Skip to main content

The hidden treasures found inside a charity pot!

Posted on: October 18 2019

G Podgorski.jpgOne of our Community Champions, Gwynfa Podgorski, reveals how rare coins found in MS-UK collection pots can raise more funds than their face value might suggest. As a Community Champion, Gwynfa hands out MS-UK collection pots to local shops and collects the funds for our charity.

Who would have thought a 50p coin with Jemima Puddleduck on it could earn £9 for MS-UK? 

Having read somewhere about certain coins being worth more than their face value I decided it was time to check my change. Having been a Community Champion for a few months now, counting money out of the MS-UK pots I have in local stores has become second nature. Much to my surprise, I have found several commemorative 50p coins in there. Battle of Hastings, any Olympics ones, Benjamin Britten, Peter Rabbit, Paddington Bear, basically any 50p coin which celebrates events over the years are all potentially worth more than their face value. Checking possible value on eBay (most sell for £1-£2) I decided Jemima could be worth rather more than 50p. Indeed, she has a new home with a buyer in Wales and after paying fees to eBay, PayPal and Postage, MS-UK has an extra £9 instead of the 50p coin someone kindly put in the pot. When I find any foreign coins in a pot I take them to my local Scope Charity shop who collect them and sell them on when they have enough.

If any of you find similar and would like to try to sell them for additional funds for MS-UK I am happy to help with advice on how to or even doing the selling.

To get in touch with Gwynfa or become a Community Champion contact lucy@ms-uk.org.

Guest blog: ‘Counselling made me feel cared for’

Posted on: October 10 2019

Julie.jpgIt is World Mental Health Day and in this guest blog, Julie tells us why she took years to come to terms with her diagnosis of MS and how MS-UK Counselling has helped her…

‘To this day I struggle to think about the day I was given the news of my diagnosis. Unfortunately, it was dealt with dreadfully. I was on my own and not prepared at all. The consultant showed me my MRI scan and quite bluntly said the only thing she could think was that it was MS. I could barely breathe but knew I had to try to listen so as not to miss any information. She asked me what I was doing later that afternoon and I replied that I was due to go on holiday with my husband and daughter. She said: ‘Have a good time and try not to think about it too much.’ I couldn't believe what I was hearing, the sheer insensitivity. It took me years to accept my diagnosis and to learn to accept it.’

My diagnosis

‘I first noticed something was wrong around 2009 whilst on a charity walk. After around 40 minutes my right foot felt wobbly and slapped the ground. I didn't take much notice and for the next few years, nothing changed much until one day when I was meeting a friend in town. I parked a way out and by the time I got to the centre my right leg really ached and I couldn't control my foot. I made an appointment with my GP who couldn't find anything much but referred me for physiotherapy. Physio had no effect and when I described the symptoms of weakness, a tickling sensation and pins and needles I was referred for an MRI of my spine. This came back as normal but the consultant decided I should have further imaging of my head and neck and it was this scan that showed the lesions.’

Counselling

‘One day, my MS nurse pointed out that every year I bring up the bad experience I had when I was diagnosed, and maybe I should consider some counselling

‘I had no reservations about accepting help and found it a relief to talk to my counsellor. My first session was comforting and I felt listened to and cared for. I felt I mattered. 

‘The service has helped immensely. I have discovered I am actually stronger than I thought and have learned coping mechanisms for the times that are tricky. 

‘I would say to anybody struggling emotionally not to wait as I did and to seek help. It is available, and any good GP will help, or you can self-refer. The good thing about the MS-UK Counselling service is that the people have knowledge of the disease which makes a huge difference. 

‘I have also found exercise and meditation hugely beneficial in helping with anxiety.’

About MS-UK Counselling 

MS-UK Counselling is confidential and open to anyone living with multiple sclerosis. MS-UK counsellors are registered or accredited with the British Association for Counselling and Psychotherapy (BACP) with knowledge of MS and its impact on mental wellbeing. MS-UK is a BACP organisational member and our number is 275169.

Register online today or call us on 01206 226500 to find out more.

Guest blog: ‘Someone who is independent, who doesn’t know me but just wants to support and help …’

Posted on: October 10 2019

Adam.jpgAs part of our series of blogs today for World Mental Health day, Adam tells us about his first counselling session with MS-UK and how he felt supported to open up to someone who was completely removed from his experiences of living with multiple sclerosis…

‘I was first diagnosed with multiple sclerosis (MS) in March 2018 after one episode of symptoms. After I was told the news I was initially in a state of shock and just remember my wife bursting onto tears. I didn’t want to see or speak to anybody and I just couldn’t believe what was happening.

‘I have four children and all I could think of was them. I had a million questions in my head. How would I look after them? Would they end up looking after me?

‘The biggest feelings were ones of guilt and helplessness. I felt like the diagnosis meant my life was pretty much over and I would be a burden to those I am closest to. The feelings of helplessness were due to the lack of information and the unpredictability of the disease. Everything is a ‘maybe’ as each person is different so it’s a difficult diagnosis to understand and explain to others.

‘I found the information booklets produced by MS-UK and the MS Trust a great way of not only explaining the condition to friends and family but also for me to understand the condition and that the things I was feeling were normal.

Counselling

‘I saw a tweet from MS-UK which mentioned the counselling service and I thought to myself that it couldn’t hurt to try. The idea of counselling did have an appeal.

‘I feel lucky as I have a great support network but it’s hard sometimes when you do want to talk about MS but don’t want the guilt of burdening someone close to you. I did have reservations, mainly because it was a new experience and that unnatural feeling that comes from sharing things with a stranger. Fear of being judged came into it as well, although I quickly realised this was not something to worry about.

‘The first session left me feeling so positive. It was just so nice to have someone really listening. Someone who is independent, who doesn’t know me but just wants to support and help.

‘When we went through the initial checklist of things I may be struggling with, I did have a realisation that some of them were affecting me more than I thought. You do wonder how talking through things will actually help and this is perhaps the biggest reservation, but after just one session I absolutely understood how I could benefit from the service.

‘Counselling has helped me really think about my needs and gave me the opportunity to be reflective in my thoughts about how I interact with people, what I enjoy doing and how to feel positive about the future.

‘This service also helped me feel empowered to talk through some of the anxieties I was feeling living with MS. It really did feel like a journey and I do think about decisions and choices in a different and more positive manner.

‘I have definitely got better at recognising the things I’m proud of now, no matter how small. Using the MS-UK counselling service has made me realise that sometimes the simplest achievements can be proud moments to celebrate.’

About MS-UK Counselling 

MS-UK Counselling is confidential and open to anyone living with multiple sclerosis. MS-UK counsellors are registered or accredited with the British Association for Counselling and Psychotherapy (BACP) with knowledge of MS and its impact on mental wellbeing. MS-UK is a BACP organisational member and our number is 275169.

Register online today or call us on 01206 226500 to find out more.

Appointment number three of the MS-STAT2 trial

Posted on: September 30 2019

Cathy Howard 2_0.pngCathy Howard updates us on the next stage of the statins trial

I was up early again, which was just as well because parking was an absolute nightmare at the station! When we got to UCL Queens Square Institute of Neurology my appointment hadn’t been logged on their computer, so John and I had to wait for about an hour and a half to allow for my records to be released and my prescription to be authorised and filled at the pharmacy. We consoled ourselves with lunch and coffee at a local Italian restaurant.

Once the appointment resumed the lovely nurse Sarah looked after me again. She took the remainder of my original prescribed statin/placebo and replaced it with 2 new bottles and a six-month diary. She took blood and my blood pressure, and Dr Tom Williams noted some headaches and nausea I’d experienced during the first month. He also checked my lungs and heart. As long as these blood tests are ok, I can start to take two tablets per day increasing from one. I was able to collect a CD-Rom with my MRI scan on. So excited as it’s been a long time since I last had one done.

As long as my GP is happy, I can have my next lot of blood tests, at the end of November or the start of December at my local surgery. A few days afterwards I’ll get a phone call at home from one of the research team to ask me a few questions. I’ll let you know how it all goes.

 

Baseline testing day on the MS-STAT2 trial

Posted on: September 06 2019

Cathy Howard 2_0.pngMSer Cathy Howard updates us on the next stage of the statins trial

I was up with the lark again and even earlier than my last appointment! I got to UCL Queens Square Institute of Neurology almost an hour early, but I’d much rather be early than late.

A lovely nurse called Sarah took us through to the same area we were in last time and got me my second coffee of the day. She also gave me a Baseline worksheet with questions about how my MS currently affects me physically and mentally.

Dr Nevin John explained the day’s process, went through reams of paperwork with me and I signed five more informed consent forms for sub-studies. Don’t think of the trees!

Then the tests began. The Dr who administered those was very thorough and put me through a battery of sight, memory and manual dexterity tests, as well as a comprehensive neurological test. Records were taken after each part of each test.

I completed another walking test with a mobile phone with the MSteps app attached to my arm.

I had six lots of blood taken by another lovely nurse and a cannula inserted for contrast dye to be given part way through the lengthy MRI scan. I have some anxiety issues with MRIs so my GP kindly prescribed me diazepam as a sedative.

The last part of my day was 45 minutes of MRI scans. I estimate I had about 15 separate scans of varying durations. I was asked if I’d like some music whilst in the scanner, and I thought – well, I was an 80s teenager, so Madonna would be perfect. Although I couldn’t hear a lot of it whilst the bangs, clicks and dings were going on, when there were quieter periods, I was Vogueing (in my head) and being a strutting Material Girl! The technician who completed the scans will let me have a copy of the scan at my next appointment. Yay! It means I’ll be able to discuss it with my neurologist Dr Giles Elrington next time I see him. I haven’t had an MRI since my diagnosis, so I’m quite excited about that.

I was given my statin/placebo with a diary to keep updated. One tablet a night for a month. My next appointment is on 24 September. Bring it on!

Guest blog: Lydia from the MS Trust tells us about the new neurological toolkit

Posted on: August 29 2019

Image of doctors clipboard with penA new toolkit has been developed to help local health groups improve services for people living with progressive neurological conditions in England. The MS Trust was one of seven charities involved in developing the new guidance.

Lydia, communications officer at the MS Trust, explains more in this guest blog...

Healthcare services have been failing people with neurological conditions like multiple sclerosis (MS) for far too long. That’s a fact. The number of people living with neurological conditions in England is rising and will continue to increase. But, for a number of years now, neurology has not been a national priority for the NHS. Research shows that those living with progressive neurological conditions are experiencing delays in diagnosis and treatment, fragmented and uncoordinated services, limited availability of neuro-specialist rehab and reablement and a lack of psycho–social support. 

This inequality is simply not fair.

The NHS RightCare Toolkit for Progressive Neurological Conditions has been developed to help change that and ensure people living with brain and nerve conditions like MS, Parkinson’s and Motor Neurone Disease (MND) get the care and support they need and deserve.

Seven charities (MS Trust, MS Society, Parkinson’s UK, MND Association, Sue Ryder, MSA Trust and PSP Association) joined forces with NHS experts to produce the toolkit. The hope is that Clinical Commissioning Groups (CCGs)  will take full advantage of this unique opportunity; that they will use the practical, clear and innovative guidance the toolkit provides to tackle some of the big challenges people with these conditions face and ultimately improve healthcare services for this group, now and in the future.

If implemented in the right way, the numbers speak for themselves: up to 2,500 emergency admissions to hospital a year could be avoided for patients with these conditions as a result, with up to £10 million freed up to fund improved services.

So what does this mean for people with MS? The toolkit outlines four priorities that need addressing in MS care: improving the efficiency of disease modifying drug management, better use of data and technology to free up the valuable time of MS specialists, holistic support for people with advanced MS, and more MS specialists from different areas working together to provide joined-up care.

MS health professionals do an incredible job with the resources at their disposal and we know that many services are already delivering high quality care - the toolkit has real-life examples of best practice from across the country. But we want to help all areas reach the same high standard and make this best practice a reality for all. We will work closely with the other charities involved to support efforts to see the toolkit implemented effectively, with the shared aim of improving care for everyone living with a progressive neurological condition in England.

You can download the full NHS RightCare Progressive Neurological Conditions Toolkit from the NHS England website...

Visit the NHS England website

This blog is from the MS Trust...

This blog has kindly been written by the MS Trust. To find out more about them visit the MS Trust website or if you’re living with MS and would like to share your experiences of healthcare, please get in touch with the MS Trust at comms@mstrust.org.uk.

Fundraiser of the Month: 'I was so inspired'

Posted on: August 23 2019

Photo of Martin cycling at the eventIn this guest blog our August Fundraiser of the Month, Martin Crowe, tells us why he and his friend Gary Beck took on the capital at this year's Prudential RideLondon-Surrey 100...

Earlier this month, Gary Beck and I did the Prudential RideLondon-Surrey 100 event. My wife Diana is Head of Services for MS-UK and I went with her as a volunteer supporter at the Virgin Money London Marathon in April. I was so inspired by the experience that I wanted to do something myself. I didn't think I had a marathon in me but when I heard that I could support the charity with a 100 mile bike ride I signed up immediately. I work with Gary and when I told him I'd signed up he said he'd do it too!

Photo of Martin and GaryThe most interesting thing about all the training (and there was lots of training!) was that you get to see all sorts of things on a bike that you don't see from a car. I've nearly run over dozens of pheasants, seen stoats and weasels, a buzzard that nested at one of my stopping places, foxes and deer and I've even seen a snake for the first ever time in this country. I can also guarantee that potholes are worse on a bike than they are in a car!

Gary was responsible for a lot of the fundraising and he managed to twist the arms of a lot of people at his golf club. I have to say a big thank you to the Colne Valley Golf Club Swindle Members who raised over £250 between them. I also have to thank my employer, Gallagher, which has a charity commitment to double anything it's people raise. Thanks Gallagher! That's my main tip - a lot of companies will match any funds raised by their employees so it's always a good idea to ask. 

Perhaps the funniest thing to share is that I've broken my vow never to wear Lycra. I can't say I'll be rushing to buy any more Lycra gear but it did the job on the day.

I thoroughly enjoyed this event. I enjoy cycling but I've never done anything like 100 miles before. The only thing I'd really say is that if you fancy doing something like this but aren't sure if you can do it then have faith, you'll be surprised at what you can do.

Visit Martin's fundraising page to read more

Feeling inspired?

We have places in #TeamPurple for the Prudential RideLondon-Surrey 100 2020! A lasting legacy of the 2012 London Olympic and Paralympic Games, this event sees more than 25,000 cyclists take on 100 miles from Queen Elizabeth Olympic Park, through the city and onto Surrey's stunning country roads and the Surrey Hills before the brilliant finish on The Mall in central London. Could you be one of them? Every penny you raise will help MS-UK support even more people affected by multiple sclerosis (MS). 

Find out more about RideLondon

"I’m taking part in the MS-STAT2 trial, follow my journey"

Posted on: August 22 2019

Cathy Howard 2.pngHi, I’m Cathy Howard, I’m 51 and have secondary progressive multiple sclerosis (MS). I was originally diagnosed with relapsing remitting MS in 1998 at the age of 30 and I later took ill-health retirement from work in early 2015.

I use two sticks to walk short distances, or a wheelchair or scooter if I’m going out. I applied for the Simvastatin trial as I was conscious that apart from some fundraising for MS Society and MS-UK over the years, I’ve never really done a great deal for others with multiple sclerosis (MS).

The MS-STAT2 trial is a double-blind study, which means that I don’t know whether I’ll be taking Simvastatin or a placebo, and neither do the Drs who administer and regulate it. To be honest, although it would be a bonus to me if I took the drug and it worked, I’ll be happy just participating. I will be sharing my experience of participating in the trial through regular blog posts on the MS-UK blog, so watch this space!

Today is my screening day appointment (19 August 2019). I got up ridiculously early because my husband John was stressed about us getting the train with booked assistance for me in my wheelchair. Bleary-eyed we head out to the station. I was eager for my first coffee of the day.

The train was on time and we got to UCL Queen Square Institute of Neurology in London about 45 minutes early. Dr Tom Williams, MS Clinical Research Fellow, came to meet us and escorted us through the rabbit warren of corridors to the trial room. Here I had my second cup of coffee and I’m started to feel awake.

Tom introduced Dr Nevin John, MS Medical Clinical Research Fellow, who is also part of the study. Nevin advised me about the trial, what to expect and possible side effects of statins. He asked me questions, completed forms based on my replies, and requested for me initial consent forms. There is so much paperwork and record-keeping involved!

I then had a basic physical examination, including blood pressure and blood oxygen levels, and my heart and breathing listened too. My height and weight were checked and I had various vials of blood taken for testing.

I also agreed to take part in a brain oxygen study and mSteps smartphone analysis. I was wired up to the brain oxygen study machine and computer and baseline readings were taken. Then I had three separate minutes to say as many words as I can that start with a selected letter. Not as easy as you may think! From the problems I had, I expect I’ve got very little oxygen reaching my brain!

An app is being developed to accurately record walking distance and speed etc. I had a mobile phone with the app on it strapped to my arm and was asked to walk short distances. This also served for the walking part of the MS-STAT2 screening process.

All in all, it was a very interesting appointment. I was completely exhausted by the time I got home but felt like I’d actually done something productive and I’m smiling as I write this! This is it for now, but I’ll update you all on the next part of my journey very soon!

Guest blog: 9 anti-inflammatory foods

Posted on: August 20 2019

Photo of Sharon PeckMultiple sclerosis is an inflammatory condition. Here MSer and Nutrition Scientist Sharon Peck highlights just some foods that could help reduce inflammation...  

Inflammation is essential to our survival. It’s our first line of defence against the outside world. It attracts cells of the immune system to the site of danger to destroy pathogens and helps heal injury. As a short-lived response it performs excellently as protector and healer. 

In multiple sclerosis (MS) inflammation is ongoing (chronic), with the myelin covering being attached by neurons wrongly identified as pathogens. The immune system attacks pathogens with oxidation. The oxidative damage causes further inflammation.

An unhealthy gut microbiome can be a source of inflammation. Boston researchers found MSer’s microbiome linked to ongoing inflammation. Luckily the microbiome is easily changed with food choices that nourish the microbiome.

Foods described below can have anti-inflammatory effects, either directly helping to resolve inflammation/oxidative stress, or indirectly by feeding our microbiome so anti-inflammatory microbes crowd out pro-inflammatory ones. 

Champion foods (both direct and indirect effect)

1. Vegetables

Particularly rich dark, leafy greens contain polyphenols and antioxidants, which can directly reduce inflammation. Vegetable’s high fibre content feeds the microbiome. A small Italian trial found a high vegetable diet reduced inflammation, improved gut microbiome and helping to improve overall health.

2. Fruits

Especially deeply coloured berries, which are potent antioxidants that can reduce inflammation. They also provide food for the microbiome, helping to keep your gut healthy. Try and make sure you are getting your 5-a-day, and aim for 10 if you can, after the NHS recently reported that 10 portions of fruit and vegetables is even better for us.

Direct anti-inflammatory/antioxidant

3. Oily fish 

Mackerel, salmon and sardines are all sources of essential fatty acids (EFAs) omega-3s, which UK researcher found increased anti-inflammatory bacteria in the microbiome and may help directly resolve inflammation.

4. Nuts

These are a source of required omega-6 EFA, which can be inflammatory in excess. Walnuts have a balance of omega-6 and omega-3, and research has shown they promote anti-inflammatory microbes. Research found that walnut oil reduced inflammation in a mouse model of MS.

5. Seeds

Another great source of EFAs. Some seeds, such as flax and chia seeds have a high anti-inflammatory omega-3 content.

6. Extra-virgin olive oil 

Extra-virgin olive oil is a source of antioxidant vitamin E and anti-inflammatory polyphenols. A review of multiple trials indicated that this oil could improve inflammatory disease symptoms. 

7. Ginger

Ginger has well known anti-inflammatory properties. An Iranian researcher indicated it may reduce inflammation in mice with experimental autoimmune encephalomyelitis (EAE).

8. Turmeric

It’s been in the news a lot recently and is now well known for its anti-inflammatory properties, but it has poor absorption. Consume it with healthy fats and black pepper to improve the absorption.

Indirect effect via the microbiota

9. Legumes and wholegrains

Another good source of fibre which has been found to benefit gut microbiota.

Out of the above list seven constitute the Mediterranean diet. Interestingly, the Mediterranean diet is very similar to the high vegetable diet used in the Italian study mentioned in point one. It showed an anti-inflammatory effect in MSers and reduced disability. The anti-inflammatory Mediterranean diet is being looked at by a variety of experts and particularly for people with MS. 

About Sharon

Sharon was diagnosed with multiple sclerosis in 2007 and prompted a career change to nutrition with the goal of empowering people to take positive steps toward feeling better. Sharon aims to share her nutritional knowledge, the latest nutritional and lifestyle research and expertise from healthcare professionals. Visit Sharon’s website for more information about her and her latest articles.

Want to read more like this?

Subscribe to New Pathways magazine for just £19.99 a year to get all the latest MS news, research updates and real life stories right on your doormat. 

Discover New Pathways

Guest blog: Preparing for your first open water swim

Posted on: August 15 2019

Photo of Laura MayToday's guest blog is from Laura May, our Communications Manager, who is taking on the Swim Serpentine this Autumn with #TeamPurple. This is Laura's first ever open water swim, so here she shares some of her 'newbie swimmer' top tips...

Last year I went along to the Swim Serpentine to cheer on our amazing supporters as they took part - I was blown away. The festival atmosphere and the fantastic efforts of all the swimmers really inspired me. 

As a rule, I'm not one for sporting activities. Last time I did some fundraising for MS-UK I sat in a bath of baked beans - it didn't exactly need high levels of fitness! But that was some years ago and I felt it was time for a new challenge so I decided to take on the Swim Serpentine this year. As I work at MS-UK, I know that every penny makes a real difference to people affected by multiple sclerosis (MS). I also get to meet people affected by this condition in lots of different ways and I am always so in awe of people who live life to the full with MS. It feels great to give something back by fundraising, but also it feels great personally to take on something new. 

However, it's not all plain sailing when you take the plunge, so here are my top tips for new open water swimmers...

  • Accessorise, accessorise, accessorise. You need a swimming hat, ear plugs and goggles to get you started. I actually went and got some prescription goggles from my opticians which are excellent. If you struggle with the cold, swimming gloves and socks are a must. When you go for your first open water swim, remember to take flip flops too...the drive home for me with soggy trainers was not pleasant!
  • Don't just stick to the pool. It's really important to try swimming in the open water before the big event arrives. I found it so different swimming outside, with tides and wind and rain all round you. It's actually lovely being out in the open air, but more importantly it will prepare you for the big day when all sorts of nice creatures and plants will be touching you!
  • Photo of legsMake sure your wetsuit fits. I learnt this the hard way by purchasing a wet suit a size bigger that I needed. It meant I was really chaffed on the back of my legs when it bunched up - check out the photo to see just how bad it was!
  • Ask other people to encourage you. I found it really hard to get motivated to actually go out and swim. But I spoke with the MS-UK fundraising team who said 'you can do it' and who gave me a massive cheer the day after I swam my first one mile in open water. My partner keeps suggesting I go for a swim and it helps me motivate myself to leave the comfort of my sofa. My friends and family and colleagues all keep pushing me as the event draws ever closer and I feel excited to go out swimming because I know I'm raising so much for MS-UK
  • Listen to the experts. MS-UK have been brilliant at directing swimmers to local coaches, open water venues and top tips. At first I was reluctant to be told 'how to swim' but I have now learnt that all the advice is worth listening to and you can take what you need and leave what you don't

There are so many more tips that other swimmers could share, but here's my top five. For everyone taking on the Swim Serpentine this year, good luck and I will see you there.

Just keep swimming!

Laura 

Visit Laura's fundraising page to read her whole story

Pages