheoretical physicist’s relationship with his wife Jane andhis life with motor neurone disease.”
Polly asked the props team what the usual procedurewas with items that come off a film set presuming thatthey get re-used in other films. The response shereceived explaining that they would be thrown awaymade her realise that the wheelchair used byRedmayne in the film could raise a significant amount ofmoney if it were to be auctioned.
In Polly’s usual cheeky and inquisitive manner she asked
if she could have the wheelchair for the MNDAssociation to help boost its funds. There then followedvarious initial emails sent between Polly, Oliver Stotter atWorking Title and Richard White, V.I.P Manager at MNDAssociation.
“I realised that if you don’t ask, you don’t get .andthought it would be worth my while and a benefit to the
association if I couldpersuade Working Titleto donate thewheelchair,” sheexplained.
Polly admitted findingthe process of trying togain permission tohave the wheelchairwas a lengthy one.Although the wholetime she kept in hermind that receivingthe wheelchair could
raise a significant amount at auction and wouldmaximise the awareness of MND at events to helpsupport the association in the future.
Over the following months many emails were sentbetween all parties involved and on the sixteenth ofNovember 2015 Richard White confirmed receiving thedonated wheelchair by courier to the MND office inLondon. The parent company of Working Title, NBCUniversal, had eventually agreed to give permission todonate the wheelchair.
Polly was delighted to say that her cheekiness paid offand proud that the Reading & West Berkshire MNDbranch had secured a ‘money can’t buy’ donation fora national event to be held in the near future to helpraise awareness and funds for the Association.
Reading andWest Berkshire
January2016 2
My husband, Ronald, loved music,classical, some pop, traditional folkand especially guitar and piano.
Travelling to Scotland was a musicfest. Our last journey was to thesound of Roy Orbison with both of usjoining in and much laughter. Ronaldhad great tone and I loved to hearhim sing. My attempts were lesscompatible.
We first heard the Kennet AccordionOrchestra at a concert in Hungerfordand, after speaking to Helen Newtonone of the players, an event wasarranged for the residents ofRedwood House and Lindley Lodge
where we had recently moved tomake access easier for Ronald. Thiswas the first of a number of lovelyevenings at Redwood House.
Sadly Ronald died in May 2015.Helen, whom I have known for a longtime, rang me in November 2015.The Orchestra and the KennetSingers were holding a ChristmasConcert and Helen had suggested itbe a tribute to Ronald as his lovelysmile and happy laughter had madea huge impression when they methim. I was very touched.
We had a lovely fun evening withcoffee, tea, cakes, mince pies, araffle and wonderful music. I wasable to thank the audience,orchestra and singers and also tell
them about the support we hadfrom Reading and West Berkshirebranch of The MND Association andRonald's medical team.
When the concert was over I hadpeople coming to ask about MNDand had a ready supply of leafletsbut also a couple of them came tosay thank you as they had lostsomeone to MND. I had only brieflytouched on the impact and it wasless than10 minutes.
Helen visited me after the concertand on behalf of the KennetAccordion Orchestra and KennetSingers gave me £430.52 for theAssociation’s Reading and WestBerkshire branch in memory ofRonald.
To everyone involved I can only saya heartfelt ‘thank you’. A wonderfulgesture to a much loved, happy,unassuming man, Ronald.
Betty Morrison 2016
Fund raiser concert for Ronald
If you would like to receive newsletters by email please contact Val Pearson:[email protected]
Please also contact Val if you know of anyone else who would like to receive a copy of the newsletter bypost or email
Association’s Wheelchair Project.The MND Association is undertaking a project on powered wheelchair provision (funded by theDepartment of Health) and one aspect of it is a survey to be completed by poweredwheelchair users.
The Association would be enormously grateful if anyone who uses a powered wheelchair couldcomplete this survey, if they have not already done so – it has to be done by 31st January2016. PLEASE NOTE THE TIGHT DEADLINE FOR THIS.The link to the questionnaire is:
https://northampton.onlinesurveys.ac.uk/wheelchairprovisiononlinesurvey
Betty pictured raisingawareness of MND
Reading andWest Berkshire
January2016 3
Lucky beauties take their pick
A lucky dip of beauty products put awinning smile on the faces of theladies at a coffee morning inBucklebury Village, near Reading.
They each paid £5 for a mystery giftdonated by a top beauty editorraising the handsome sum of £180 forthe MND Association’s Reading andWest Berkshire branch.
Publicity officer Jane Gilbert, whomanned the stall in December, saidit was a delightful event and verypleasing to have raised a total of£692 for three good causes.
The event at The Old Vicarage alsoincluded Christmas cards being soldin aid of Jo’s Cervical Cancer Trustand a sale of bric-a-brac raisingmoney for Bucklebury parishchurches.
Jane said: “We are especiallygrateful to Amanda Service forhosting the event and for arrangingthe very kind donation of beautyproducts. It was a wonderfulopportunity to raise awareness ofMND.”
Super swimmers Clare Rowley and Julie Hewstone aresurging ahead in their bid to go the distance of fivemarathons in a year for good causes.
They completed their second epic – the equivalent ofthe New York Marathon – just before Christmas raisingmore than £300 for the MND Association.
Julie, whose friend Chris Gray is living with MND, saidrecently: “We’ve just started the Sydney Marathon forthe Stroke Association – we’re seven miles in!”
For her swimming partner Claire the latest challengewill be for a cause close to her heart.
The 43-year-old mum, from Arborfield, suffered a strokewhich left her unable to walk. She and Julie, a healthcare assistant from Binfield, came up with the fivemarathons challenge after really enjoying swimmingthe equivalent of the Channel together in 2014.
The plucky pair aim to complete each challenge of1,684 lengths (26.2 miles) at a rate of about six miles aweek. Their final two marathon swims will be TheAntarctic (Alzheimer’s Research UK) and Athens (GreatOrmond Street Hospital).
Jane Gilbert
Making a splash for MND
The Cavendish Spencer Trust provides financial help forholidays for people with severe physical disability dueto neurological or neuromuscular disorders. It can helpwith costs for the disabled person and accompanyingcarer if appropriate. Priority is given to adults requiringmechanical respiratory support.
Currently it funds up to 50% of the costs of a holiday ofone or two weeks per year up to a limit determined bythe Trustees. The Trust supports the holiday choicesmade by the individual concerned and does not makerecommendations about venues or their suitability: thelatter is the responsibility of the client.
For further information/application from, please go tothe Trust’s website at:
www.cavendishspencertrust.com
or email the administrator, Charlotte Duthie at:[email protected]
Joanna Knott
Funding Holidays forDisabled People
Mrs Sheila Holland helps three-year-old Harriet to take her pick
Reading andWest Berkshire
January2016 4
Blooming marvellousGlenvale Nurseries at Bradfield Southend, near Reading,gave a boost to four good causes, including the MNDAssociation, at its successful charity day on December6th.
Gardeners enjoyed free mulled wine and mince pies,stalls and a raffle to raise a tidy sum into the bargain.
Helen Varley, who runs the garden centre with herhusband Duncan, said:
“We'd like to say a million thanks to all of you who cameto our charity day today.And an extra HUGE thank you to our family and friendswho give up their time to help us get ready for the event,and help us on the day. We couldn't do it without you.Thank you to our lovely stall holders too.We all raised lots of money for our charities, so thank you.”
Jane Gilbert
Volunteer Paddy Lunn’s popular cake and card sale hasall the ingredients for a successful fundraising event.
The tea-time treat at her Sonning Common home hasbecome an annual event keenly looked forward to byher family and friends.
Paddy said after her most recent sale on November27th: “We made £408 from the raffle, cakes and cardsand by the end of the next week it was up to £520 fromthose who couldn’t come on the afternoon but wantedcards (and I did cook a couple more cakes).”
Once again the afternoon featured a selection of cardswith scenes painted by her late husband Rodney, atalented artist who scooped a national award for hiscolourful work days after losing his battle with MND.
This inspired Paddy to get prints of Rodney’s colourfulwork to sell as cards in aid of the Association’s Readingand West Berkshire branch and they are now availableto buy at all our events.
Jane Gilbert
Paddy’s recipe for success
Pictured at the sale are:
(left to right standing) : Sue Lunn, Tania Lunn, Paddy, herdaughter Joanne Lawson, and grand-children, JackWright, Jasper Lawson, Tilly Lawson, and Ella Wright.
HUGE CHARITY SALEBEENHAM VICTORY HALL
SATURDAY19TH MARCH, 10.00am to 1.00pmSelling everyhing except the kitchen sink - something for everyone
Contact Lin Jenkins on 0118 941 2738 or by email [email protected]
Reading andWest Berkshire
January2016
Christmas tea stately home-style
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The magnificent splendour of Englefield House’s LongGallery was the setting for the branch’s popularChristmas Tea Party.
About 60 people enjoyed a feast of festive bakes servedup by the committee and helpers in the special venuethanks to our patron, Newbury MP Richard Benyon, andhis wife Zoe.
Our regular Santa, aka Alec Jenkins of Newbury, alsodeserves a pat on the back for handing out gifts ofPanettone and plants to people living with MND andtheir carers. Thanks also to Glenvale Nurseries ofBradfield Southend for helping the branch with the costof the beautiful blooms.
One of the guests, Mrs Betty Want, of Tilehurst, kindlydonated a Christmas cake which was bought at auctionby Mrs Betty Morrison of Hungerford. The cake was madeby Mrs Want’s daughter, Sharon Hawkins, whose dadDerek is being supported by the branch.
During the afternoon Association Visitor Joanna Knottwas caught by surprise and presented with a bouquetby the committee to mark her recent special birthday.
• For the record Englefield House is regularly used as afilm location and has featured in movies including X-Men: First Class, Woody Allen’s Match Point, the 2008Noel Coward adaptation Easy Virtue, and provided theinteriors for “Buckingham Palace” in The King’s Speech.
Jane Gilbert
Santa delivers gifts to Ronnie Slater (left) and TrevorAndrew helped by chair Margaret Moss and
Betty Morrison
A brace of Bettys - Betty Want (Left) hands over aChristmas cake to winning bidder Betty Morrison
Reading andWest Berkshire
January2016 6
Back in April whilst out walking withmy U3A rambling group, I was talkingabout the MND Thank You lunch thatI had attended. I then found out thatone of the ladies in the group hadlost her husband, Ervin Schuller, toMND. Many months later she cameand told me that her son, Zsolt, hadcycled from Devon to Hungary toraise money for the MNDAssociation. Aha, I thought, I can feela newsletter article coming on andthe rest is history ….
Here Zsolt tells his story:
Until 2015 I was convinced onlycertain types of people could beadventurers. Headstrong charactersnever plagued with self-doubt,Scandinavians or people withdouble-barrelled surnames. They allhad something in common, theyweren't like me! I was 37 and liked tothink about adventure inside a nicewarm pub.
This changed in 2012 when my fatherdied from MND. In his last months theReading and West Berkshire branchof the MND Association wasamazing. Within days of his diagnosisthey were giving the family supportand making adaptations to ourhouse so we could cope that little bitbetter.
After his death I wanted to dosomething in his memory and tothank the MND Association for itssupport. Daddy had been a refugeefrom the 1956 Hungarian Revolutionand experienced hardship I couldhardly imagine. He had a few timesmentioned a dream of one daywalking home. I decided to adapthis idea and go by bike.
As the crow flies it is a distance ofaround 1000 miles. I hadn’t beencycle touring before, was too lazy toplan a route and I was free from Mayuntil July. I set off from Devon on 11thof May on a new shiny bike lookingthe part with panniers, a tent and avery hard Brooks leather saddle. Iwas an adventurer!!!
Without a plan I spent the first 6weeks going in a circle aroundFrance following the coast toBordeaux before heading easttowards Nice through the Tarngorges and the sublime GrandCanyon du Verdon. I then, foolishly,set off north following the ‘Routesdes Grandes Alpes’ towardsGeneva, over some of the famousTour de France climbs. With 40kg ofluggage I was a little slower thanBradley Wiggins and also doubt hestill catches himself saying out loud “Iwant my mummy!”
After 10 hellish days in the Alps I didphone my mummy who asked, “Areyou ever actually coming toHungary?” This gave me some focusand I set my compass to east,heading up the Rhone Valleythrough Switzerland, before crossinga few other nasty mountains intoAustria.
Austria was the home straight and Iwriggled my way through, followingriver valleys, as my bum and mindcouldn’t take any more alpineclimbs. Crossing the border intoHungary was very surreal and aftermy longest day cycling I had anemotional arrival to the village ofKárad where mummy was waiting.
In all I was away for 54 days, coveredaround 3200 miles and raised £1700for the MND Association.
What did I learn?
Everyone has an adventure insidethem!
Zsolt Schuller
Eastern Promise: A cycle ride from Devon to Hungaryfor the MND Association
Ervin Schuller
Zsolt takes a rest at the MillauViaduct
Furka Pass
Reading andWest Berkshire
January2016 7
Why me, for God’s sake?
At a recent event I met a chap whohad recently been diagnosed withMND. He had taken it extremelybadly and was very very angry withthe world. I was asked if I would writean article explaining how I cope withit. I’m not sure that I can say anythingto make it easier for him but, that notwithstanding, I will do my best.
My first symptom, which occurred - Ithink - in 1998, was in my left leg. Ifound I was walking “funny”. When,in the turn of the millennium, I wasdiagnosed I knew nothing at allabout the condition but I gatheredby the funereal tone that theneurologist used - and the fact thatmy wife burst into tears - it was prettyserious.
As the condition progressed I stilldidn’t know how extensively it wouldaffect me or how fast it wouldprogress. Firstly I needed a stick towalk with, then 2 sticks and then arollator. Although my wife and Ienjoyed going for walks I figured, if Ijust lost the use of my legs, I could livewith that, although I had to acceptthat I would never be the new SebCoe!!.
Unfortunately, not only did my legmuscles continue to weaken, but thecondition travelled up my body: thenext thing I noticed was aweakening in my hands.
If my wife had chosen to divorce meshe would have cited 6 co-respondents: 4 guitars & 2mandolins!! My love affair with theguitar - and later the mandolin -began in my early teens, firstly justlistening, and later playing. I fronteda local band in the Newbury area forabout 20 years.
About 12 years ago I found that I washaving trouble playing and about 2years or so later I had to give it up.That was one of the hardest thingsabout MND, but the only way tohandle it was to concentrate on thepluses in my life. Ah well, there goesany chance of becoming the nextMark Knopfler!!
The next stage of the conditioninvolves my lips, tongue and throatand, as a result, my speech is failing.
There are 3 stages regardingpeople’s perception:stage #1, theythink you are deaf; stage #2, theythink you are drunk; stage #3, theythink you are somehow mentally
retarded. I have reached Stage #3. Iguess I’m not going to become afamous raconteur either.
I don’t claim to be any sort of a saint- maybe my wife is right, she tells meI’m too stupid to know how ill I am -and I’m not going to pretend thatthere have been no tears over theyears, but they are private. I thinkwhat I’m trying to say is, there’s noeasy answer, but if you keep asking,“why me?”, you will not only hurtyourself, but those around you aswell.
It’s funny, I read somewhere that theodds against winning the lottery arenot as good as the odds of gettingMND, but I’ve never heard of alottery winner asking, “Why me”!!!
When I reach the end of my life andlook back I want to be able to say Imade the most of the time I had left,not only for myself, but family andfriends as well, and maybe raised asmile or two along the way.
Alec Jenkins
Reading andWest Berkshire
January2016
We never lose hope. We strive to find a cure for MND andto support everyone affected by this devastating diseaseRegistered Charity No 294354
Thank you Holiday Inn Reading West, BathRoad, Padworth and Kall Kwik Printers,Reading for your ongoing support.
BranchContacts
ChairMargaret Moss0118 9470871
Branch Contact07760 854975
TreasurerEd Gryglaszewski
0118 9789069
Events CoordinatorGill Selby
NewsletterMary [email protected]
SecretaryVal Pearson0118 [email protected]
RCDA
Kathy Hymas
PublicityJane Gilbert0118 9714172
WebsiteJan [email protected]
8
In previous newsletters I, and others, have written aboutfamily and friends who have done some amazing things toraise awareness of MND - and the work of the Association -and to raise funds.
Now another family member has joined the fray: PaulCarden, from Lambourn, our nephew-in-law, (if there is sucha thing) ran the Oxford Half Marathon on Sunday 11thOctober in 2h 21m & 58 seconds. That is a very respectabletime in it’s own right, but even more so bearing in mind it washis first ever half-marathon.
I hope he won’t mind me saying that he used to lead a fairlysedentary life but since taking up running he has becomemuch fitter. He has made the whole family proud.
So far he has raised about £500.00.
Alec Jenkins
..... And another one joins the quest!!!
1 Theory of Everything wheelchair up for grabs
2 Fund raiser concert for Ronald Assocation’s Wheelchair project
3 Lucky beauties take their pick Making a splash for MND Funding holidays for disabled people
4 Blooming marvellous Paddy’s recipe for success
5 Christmas tea stately home-style
6 Eastern Promise: A cycle ride from Devon to Hungary for the MND Association
7 Why me, for God’s sake?
8 And another one joins the quest
CONTENTS
STOP PRESSGenerous staff at Theale-based telecommunicationscompany CTIL have helped to raise £1,500 for theAssociation by buying tickets in a deluxe Christmas raffle.See the next issue for the full story on how they wereinspired to help people in Berkshire living with MND.