Open Garden

Mary Hainline once again opened her garden and house for her Art Sale, and invited us along to wave the MND flag. With commission from sales, the raffle and refreshments, the Branch finally ended the weekend better off by a magnificent £1820! Our thanks are due to Mary and Doug, all those who helped out, and all those who donated in whichever way.

Eamonn Cann at The Greyfriar

Eamonn Cann is one of ‘our’ people living with MND, but he is determined not to let that stop him singing! He’s a great Sinatra fan, and treated the customers at The Greyfriar pub in Chawton (near Alton) to a special performance of swing numbers from Sinatra and others just before Christmas . . and he kindly donated the proceeds of the evening to this branch. What with the raffle and auction, we are £664.00 better off!

Eamonn in full swing

… and with Trevor Jones, mine host at The Greyfriar.

Judith Shrubb ‘Carer of the Year’

Judith Shrubb, wife of our friend and branch member Paul, who is living with MND was awarded    ‘Carer of the Year’ by BBC Radio Surrey!! A fantastic achievement, and so well deserved. The award was presented by the Chief Constable of Sussex.

She was interviewed after the presentation, and you can hear it here: http://www.bbc.co.uk/programmes/p04jc43k

Paul is incredibly proud of you Judith, and so are all of us.

Well done!

MND Charter adopted by Surrey C.C.!

Today the MND Charter was adopted by Surrey C.C.!

Pictured outside County Hall beforehand are: (L to R) Bob of W. Surrey Branch, Dave Setters of E. Surrey, who’s worked hard to get this done, Joanne Shaw, and Helen Setters.

Picture taken by Rae Martin-Smith, the MND Assoc’s fantastic Campaigns Manager for the South. Many thanks to all of them, and to Mrs Helyn Clack, S.C.C. Cabinet Member for Wellbeing and Health.

To top it off, Joanne agreed to become Campaigns Contact for W. Surrey Branch, so a good day all round!

Helyn Clack signing the Charter for Surrey County Council

Aerobility

Our first member living with MND has had a trial flight courtesy of ‘Aerobility’ at Blackbushe Airport. Aerobility is a charity dedicated in facilitating flying for people with all sorts of medical problems. In some cases, they may be able to continue with a formal course culminating in a Private Pilot’s Licence.

Paul Shrubb became Biggles for the day and thoroughly enjoyed his flight. Judith rode shotgun to keep him in order!

Open Garden Weekend for MND

Once again, Mary Hainline is opening her garden to the public this spring. Our branch will benefit from sales of her art and ceramics, and we’ll have a raffle, sell refreshments etc – anything to turn an honest pound to help people with MND in West Surrey, and to support the research effort.

The address is ‘Pentire’, Snowdenham Lane, Bramley, GU5 0AT, and the gates will be open from 10 am to 7 pm.

If you’re near Bramley over the weekend of 10 – 12th May, do pop in!

Waverley Singers’ performance

On Saturday 19th March 2016, we were represented at the Waverley Singers’ performance of Bach’s St John Passion in Aldershot, and benefited from the retiring collection.

We gave a short presentation about MND and the work of the Association, the last part of which was a reading by Rosalyn Landor of  MND Trustee Mark Stone’s piece about the impact of MND on him.

Rosalyn Landor reading ‘MND and Me’ by Mark Stone

Mark had read this on Radio 2 in October last year, and the BBC broadcast the programme again on Mark’s death in early February. The audience at the concert were greatly touched by the reading, and asked if we could make it available.

Here it is:

‘MND and me’

by Mark Stone

‘Up and down, up and down
I will lead them up and down
I am feared in field and town
Goblin, lead them up and down’

(Midsummer Night’s Dream, Act III, Scene ii   –  William Shakespeare)

As Puck to the lovers in Midsummer Night’s Dream (Shakespeare’s ‘MND’?), Motor Neurone Disease has proved a rollercoaster ride for this mere mortal.

It has changed everything; not ‘nearly everything’, but literally everything. Good, bad, or indifferent – whatever else, everything has changed.

It has brought out the best in people – and the worst in people, including, of course, me. But everything has been transformed, whether subtly, or dramatically, by the experience of gradually losing facility – and knowing that there’s nothing you can do about it.

Well, you can, of course –  mentally, psychologically, spiritually. But physically, the die has been cast and you are on a journey that you cannot alter.

The process is subtle, gradual, inexorable:

snip, you can’t keep up with your family in the street;
snip, you can’t control your foot against the rip at the beach;
snip, you can’t drive;
snip, you can’t do the stairs without using the banisters;
snip, you’re no longer safe in the shower;
snip, you need crutches outside;
snip, you can no longer visit your parents’ house;
snip, you can’t get to your kids’ rooms;
snip, you’re breathless every time you walk;
snip, you need a wheelchair;
snip, you can’t get into a normal car;
snip, you can’t get into your own house;
snip . . . snip . . . snip . . .

Time – and people – are the most precious things of all.

Time wasted is impossibly cruel, an abomination, an unspeakable injustice.

Time spent well, especially when shared – massacring madrigals with friends, Bach & Bruckner at the Proms, dappled sunlight on old church walls – is the greatest gift of all.

Surrey Half Marathon

Emma Mason is running again, this time for the Woking and Sam Beare Hospice. This is a very worthwhile cause, and some of our MND people are looked after there. Please support Emma’s efforts on:

https://www.justgiving.com/Emma-Mason16/

If this modern techno-stuff leaves you cold, you can shower her with gold at the next open Branch meeting a few days later (if she’s walking again by then!) . . .