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Our Christmas opening hours...

Posted on: December 14 2018

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Holidays are coming, so here's an update about our opening hours over the next few weeks...

Our office

The MS-UK office will be closed from 5pm on Friday 21 December until 9am on Wednesday 02 January 2019.

Josephs Court

Josephs Court, our Wellness Centre, will be open during these times:

  • Saturday 22 December 2018, 9am - 3pm
  • Thursday 27 December 2018, 10am - 2pm

Josephs Court will then reopen at 9am on Wednesday 02 January 2019.

From all of us at MS-UK, we wish you a very merry Christmas if you are celebrating and a happy New Year!

Managing fatigue

Posted on: November 28 2018

In this blog, our MS-UK Helpline take a look at fatigue...

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Our Choices leaflets are available online

Fatigue is one of the most common symptoms of multiple sclerosis (MS) and it can often feel overwhelming during the cold and dark winter months. However, with the help of the MS community, we’ve gathered together a few tips and techniques that may help you through!  

Firstly, though it may seem counter-intuitive, moderate exercise has been shown to improve resistance to fatigue. Now, we are by no means suggesting that you run a marathon, but a small amount of regular walking, swimming, or yoga, among many other options, could make a positive difference in the longer term. For more information on exercise, please see our Choices leaflet.

Looking after your mental wellbeing is also important. Activities like meditation, mindfulness and relaxation, as well as just being aware of the need to factor in time for rest, are tips that the MS community have shared with us in relation to managing symptoms. This self-aware approach is particularly useful when it comes to fatigue because taking the time to plan activities and daily patterns, as well as breaking down tasks into manageable chunks, can really make things less daunting on a day-to-day basis.

It may seem like a bit of cliché, but we can hardly talk about the usefulness of exercise without also talking about healthy eating. It is well known that eating a balanced diet helps people to maintain good health and feel their best, while poor diet can lead to fatigue. This is no less true when it comes to MS. Supplements, including B12, Co-enzyme Q10, Vitamin D and Omega 3, can also contribute to reducing fatigue, though we suggest speaking to your GP or neurologist before taking anything new. For more information, please see our Choices leaflets on Diet and nutrition and Vitamin D.

Other therapies that some people with MS have found to be helpful include acupuncture, oxygen therapy, and Action Potential Simulation (APS) therapy. Oxygen therapy is widely used across the UK in the many MS therapy centres and those who regularly attend sessions have found that it can greatly improve fatigue levels. To find your nearest therapy centre, use our website.

You can read and download all of our Choices leaflets on our website

Guest blog: Gavin's marathon mission...

Posted on: November 19 2018

In April 2019, Gavin King will be taking on the Virgin Money London Marathon in aid of MS-UK. In this guest blog, Gavin tells us about why he’s chosen to fundraise for MS-UK, and how multiple sclerosis (MS) has had an impact on his family...Photo of Gavin, MS-UK fundraiser

‘After missing the chance to run the Virgin Money London Marathon through the ballot, I decided that for 2019 I would fundraise for a charity close to my heart, MS-UK. I'm pushing hard, taking on multiple challenges and races between now and the marathon. So far, fundraising is going ok.

‘My Dad was diagnosed with MS when I was a child. I still remember the day he sat me down and told me. I had no idea how bad MS was or how it was going to change our lives and yet it still tore me apart.

‘Sitting here now typing this still breaks my heart and brings a tear to my eye.

‘For the past 20+ years, I've seen MS take my father away from me. At first, it was only really fatigue that was noticeable and a few days where he wasn't great on his legs.

‘As time went on, he lost the ability to drive and eventually couldn't even walk or feed himself.

‘MS has also damaged his brain, wiping out his short term memory and his ability to talk. This has been the biggest impact on me, not being able to speak to him, ask him questions and all the things a son should be able to ask his father.

‘I regret not making the most of the last good years with him while I still had the chance.

My Mum cares for my Dad 24/7 which really takes its toll on her, she's stubborn though and does everything she can for him.

I chose MS-UK and the London Marathon to show my support for my family and to raise as many funds for such a supportive MS charity that gets much of its funding through the London Marathon charity places.’

You can find out more and make a donation on Gavin's JustGiving page

We’re here...

If you have been affected by this story, you can contact the MS-UK Helpline via email, on 0800 783 0518 or via live web chat. We’re here to provide information and support, or just to listen.

Brrrrr…Our 10 top tips for dealing with the cold

Posted on: November 06 2018

The MS-UK Helpline shares some top tips for dealing with the wintry weather...Winter top tips graphic image

It feels a little that people with multiple sclerosis (MS) are stuck between a rock and hard place when it comes to the weather. After the extremely hot summer we’ve just experienced, many people had issues with the heat, and now winter is just around the corner bringing problems and anxieties of its own.

MS symptoms can be exacerbated as the temperature drops. It is not known exactly why the cold has a negative effect on people with MS symptoms. Some of the symptoms that can be exacerbated by the cold weather are:

  • Increased stiffness and issues with spasticity
  • Higher fatigue levels
  • Increased and unpredictable bladder urgency
  • A worsening of perceived pain
  • Problems with sensory issues, particularly in the extremities

One additional issue may be the shorter days and not being exposed to as much direct sunlight, therefore not getting as much natural vitamin D as in summer months. The lack of sunlight, the shortening of the days and the difficulties getting out and about can also be contributing factors towards negative mental health with potentially worsening anxiety and depression.

Like many other aspects of living with MS, a little planning and forethought can go a long way when coping with activities in the winter.

Top tips...

  1. If your spasticity and stiffness increases in the cold, it is worth speaking to your MS team. There may be medications that you can take or if you are already using drugs the clinicians may suggest changes to dosage. There are also things you can do at home to help with stiffness, like stretching exercises, yoga or Pilates
  2. Wear layers. The thermal insulation of layers can make sure your core stays warm. We suggest choosing easy to remove clothes, as if you begin to overheated you can shed a layer or two.
  3. Make sure all your equipment and aids are well serviced and ready for the winter. Whether that is a car, a mobility scooter or walking aids, it is a good idea to get them checked out. This may involve lubricating moving parts, checking tyre pressures and ensuring brakes are up to the job. Some people even choose to switch their walking sticks over for Nordic walking poles or something similar with a wider ground surface area. You can also buy ‘ice tips’ to customise your existing walking aid
  4. Drink plenty of hot drinks. Tea, coffee, hot chocolate or whichever is your drink of choice can help you stay warm from the inside, warming your core quickly. It can also help keep your fingers and hands warm whilst you cradle your favourite mug
  5. Keeping your hands and feet warm is really important. Some people with MS have sensory issues or also have a condition called Raynaud's phenomenon, in which the extremities (particularly the fingers and toes) are affected by the cold. Fingers and toes can become bluish looking and be very painful. It is a good idea to plan ahead and get some good thermal socks and gloves and consider keeping your warm socks on even whilst at home. You can also purchase hand warmers of various kinds from outdoor stores
  6. Consider increasing your uptake of vitamin D and make the most of what little sunshine there is. Try to go outside as close to midday as you can and expose as much of your skin as is possible (given the cold!) to the sun. Not only will this help your vitamin D levels but being outside and enjoying the autumnal colours or crisp Jack Frost touched plants will likely be good for your mental health too. If you feel you need to increase your Vitamin D supplements during the winter it is worth reading our Choices leaflet on the subject and speaking to your MS team
  7. Plan for adverse weather. If you have a care package you can speak with your care manager to ensure you have an understanding of any kind of contingencies or emergency plans that are in place in case of adverse weather conditions. It is a good idea to contact your local Adult Social Care department to find out if there are any special plans in place for extreme weather in your area. If you have a family carer or have caring responsibilities yourself, it would be a good idea to get an updated ‘carers emergency plan’ (usually part of a carers assessment)
  8. If you rely on meal on wheels or home delivered meals it is a good idea to do some contingency planning for the possibility that a delivery will not get through. It is always a good idea to have some tins of soup or other non-perishable foods in the cupboards. If you have room in your freezer it is worth making sure there are a few easy meals stored away in there too
  9. Be mindful of colds and your health. If you feel you are becoming poorly, speak to your pharmacist or GP as early intervention is best for managing health. Remember that you are entitled to the flu vaccine from the NHS. You can get this at your GP practice or your local pharmacist
  10. The UK government have produced a leaflet called ‘Keep warm, keep well’ specifically aimed at older and disabled people which is full of useful information about the winter fuel payment, the cold weather payment, the Energy Company Obligation (ECO), the warm home discount scheme and other sources of financial help. The Energy Saving Trust has good advice on how to lower your bills and make your property more energy efficient. They can also advise on grants and schemes available around the UK. They have a helpline you can call on 0300 123 1234

If you want to chat about any aspects of living with multiple sclerosis, the MS-UK Helpline team are here to help. Just call us on 0800 783 0518, email us or use our live web chat service to get in touch.

Our Annual Review is out now...

Posted on: October 18 2018

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Read our Annual Review 2017

Hello,

I am delighted to say that our Annual Review 2017 is now published. This booklet is our way to thank our supporters and celebrate our success in a public way, and I hope you enjoy reading it.

Our vision is a world where anyone affected by multiple sclerosis (MS) can access the information and support they need to make their own decisions. Since 1993 we have led the way in promoting choice, tackling taboos and remaining independently funded. We are built on a foundation of listening and acting according to the needs of people affected by MS. I am thrilled to see that this is reflected in our work from last year. 

We are driven by our values, guiding principles that inform every aspect of our work. In 2017 we were able to bring these values to life, and our services supported thousands of people. Every service is shaped by people affected by MS. By listening to people, we are able to offer services that are truly community led.

Thank you to every single person who has shared their voice with MS-UK or supported us so on our journey so far.

Our work would not be possible without the support of so many people. 

Best wishes,

Amy

CEO, MS-UK

What to look for in a mattress if you live with multiple sclerosis

Posted on: June 11 2018

Mattress blog image.pngSleep is so important to both physical and mental wellbeing. It helps our bodies recharge and our minds settle. For eight hours at the end of each day we leave the hustle and bustle of the outside world behind heavy eyelids and transport ourselves to the blissful land of nod. But climbing into bed and falling asleep isn't always easy, particularly if the mattress is too lumpy, or springy, or harder than concrete.

So when we were recently asked about what to look for in a mattress from the perspective of someone living with multiple sclerosis (MS), we decided to explore...

'I’m looking for some advice for my mum who's recently diagnosed and struggling. I’m trying to find the best type of mattress. Any recommendations or pointers for what I need to be looking for?'

Sleep comfort will directly affect how we sleep. There are many products to consider to help keep your mum comfortable and help with any symptomatic issues she may be having during the night.

If heat is a trigger or an issue for symptoms then there are mattresses on the market that specifically have cooling and protective surfaces. You can also buy breathable ‘toppers/pads’ to put over an existing mattress that can aid with cooling which may help.

You may also want to think about the surface of the mattress itself. Softer mattresses, especially ones made of memory foam, may not be the best choice for someone who has restricted ability to move around in bed. These types of mattresses tend to shape to the body and dip under pressure, which could potentially be an issue when trying to get out of bed for some people.

Latex foam mattresses may be worth exploring. They tend to be naturally hypoallergenic and antibacterial by their very nature. Latex foam mattresses will ‘move with your movements’ and are less likely to cause the issues that memory foam may cause.

For some people with MS their priority will be looking at options to protect the mattress due to continence issues. In these instances a good quality waterproof mattress protector is suggested.

For those that spend a lot or all of their time in bed and may be at risk of pressure sores and could need an air circulating mattress or postural support it is suggested that an assessment of need is gained via the NHS to see what is best suited to each individual.

Living Made Easy is a good, independent and impartial resource for disability specific products. They have pressure relief mattresses, elevators, bed wedges waterproof covers and much more.

Depending on whether or not your mum has any physical impairments, or the need for specialist mattresses will very much effect the choices you will be making.

Disability Rights Handbook out now

Posted on: March 14 2018

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Ryan Jones

Hi everyone,

We just wanted to let you know about this important source of information that our MS-UK Helpline team regularly uses to support the multiple sclerosis (MS) community.

The Disability Rights Handbook is a guide to benefits and services for anyone with a disability, their families, carers and advisers. It contains a wealth of information relating to the benefits system, as well as social care services and help for carers.  This guide will be relevant to many people living with MS.

Clients who use the MS-UK Helpline have let us know how valuable the information provided by our advisors is and, since a lot of that information can be found in the Disability Rights Handbook, we wanted to share it with you. If you would like to buy your own copy, you can do so on the Disability Rights UK website store.

We wanted to let you know this was available to pre-order as last year’s handbook sold out in quite quickly!

As always, though, our MS advisors are available to listen to you, talk things through with you and keep giving you as much helpful information and support as possible.

Best wishes,

Ryan

Ryan Jones

MS Advisor

Heat and multiple sclerosis, what can you do?

Posted on: June 23 2017

blog2.pngMany people with MS are experiencing a temporary worsening of symptoms during this current heatwave. You might feel fatigued, or experience an increase in pain, or feel cognitive symptoms are worse. A change in body temperature can also give rise to Uhthoff’s Sign – causing blurred vision. See Visual Symptoms Choices leaflet.

Although uncomfortable, such symptoms are temporary and will resolve when the body is cooled down.

Air conditioning can be very nice but if that isn’t available then a fan in every room is a second best. Items such as Kool-Ties and Cooling Vests can be helpful. The Kool-Ties work for up to three days by cooling the whole body and particularly the blood flowing to the carotid arteries. Cooling Vests have special cooling crystals incorporated into the material and are soaked in cold water, holding the temperature for a substantial period of time.

Other strategies to help keep cool in hot weather include taking regular cold drinks, wrapping a damp towel around your neck, using ice in a tray of water in front of fan to create an air-conditioning effect.

For more detailed information, see our Choices leaflets on Fatigue and MS symptoms.

You can also contact our MS advisors on the MS-UK Helpline, either by phone in the UK 0800 783 0518, or worldwide using our Live Web Chat service. or emailing info@ms-uk.org

 

Would you like to chat online to a member of our Helpline team?

Posted on: March 21 2017

the-ms-uk-helpline-team-kim-ryan-and-laura.jpgWe have been using an online live chat system for some time now and it has shown to be popular. Certainly for those who may not feel in a position to pick up the telephone for whatever reason, and for those who would like a more instant response than email. It also means we have been able to chat to people abroad too, when they may have found it difficult to find support.

Our Digital Officer, John, has now developed a nice little function whereby a pop up appears on every page of our website to show people that the live chat facility is available. This has certainly increased the amount of web chats we have received which is great as it has meant we have reached out to more people affected by MS.

If we are engaged - either chatting to someone already, or perhaps on the telephone - then a message can be left via email and we will get back to you as soon as we can.

We look forward to hearing from you,

Laura, Kim and Ryan

The MS-UK Helpline team

Your voice counts...

Posted on: June 21 2016

the-ms-uk-helpline-team-kim-ryan-and-laura.jpgHi everyone,

We are refreshing our Choices leaflets for people affected by multiple sclerosis (MS) and we need your real life experience to help us shape them!

If you have been diagnosed with MS, then you can help us by taking a quick survey online today.

Thank you so much!

The MS-UK Helpline team

P.S. The survey closes on Monday 27 June at 4pm.

We are refreshing our Choices leaflets for people affected by multiple sclerosis (MS) and we need your real life experience to help us shape them! If you have been diagnosed with MS, then you can help us by taking a quick survey online today.

Thank you so much!

The MS-UK Helpline team

P.S. The survey closes on Monday 27 June at 4pm.

 
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