Skip to main content Skip to navigation

MS Trust Blog Home

Take part in our survey and help us improve people’s experience of MS diagnosis

25th July 2014 by Stephen

To help launch an exciting new MS Trust project we’re looking for people to tell us about their MS diagnosis and how it could have been improved.

Who gave you your diagnosis? Did they give you any information? Would you have liked more? What would have put your mind at ease? What advice would you give to people who are being diagnosed now?

If you’d like to get involved then please take our short online survey.

Your input will help us make a difference for even more people affected by MS!

Secret Art Show founder curates a special selection

18th July 2014 by Stephen

We’re now over halfway through the MS Trust Secret Art Show 2014 and it’s proving to be our best yet! Some lucky people have already snapped up some amazing pictures at a bargain price – and helped us raise over £13,000! That will help us make a difference to even more people living with MS with our positive, practical and trustworthy MS information.

However the good news, if you’ve not yet had a chance to look at our online gallery, is that there are still some beautiful pictures available to suit every taste at the tantalising price of only £45.

To give you a few pointers, the founder of the Secret Art Show (and co-founder of the MS Trust!) Jill Holt has guest curated a selection of some notable pictures still available.

Floral impressions II   Building Blocks   Burnham Tide   Woodland Wonder

To see Jill’s full selection – which includes some wonderful collages and linocuts, as well as oils and watercolours – visit her specially curated pages.

Remember, the Secret Art Show closes at the end of July. So to make sure you don’t miss out, visit our art shop now!

Have you got 56 questions about MS? Ask the Information Team.

10th July 2014 by Nicola Pates

Living with MS can generate lots of questions.

Being diagnosed generates the first batch.

The list can be very long – an article in the Telegraph newspaper today lists 56 questions from someone getting to grips with his MS diagnosis. How many did you have?

Getting your head around being diagnosed can take some time and be a bit of an emotional rollercoaster. More questions…

Perhaps, later on, symptoms kick in that you haven’t experienced before. Even more questions…

Perhaps you’ve got a review coming up with your MS health professionals. It’s a good opportunity to ask questions but…

The MS Trust can help

We have information you can trust. If you are newly diagnosed you might like to browse our new suite of resources called Making Sense of MS. You can read our Fast facts for a quick overview or Dig deeper for further information in our new publications for people who are recently diagnosed.

You might like to look at our A to Z of MS – you can browse for information on the topic that’s most important to you right now. This is a great way to begin understanding your symptoms, exploring treatments options and living well with MS.

Ask us! The Information Team is here to answer your questions. It could be something really general or something very specific about MS. We specialise in health information and we can usually point you in the right direction for information on other topics related to living with MS.

You can reach us by calling 0800 032 3839 or 01462 476700 or emailing infoteam@mstrust.org.uk

Get social and ask the MS community what they think. The MS Trust is on social media including Facebook and Twitter.

Having questions is good. Having answers is even better.

Information and support come in many forms and can help to strengthen you. They may help you understand your MS and allow you to move forward.

Test us out. Take a look at our website or call us with your questions. We look forward to helping you.

Bargains still to be found in the MS Trust Secret Art Show!

4th July 2014 by Stephen

Pictures by some of our artists regularly sell for over £7000We’re coming to the end of the first week of the MS Trust Secret Art Show 2014 and already it’s been an amazing success. In just five days we’ve already sold more than one-third of the original 650 pictures! Some lucky friends of the MS Trust have bought some beautiful pictures at a bargain price and helped us raise over £12,000. That’s enough for us to train over 150 MS specialist nurses, physios and other health professionals to help even more people with MS!

However, you haven’t missed out! You still have a chance to pick up a masterpiece for less than the price of a meal out. Among the 300 or so pictures left there are anonymous contributions from some of the biggest names in British art – some of whose pieces regularly sell for up to £7,000.

Still available are pictures by:

  • Caroline Tate, the landscape and abstract painter renowned for her light, exuberant colours.
  • Andrew Macara, a member of the Royal Society of British Artists and one of our most distinctive contemporary painters. Work currently sells in the region of £7,000.
  • Neil Kerber, one of the UK’s funniest and most popular cartoonists.
  • Sally Sheinman, an American artist based in the UK who pushes the boundaries of painting with new technology.
  • Tom Wanless, the well-known painter who has won awards from the Royal Institute of Oil Painters, the Royal Society of Marine Artists and the Royal Society of British Artists. Work sells for over £1,000.
  • Peter Schoenecker, the graphic artist and fine artist who has also worked as an illustrator for Hallmark Cards.
  • Michael Ewart, an oil painter known for his scenes of everyday life in railway stations, cafes and libraries. Work currently sells in the region of £600.
  • Geoffrey Pimlott, known for his bold, geometrical watercolours which sell for over £500.
  • Caroline McAdam Clark, the painter, illustrator and muralist known for her landscapes and seascapes. Work recently sold for over £2,000.
  • Peter Clossick, the figurative oil painter, renowned for his sensual, tactile portraits. Work sells for over £4,500.

So fine tune your art radar and get hunting! You never know what you might find!

Give official feedback about how Personal Independence Payment is working

3rd July 2014 by Shan Teo

The Department for Work and Pensions is seeking feedback from real people about your experience of claiming Personal Independence Payment (PIP), in a consultation process that lasts until 12 noon on 5 September 2014.

They have commissioned the first independent review of how PIP is working (or not), and are specifically asking for feedback about personal experiences of going through the claims process. This Review is a statutory requirement of the Welfare Reform Act 2012, but the terms of reference, available here are reasonable.

The MS Trust is not responding to this consultation as we have no experience of going through the process. But many of you do, and this is your chance to let the DWP know exactly how dismal your experience of claiming PIP has been.
As is the way with consultations, there are specific questions that they are looking for you to answer. You can write a letter, or email these responses, or there is an online form – all the options are set out here but you may need to scroll down the page.

Many of the questions allow the independent reviewer an insight into your experience of the process, since these include questions such as:

“Please describe:

  • a) How easy is it for people to understand the whole process?
  • b) How easy is it for people to make a claim?”

and

“Please tell us about the experience of having a face to face consultation with an Atos or Capita health professional.”

and, very relevant for MS:

Question 5: Where you have evidence of any of the following, please describe how effective the PIP assessment is: c. For people with conditions that change (fluctuating conditions)?

They are also asking questions about the appeals process, and about the time taken from making a claim to getting a decision, and what the impact of this has been on your life and finances.

I would urge you to respond to this consultation. I cannot guarantee that an independent review of PIP will trigger change, however, it is the first time that the Government has officially acknowledged how unhappy disabled people may be with this new benefit and it is your chance truly to have your say.

The MS Trust Secret Art Show opens for business 9:00am, Monday 30 June!

27th June 2014 by Stephen

If you’ve had your eye on any of the amazing pictures in this year’s MS Trust Secret Art Show be sure to be poised over your computer, tablet or phone at 9am on Monday morning. If you snooze your may lose your chance of picking up a masterpiece at a bargain price!


Picture of dog Picture of cat Picture of daisies Picture of tree Picture of lady in hat

If you haven’t had a look yet, the shop is open for viewing now. This year’s show includes contributions from big names including Norman Ackroyd, Mali Morris, Ray Richardson and June Berry. All pictures are 12cm x 12cm and are sold anonymously for £45 each. So you could pick up a picture by one of the UK’s top artists for a snip!

And because all funds go towards the work of the MS Trust, you’ll also be making a difference for everyone affected by MS!

5 ways my dogs brighten my world of MS

26th June 2014 by Stephen

A lot of people with MS will tell you that having a dog helps them deal with their condition. Some research suggests having a pet can be therapeutic for people with long term conditions, while recent research suggests that balance or service dogs may help people with MS with walking difficulties, as well as some household tasks.

When Emma Coldron was diagnosed with MS, she found her dogs to be a great support. So much so that she’s written a book about just how much they’ve helped her. We asked her to share some of her thoughts on how her dogs helped her deal with MS.


Emma and her dogsI remember the first time I looked into a dog’s eyes and felt the two of us see into each other’s souls.  Since that moment I will not be convinced by anybody that a dog is, “just a dog”. Since being diagnosed with MS nearly four years ago my four dogs have made each day both a challenge and joy to live.

1. Nothing but love

Being diagnosed with a label that carries so many connotations means you are often met with “that look”.  You know the look, the one that screams pity.  Well my dogs don’t feel sorry for me, they don’t get angry with me when I have mood swings or forget things.   They don’t judge me if I lie on the sofa all day, they just burrow under the blanket and join me.  If I’m sad and a tear falls from my cheek, one of them will rest their head on my shoulder or their paw on my lap, no words are spoken but comfort surrounds me.  It doesn’t matter what I can or cannot do, my dogs are always there, just happy to be with me.  I believe that kind of love is known as unconditional.

2.  The great outdoors

On happier days when I fancy getting out of the house and everyone I know is out at work, I can clip a lead on to my dogs and close the front door behind me.  I might see a fellow dog walker or chat to a neighbour.  I might not see anyone but feel the sun on my face and hear the birds singing.  My Jack Russells may see a cat and pull me down the road barking furiously.  All of these get me out of the house and remind me I’m alive.  Sometimes my dogs do that by chasing a ball and showing me the joy it brings them, sometimes they do it by letting their inner wild wolf run free to bring me complete embarrassment. It’s always an unknown.

3.  Laughter is the best medicine

Not a single day goes by when my dogs don’t make me laugh.  Admittedly there are times this is fuelled by mine and my husband’s ‘voices’ for the dogs.  They all have their own personalities and we have created voices for their looks and actions. Yes we are one of those couples.  One time I was sitting crying at the kitchen table, everything was going wrong.  Ronnie, my little Jack, hopped up onto my lap.  He proceeded to break wind loudly, hopped back down to the floor to look up at me and curled up his lips into his notorious ‘smile’.  I laughed so hard and he decided his work was done and trotted off to his bed.

4.  The muse for my soul

It’s safe to say my dogs have shaped my life and made me the person I am today.  Ten years ago I didn’t have one dog of my own let alone four.  The behaviour issues I encountered with my Jack Russells gave me a thirst for learning about the canine mind.  The more I learnt led me to develop a real passion for dogs, so much so I changed my career to working in a boarding kennels.  After having to give this up due to the MS I got involved with my local rescue kennels so I still have that part of my life, just in bite-size bits.  I began writing the memoir of my journey with the dogs and the MS. Hearing that other people with MS have read and enjoyed my words is a feeling I’d never have known without my dog adventures or MS diagnosis.

5.  Life’s great teachers

My dogs have taught me so much.  They live in the moment, they do not think about yesterday or worry about tomorrow.  The future is a scary thought for me and I’m sure many others with this disease.  Whenever I look at my dogs sleeping soundly in the sun or overwhelmingly happy chasing a ball, it reminds me not to worry about ten years time and to live now to enjoy all the smaller things in life and smile.


My book, My Dogs, MS and Me, is available on Amazon in both Kindle and Paperback editions.

The next issue of our free quarterly newsletter Open Door will have a special feature on getting out and about when you have MS. Sign up now to make sure you don’t miss out.

 

 

 

 

Thank you to the Free Wheelers!

23rd June 2014 by Stephen

Kenny Smith with Robin ReliantCongratulations to MS Trust fundraising superstar Kenny Smith! Over the last 12 years, through countless marathons, treks and bike rides, Kenny has raised over £30,000 for the MS Trust. Five years ago he dreamed up the annual MS Circuit Challenge at Goodwood, which this year is on course to raise over £15,000. And last weekend he and a crew of dedicated friends pedalled over 23 miles in a Robin Reliant and raised another £1000! Below Kenny tells about the day.

On 21 June 2014 12 friends pedalled our modified Only Fools & Horses three-wheel van from The Prince Of Wales Pub in Woodgate to the centre of Chichester then onto the Pier at Bognor, and while doing so raising much needed funds for the Multiple Sclerosis Trust!

The three-wheel van has been stripped of its engine, all working parts and chassis. It has been totally rebuilt as a pedal car by our friends at D & R Structures.

After bacon rolls and coffee we left the Prince of Wales pub at Woodgate at 9:00am and got to the cross at Chichester at 11:30am.

Then we headed for Bognor and reached the Bognor Pier at around 2:30pm

We then pedalled along the seafront and through the town and got back to the Prince at 5.00 for a well earned round of drinks!

It was 23 miles in total. We didn’t have any problems with traffic as we pulled over quite often and we had our own marshals on traffic duty and we had back up vehicles at the front and rear. We all took it in turns to pedal and steer and to collect money on route while dressed up in fancy dress.  We had a lot of interest from the public who were all amazed that our van  was in fact a pedal car, and was human powered!!

In Chichester we raised £190.51 and in Bognor we raised £130.66. Some of the team managed to raise sponsorship for the challenge bringing the total for the day to £1106.17.  That evening we also had an Auction and raised an amazing £815! Plans are already underway for our next Free Wheelers Challenge!

 

Spread the word about MS bowel and bladder resources this World Continence Week!

23rd June 2014 by Stephen

Today is the start of World Continence Week 2014, the annual global campaign to raise awareness about incontinence issues.World continence week 2014 logo

Many people with MS experience continence issues. It’s estimated that up to 80 per cent of people with MS will have bladder problems at some point. These can be difficult to talk about, and can have an impact on your work and social life. If they go untreated they can have serious consequences. However, there are many ways you can successfully treat and manage these difficulties.

Earlier this year, we published two new guides to dealing with bowel and bladder problems. And during MS Awareness Week we launched our Continence Question Time, a series of short films featuring a panel of experts answering some of your common MS and continence questions.

All this week we’re going to be sharing some of these films. Please have a look and if you find them useful why not share them online? And if you have any MS continence questions that haven’t been answered be sure to contact the MS Trust information team!

Today’s featured video explains just how MS can cause bowel and bladder problems.

The MS Secret Art Show 2014 opens for viewing on Monday 23 June!

20th June 2014 by Stephen

Fancy your eye for a masterpiece? Think you know a bargain when you see one? Then the MS Trust Secret Art Show is tailor-made for you.Picture of a dog

On Monday over 600 artworks from over 300 artists go on display in our Art Shop. All are 12cm x 12cm and all will be available to buy from 30 June for just £45. All are displayed anonymously, but they include contributions from:

Jeremy Barlow,  June Berry, Vanessa Bowman, Rebecca Campbell, Jamie Charteris, Peter Clossick, Margaret Duff, Mark Dunford, Michael Ewart, Judith Green, Lizzie Hale, Julie Held, Robert Kelsey, Amy Lanyon, Rupert Loydell, Tom Mabon, Andrew Macara, Caroline McAdam Clark, Mali Morris, Janet Patterson, Geoff Pimlott, Rex Preston, Ray Richardson, David Sawyer, Rosa Sepple, Sally Sheinman, Chloe Talbot-Kelly, Caroline Tate, Tom Wanless, David Webb, Susan Wilson and David Wiseman.

Picture of a duckThe identity of the artists of each artwork will only be revealed when the work is purchased. So this is a fantastic opportunity to sniff out a painting that could be worth much, much more and to support the work of the MS Trust, making life better today for the more than 100,000 people in the UK affected by MS.

The Secret Art Show is now in its fifth year. It was founded by MS Trust co-founder Jill Holt in 2010 as a gallery show in York. It proved so popular that in 2011 we started to run it as an online show so that even more artists and buyers could take part. In this time you have helped us raise almost £87,000. That’s enough for us to train 50 new MS nurses, who will make a vital difference to the lives of hundreds of thousands of people living with MS.

Painting of two catsMany of the contributing artists have an MS connection, including Ray Richardson. “I’ve contributed to the Secret Art Show from the start,” says Ray. “Since I got involved two people I know closely have unfortunately been diagnosed with MS, so it makes it much more personal to me.”

Artwork can be viewed all next week and will be available for sale on Monday 30 June. So take a look at our buyers guide, have a good browse through the hundreds of amazing images and get ready to snap up a potential bargain!