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Look East story sparks interest

Posted on: February 22 2017

balance-trainer-at-josephs-court-ms-uk.jpgHi everyone,

I was really interested to be told about the late news on Look East last night - there was a story about multiple sclerosis. You can still view this on the BBC on their website until 6.45pm tonight.

A lady called Brenda Palmer was featured on the programme, talking about how a piece of equipment that has made such a difference to her life - the equipment is a sturdy wooden frame. A physio from Norfolk has set up a trial to test its effectiveness in Norfolk and Suffolk. 

The whole story got me thinking about the state-of-the-art equipment MS-UK has at our wellness centre in Essex, Josephs Court. We support over 160 people affected by a range of neurological conditions to exercise in a safe, professional, affordable environment while joining a genuine community of local people.

I wanted to let you know about the state-of-the-art balance trainer that our clients can come and use as often as they like. The client is helped into the balance trainer with the electric hoist incorporated in the machine. The client is then secured by aligning a bar behind and across the lower back. The whole body can then be held in a straight secure position and the client is encouraged to exercise the torso. Being able to stand and exercise upright rather than sitting down is so beneficial.

If you would like any further information, or to visit our Centre and find out more, please do get in touch. You can email us at josephscourt@ms-uk.org or call us on 01206 867222.

Best wishes,

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Michael Kinton

Centre Manager, Josephs Court

Dressed to impress

Posted on: February 21 2017

photo-of-founder-katie-ellis_sm.jpgIn the latest issue of New Pathways magazine, we caught up with Katie Ellis, former fashion buyer and founder of The Able Label. Here’s a sneak peak of our interview with Katie...

For those who want to remain independent and maintain their style, the Able Label hopes to offer a new solution. Founder Katie, previously a fashion buyer for the popular lifestyle clothes retailer White Stuff, saw first-hand the difficulties her grandmother faced dressing each day with Parkinson’s so decided to do something to help.

Offering “beautiful clothes, designed to make dressing easier”, Katie aims to offer a range that is not only suitable for those with Parkinson’s, but the thousands of women who also face difficulties dressing. Whether due to restricted movement, lack of finger dexterity or cognitive difficulties, the stylish clothing is designed to help.

“Able Label is a range of beautiful clothes, designed to make dressing easier.”

frankie-straight-leg-trouser-close-up-web2_sm.jpgKatie is determined to ensure attention to detail is at the heart of The Able Label – think quality, comfort and style but with the added benefit of being easier to dress. All styles are made from quality, natural fabrics making them breathable and super soft next to skin. Most contain elastane, which gives extra stretch and makes it easier to get on and off, also making them more comfortable to wear.
“The ‘EasyFasten System’ means you simply need to match the coloured hook and loop touch fasteners; red to red on the right, lime to lime on the left and you are good to go!” Katie explains.

“The collection is designed to help both individuals wanting to maintain independence as well as carers assisting with dressing – making it quicker, easier and safer.”

Find out more...

You can view the full range online at www.theablelabel.com, request a catalogue via 01622 828994 or cservices@theablelabel.com.

Prices start from £25.00 and as the range has been specifically designed to make dressing easier, it is eligible for VAT exemption.

All styles are available in sizes S(8-10), M(12-14), L(16-18) and XL(20-22) as standard with some also available in XXL (24-26). Trousers are available in a regular and short leg lengths. An alterations service is also available so should you require any adjustments, they can be completed before the order is dispatched.

The transformative power of dance

Posted on: February 17 2017

sadlers-wells.jpgHello, Back in 2016, I attended a really interesting event hosted by Andrew Greenwood at Sadler’s Wells. For those of you who know me, I am by no means a ballet dancer, but I was really pleased to be invited along to learn how dance can still be accessible to people with physical or cognitive impairments.

In 2012, Andrew cofounded the organisation Dance for Health and created education programs specialised for people with conditions such as multiple sclerosis and Parkinson’s. His main aim is to communicate to wider society and especially to the medical world that dance can be a source of health and wellbeing.

Not only did I meet some amazing dance practitioners who all wanted to ensure people affected by multiple sclerosis could participate in dance, but I also got to take part myself!

andrew.jpgNow, Andrew is offering a two day introduction workshop for dancers and movement practitioners, which will be held in Scotland this March. You can find out more on the Switch2Move website now.

For those of you who enjoy dancing, I would love to know what your experiences are. Do you think dancing can improve your wellbeing? Do you know of a great dance class near you that is inclusive?

If so, do get in touch by emailing me,

Best wishes, and happy dancing!

Laura May

Spring into action!

Posted on: February 16 2017

berenice.jpgSpring into action!

Bees have battery savers!

Bees lie dormant in their nests in winter curled up in their brown and yellow sleeping bags saving their batteries.

Spot the bee in this photo…

It’s me! Some people call me Bee and here I look like one!

Many of us are like bees staying in on cold winter nights and lying in bed with the frost outside. Then in spring we go out more and even do some cleaning! Well hopefully…

Be like a bee! Spring into action by signing up today for one of our events…

British 10K on 09 July

Prudential RideLondon Surrey 100 on 30 July

Just email me at Berenice@ms-uk.org or call me on 01206 226500

Meet Miranda

Posted on: February 14 2017

miranda.jpgMiranda Olding, MS nurse, has joined the New Pathways columnist corner, so in this blog we find out all about our new writer…

Name: Miranda Olding

Eye colour: Greeny brown

Occupation: MS Specialist nurse

Why I agreed to write a column for New Pathways:

I’ve written about things that I’ve learned that are useful in MS, for many years. This started in the Bedford MS Therapy Centre (where I work)’s quarterly newletter, and soon spilled out into a blog.

The ethos of the blog is Integrated Medicine - could be conventional, could be very much not mainstream - but if I find it can be useful for my patients and other people with MS, I want to share it! I’ve enjoyed reading New Pathways since I started as an MS Nurse back in 2004, so coming to do a column just felt like a natural step.

If I was a movie star, I’d be:

OMG! It would be easier to say who I’d LIKE to be - I'm really admiring Thandie Newton right now  but in reality - probably more …. Jim Carrey?

If I was a character in a book, I’d be:

Same response! In reality, probably someone who gets very inspired by ideals but also often trips on their face; Katy in What Katy did, or Dorothea in Middlemarch?

Three things I couldn’t live without:

Tea (with soya milk). Sunlight. Pringles terry towling trainer socks.

My greatest achievement:

My kids turning into decent people.

My motivation for doing what I do:

I believe that with kindness, and curiosity, we can always do better. There’s always more out there. I want to bring things that work to my patients.

My nickname: I don’t have one!

My catchphrase: You Can Do This!

Happy Valentines!

Posted on: February 13 2017

Love is literally in the air this Valentine’s day!

rory-and-hilary-6.jpgValentine’s Day is just around the corner and a lot of people I know are trying to find the perfect gift for their loved ones! Maybe they’ve bought an amazing bouquet of flowers, a massive heart shaped box of chocolates or are treating themselves to a night in by the telly.

We at MS-UK, however, like to go a bit more extreme with our valentine’s gifts. We like to send people off to scream about their love from 10,000ft!!

Yes, I’m talking about a skydive for MS-UK!

We have a fantastic offer that has been passed to us by Skyline that is not to be missed! When you sign up to any event on skyline you can get two for the price of one on the registration fee. This means for a skydive you only pay a £70 registration fee for two of you to jump and if you raise over £395 each (£790 together), you’ll even get this cost back, making your jump effectively free!

This could be the most unique and perfect valentine’s gift for you and a loved one. But it’s not just limited to your valentine! You could also take the leap with your best pal or even that guy from down the street, the choice is yours!!

If you are interested in the offer and skydiving for MS-UK, you can use the code ‘SkylineValentinewhen booking on the skyline website here. This offer ends on 14 February at midnight, so be quick! Please also get in touch with me if you’d like a bit more information, my details are below!

Nicholas Adams
Fundraising Assistant
Nicholas@ms-uk.org
01206 226500

Meet our editor...

Posted on: February 10 2017

sj1.jpgHi I’m Sarah-Jane and I’m the new editor of MS-UK’s New Pathways magazine. I’ve been here a month now and already I’m getting to know the readers of New Pathways rather well, it’s great to see just how much you value the magazine.np101-front-cover_sm.jpg

I’m pleased to tell you that issue 101 of New Pathways is out now!

Catch up on the latest MS news and enjoy the first in a new series of columns from MS nurse, Miranda Olding, as she discusses how you can take back control from anxiety and treat panic attacks the holistic way.

Regular New Pathways writer, Ian Cook investigates why researchers are using crowdfunding sites to fund research and Charlie Gee looks back at the pictures of his life and a time when he really did push his limits.

In addition, Amy Woolf, CEO of MS-UK discusses the charity’s new counselling service and asks for feedback on what you need from us. We would be really grateful if you could spare a little time to answer our short survey.

 

Also, do not miss the latest advancements in wheelchair technology, a look back at Biotin, Trishna Bharadia’s review of HackAMSterdam, your real life stories and some beautiful clothing designs from ex White Stuff buyer and founder of The Able Label, Katie Ellis.

New Pathways magazine is available in a variety of additional formats including digital, plain text and audio. Simply click here to subscribe, or alternately you can call 01206 226 500.

In addition, I want to hear from you! Whether you’re fascinated by stem cells, need to know about the latest drugs, need advice on how to be mindful or meditation - whatever your interests, I want to hear about them. Please email me at sarah-jane@ms-uk.org with your suggestions, or write to me at New Pathways, MS-UK, Unsworth House, Hythe Quay, Colchester, Essex CO2 8JF.

I look forward to hearing from you!

Sarah-Jane Lampe
Editor

Fundraiser of the month - Lauren Duckling

Posted on: February 08 2017

Hello! My name is Lauren Duckling and I did a sky dive for MS-UK. I decided to fundraise for MS-UK, firstly, because I work for the charity and I see the clients in Josephs Court who have been affected. Not only by MS but with other neurological problems and they do not let their condition affect them. They have given me a better outlook on things and as I speak to the clients almost every day they have really put into perspective just how they miss the little things or what troubles them the most.

The second reason I decided to fundraise was because a person very close to me has MS and knowing it affects her very badly, I wanted to do something for her and the clients even if it made the slightest difference.

The first time I had heard about the event was when I was sitting with Mark who had worked in the Fundraising department and he emailed me the details and I had booked the date with a couple of my friends who chickened out last minute. I had thought about not doing the jump after they pulled out and maybe, booking another date in the following year when they could do it but I was looking forward to doing it so I continued with it.

I had picked a bad date to do it because not only was it December but my sister had a flight that morning – and to kill two birds with one stone – I had to be up and out the door by half 2 in the morning and then drive from London to Norwich. So after nearly 6 hours in the car I was going to chuck myself out of a plane. If the thought of that didn’t wake me up the McDonalds I had definitely did.

I’m really glad I did it. I thought that it was going to be scarier than from what my dad was telling me. The whole experience was worth it and I will most likely be doing another one in the near future. There was a point where I thought I wouldn’t make the minimum amount needed to be raised but then during the last couple of weeks I went from being under the target to being a couple of hundred pounds over.

In the end I managed to raise £523 altogether. I think the biggest tip I would have for anyone who is going to do any fundraising is to give yourself plenty of time for people to donate.

If you are fundraising online then getting your friends, as well as their friends to share your link is the best way I can think of to get your target.

To those of you who want to fundraise I wish you good luck!

Valentine's Day

Posted on: February 08 2017

untitled-design-1.pngHi all,

We want to help you tell that someone special how much they mean to you this Valentine’s Day and help us help all those affected by MS!

Here is all you have to do…

  • Remember to put a lovely message in the comments box, or perhaps request a song!
  • Tune in to the MS-UK Twitter page or Facebook page between 9am – 5pm on Tuesday 14 February, when we’ll be sharing all of your messages!

We hope you have a lovely Valentine’s Day!

john_sig2.jpg

John Habkirk

Digital Officer

Guest blog: Robert’s adventure with Oceans of Hope...

Posted on: February 07 2017

image1-1_0.jpgIn November 2016 we introduced the first of a series of guest blogs from Robert Munns. Robert is involved with the Oceans of Hope Challenge, which is an adventure like no other for people affected by multiple sclerosis. In this series, Robert is taking us on a journey right from his own diagnosis of MS, through to now, when he is sailing and supporting others. So, time for the next installment...

Since being accepted on the Pacific leg on Oceans of Hope, I have really changed my attitude to life again. It’s an opportunity for expanding outside of my comfort zone once more. Since my last year as skipper of MY Big Smile, I've not really been the confident Robert that I used to be. It’s been a real boost to have this goal to look forward to and plan for.

For those of you reading this blog that know me, planning for things is not my strongest attribute. But this trip has been on my mind, right at the front since meeting Mikkel in Brighton marina.

Since having made my mind up last year, I have been more relaxed with life and happier to make decisions. One of these decisions was to go and get another MRI scan to see how my brain was doing. Since seeing the additional scars/lesions I realise life is far too short to waste time not crossing the road for fear of being knocked down. I now appreciate how paralysing this state of mind can be. It's very simple… I can walk, I can talk, I can jump and I can swim. Most importantly, I can still swing a golf club!!!

My family and friends have watched me succeed and fail at life, love and all the other stuff too. For these highs and lows, they have always been there for me. This was most apparent when I had my attack in 2008. I do not know where I would be if they weren't there for support, comfort, strength or just to make me laugh when I thought I could not.

Having this opportunity is amazing for me and is unbelievably timely. I have given up my job for this and have no idea where my path will lead afterwards. I have useful and valuable skills that will still be there when I return, but for the time being, that is not going to worry me.

So I got on a plane from Gatwick to Madrid, stayed over in a budget hotel for an early flight to Equador. This was the first culture shock of landing in South America, a continent that I had never been to before. Equador's Capitol is Quito, where I landed. I had then organised a room in a family B&B somewhere in the city near the airport. I arrived in darkness and got picked up a stranger who took me into his home. To be honest, I forgot his name, but he cooked me some food and we shared a conversation over a beer and I found out quite a lot about the country and its biggest economic concern... The price of oil and how this black gold and its huge reduction in market price was killing the national economy.

I also learnt about the country's relationship with my destination, the Galápagos.

These islands that have been such an important place in the Theory of Evolution and I had no real concept of the Galápagos apart from David Attenborough programs and glossy holiday magazines.

But when I landed, I was hit by the shock and awe of the opposites and contrasts of this unique group of islands.

Whatever the brochures say; whatever the amazing pictures; yes it's all there in it's amazing technicolor magnificence. It really is!

However what we don't see in the brochures is the small and underfunded country struggling to keep up with the ravaging tourism going on there.

I'm not going to show you the glamorous pictures but a couple of images of the crafty islands fighting to keep up with this "progress".

blog1.jpgThe infra structure was unable to keep up with the thousands of small coaches and mini buses that transfer people from the airport. The main road is a mud track that is constantly in use and constantly being eroded and patched up repaired. It's awful and was truly upsetting.

The place needs a break from tourism. It needs to be left alone for a while to have a chance to responsibly cope with the demand. The country needs to stop chasing the $100 per person tourist tax and come up with some kind of solution. Or they will destroy one of the most
important natural areas of the world.

blog2.jpgSo upon arrival, I found my way to the main town and sort out the boat. She was safely anchored in the main bay. After 72 hours of travel, by foot, by bus, by train, by plane and now by water taxi, I finally arrive on Oceans of Hope! In retrospect, this yacht has given me and so many people since so much hope; she has changed so many people's lives. Such an amazing, amazing yacht and it was awesome, so incredibly awesome to finally arrive. My aims for the whole 4500 mile trip were purely physical, I feel I needed to be stronger and a good influence on the whole crew; I wanted to fulfill three main ambitions:

  • Catch a fish, kill a fish and cook a fish
  • Climb up the mast and scream in the middle of the Pacific 1600 miles from land.
  • Learn how to use a sextant.

You'll find out next time that none of these happened and my trip became an odyssey. You will also meet my fellow crew mates, our Captain and Bosun. An incredible bunch of people who taught me a lot and helped me put my MS into perspective.

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