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!

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.

Sad loss of Roy Redford

SW Surrey Branch were sad to hear of the death on the 29th May of Roy Redford. Having started long-distance running at the age of 60, he ran 52 Marathons in all, including the events in London, New York and Berlin. Many of these were to raise funds for our branch of the MND Association, and over the years, the funds raised were more than £50000.

His achievements were recognised by his being selected as a sitter for a portrait by artist Patrick Joyce, who is living with MND. The branch was represented at Roy’s funeral, and we offered his family our condolences and appreciation for all his efforts for the MND cause.