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MS Mind Set

Posted on: July 08 2019

DAWN Langdon.pngProfessor Dawn Langdon asks for your help to tackle MS cognition

Many people with multiple sclerosis (MS) experience cognitive difficulties; poor concentration, trouble remembering, some call it “cog fog”. We know quite a bit about how these difficulties play out on formal tests that psychologists use. But we are less good at understanding the experience of people with MS with cognitive difficulties.

There are a number of questionnaires that report cognitive difficulties that have been designed for people with MS, and others which have been suggested that might be useful for people with MS. The point is that it will probably never be possible for every person with MS to be offered a cognitive assessment. Some of us are working towards making this happen (researchoutreach.org/articles/bicams-cognition-multiple-sclerosis). But we have to be realistic about the current situation.

We are trying to find a questionnaire that a person with MS could fill in, which could tell any health professional something useful about that person’s experience of their cognition. This could help the nurse or doctor present health information in a helpful way. It could flag up cognitive difficulties to health professionals and trigger them to monitor the additional risks that cognitive difficulties bring (poor disease management, including medication adherence; increased risk of falls and driving accidents; decreased involvement in life generally, including employment difficulties). I don’t want to sound too gloomy here. But if we are to make progress we have to have information. This is our ammunition in the fight for better services.

Take the survey

If you would like to help, are a person with MS and can spare 30 minutes, please fill in our online survey.

Also please pass this on to anyone else that you think might be interested.

This study is the MSc Clinical Psychology thesis project for two students at Royal Holloway, University of London, where I work. Their names are Tabby Mahoney and Nathalia Bosoko.

If you would like more information about cognition and MS, you could visit the MS Trust’s website www.stayingsmart.org.uk.

You could also look at the books by Jeffrey Gingold, who is an expert MS patient advocate:

  • “Facing the Cognitive Challenges of MS”
  • “Mental Sharpening Stones: manage the cognitive challenges of MS”

These are available on Amazon and some of the profits go to MS charities.

Jeffrey has also recently done a Webinar, “Facing and Manging the Cognitive Challenges of MS”, which you can watch on YouTube.

How to get involved

If you have any questions about the survey or would like to help us with our work on cognition in MS, please get in touch (d.langdon@rhul.ac.uk). I have to ask for your understanding, because this is a busy few weeks in the university, and it might take me a week to get back to you.

Getting to know the national therapy centres...

Posted on: July 08 2019

Hello,

On Friday morning I set off to the University of Warwick to attend the annual MS National Therapy Centre Conference.

MS National Therapy Centres (MSNTC) is a charity which represents individual therapy centres across England, Scotland, Wales, Ireland, the Channel Islands and Gibraltar. These centres provide treatments, therapies, help and support to some 15,000 peop

Photo of MS charity CEOs at the conference
Nick from MS Society, Amy from MS-UK, Frank from MSNTC and David from MS Trust

le living with multiple sclerosis (MS) every week.

The annual conference and AGM is a chance for therapy centres to come together, share best practice and learn from each other. The conference, which was hosted by Frank Sudlow, Chair of the charity, ran over two days and included workshops, speakers and lots of updates about the world of MS.

I was particularly keen to hear Dr Dawn Langdon speak about cognition and MS and I wasn’t disappointed. Dr Langdon is Professor of Neuropsychology at Royal Holloway University of London. Her talk included an update on what research is being carried out to discover the impact of cognition difficulties for people living with MS as well as some useful insights about how people can improve their cognition by stretching their brains. It gave me a lot of food for thought!

The conference was also a chance for me to meet up with other CEOs from the national charities… David from the MS Trust and Nick from the MS Society. It was great to be able to talk to them about their work and how they are supporting people affected by MS as well as updating them on what MS-UK is doing. I hope that we can work together in the future to reach even more people and let them know we are all here to help in any way we can.

I wanted to say a big thank you to the MS National Therapy Centres for inviting us – see you next year!

Best wishes,

Amy

Amy Woolf, CEO

We would like your thoughts on loneliness and isolation...

Posted on: May 09 2019

Hello,Photo of Diana from MS-UK

I wanted to invite you to complete our survey which launched today about loneliness and isolation.

Last year we consulted with the MS community to inform the development of our new strategy. The most talked about gap for people affected by multiple sclerosis (MS) across the UK was appropriate support to tackle loneliness and isolation. We were told that there was simply not enough support to overcome the barriers contributing toward their isolation and not enough available to help them feel a part of something, connected to the world and less lonely.

We are now beginning to look at this area and we would like to understand this issue a bit more. The voices of people affected by multiple sclerosis inform all our work and this insight is incredibly valuable as it brings us perspectives that no one else can give. I hope you will take five minutes to complete this short survey and help us stay on course to provide people affected by MS not only with what they want from us, but crucially, how they want it. 

Take the survey online today

The topics of loneliness and isolation can be difficult to deal with at times, so if you would like any support at all please get in touch with our helpline. You can email the helpline, call us on 0800 783 0518 or connect with us online.

Thank you so much for your contribution, 

Best wishes,

Diana

Head of Services

Guest blog: Gogglebox’s Scott talks trains, tests and tablets...

Posted on: April 15 2019

In this guest blog Scott McCormick talks about his journey for blood tests in London, and how we really wishes he’d stopped at a chemist...Photo of Scott on way home after blood test on the train

Another instalment as I am taken by the train to the hallowed turf that is Hammersmith Hospital. This began with an early start at 4.45am. I know, a clock should only see this once a day. Teeth were brushed, the shower was jumped in, the beard was conditioned to an inch of its life, as it has gone really dry and coarse of late. It is feeling soft once again, albeit the purple has faded somewhat. I'll probably colour it again, but will definitely do so before the Chemo in May. Mostly so the dust pan gets to look good as it is swept up. 

I am now sat on the train thinking about the need to get home in good time later today, to take the prescribed pills and the magic jab juice. I have been doing all this much closer to lunch time anyway, so I have another 6 hours, give or take before it might affect my current time scales.

As far as the side effects go, I do consider myself lucky as I am taking anti sick pills, with no sickness noted. I must say I have only been taking twice a day as opposed to the instructed three times as advised. If I had the slightest inkling of feeling sick, then I would certainly be taking them as instructed. I was told about the joint aches and pains, at the beginning too. Again this gas been kind too, don't get me wrong, if I am out pottering about town, as I was yesterday treating myself to some new jeans and a shirt. (Pandas breed more frequently than I buy new clothes by the way). 

Today I am feeling aches in my left hip, my lower back and my left eye again. I assume the hip and back are from the drugs, as I was informed would be the case, by Naghma, the well informed Nurse at Hammersmith, but the left eye is blind anyway, so as long as is isn't too bad, I'll not worry about it. If it was my good right eye, then it would have my full attention and I'd pop in to hospital about it. 

Peterborough hospital eye clinic have always been pretty good at squeezing me in at short notice when needed. I try not to bother them unless I am getting genuinely worried about my right eye. Either way, all the aches and pains are dealt with using paracetamol.

Well, that was close. The silence on the train woke me up...phew! God knows where I might have ended up.

Once awake, and back on my stumbley clumsy feet, I took the usual walk to the Victoria line down stairs on the far side of Kings Cross station, then get off at Oxford Circus, to get on the Central line, looking for White City. From there I get on either the No 72, or the 272 bus towards Hammersmith Hospital. All was so very smooth today in my getting here. I will say though, that I really do need to get some paracetamol. My lower back doesn't half ache. Maybe a combination of the walking a fair bit over the last few days, and my being 4 days in to the stem cell generation, and the achy bones are to be expected.

From speaking to the Nursing staff here, I am now in the prime time for the aches to be really biting down. As the day is slowly moving on, yes, I can feel those aches. Do I sound like I am whinging yet? 

My bloods have been taken by Nurse Harry and they have been sent off, as I sit here wondering where I can get those paracetamol tablets, on my way home.
Ok, so I fell asleep as the bloods were sent off, and was told they'd be ready after lunch, and with the time at 10.30 now, off I trot to central London for some nice food and to kill some time. I do pass a chemist, but meh! It'll be reet. 

I eventually find myself in Selfridges food hall trying to eat ramen broth, but yes my right hand is still rubbish, so I am forced to eat the long stringy noodle goodness with chopsticks using my left hand. Actually I did well, and got away with it. Now back to Hammersmith, by now I am really flagging and my back is aching a lot more than I gave it credit for. It is, every now and then, a quiet groan-worthy amount of ache. I really regret not getting some paracetamol to scoff. 

Eventually I get back to Hammersmith, to be told, all my bloods are exactly where they should be, and to come back on Monday for the big stem cell removal. So I say my thank yous to everyone and make my way home, thinking I knew a sly pocket full of paracetamol wouldn't go a miss right now.

I am on the train thinking, if the aches were anything to worry about, I would have bought some. I do see the aching bones as the Body telling me it is busy generating squillions of big fat juicy stem cells for me. You see, it might be super rubbish at running and tying my shoe laces at the moment, but it can spit out stem cells to order when it needs to. Thank you Body, you ain't that bad after all. Thank you X.

Want more information about multiple sclerosis (MS) or HSCT?

Our helpline is here to listen and offer you all the information and support you need to make your own decisions. Call us free on 0800 783 0518, email info@ms-uk.org, or live web chat with us today.

 

University of Essex host the MS Olympix - and we were invited!

Posted on: April 05 2019

Hi everyone,Photo of the group at the Exergaming MS Olympix

Way back in 2016 MS-UK hosted a team from the School of Sport Rehabilitation and Exercise Sciences from the University of Essex here at our headquarters. 

The team were running a trial testing the use of an Xbox game specifically designed to support people living with multiple sclerosis (MS). Since then, they have been working hard to continue exploring possibilities in this area, and yesterday I had the privilege of being invited to the MS Olympix at the University of Essex.

The day included taking part in three different games that could be played standing up or sitting down. 

Sarah, who was first diagnosed with relapsing-remitting MS in 2007, attended the event...

‘After hearing about the day at a Josephs Court social coffee morning, it sounded really interesting. It is really good fun and some of the games – especially the ones that involve lifting my feet up – really helps my balance and coordination. It’s like playing the Wii at home but more fun!’

Sarah added, ‘the system comes from a background of rehabilitation, so I’d love to see it developed so people like me, living with MS, can use it at home’.

A big thank you to the team for inviting me to join in and we will keep everyone posted on future studies in exergaming!

Best wishes,

Laura

Laura May, Communications Manager

Your MS magazine of choice hot off the press!

Posted on: April 03 2019

Issue 114 front cover_1.jpgIssue 114 of New Pathways magazine is out now. In this jam-packed edition, we take a look at the recent changes that could affect those of you who take CBD oil, on page 12. We also ask ourselves “Am I having a relapse?” Whether you’re newly diagnosed or have been living with MS for years, there will come a time when you will ask yourself this question, to find out more turn to page 39.

Page 21 offers some helpful advice to those who have found themselves caring for a friend or loved one and don’t know where to start when it comes to finding support.

Louise Willis MS-UK Counsellor talks about managing fatigue and how spoon theory can help you manage and explain it to others on page 28.

MSer and feature writer Ian Cook investigates if magnets can help multiple sclerosis in Cook’s Report Revisited on page 19.

Mary Wilson, #5 Para-Badminton player in the world, reveals her hopes of representing Team GB in Tokyo 2020 Paralympics on page 24, and discover how music therapy could help your MS on page 23.

In addition, don’t forget to read all the latest news and real life stories from MSers living life to the full and why not give our tasty free recipe a try!

Enjoy reading!

About New Pathways

New Pathways magazine is a truly community led publication written by people with MS for people with MS. Each issue offers a variety of information on drugs, complementary therapies and symptom management, plus all the latest news and research and your amazing real life stories.

To subscribe, visit www.ms-uk.org/NewPathways, or call 0800 783 0518. Audio, plain text and digital versions of the magazine are available on request, simply call 01206 226500 and let us know your requirements.

5 ways smoking can impact multiple sclerosis

Posted on: March 13 2019

 

Stop smoking image (low res).pngToday is National Non-Smoking Day. Have you ever wondered how smoking can affect multiple sclerosis (MS)? Do you need help quitting? Read on...

 

1          Developing MS

Research has shown that the risk of developing MS is three times greater in male smokers compared to male non-smokers, and for women the risk is one and a half times greater. It is thought that smoking may damage the cells which line blood vessels and these damaged cells cause the vessels to leak, allowing the toxic chemicals in cigarette smoke to damage the brain.

 

2          Disability progression

In a study researchers found current or former smokers with relapsing remitting MS were three times more likely to develop secondary progressive MS, another phase of MS marked by a steady increase in MS symptoms and disability, compared to non- or past smokers. However, quitting smoking is something that has been shown to slow disability progression.

 

3          Passive smoking in childhood

A study revealed that 62% of the people diagnosed with MS had been exposed to parental smoking as children, compared to 45% of people diagnosed with MS, whose parents did not smoke. The research also pointed to a time-related correlation between the increase in risk of developing MS as an adult and the length of time a child had been exposed to passive smoking.

 

4          It can impact treatment

For people taking the disease modifying drug Tysabri (natalizumab), there is evidence that smoking increases the risk of the body developing neutralising antibodies to the therapy, causing the drug to have little or no therapeutic effect. A study revealed the risk for developing neutralising antibodies was over twice as high in smokers, compared to non-smokers.

 

5          Smoking doesn’t relieve stress

Although stress is a well-known MS trigger and it can exacerbate symptoms, smoking does not have therapeutic benefits. Research has shown that people who smoke actually have higher stress levels than those who don’t.

 

To find out more information about how smoking can impact multiple sclerosis, read or download our Choices booklet. 

Download the Smoking and MS Choices booklet

 

Need help quitting?

If you need help quitting smoking visit:

Research shout out: MS patient and carer views needed to inform NHS Wales

Posted on: March 08 2019

The All Wales Medicines Strategy Group (AWMSG) are seeking the views of multiple sclerosis (MS) patients and carers about new medicines it will consider recommending for use in NHS Wales, such as fingolimod (Gilenya), to treat MS in paediatric patients.

They would like you to share with them what it is like to live with MS or to care for someone who has it, and by contributing you will provide invaluable information about patient and carer needs. 

In addition, they will be asking clinical experts to give their views and the medical facts. All of this information combined will give a really good insight into the real effects MS has on patients and carers and help inform the drug approval process. You are not expected to have all the answers, but anything you can share will be incredibly helpful.

If you would like to share your experience download the questionnaire to complete and send it to the address below by the 18 March 2019:

All Wales Therapeutics & Toxicology Centre

Academic Centre

University Hospital Llandough

Penlan Road, Llandough

Vale of Glamorgan

CF64 2XX

Alternatively you can fill out the questionnaire here. All information shared with AWMSG will be kept confidential. 

AWMSG is meeting on 15 May 2019. At the meeting the group’s lay member will summarise all comments from patients and carers, and patient organisations. Only AWTTC and committee members will read the completed questionnaires.

If you would like more information, or help with completing the questionnaire, please call 02920 716900 or email AWTTC@wales.nhs.uk.

Top 5 tips to ensure you’re buying quality CBD products

Posted on: February 12 2019

MS-UK Blog Banners.png

 

In our latest guest blog Henry Vicenty, CEO of cannabidiol (CBD) oil producer Endoca, walks us through his top 5 tips to buying quality CBD products for managing your multiple sclerosis (MS).

 

1. Does the company have publically accessible, easy to understand lab reports?

Companies such as Endoca selling quality products will be proud of their lab reports, and will want their customers and the general public to have easy access to information regarding what is in their products. Do a quick search of the company website, or reach out to their customer services team who should be able to point you in the right direction. You want to see cannabinoids listed, as well as terpenes and evidence of absent chemicals and pesticides. 

2. Are the products organic and whole plant?

If the products are certified organic, you will see the logo on the website. Some companies will grow organically but may not have a certification, which isn’t ideal but even without certification, a quick glance over their lab reports should show the testing for, and subsequently negative levels of a variety of chemicals or toxins. 

Research and anecdotal reports support the claim that whole plant CBD extracts are more therapeutically potent than isolated CBD extracts alone. Make sure the lab reports of your products show terpene and other trace cannabinoid levels, otherwise you may be buying an isolated CBD product, which means the company is using only the CBD molecule in a carrier oil and no other beneficial plant molecules. 

3. Is the CBD amount of the product clearly labelled and verifiable?

As the industry is yet to be standardised, bottle sizes and CBD levels are all dependant on the company, so it’s hard to truly know if the product you’re using is good value for money. Endoca have created this CBD calculator, which helps you work out the monetary amount per milligram of CBD, which is important when trying to decide between products. 

4. Are there clear quality standards in place? 

Without clear quality standards there is no guarantee of safety in the product you are purchasing so make sure you ask the company for proof of the quality standards they have in place. Ask if the products are Good Manufacturing Practice (GMP) certified (when products are of pharmaceutical quality) and for any other certifications they hold that show their product is safe for consumption.

5. Is their website content clear and informative and do they have many online reviews?

As CBD is a new industry for many people, there is an abundance of misinformation online, including information that you can find on many CBD company websites. Unfortunately, it’s very easy to buy CBD in bulk and rebrand it as your own, so if the company you’re buying from provides limited information, or is not clear in giving you all the tools you need to make an informed decision or purchase, steer clear. Also, finding online sources of product reviews is vital to hearing about the experiences of others using the same products.

You can read more about cannabis in our Cannabis and MS Choices leaflet online.

Read the Cannabis and MS Choices Leaflet online

New Pathways sneak peak: mindfulness, being a carer with MS, mobility and more...

Posted on: October 20 2018

Front cover image of New PathwaysHello,

I am thrilled to share a sneak peak into the latest issue of New Pathways magazine, which is out now!

Our cover star this issue is MSer and HR Specialist Rebecca Armstrong, who discusses being your own boss and taking a step into self-employment on page 16. 

On page 24-25, wellness coach and Director of Work.Live.Thrive Zoe Flint discusses how relaxation can help boost your immune and central nervous systems. This feature all about mindfulness for MS shares Zoe's insights and her top 5 things to get your started. 

Also, MSer and Feature Writer Ian Cook reveals his first-hand experience of becoming a carer. Ian says, 'It may sound strange to say this but I believe being disabled is, in many ways, the perfect qualification to care for another disabled person.' Read the full article on page 12, and don't forget to check out his 'revisited' article on page 42 all about Shopmobility. 

Fats have once again been dominating the news of late, so we asked MSer and Nutritional Science Researcher Sharon Peck to reveal the truth and explain what we really need to know on page 19. We also take a look at the natural remedies lurking in the back of your kitchen cupboard that could help relieve MS symptoms on page 18.

If you would like to see something specific in New Pathways please email me and let me know your thoughts or feedback. 

Enjoy reading!

Sarah-Jane

Editor, New Pathways

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