Reading and West Berkshire

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Registered Charity No 294354

Issue 83

August 2016

Summer Tea Party - August 3rdA new venue for our Summer Tea Party at Burghfield Sailing Clubattracted over forty guests! And what a lovely venue it was! Thesun shone, the breeze on the water meant the sailing boats andwind surfers provided action to watch and colour to the view.Our thanks to all at the club for the generous facility and for thehelp afforded to the team. All this made for a happy andsuccessful afternoon; we were able to renew old friendships andmake new ones too!

After a scrumptious tea and lots of chat, several members werebrave enough to venture out on the water in a sailing or powerboat - both adapted and capable of taking anyone, with adisability or wheelchairs, out on the water - what a treat!

If others fancy the idea Burghfield Sailing Club’s Sailability Groupmeets every Thursday evening and its volunteers are dedicatedto bring boating to people with disabilities on equal terms.

Club Vice Commodore, Peter Colvin, who was diagnosed withMND 15 months ago, is keen to encourage Sailability.

He said: “If anyone is interested in getting out on the water theyshould give us a call or email Burghfieldsailing.org. It depends onwhat people want to do and how outrageous they feel.”

The club welcomes wheelchair users and can crane them on aboat to go sailing. It can cater for power wheelchairs and alsohas a speedboat option for a trip around the 200-acre lake.

Father-of-two Peter, a lifelong sailor, had to sell his racing dinghywhen he lost the strength in his hands although he still enjoysregularly getting on the water and was recently challenged bya club member to get out there and see who was better!

For more details visit:

http://burghfieldsailability.org.uk

Margaret Moss

Heidi Fowler Brown, Margaret Moss and AnnaBrown who was celebrating her birthday

BSC vice commodore Peter Colvin preparesto take Jane Gilbert, Betty Morrison and

Marian Hall for a spin around the lake

Richard Spencer, Netta Thorne, JanGryglaszewska, Carol and Cliff Allen with

Alan Parry at the front

Reading andWest Berkshire

May2016 2

Caversham rocked again for MND fundsGoodness, gracious, great rock ‘n’ ale! The popularevent was back for a third year in June raising a fantastic£2,164 for the MND Association’s Reading and WestBerkshire branch.

Caversham Rock’n’Ale Festival was inspired by thedeath in December, 2012, of mum-of-four Angela Fung,a close family friend of the festival organisers. It wasstarted the following year firstly as a community eventraising money for the Association and has beensponsored by the Parish of Our Lady and St Anne’s eversince.

About 300 festival goers enjoyed the Summer eveninglistening to the bands, and sampling various local alesand hog roast at St Anne’s School playing fields inWashington Road.

Branch chair Margaret Moss said: “A good time was hadby all. We distributed balloons – never seen so manyblown up by mouth so quickly – and gave wristbands toall and sundry.”

All the organisers and bands – Jnc 6, Rigsby and Dino’s-kindly gave their time free of charge so that the £4329profit after costs could be split between the parish andthe Association.

Lin Jenkins, who attended with her family, said Graham’sHog Roast was, without doubt, the best she had everhad. She was also delighted when one of her group wonfirst prize in the raffle and donated £20 of it to theAssociation.

Jane Gilbert

Angela Fung’s husband Daniel and son Matteowith (from left) Tony Moss, Jan Gryglaszewska,

grand-daughter Chloe Hawkins and branch chairMargaret Moss

Over the past few weeks we have been working hard preparing for the 2016 RoyalCounty of Berkshire Show which takes place on the weekend of 17-18thSeptember. The gifts we will have on our tombola stall are all donated by you –your continued support and generosity is totally amazing, thank you.

My thanks also to Paddy Lunn(pictured) who has given up herprecious time in helping me puttogether a lot of lovely goodies forthe show.

Please support our Reading andWest Berkshire Branch by stoppingfor a chat at our stall. You will findour stall number and avenue in theRoyal County of Berkshire Showprogramme and as soon as wehave been notified of the locationit will be posted on our Facebookpage (MND Association Reading &West Berkshire).

Mary Dodds

Royal County of Berkshire Show

Reading andWest Berkshire

May2016 3

Marian’s magnificent money-spinnerA charity night in Hungerford has raised a fantastic£2,750 for the MND Association.

The event at John O’Gaunt School on July 9th wasorganised by Marian Hall and her partner Peter Stirlandof the Hungerford car dealership.

A delighted Marian said: “We are so pleased with theresult, it was a fun evening.”

The night, which included an auction, raffle, bar anddancing to the Adam Winslet Band, also raised a similaramount for Spinal Research.

“We chose these two charities because my husband Basdied from MND and Peter’s son David is quadriplegicafter a motocross accident more than 30 years ago,”said Marian, who is pictured presenting a bumpercheque to branch chair Margaret Moss. She is joined byBetty Morrison, also of Hungerford, who helped on thenight.

Marian’s husband died in 2004 and, celebrating asignificant birthday this Summer, she decided to raisesome funds for the branch which had given her so muchsupport.

She said: “The branch were so good , they sorted us outwith a super electric armchair for Bas to use which madesuch a difference. They didn't really have much chanceto get to know him but after he died they were sosupportive to me.”

Marian managed to source an amazing array of ‘moneycan’t buy’ items for the auction including a day withWilliams Formula 1 racing team, a hospitality day atReading FC, a signed football from Manchester United,and British Touring Car Championship tickets.There were also fabulous raffle prizes provided by localshops and people in Hungerford.

“Everyone has been so generous,” she added.

Jane Gilbert

The West Berkshire Neurological Alliance (WBNA) is theumbrella organisation for 27 neurological charities andsupport groups in West Berkshire and, as such, has seatson four NHS decision-making bodies.

It delivered a major Conference on Integrated Servicesfor Neurology earlier this year, which attracted over 70delegates.

It organises Focus Groups on different topics, the latestone being on ‘Caring for someone with a neurologicalcondition’, and the reports resulting from these FocusGroups help to inform the work of the local NHS LongTerm Conditions Board, the Neuro Steering Group andthe two Thames Valley equivalents on which the WBNArepresents the local neurological voluntary sector.

The WBNA also supports the very successful WestBerkshire Therapy Centre (now seeing over 200 clients aweek) and has provided 40 carer’s grants to needycarers.

The organisation is financially sound and has a pro-active Board of Trustees with a broad skill mix.

But to maintain and build on all this, there is a need tostrengthen the Trustee Team to keep up the impact ofthe Alliance in the years ahead.

So the WBNA is seeking further capable Trustees who willbe active in researching and representing the needs ofthe local neurological sector.

If you feel you are able, and would like to join andstrengthen the Team, then please contact John Holt,Liaison Officer of the WBNA:

Johnmholtbsc@aol.com

Joanna Knott

Neurological Community Respiratory Physiotherapist

Marian Hall (centre) and Betty Morrison (left) presentcheque to branch chair Margaret Moss

Reading andWest Berkshire

May2016 4

John’s Antiques Roadshow trip

Supporter John Brearley shares the story of hisclassic car journey when TV’s Antiques Roadshowrolled into Reading this Summer.

The idea first came to me when I heard that an episodeof the popular BBC series was being filmed on June 26that Caversham Park. In the past, the introduction to theprogramme had included presenter Fiona Bruce ridingin some form of transport including a vintage car.

As I live almost directly opposite the park’s mainentrance gate and I own what is known as a Post-Vintage car of the 1930s - a 1934 Aston Martin- I thoughtit might be an opportunity to offer it to the programme’sproducers and sent an email saying that the car wasfreely available without charge if they were interested.

I had two replies; the first noting my comments and thenthe second which asked for photographs, so I dulyforwarded these to Bristol and waited for any response.It came in an invitation to meet the three producers atthe park on the Saturday evening with the car whenthey expressed a serious interest and asked me to bringit on the Sunday for 8am when I would be told what theywould like to do.

On arrival I was given a special place on the driveway

which faced the queues of people comingin as a point of interest for them. I lost countthrough the day of the number ofphotographs taken and the questions askedabout the age, engineering, history, and,more especially, how much it was worth, asmany thought it was there to be valued byone of the experts. It was not, as it happens,because the value is agreed by theinsurance company. Many people likedsitting in the driving seat beingphotographed, including a small boy in awheelchair who was disabled and had to belifted into the car. His father said that it hadmade his day!

About half-way through the morning acamera crew arrived closely followed by ateam and presenter Fiona Bruce herself. Shesat in the passenger seat with me beside her,talked easily about the car and how muchshe admired it; then more about its early life.After about five minutes the cameramansaid he was ready to film and Fiona

explained that we would have to repeat ourconversation and not look at the camera.

We discussed the life the car probably had when it wasowned by two officers in the RAF during the SecondWorld War and how it could have been part of thewhole scene on an active base before she agreed to ashort drive round the grounds after filming ended. At onestage I caught a glimpse of a very large crowd watchingthe scene but the way in which Fiona conducted theinterview dispelled any nervousness I might have felt.

Later that afternoon I was able to visit the AntiquesRoadshow valuations and see for myself how the filmingwas done. Then, after meeting Fiona Bruce again, I tookher for a special drive in the BBC grounds as she had saidhow much she loved the old cars.

Seeing her now on television reading the news anddoing her interviews it seems quite strange to think, thatfor a few brief moments on that Sunday in June, she wasactually sitting in my old car. It was a long day before itwas all over, but that interview made it all worthwhile !

If, in the future, the car would be of interest to thebranch, I would be delighted to help and bring it to anymeeting you choose. No need to ask, just let meknow……!!

Reading andWest Berkshire

May2016 5

Two more respiratory aids giftedTireless fundraising by a Reading family has helped thebranch to give two more machines to the RoyalBerkshire Hospital for use by people with respiratoryproblems.

Lin Jenkins, from Overdown Road, Tilehurst, is out everyweekend with relatives raising money for the MNDAssociation which supports her inspirational brother-in-law Alec Jenkins from Newbury.

She and her husband Paulhave raised thousands ofpounds in the last threeyears and wanted theirhard-earned cash to gotowards two more “coughassist” machines costing atotal of £6k

Lin said: “When Alec wasfirst diagnosed, like mostpeople, we fell apart.When we saw how bravehe was we took our cuefrom him and we haveturned his illness in ourfamily from a negativeexperience into a positiveone.

“I try to be out every weekend selling items at fetes andcar boot sales. With my husband Paul and son Rossdoing sponsored walks and runs it has become a familybusiness almost. Our extended family donates items,money and help where they can.”

Two years ago the charity’s Reading and West Berkshirebranch presented four cough assist machines to the RBHafter an appeal for donations towards the £12k cost.

The appeal was launched after respiratory consultant DrChris Davies revealed there was only one deviceavailable for use in his department.

Since then the donated devices have been put to gooduse helping to relieve the secretions caused by MNDand other chest conditions making people feel muchmore comfortable.

They are based at the Royal Berkshire Hospital and willbe available for people touse at home. TheAssociation hopes theywill make a difference tothe life expectancy ofsome people affected byMND and preventdistressing hospitaladmissions.

Branch publicity officerJane Gilbert said: “We arehoping to prime pumpthese into the healthservice so it can see thebenefits for people facedwith respiratory failure anddistress.

“This is a good example of collaborative workingbetween two organisations to improve the quality of lifefor people in Berkshire who are living with MND – adevastating neurological condition with no known cure.”

Jane Gilbert

Obituary - Joyce Iles (1926 - 2016)

Joyce's husband died of MND in the days when not a lot was known about the disease. There was noassociation to provide information and no local branch to be able to meet people who were goingthrough similar things. Joyce wrote to America and received leaflets back from them. When my mother wasdiagnosed with MND we contacted Joyce and she gave us lots of practical information about coping withthe disease.  Dr. Hyman, who was the neurologist at the Royal Berkshire Hospital at the time, helped toorganise a public meeting at Battle Hospital and so the local Reading and West Berkshire branch of theMND Association was formed. Joyce was always a behind-the-scenes worker but whether collecting in thetown centre, selling raffle tickets or manning our fund raising/information stall Joyce would always be there.She will be greatly missed by all in the branch who knew her.

Phillip Adams

The Jenkins family and branch volunteers at the hand-over to Dr Grace Robinson (2nd from right) at the

Royal Berkshire Hospital respiratory clinic

Reading andWest Berkshire

May2016 6

Pride of Reading: Nominee Mary’s passion and enthusiasm isstill infectious after nearly 30 years

A volunteer who still works tirelessly for the branch shehelped set up nearly 30 years ago has been nominatedfor a Pride of Reading Award.

Mary Dodds, 65, could be crowned this year’sCommunity Champion after being put forward bysupporter Andrew Wall, also from West Reading.

Mr Wall said: “Mary help set up the local branch of theMND Association nearly 30 years ago and is stillvolunteering with the branch to this day.

“I am nominating Mary as she has such passion andinfectious enthusiasm for the charity and has a knack ofgetting people involved.”

Mary was inspired by her first husband, Derek Prior, wholost his battle with motor neurone disease in 1990.

“Totally stunned” at being told of her Pride of Readingnomination, Mary said she felt “very honoured”.

“I’m humbled that Andrew thought so much of me thathe put my name forward for this award,” she added.

Speaking about her husband’s death, she said: “It was adesperately sad time for me and my young daughters,but I wanted to do something positive to help othersfacing our situation. There was so little support for familiesaffected by motor neurone disease in those early days.”

Mary was one of four people who set up the Readingand West Berkshire branch of the MND Association inMarch 1987.

She said: “Derek, who was suffering from this dreadfuldisease, helped in many ways to set up this branch. Heput himself forward and raised awareness of MND andhis attitude was always ‘there was someone worse offthan he was’.

“Derek sadly lost his battle to this disease in May 1990.After his death, I continued supporting the branch whichhas gone from strength to strength being run by acommitted team of volunteers and is recognised as oneof the top branches in Great Britain.”

Mary is now supported by husband Barry Dodds who is aregular helper at branch events and drop-in meetings.On what makes her most proud of her volunteering workMary told online news site Get Reading: “Raisingawareness on our stand at the Royal County of BerkshireShow, helping to organise our Christmas and summertea parties, and regular drop-in events for people livingwith this devastating life-limiting condition and theircarers. I’m also proud of spreading the word aboutmotor neurone disease on social media and sharing thestories about our amazing fundraisers.

“It’s great to be part of a fantastic team that helpspeople living with MND and their families to make surethey get the support and care they need.

“My dearest wish is that one day they will find a cure forthis dreadful disease, and when that day comes we willknow that the work of the MND Association and its manyvolunteers has not been in vain.”

And on what she enjoys the most about volunteering atthe charity, she said: “I love meeting people when I amout helping at events, and feeling that we are making adifference to people’s quality of life.

“I try to talk to the right people to get things completedfor the charity and to get the best out of people to getthings done. I help to make sure our funds raised bysupporters are available for those in need.”

Mary, is especially proud of Derek for being awarded thethen Reading Evening Post's New Year Honours award in1989.

Nominations for this year’s Pride of Reading Awardsclose on September 12th.

Jane Gilbert

Mary Dodds pictured with Andrew Wall who hasnominated her for this prestigious award

Reading andWest Berkshire

May2016 7

Fawley Hill Vintage Steam EventLord & Lady McAlpine played host/organiser for thiswonderful three day event when steam enthusiasts fromthe South of England gathered at Fawley Hill.

Although the event has run for many years this was thefirst time it was opened to the public on the Friday, andproved rather quiet.

However all that changed in the evening when theconcert started in a circus Big Top. Tickets were £100each, including drinks and canapes on arrival, plus abeautiful buffet later on. Profits from this event went tothe MND Association.

 The guests certainly arrived in their Sunday best, and alllooked very smart.  Lady McAlpine was resplendent inher black leather leggings and pillarbox red hair! (Yourstruly was “working” and in her MND Association T-shirt!)

The evening started off with 4 ex MPs who have formeda band to raise money for charity and continued withtribute acts for Elvis and Elton John.

Saturday was busier, but cold and overcast. It was notenough to stop the Spitfire doing a lovely aerial display.Also, on all 3 days we had dogfights between 2 tri-

planes.  Mid afternoon we had heavy rain, so I packedup and went early.

Sunday started off with beautiful sunshine, which helpedto dry some of the mud from yesterday – heavy tractionengines, steam engines, army vehicles etc with heavyrain, are not a good mix!

The day was going very well, with the Red Devilsparachuting in, before being introduced to PrinceMichael of Kent.

But at about 3pm we had rain of monsoon proportions.People started to pack up, ready to leave, but the onegate had now turned into a quagmire.  (Luckily thegeneral public were able to exit from their car park). Irealised I was not going to get my tent and stock out, sol Ieft it there for another night, going back for it onMonday.  Getting my car through that mud is not anexperience I am likely to forget!

Would I do it again .....?  You bet!  I loved it!  All myfavourite things in one show.  Judy (Lady McAlpine) is anabsolute sweety, and everyone who knows her lovesher.  Well done Judy!

Lin Jenkins

Item to borrowWe have a chair raiser to lend out. This can be usefulif staying away from home where no Riser/Reclinerchair is available. Please contact Joanna Knott forfurther details: 0118 984 4495 or email:tjmknott@alk21.com

Items for saleTwo leather-covered Riser/Recliner Chairs are beingoffered in return for a donation to the MNDAssociation. For further details, please contactWendy Westwell Tel: 07407 347444

Knitting Mad!Last year, Mary Dodds decided to extend her knittinghobby to make some toys, which she hoped could helpraise a few pounds for her local Reading & WestBerkshire branch of the MND Association.

Every spare moment was spent knitting….even at dinnerparties!

Before what turned into a few……developed into one big knitted family!

The hours upon hours of time, miles upon miles of wooland maybe some sore fingers, resulted in this amazingknitted family. From clowns and scarecrows, tosnowmen and reindeer.

Mary was initially intending to use these as raffle prizesbut their popularity and the encouragement of herfamily led to some great sales work and…

… this amazing effort has now raised a total of £880.

There are still a few toys available, snap yours up quick!To receive a price list & photos of those available, pleasecontact Mary at MaryDodds@mndrwb.org

Reading andWest Berkshire

May2016 8

My para jump with plucky pensioner Keith Hood By Scruffy the Bear

Our friend Graham Hodges, ofThatcham, had MND and 13 yearsago Keith and I did a para jump toraise funds for him and the MNDAssociation.

Since he died we have moved toNorfolk; another friend here has MNDso we have just made another leapin the skies and raised nearly £2K tobe split between Reading and WestBerkshire and Norwich and Waveneybranches.

It was perfect weather for the jump,clear and bright. We (Keith Hoodand me) went up for our tandemjump to 16,000 feet. That's three anda half miles! It takes about 20minutes to get that high but only 8minutes to come down! So it's veryexciting!

So we were OUT of the plane andfalling - free fall for 8000 feet and at125 mph, that's why it's so exciting!Very exciting!

Then the parachute opens and Keithhas control so we can circle andtake in the views as we float down.Here in Norfolk we can see KingsLynn, the M25, half ofCambridgeshire and out to sea. Wecan see the oil rigs in the sea andhalfway to Holland. On our first jumpin 2003 in Oxfordshire we could seefive counties only.

So, after eight minutes we land; nodamage, no broken bones but vitalfunds raised to help the work of twoAssociation branches.

Margaret Moss

Epic golf day tees up research cash

“What a long day it was ...all for a good cause though”, declaredCarol Harrison after husband George’s epic day’s golf.

He and two pals managed to nail their massive 72-hole challengeon June 21st in memory of his beloved step-dad Ronald Morrisonfrom Hungerford, who died of MND in May last year.

George, from Manton, Wiltshire, was determined to raise moneyfor research to help the MND Association find a cure or life-extending treatment and hopes to reach his £500 target.

His challenge was to play four rounds at four different courses – allin one day

Carol said:” The boys teed off at 6am.after a 4am alarm call. Theweather was kind not too hot, not too cold. and not wet thankgoodness.   We had all gathered at Deanwood golf course nearNewbury to see them come in on their 72nd hole.....and a finishtime of 8.37pm.”

Our picture shows the Harrisons’ one-year-old black Labrador atthe event dressed in an MND Tee shirt to match his name - Blue!

To help George reach his target visit:

www.justgiving.com/fundraising/inmemoryofronaldmorrison

Jane Gilbert

Reading andWest Berkshire

May2016

Brave Colin won’t let MND silence him

9

Colin Moss who used to be anAssociation Visitor in the Readingand West Berkshire branch of theMND Association was recentlyfeatured in an article in the SwindonAdvertiser. An abridged versionfollows.To read the full story please seehttp://www.swindonadvertiser.co.uk/news/14627725.I_am_dreading_what_lies_ahead/?ref=erec

He may struggle to communicatebut former semi-pro footballer ColinMoss, 65, won’t let motor neuronedisease silence him. Here, he opensup about his daily battle forindependence and dignity.

I remember looking into a mirror andthinking, ‘I look OK and I am notready to die yet’.

I will always remember too, what mybrother Alan said to me when I firsttold him I had MND and there was nocure: ‘One day they will find a cure;you just need to make sure you arestill here when they do!’

Whilst I have gained muchexperience of MND and sufferedmost of the effects, I am not a typicalcase - I have had much slowerprogression than average. I wasdiagnosed in January 2002; whichmeans I am one of onlyapproximately 10 per cent who havesurvived beyond 10 years.

Before MND, I was very fit and a keensportsman. I played semi-pro footballfor Andover and as an amateur forDevizes Town, Chippenham Townand Wiltshire. I finally retired fromfootball at the age of 48, less thanthree years before I was diagnosedwith MND.

The first indication that all was notwell was when I noticed very slightco-ordination problems. I tended todrag my foot a little and haddifficulty running. I also realised I hadlost the ability to sing in tune.

A few months later I noticedfasciculations in my legs and went tomy GP. He referred me to aneurologist who said he wasconcerned that I may havesomething that he wouldn’t be ableto treat. He arranged an MRI scanand EMG tests and about a weeklater gave me the news that I hadMND.

I suffered from fasciculations, musclecramps and areas of muscle atrophyvery early on. I had several falls butthankfully no broken bones and Igradually became more adept atfalling without hurting myself.

Within two years I needed a footbrace and started using a walkingstick. I also suddenly lost the ability tolift my right arm above my waist.

For about 15 months after diagnosis Imanaged to continue my work as aproject leader of a mechanicaldesign team but after that I was nolonger able to work.

By 2007, I was no longer able to walksafely using a stick and had to use arollator. The only way I could climbstairs by 2008 was to crawl up on allfours.

Fortunately for me I met my presentpartner Shan and we moved back toSwindon, in 2010. We had to install astair lift and various other aids. Withthe help of the MND Association wealso replaced the toilet seat in ourcloakroom with a bio bidet to helpmaintain my independence anddignity.

By 2012, I started to strugglebreathing which led to a few panicattacks.

In summer of 2013 I had a PEGfeeding tube fitted as my swallowinghad worsened.

MND has affected the part of mybrain that controls my emotionswhich can lead to mixed orexcessive emotions - laughing orcrying inappropriately.

My mobility continues to decline veryslowly but surely. I now use a powerwheelchair all the time, although Iam still able to transfer and showerindependently.

Whilst I accept there is nothing I cando once the signals to the musclesare lost, I work on the basis that thestronger I can keep my healthymuscles the better I can overcomethe weak ones.

But over the years I have becomeincreasingly frustrated by myphysical decline and my inability todo the things I once enjoyed such asplaying football, golf, tennis andsnooker or even just walking throughthe countryside or swimming. I usedto love looking after my classic cars,gardening, decorating and DIY butnow it really irks me that I need topay other people to do jobs I used toenjoy doing myself.

MND has taught me to make themost of every day and appreciatelife more.

Despite my frustrations, I still enjoy aquality of life - although if I lose all myindependence, lose my speechcompletely or my breathingdeteriorates further, this will change.I try to put these thoughts to the backof my mind.

Colin’s classic car won the bestsaloon category at the National

Sunbeam Talbot Register rally

Reading andWest Berkshire

May2016 10

Holidays for the disabledIf you are disabled &/or - like me - you get around in a wheelchair you’ve no doubt stayed indisabled/wheelchair ‘friendly’ accommodation which has proven to be anything but friendly,having been designed by someone who is obviously able-bodied, with no reference to awheelchair user. My wife - whose name continues to elude me - and I have stayed in caravans,lodges, cottages etc (we like to go self-catering) all of which claimed to be adapted for someonewho is disabled &/or in a wheelchair, all of which have been disappointing in at least one - andquite often several - areas. We have had accommodation where there was no room to get awheelchair or rollator round the bed; bathrooms/wet rooms where the toilet has a grab rail on oneside only; where the shower has either no seat or a very low fixed seat (just right for one of SnowWhite’s vertically challenged miners); where the lounge only has very low chairs with no way ofpulling yourself up, etc etc.

This year we decided to ‘bite-the-bullet’ and pay a bit extra for a special accommodationdesigned for the disabled. We contacted an organisation called Disabled Holidays(disabledholidays.com; Tel: 01457 833 444) who - like Hoseason, for example, - act asagents for a whole range of holiday destinations both in the UK and abroad, as well ascruises - all apparently suitable for the disabled. We recently returned from our first holidaybooked through them. We stayed in a place called Bardown Farm, Stonegate, nearWadhurst - about 20 miles north of Hastings in West Sussex. When I realised that we werestaying on a farm in The Calf Shed I dug out my bib overalls, got the shot gun from the attic,bought a coonhound called Old Blue and boiled up a jug of Moonshine - all for nothing asit turned out!!

There is nothing basic about the Calf Shed, havingbeen converted to a very high standard. Itcomprises a large lounge/diner/kitchen in themiddle - with picture windows all along the front -and a bedroom at each end, each with an en-suitebathroom. The kitchen is fully accessible withlowered hob and sink, and the whole place hascompletely level access. The lounge area hascomfortable seating, including a riser/recliner.Bedroom 1 has 1 single and 1 profiling bed, whilstthe adjoining wet room is fitted out to a standardwhich has helped to earn the property the topAccess Exceptional rating, it includes a remoteon/off switch for the shower. Bedroom 2 has 2 singlebeds which can be linked to make a double. There is a hoist available plus many other aids. The property has oakfloors throughout - apart from the bathrooms, of course - plus oak beams and doors. Even the door latches areoak!!

Outside there is a private fenced-in garden, laid mainly to lawn. There is a games room forkids and a warm outdoors pool. The hoist can be used for access to the pool. The whole siteonly has 3 holiday properties, so, if you don’t look as good in a bathing costume as I clearlydo, as you can see in this photo, chances are you can use it without being observed. Whatdo you mean, that’s not my body??

The Calf Shed, or either of the other 2 holiday properties on Bardown Farm, may be bookedthrough Disabled Holidays or direct with a lovely lady named Alison Gant(www.bardownfarm.co.uk Tel: 01580200452 or 07812115067). If you do book direct do letAlison know that you saw this article. I’m not saying you’ll get a discount, and I’m not oncommission with her!!

Don’t forget that there are different levels of disabled adaptions. Make sure that any holiday is right for you beforebooking.

Alec Jenkins

Me outside The Calf Shed

Reading andWest Berkshire

May2016

Helen Findlay’s blogHelen Findlay, from Thatcham, whotweets for the branch, has been busywriting and campaigning aboutpalliative care. This is an excerptfrom her blog on the Marie Curiewebsite.

Helen Findlay’s father James died ofmotor neurone disease (MND) inDecember 2005, without the high-quality palliative care and supportthat we believe is everybody’s right.Helen now does all she can topromote improvements in end of lifecare, including through the MarieCurie Expert Voices Group.

“Dad grew up in the ScottishLowlands in the 1920s and 30s, whichwas tough. Aged 19, hejoined the RAF andbecame a Lancaster pilot.A lot of his friends didn’tmake it, while he lookeddeath in the face eachtime he flew out.

“He met my mother, whowas in the Women’sAuxiliary Air Force, whenhe was based in Englandand, after the war, theyconcentrated on family,working hard and gettinga house.

“My mother developed dementia inher late 70s and my father becameher main support. Then, about eightyears later, my father was obviouslydeteriorating. He was eventuallydiagnosed with MND and passedaway after about seven weeks,which was an enormous shock. Notonly to us, but also to the medicalprofessionals who were supposed tobe experts.

“The consultant didn’t take thetrouble to explain the diagnosis andDad couldn’t hear properly. Hedidn’t realise he had a terminal illness– he thought it was something hecould get over. Things were

promised, then nothing happened,and my father deteriorated rapidly.My mother’s home carers could seemy father was getting worse – we allcould – but the consultant’s teamjust didn’t get it. Their tramlinethinking was that he had two yearsand we were just being hystericalafter the diagnosis.

“Everything was too late in catchingup.“A month before Dad died,having always vowed he’d never gointo a nursing home, he agreed so hecould be with Mum, as we justcouldn’t get the care for both athome. As long as my mum was withmy dad, she didn’t mind.

“They were together a couple ofweeks before the doctors decidedDad should go into hospital andhave a PEG feeding tube. But whathe really wanted – and tried to say –was a hospice, as he knew he wasgetting worse and his voice hadgone. I’ve learned that hospital is thewrong place at that stage. There’snothing you can do because MND’sgot such a grip. If he’d been in ahospice he would’ve had the righttreatment.

“When he was admitted to hospital,he was left on a trolley, flat on hisback and unable to breathe. Thenhe got put on a general ward, whichdidn’t have links with a palliative

care nurse and it’s then you realisenobody’s talking to each other.

“Four days before my dad died, apalliative care nurse was touringaround, so my sister flew down thecorridor to her. The nurse hadn’tbeen told Dad was that bad – eventhough he’d been in hospital 10 days.

“In those final four days, you couldsee the difference she could makeby talking to nurses, doctors, Dad,and us – which nobody else had"done. She talked about what washappening, what we could do andthat a hospice was the right place,but by then my dad was too ill to bemoved. At least her input got him a

side room, which heshould have had daysbefore.

“I’m not sure I’m overthe shock, not onlybecause of what thedisease did to him, butthe way he wassometimes mishandledand the lack ofcommon sense. Even atthe end, they sedatedhim without telling me,so I didn’t get to lookhim in the eyes and say‘I’m here’.

“Two or three months after he died, Ifelt something building and I couldeither internalise it and destroymyself, or do something. Weproduced The Findlay Report tomake recommendations to thepeople involved in his care, but it’ssince been supported by the MNDAssociation and gone round theglobe over the past 10 years.

“I want to make a differencebecause my dad put his life on theline and then, when he neededhelp, it was found wanting. I’vemanaged to turn that anger into apositive and not be eaten up by it.”

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If you would like to receive newsletters by email please contact Val Pearson:Valerie.a.pearson@btinternet.com

Please also contact Val if you know of anyone else who would like to receive a copy of the newsletter bypost or email

Reading andWest Berkshire

May2016

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

ReadingMND@hotmail.com

TreasurerEd Gryglaszewski

0118 9789069

Events CoordinatorGill Selby

NewsletterMary Davidsonmary@rfdg.org.uk

SecretaryVal Pearson0118 9789063valerie.a.pearson@btinternet.com

RCDA

Kathy Hymas

PublicityJane Gilbert0118 9714172

WebsiteJan Williamsp-jbrown@msn.com

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The fayre takes place on the green, opposite the BladeBone pub,Chapel Row, Bucklebury and provides a great family day out as well asraising money for local charities.

The organisers are looking forward to another fantastic day raisingmoney for some excellent causes. This year they are supportingAlexander Devine Children's Hospice, West Berkshire Mencap,Macmillan Cancer Support and Motor Neurone Disease Association.

Among this year's attractions, there is the return of the everpopular sheep racing. A full programme will include the Dog Show, CraftTent, Fun Fair, Bouncy Castles, Graham's fabulous Hog Roast, Tombolas,Raffles and many more displays and stalls. There will also be a Children'sFancy Dress Competition - all entrants welcome!

Refreshments include Beer Tent, Tea Tent, Dave the Ice Cream Man andBurger Tent.

“Entrance to the fayre and parking are both free  so why not comealong, bring the family, enjoy a cracking afternoon out and help us raiseloads of money for some really worthwhile local causes”, say theorganisers.

The fayre takes place on the Chapel Row green by kind permission of Mr& Mrs Willie Hartley Russell.

Saturday 27th August (starts at 1pm)

Save the date!Do come and support us at the Hungerford Christmas Fair on Friday,October 28th and Saturday, October 29th from 10am-4pm in the townhall.

The fair supports AMREF Health Africa with ten per cent of all sales andthe Association will benefit from the proceeds of the entry fee and theraffle.

This means we will be manning the door on both days and selling raffletickets so please contact branch secretary Valerie Pearson if you canjoin our team of helpers for a shift. It’s an ideal opportunity to start yourChristmas shopping too!

Fundraiser Lin Jenkins' needlesare busy clicking away as shetries to keep up with demand forknitted Pokémon Go balls.

She has been selling the latestsmartphone game craze ballsat £1.50 a time to boost herfundraising for the Association.

Go Lin!

Come along andmeet your friends at the

Art CafeThe Old Stables

WhitchurchRG8 7DF

for tea and cake onSaturday 8 October

10.00 - 12.30.