Untitled Document

NEWS FOR PEOPLE LIVING WITH MND

If you have seen the latest quiz sheet, you will have read of our intention to use the proceeds to buy a branch I-pad. Mission accomplished – a bemused sales assistant in the Bluewater Apple Store notwithstanding, we have one! Several people who were finding it hard to speak have used the i-Pad “Speak It” app very successfully. It is intended that the branch i-Pad will be available to lend to anyone who is having trouble with speech. They will be able to see if it is right for them, before they spend money on one of their own. Anyone who already has an i-Pad can simply load the “Speak It” app for a mere £1.49!

The launch of the Maidstone Multi Disciplinary team took place in the Heart of Kent Hospice in Sept and is now established as the Maidstone Area Partnership and meeting every month. Now every one living with MND in our area is covered by a team of health and social care professionals who meet together to provide a confidential person-centred approach towards their care.

The swimming pool in Strood has a hydro pool available to anyone, and open from 8.30 to 11.30 am. It has large changing rooms, and a chair hoist access to the water, which is a warm 32C. It is free to Medway residents and it might be well worth going along to have a look.

The MND Association is planning to revise the Personal Guide. If you have any comments to make on how it might be changed please let your local contact know or you can fill in the questionnaire by going on to the internet www.surveymonkey.com/s/PGresearch2011

“The Grove” in Bournemouth has been highly recommended by a branch member. It is owned by Macmillan Caring locally and has 30 rooms, three of which have additional aids. Why not phone 01202 552233 for a brochure, or

visit www.thegrovebournemouth.co.uk for more details.

On the same subject, I have received a letter from Ann and John Heath who run Ellwood Cottages in Dorset. They have had several guests living with MND who have appreciated accessible facilities such as heated splash pool, recreation and therapy rooms and garden. Full details and inviting photos can be found at www.EllwoodCottages.co.uk

Sue Wooten is a very welcome new Association Visitor who many of you met at the last P&C meeting and we hope another branch member is going to start her AV training soon.

So many good things have happened since the last magazine and I haven’t included the cuddle chair – read about that elsewhere!

FUND RAISING ONLINE

The generosity and scale of the way in which people raise money for us is a source of continuing amazement. We are so grateful to them and can only hope that they enjoy the sometimes daring and arduous tasks they take on in our name. More and more of these kind people are using an online giving website as the most efficient way of generating money. When you set up one of these sites, it is only possible to raise money for charities registered on the site, in our case the MND Association. However, it is still possible to ensure that the funds so raised can be used by a local branch, as long as the fund-raiser informs National Office (incomeprocessingadminteam@mndassociation.org ) or Roger Widdecombe, our current Regional Fundraiser, roger.widdecombe@mndassociation.org in advance. JL.

TREASURER’S REPORT

Since Mid Kent Matters was last published, we have received income in excess of £14,000. Well over £6,000 of this was due to Paul Richards “Charity Doo” which was held in the late summer. Shelley and Sasha had their disco, which now seems to be an annual event and sent us over £1,000, whilst Tracey Matthews raised £1,150 for us by having a cake stall and also doing a sky dive (see photos of both in last MKM). In future, I think she will be concentrating on selling cakes as the idea of jumping from an aircraft again has little appeal for her – which underlines her courage in making the first dive. Our thanks go to Tracey, Shelley, Sasha and Paul for their marvellous contributions.

In November, our Christmas Bazaar made a profit of over £1,600 which is a record for this event. In addition we have received £283 from a coffee morning run by Kingsnorth and Sheldhurst P.C.C, and another £220 from a collection at Morrisons in Strood organised by Mrs Cook and family.

We sold over £600 of Christmas cards again this year and the sale of Branch Calendars realised a profit of over £80, thanks to Pat’s efforts in sifting through suitable photographs and organising the printing. We are also grateful to Pat Parris who sent us £528.50 after selling the latest quiz sheet in and around her village.

On the expenditure side, we have provided numerous pieces of equipment, including an I-pad, ramps, an over-table, a scooter and a headrest for a wheelchair. We have purchased a shed for extra storage space and have paid for several courses of therapy as well as making a contribution towards a holiday. We have also hired a hoist and profiling bed and paid fro part of the rental for a stair-lift. We have assisted with the purchase of a bed and covered the cost of some plumbing work and taxi fares.

In October, we sent £1,000 to National Office in response annual appeal and we are currently funding eighteen lifeline telephones, which are a very worthwhile use of our funds. Recently, we were able to pay for several professionals to attend an MND training conference in Aylesford.

As we approach the end of yet another financial year, our bank balance is healthy which will enable us to continue giving help when it is needed over the coming months.

FROM THE CHAIR

Hi, It’s that time again pen to paper. Well what can I say? What a fantastic job you volunteers did at our Christmas Bazaar. You did see a lot of Santas that day, I know, as it was also the Santa Run, but he was especially good to us this year. The amount you raised was a record to date, I believe, so THANK-YOU, THANK-YOU to you all.

Just a small mention of a couple of dates for the diary next year. Saturday March 24^th will be our Wine & Wisdom for 2012 at Greenacre school again.

Something new for next year, an awareness black tie dinner with entertainment (please see enclosed flyer for details). I hope to get press coverage for this event on Friday May 11^th. I am trying hard to push awareness so people know about us in the area. I do hope you can make it.

I wish you all a very Happy New Year and thank you for your support in 2011 and look forward to your support in 2012.

Kay Clement, Chair

A BIT OF A CYCLE RIDE!

For a few years, since I’d taken up cycling, it had been an ambition of mine to cycle the length of the country, but when to do it was always the problem as it needed the best part of 2 weeks. So when I closed my company in June it seemed like the ideal opportunity, so training started in earnest! I wanted to do it for charity as well and therefore had to be this year whilst I was still remembered by past business contacts before they forgot me! I chose MND as Mandy lost her mother, Iris Rayner, to this horrible disease 18 months ago and having seen the wonderful care she received from the local group thought I would try and do my bit to help.

So the trip itself – I decided to come down the country, which is not the norm as prevailing winds go up...and I lived to regret this decision. My thinking was that I didn’t want to be stranded at JOG if I went up the country waiting days for a train which I heard had happened to some people and also being rather late in the year thought the weather may have been worse the later I got to Scotland. Going south also was an incentive as you know you’re going the ‘right’ way. I would also rather have done it with someone else, but all my friends had no holiday left so this therefore meant no one to share the experience with and no support vehicle. I split the country into 80 mile segments and pre booked B&B’s for my evening stopovers which gave me a goal every day! I persuaded Mandy and Abi to drop me off at JOG on a wet Tuesday morning and off I went – only 950 miles to go!

Most days, weather wise, were wet and windy – I think 4 out of the 12 were dry, but fortunately nothing too extreme. I followed the east coast down initially and then turned inland to follow the lochs before heading down to Glasgow. The scenery through this part was absolutely stunning and fortunately the day I travelled through the sun shone! Skirting round the south of Glasgow was a complete contrast to the scenery I’d experienced for the last few days, but improved as I headed towards Gretna Green and the boarder. From then it was south through the Lake District which again was very scenic and fortunately avoided some of the really big hills, but still managed to hit 45mph down one of them! Then it was all down the west side of the country – got a bit lost around Warrington, but other than that stayed on route without too much trouble. Rode through beautiful towns of Whitchurch, Shrewsbury, Ludlow and Hereford which I must return to one day to have a better look! Again, more beautiful scenery down the Wye valley, but terrain had started to get a lot hillier! Crossed the Severn bridge without getting blown off, then the fabulous Clifton bridge before heading to Wells. I knew the penultimate day (Exeter to St.Austell) was going to be hilly as I’d planned my route across Dartmoor, but I had no idea just how hilly!! Finally, 12 days after leaving JOG’s, I cycled into Lands End to be met by Mandy and Richard.

My trusty bike behaved fantastically – not a single breakdown or puncture the whole 950 miles! In conclusion, don’t do this trip on your own as you have no one to share the experience and pain with…this was unfortunately with me a lot as my rear end suffered! Ideally, go up the country and definitely earlier in the year if possible. It was a great sense of achievement and a fantastic experience and managed to raise £3500 in sponsorship so all in all a very worthwhile trip. David Knight

VICE PRESIDENT

You may have noticed that we have not had a Vice-President for some time. This is an honorary office, which is often held by someone who previously served the branch in some way. We are very pleased to announce (and anyone who reads EVERY word of MKM will already have noticed that a name has been printed next to the Vice President heading inside the front cover!) that Colin Thompson has come forward in this capacity. It is so good to know that his connection with Mid Kent is once again an official one.

CARERS DAY

The branch stand, accompanied by Joyce and Jean and refreshments met the Mayor and local Carers at the Wisdom Hospice Day Centre on December 2^nd Star of the show was an almost magical communication aid, which is untouched by computers! We all had a go!

C0MING UP SOON!

Our AGM is on Monday April 16^th at 7.30pm in the Wisdom Hospice Day Centre. Remember - there are vacancies on the Committee and we would love to see some different faces around the table.

On Saturday May 5^th at 146, Edwin Road, Rainham, we have a new garden event where success will depend on the contributions of members and friends. Please send or take plants, a cake or bric-a-brac – or anything you think might sell on the day. Although a personal appearance with a purse will be necessary too!

The Black Tie Dinner is a week later on Saturday May 11^th. Tickets are £29.50 from Kay on 07976648708.

Our last event in May is the Bewl Water Walk, which is actually organised by the neighbouring West Kent Branch. The money our members and friends raise will go in our branch coffers and details and sponsor forms can be obtained from Pat Salter on 01634 827452.

There are two options for walkers or cyclists – the long (c.15 miles) and the short (c. 7 miles) with a pleasant watering hole at the half-way mark. It is a very friendly and low key event and non-walkers can enjoy it too. There are accessible loos and a reasonable café as well as plentiful parking. Please drum up as much support as possible and have fun raising the profile of MND in the Kent/Sussex countryside.

On June 10^th Joyce will be opening her garden for a whole day, rather than two half days. It will run from 11am to 4pm. Plants, cakes, tea and coffee will be on offer as usual and the afternoon will serve as one of our summer branch get-togethers.

National Office has decreed that June 2012 will be Awareness Month and that it will be cake-centred! No further details yet.

MID KENT BAZAAR 2012 – AFTERTHOUGHTS FROM OUR HELPERS

Everything in our favour – sunny day, red van, doors open on time, and loads to sell, but best of all, friends and supporters out in force – led by the scooter brigade!

I was not just a great fund raising event, but also most enjoyable socially. It was great to see so many patients and friends chatting and joking together. Customers from near & far - I was impressed that some had travelled from Essex & Sussex, until I heard about visitors from Finland & S. Africa!

' Despite 200 imposter Santas running amok through the Town, I was delighted that the real one chose us once again. A real Santa and a real Mayor - beat that!'

Everyone worked well as a team, stalls were set up in record time and it was lovely to see the Mayor stop at each stall. The items on sale were of a high quality and selling fro realistic prices. I loved the soft toys stall where everyone won a prize. As you can tell, I loved the whole day and will volunteer again next year.

At the end nothing left - but happy & weary helpers.

My way of saying thank-you for all the care given to Peter and me during a very difficult time. Christmas is about giving and to meet up with true givers means Christmas to me.

I wish I’d had time to visit the other stalls. It was just so full-on, we never stopped! We did manage to visit the Cake Stall though!

FURTHER THOUGHTS FROM THE BAZAAR

Everyone worked very hard and there was a good friendly atmosphere – just a pity that the hall wasn’t bigger so that we could have had more stalls!

We put our own jackets under a table beside several boxes which Sue told customers to “just rummage through” – I rescued her beautiful sparkly cardigan three times from hopeful purchasers! Could have made even more money, but she wouldn’t part with it!

I was amused by the customer who bought a Harrods wall hanging while saying she would never set foot there as they sold fur!

The children were attracted by the Chocolate Fountain raffle prize & encouraged their parents to buy in the hope of winning it. One little girl was Finland was particularly eager.

We as first-timers were impressed by the hard work and support given by the old timers and public. It was a great day and the amount raised was wonderful.

A GOOD DAY OUT

My wife and I (her carer) attended the MND Association Annual Conference last September. With trepidation, we drove to the Radisson Blu hotel at Stansted, with me wondering what it would be like. I have been to many boring AGMs and my wife was worrying about meting others with MND.

On arrival, we parked and were welcomed by helpful staff with coffee and cake!

The meeting was well organised and we sat with Joyce and Jean from our branch. The Chairman announced how pleased he was to see more people in our situation in attendance, although we were still in a minority. The meeting was both informative and positive and included financial and organisational aspects of the Association. The Q and A session was interesting and amusing at times but all were treated with respect. We enjoyed it and all of our earlier thoughts on AGMs were unfounded.

After the AGM itself, we enjoyed some complementary therapy. My wife and I both had neck and shoulder massage which proved to be a pleasant interlude, as well as beneficial. Well relaxed, we proceeded to lunch, which we also enjoyed – chicken in white wine sauce and lemon torte for Pauline and salmon mousse, haddock in wine and leek sauce and cheese and biscuits for me!

After lunch, Professor Siddharthan Chandran spoke on “Is there a role for stem cells in MND?” He spoke to us on our level using everyday language and diagrams to convey an understanding of stem cell regeneration and research. It was informative and increased our understanding on the subject. Although there will be no changes in this field in the very near future, there will definitely be a light at the end of the tunnel in the coming years.

The next event for us was a talk on MND Connect. They answer any questions or concerns you may have, which your local branch or team have been unable to solve for you. This session was well received and left us with positive thoughts as we journeyed home after an enjoyable day with no cost to us at all.

On returning home, my wife and I reflected on our enjoyable and informative day and felt enlightened be seeing others in our situation who were positively happy and lively characters. With all previous apprehensions gone, we will certainly attend this worthwhile meeting again.

Colin Pearson

A FUTURE OPPORTUNITY FOR ANOTHER GOOD DAY OUT!

On Saturday May 5^th Linda Sharman and Frances Cooper and her family are hosting an event at their home (146, Edwin Road, Rainham). They want to say thank-you to the branch for the support we have given to our friend Frank Bushnell. It will start at 12.30 with hot dogs on sale for lunch – so DON’T eat before you arrive! There will be plant, cake and bric-a-brac stalls – as long as we all take contributions! Frances says she has never done anything like this before, so she needs our support to ensure a successful bottom-line. Be sure you order a sunny day, well in advance!

Ring me (01634 404378) nearer the time for location and parking details.

ONE FOR THE ROAD

As ever, I am a bit ahead of myself and as yet, only about twenty sheets have been returned. However, it is clear that you didn’t like no.7 “Spilt in Georgian times” – I was harking back to Georgette Heyer and duels fought over imagined insults, when according to the slang of the times, blood or “claret” was spilt. Mocha (or mock) was the answer I wanted for no.47, and Manhatten for no 3. from a group known as Manhatten Transfer! Someone suggested “rose” as the flowery answer for no. 8. I have already had more than one all correct sheet though, so my hat will be necessary!

1. Madeira 21. Vodka 33. Cointreau

2. Sack 22. Elderflower wine 34. Tia Maria

3. Manhatten 23. Absinthe 35. Martini

4. Bloody Mary 24. Wine 36. Bucks Fizz

5. Schnapps 25. Champagne 37. Tea

6. Bourbon 26. Shandy 38. Milk

7. Claret 27. Hock 39. Water

8. Mead 28. Port 40. Squash

9. Advocaat 29. Stout 41. Lemonade

10.Gin 30. Babycham 42. Punch

11. Beer 31. Drambuie 43. Dry Ginger

12. Cider 32. Bulls Blood 44. Juice

13. Port 45. Coffee

14. Sherry 46. Coke

15. Lager 47. Mocha

16. Scotch 48. Tonic

17. Brand-y 49. Lime

18. Bitter 50. Booze

19. Pale Ale

20. Rum

ALL BEHIND with the answers to Material Matters!

If anyone still has the questions, the answers are:

1. Satin 26.Serge

2. Cotton 27.Voile

3. Tweed 28.Muslin

4. Silk 29.Chenille

5. Denim 30.Towelling

6. Hide 31.Sackcloth

7. Rags 32.Tafetta

8. Felt 33.Corduroy

9. Crimplene 34.Canvas

10.Ermine 35.Candlewick

11.Leather 36.Flannelette

12.Wool 37.Cheesecloth

13.Damask 38.Net

14.Rayon 39.Baize

15.Velvet 40.Calico

16.Suede 41.China

17.Organdie 42.Brick

18.Polyester 43.Tin

19.Worsted 44.Stel

20.Flannel 45.Iron

21.Lisle 46.Paper

22.Lawn 47.Brass

23.Lace 48.Marble

24.Cashmere 49.Slate

25.Jersey 50.Wood

The next quiz sheet is on a topic beloved by the English – the weather! It will be ready from February 1^st and I would love to post some to YOU to sell to your friends. As well as raising money, they do a great job in raising awareness of MND across the country, if not the world! JL

March 25^th Patient & Carer Meeting, Wisdom Hospice Day Hospice, 3pm

April 16^th Mid Kent Branch Annual General Meeting, Wisdom Hospice Day Hospice, 7.30pm, Speaker to be announced.

May 5^th Garden Party at 146, Edwin Road, Rainham, 12.30pm. Plants, Cakes and Bric-a-Brac for sale.

May 11^th Black Tie Dinner, Bridgewood Manor Hotel, 7.30pm. Tickets £29.50 pp. All further details from Kay Clement, 07976648708

May 20^th Bewl Water Walk, Bewl Water reservoir. Details and Sponsor Forms from Pat Salter, 01634 827452

May 27^th Patient & Carer Meeting, Wisdom Hospice day Hospice, 3pm

June 1^st -30^th MND AWARENESS MONTH

June 10^th Garden Open, Tye House, Nashenden Lane, Borstal,

11am - 4pm.

One of many glorious scenic memories of David’s cycle ride

Mid Kent Branch

Motor Neurone Disease (MND) is the name given to a group of related, but widely varying, diseases affecting the motor neurones in the brain and spinal cord. Motor neurones are the nerve cells that control muscles; hence their degeneration causes weakness and muscle wasting.

MND is usually regarded as progressive but the rate of progression varies greatly from person to person and between the three main types of disease. In the UK it is believed that there are about 6,000 people suffering from MND at any one time.

PLEASE REMEMBER

BEFORE YOU SPEND MONEY ON A PIECE OF EQUIPMENT, CHECK WITH THE APPROPRIATE PROFESSIONAL. IF IT IS SOMETHING THEY DO NOT PROVIDE, SPEAK TO YOUR ASSOCIATION VISITOR OR JOYCE ONSLOW (01634 846330) – IT MAY BE THAT WE CAN HELP, EITHER BECAUSE WE ALREADY HAVE THE ITEM, OR WE CAN GET IT FOR YOU.