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MS-UK Blog

The relationship between diet and MS

Posted on: March 22 2021

A healthy and balanced diet is essential for everyone, and as March is National Nutrition Month, we’re sharing how diet can affect multiple sclerosis (MS).

Many people use their diet to complement other therapies, and there’s no ‘one size fits all’ approach to managing MS. Typically, inflammatory foods are known to be a trigger to the gut and result in a sometimes unhealthy gut microbiome, which can worsen the symptoms of MS. Whilst inflammation generally is the body’s barrier against infection, for people living with MS, it can be painful and ongoing as the myelin neurons are incorrectly recognised as pathogens, thus the inflammation continues and oxidation results in damaged cells.

However, your food choices can impact the levels the inflammation and can be a way to control the way in which your gut reacts. Fruit, vegetables, oily fish, and nuts and seeds are great direct anti-inflammatory foods. iStock-1186938002.jpg

Click here to find out the benefits of each diet 

Several diets have been specifically designed for people living with MS. There’s the Overcoming MS (OMS) diet, The Swank Diet, the Wahls Protocol, and the Best Bet Diet, to name the most notable options.

Read more about diet and supplements 

The OMS Diet is one of the most popular amongst MSers that are using diet to help manage their health, and it follows a largely plant-based diet, with the addition of fish. It is built from the foundations of the Swank Diet, which encourages a low consumption of saturated fats. Kellie Baron reveals how the OMS Diet helped her MS after she was diagnosed with MS in 2013.

At the time Kellie was working part-time due to fatigue and other MS-related symptoms. Several relapses eventually led to diagnosis, by which time she had just discovered OMS through a random Google search of the exact words ‘Overcoming Multiple Sclerosis’. She attended Professor Jelinek’s one-day conference in Brighton in 2013 where she learned all about the OMS Recovery Program, and the science behind it, and adopted the recommendations immediately.

“The diet was a huge change because I was eating absolute rubbish before that, lots of meat, dairy and saturated fat,” she said. “But it was like a switch went on in my mind. I don’t miss the old way of eating. I’m cooking a lot now which I never used to do before, and I’m eating amazing food.”

Since adopting the OMS way of life, and choosing to take the disease modifying drug Copaxone, Kellie has remained relapse free and seen improvement in her general health. Her Expanded Disability Status Scale (EDSS) score has dropped from 2.5 down to 1, with blurry vision in one eye her only remaining symptom.

“I’m back at work full-time now, have had promotions, and I’ve run a triathlon and cycled 100 miles,” she said. “The fatigue has gone, the numbness has gone, and I’ve had no more relapses. It has made such a huge difference to my life.”

There are also similar stories like Kellie’s from followers of The Best Bet Diet and Wahls Protocol, but one thing they all have in common is reduced fat and clean eating.

For more detailed information about these MS diets you can download our free Choices booklet surrounding the topic of diet and supplements. Always consulting your GP, neurologist and MS nurse before making any changes to any disease modifying drugs.

 

World Sleep Day 2021 – Tips to help you sleep

Posted on: March 19 2021

We all love a good night’s sleep but living with a long-term health condition can present obstacles when it comes to get a restful seven hours a night. Multiple sclerosis (MS) cwoman sleeping.jpgan bring on fatigue in some people, along with insomnia and other symptoms that may impact the quality of your sleep. Pain, bladder issues and spasticity are common causes of disrupted sleep for those living with MS and your GP or MS nurse will be able to help find ways to manage those particular symptoms. 

Around 85% of MSers reported to have sleeplessness, with 79% saying that this is a weekly occurrence for them. Poor sleep can worsen other symptoms of MS too, which is why we’ve got a few suggestions below to help bring some harmony to your bedtime routine and drift off into a peaceful slumber.

Aromatherapy aromatherapy diffuser.jpg

Choosing relaxing scents can change the atmosphere of your environment, and a diffuser is a great way to do this. There are a few essential oils that help with great sleep, including lavender, valerian, bergamot, chamomile and clary sage. You can create your own dreamtime blends and turn it on a little while before you go to bed. If a diffuser isn’t your thing, try a pillow spray for a simple solution.

Avoid screens directly before bed

It’s all too easy to scroll social media before bed these days, but it’s recommended that you put your phone or laptop down 30 minutes before bed. The blue light emitted from electronic devices can affect the amount of melatonin, the sleep hormone, that is produced. It’s time to pick up that book from your bedside table for some time to unwind!

Total darkness woman sleeping with eye mask.jpg

If you’re a light sleeper or often wake up in the night, you may find blackout blinds or curtains and an eye mask a worthwhile purchase. Being exposed to light sources makes you more likely to stay awake after waking during the night as it can affect your circadian rhythm and melatonin.

A comfortable bed

It goes without saying that a good mattress and comfortable set of pillows makes getting those z’s in much easier. Refresh them every so often so that your back and neck are well supported. Seasonal duvets also help if you regularly wake up hot or cold, and a 13.5 tog duvet is a good option to use all year round. If you’d like to win a new set of pillows, make sure you head over to our Instagram account, where we’re running a giveaway to win a plushy pair of pillows, courtesy of the Mattressman.

Weighted blankets

Praised by many for a whole host of reasons, a weighted blanket could become a life changing investment to better sleep. Weighted blankets should be 10 per cent of your body weight and have been reported by many to improve the quality of their sleep and how quickly they fall asleep. The results relating to MS will differ from each person, however it may benefit those with symptoms such as spasticity and restless leg syndrome.

Cannabidiol

Derived from hemp, cannabidiol (CBD) is non-psychoactive and known to help relax muscle pain and spasms. Available from high-street retailers, it is available as tinctures and topical varieties as a health supplement. You can find out more about cannabinoids and MS with our Choices booklet here.

Expert advice

If your MS is affecting your sleep daily, due to medication side effects or other symptoms, speak to your GP or MS nurse. They can advise the best course of action for you and help get your sleep back on track.

"Patsy that got us all through it, no matter what she was facing"

Posted on: March 17 2021

In July 2021, I am taking on The National 3 Peaks Challenge in aid of MS-UK.

These are the three highest peaks in England, Scotland and Wales. Considered one of Britain’s toughest outdoor challenges, the National 3 Peaks Challenge takes in the dizzy heights of Ben Nevis (1,344m), Scafell Pike (978m) and Snowdon (1,085m). Over the course of two days, we will trek around 26 miles and ascend to a total height of almost 3,000m! Connor Peebles FOTM.jpg

I continue to give myself these challenges as my sister Patsy was diagnosed with MS at an early age of just 14. This had a tremendous impact on her and also my family. Seeing my family crumble around me at the time of Patsy’s diagnosis was just heart breaking. It was Patsy that got us all through it, no matter what she was facing and the pain she was in, she smiled her way through it.

Patsy inspires me to push myself to the limits in all aspects of my life. She’s just purely amazing. I will continue to support the charities that helped Patsy throughout her MS Journey as without the brilliant work that they do, Patsy wouldn’t be where she is today and for that, I will always be very thankful. I wish we knew about MS-UK when Patsy first got diagnosed.

Since December 2020, I have raised over £2,200 for MS-UK and over £7,000 for different MS Charities. This year has been the toughest yet as I have had to fundraise through the pandemic. I was determined to reach my target so just had to think outside the box!

Most of my fundraising at this time has been done over social media and Zoom. I raised £700 through selling lucky numbers and football cards for £10 each. Half of the money went to the winner and the rest of the money donated to MS-UK

Raffle – I contacted friends/family/colleagues/anyone that I could possibly speak to and asked if anyone could donate a prize to his raffle. The items donated included unwanted gifts and presents, along with some very generous donations such as a running machine! The raffle was done online, with ticket donations being made to the fundraising page and pictures of the prizes being shared on his social media.

Online quizzes – This is a great way to raise a quick £50 or £60. This can be done via zoom one evening with some friends and family and will bump up your fundraising nicely. Patsy Peebles.jpg

Bingo – This is great to do with your colleagues, and again can be done online while you are still working remotely (speak to your workplace and see if they will help you to organise something with your colleagues!)

An Incentive to reach a target – I came up with a wacky idea to reach £1,500 with my fundraising. I promised to complete a run dressed in a dress, wig and makeup if his total reached £1,500 by a certain date. The sponsors came flooding in and the outfit is now being decided! (I will completing this run before MS Awareness week!)

Thank you so much to everyone that continues to support Patsy and my family. It’s very moving that even through the pandemic, donations have been made. 

I am absolutely honoured to be Patsy’s brother and I will continue to spend my life fighting for hers. 

If you would like to make a donation to my fundraising page I would be very grateful:

Connor's fundraising page 

 

Hi, I’m Klaus

Posted on: March 15 2021

Verity and her dog Klaus are part of #TeamPaws and are raising money for MS-UK with the Big Purple Dog Walk. Find out how you can get involved hereVerity and Cat.jpg

Hi, I'm Klaus. I’m a two-year-old Jack Russell. My mum, Verity adopted me at the end of December. She says I’m going to have a job in her hair studio, The Art House and make lots of new friends. My job will be to meet and greet, provide in-salon entertainment and snoot ‘boops’. Mum’s job is to make beautiful rainbow hair. I haven’t started my new job yet, because the man at Number 10 says we have to stay closed for a while to stop people getting sick. But we didn’t want to get bored, so mum has been teaching me some tricks and how to mind my paws and Qs.

Because of lockdown, I haven’t met many new people yet, but I have a few friends already. I have a friend called Dolly, we haven’t met in-person, but we FaceTime a lot. She’s a salon pup too, but she also has another job. Her job is to take care of her mum, who is called Verity like mine. Verity was diagnosed with multiple sclerosis (MS) in May last year, after over a year of problems and ‘owies’ that ended up with her going blind in one eye. Dolly came along when Verity started her treatment to help provide emotional support and a fun distraction, she’s a good girl.

I’ve got an aunty Cat too. She’s lovely and has rainbow hair and takes me on nice walks with mum. Her mum, Ann, is poorly with MS too. She’s had it for a number of years, uses a wheelchair and has carers that come to visit. Aunty Cat has spent most of her life helping Ann. It makes me sad that MS stops humans from running, jumping and playing - they’re my favourite things!

My mum helped me out when I needed a human, so I’d like to pay it forward and help some humans. Verity and Dolly.jpg

Aunty Cat told me about the Big Purple Dog Walk, where I get to do cool things to raise money for humans, like Verity and Ann. So, I shouted and did the ‘zoomies’ until mum said we could do it (which didn’t take long). We are trying to raise £500 for MS-UK by the end of March. 

I’m only a little pup, with little legs, so I can’t do a marathon, but I do like walking and I’m a good boy with my tricks. So, I’m doing two things, I’m doing a trick every day of March. That’s 31 tricks in 31 days. Mum is videoing me and putting them on her Facebook and Instagram @verityclarkehair. She said lots of people have written nice comments about me and donated money. Does this mean I’m famous now? 

When you read this, I’ll have started the second half of my challenge too. There’s a statue of a brown terrier in Battersea Park, about 63 miles from our house, called The Brown Dog Statue. If I had fingers, I’d look it up online, but mum says it’s in memory of dogs who were vivisected and that lots of people care about it. I’m a brown terrier too, so I’d like to go and see it and pay my respects. We aren’t allowed to leave Colchester at the moment, so I can’t go for real, but I’m going to pretend. My little legs can’t walk 63 miles all at once, so I’m going to walk three to four miles a day until I get there. Aunty Cat is going to come too!

My snazzy MS-UK bandana came in the post and I get so excited to put it on when mum gets it out of the cupboard. I’m having so much fun learning new tricks, and I’m super looking forward to starting my walking mission. I hope I can do Dolly, Verity, Ann and everyone at MS-UK proud. Anne and Ozzie.jpg

I’m halfway to my £500 goal already, but if you’d like to sponsor me and help me get all the way there, there’s a little website you can visit to donate and check out my progress, click the button below. 

See Klaus' fundraising progress 

Thank you for reading my story. Ooop, got to go, there’s a squirrel in the garden! Bye!

Ibi and Aria for the Big Purple Dog Walk

Posted on: March 12 2021

The Big Purple Dog Walk is our latest virtual fundraising event happening throughout March to raise money for MS-UK. Here, Ibi shares her story about how multiple sclerosis (MS) has impacted her life and why this is the fundraising event for them. 

When I first saw the Big Purple Dog Walk fundraising challenge, I really couldn’t believe how perfect it was for me! I have a dog, I have MS and purple is my favorite colour! I told my family about it and, with much excitement, we signed up our little Aria within minutes. Ibi and Aria.jpg

I was officially diagnosed with MS in 2009, a few months after the birth of my youngest son Daniel. In retrospect though, I started experiencing symptoms many years before, which were exacerbated when my eldest son Jonathan was born in 2005. Unfortunately, during the last 15 years I have deteriorated quite markedly and have had to adjust to the devastating impact MS has had on my physical and mental wellbeing. Sadly, I had to stop working nearly three years ago which is when we decided to finally get a dog. After researching which breeds didn’t need too much exercise, were intelligent and didn’t shed too much – we settled on a Norfolk Terrier and eventually welcomed Aria to our home. 

Aria has helped me adjust to my life at home and has brought so much love and joy into all our lives. The boys take her for her daily walk but, being teenagers, they complain incessantly. That’s when I had the brilliant idea (if I do say so myself) to challenge them with the task of taking her without complaining for the whole month! They are usually very good at helping out and have been registered young carers for the past five years, nonetheless, the Big Purple Dog Walk challenge has given them extra motivation, while raising money for MS-UK.       

So far, we have been blown away by the support we have received from family, friends and even total strangers. They boys ask me every morning “how much have we raised?” and are so determined and driven to carry out the Big Purple Dog Walk fundraising challenge. Aria also looks totally adorable in her MS-UK bandana and gets adoring looks whilst out and about.

Ibi and Aria's fundraising page

If you would like to fundraise for MS-UK with or without your dog, then get in touch today on 01206 226500

A jab well done

Posted on: March 12 2021

Martin.jpgMartin Baum had quite an eventful time when he went for his Covid-19 vaccination

Whenever talk of inoculation amongst my peer group of sexagenarians was mentioned – not as regularly as one would think, but often enough to make you think – the same questions would be asked – what vaccine did you have? And what happened after you had it?

Be it Pfizer or Oxford AstraZeneca, you take what you are given and try not to think of any possible side effects. My wife had the Pfizer jab which gave her a very achy and heavy arm for 24 hours. I got AstraZeneca. Despite warnings from the nurse administering the jab that I could experience a sore arm, fever, aches, pains and flu-like symptoms for up to three days, none of these, thankfully, applied to this MSer.

If this was an examination, then I aced it. I sailed through without fear of consequence from the AstraZeneca-filled syringe. I even got a ‘I have had my Covid vaccine’ sticker. However, what happened to me was not on the list of known side effects, in fact it wasn’t a side effect at all. In other words, what the nurse injects with the hand MS takes with the other, as I spectacularly took a fall trying to get out of my seat.

Muddled messages travelling from my brain to my legs are not an uncommon multiple sclerosis (MS) symptom for me. Myself and Lizzy, my wife/carer, are quite used to my legs failing to support my body weight. As she holds on to me in my struggle against gravity, my feet rhythmically flail like a freshly caught fish on a line. My knees buckle, I go into a controlled descent, excitement over. Easy.

It happens. Nothing to see here. We move on because we are in control. If we were any more in sync with each other then we would be on Britain’s Got Talent. But this time was different. We were in a hospital environment and the nurses were on me in a flash. Suddenly they were coming at us trying to stop a man in his 60s with a walking stick careering to the floor on their watch.

When this happens in public places, I go down not like a bag of wet cement, but calmly and casually, reassuring anyone gathering wanting to help not to panic. This happens all the time, but the nurses were not to know. How could they?

They were doing what nurses do, but because they rushed, bustling Lizzy aside in their hurry, their hasty reaction was my aftershock jab reaction. Although it would not make a dint on the Richter scale, the sudden activity shook me up for about an hour afterwards. Then it was over. Life returned to what it was before, albeit with a shot of vaccine in my system.

What happened to me after getting my jab was actually neither here nor there in the great scheme of things, inconsequential stacked up against the necessity to protect myself against Covid-19. If I could do it again I would in a heartbeat which, fortunately, I will do when I return for my second jab in the coming weeks.

#livelifenotms
#msshine

MS, me and Juke makes three

Posted on: March 12 2021

MS-UK's Big Purple Dog Walk fundraiser is in full swing, with thousands and pounds raised so far. One of our fundraisers Zoe, shares how Juke her seven-month-old crossbreed has changed her life and her relationship with multiple sclerosis (MS). 

Getting a dog has always been part of my life plan. Being diagnosed with MS was not. I received the diagnosis in 2018 and like everyone with MS, the journey has not been a smooth one. In the last two years I’ve walked 10km for a charity walk and I’ve been unable to get out of bed; I’ve experienced extreme joy and I have also suffered from deep depression. My MS experience has never felt stable, every morning I would wake up not knowing what my life would look like. Zoe Deal - Juke.jpg

Lockdown has not been kind on my mobility. I spent the first two months of lockdown shielding in my second floor flat and unsurprisingly, it was extremely difficult to motivate myself to do any exercise. I had a mat and did some stretching and pilates, but nothing that really got me moving. When I was finally given the go ahead to go outside for some exercise, I would experience extreme pain while walking. At times the pain was so intense I became scared of going out on my own in case I passed out from the pain or was simply unable to get home. So I stayed inside, or only went out with my partner or while on the phone with my mum. In October 2020, my partner and I moved into our new house which opened the door for the only missing piece from my life, a dog.

Our wonderful seven-month old crossbreed, Juke also had a tumultuous start in life. He is a rescue dog from Romania who was found in a bag with his littermates after being thrown in a river. He was taken in by some kind-hearted people and looked after until he was old enough to travel to the UK.

We bonded from the moment he was placed in my arms, it truly felt like we came to each other at the right place and time. He trusted me implicitly from the beginning and I have made it my mission to give him the best life possible. Dogs need to be walked. This is a basic requirement that needs to be met. So, we walk. We walk every day no matter the weather and no matter how I’m feeling. And I can do it because I’m doing it for him. We may do a six mile walk round a country estate, or we might do a 10-minute walk round my estate, but we always walk. Zoe Deal and Juke together.jpg

Juke and I are taking part in the Big Purple Dog Walk partly to raise money for this amazing charity, but also to see how much we can achieve together. We are loving finding new places to walk this month and can’t wait to see where the rest of the month takes us. 

I always knew that having a dog would change my life for the better, but I had no idea how much having Juke would enrich my life. He gives me the confidence to go out and walk around my new home, no matter how slowly we might have to go at times. He’s always happy to go out, which rubs off on me and instead of fearing the pain that might happen, I find myself looking forward to the joy that will happen.

When I wake up in the morning now, I still don’t know what my life looks like. My MS experience is still unpredictable and difficult, but as long as I have Juke in my life, I know everything will be okay.

Introducing Molly, our new Fundraising Assistant

Posted on: March 10 2021

Hello, I’m Molly, the new Fundraising Assistant. I am really excited to be part of the MS-UK team! Molly  .jpg

My role is to provide administrative support to the Fundraising team and support general fundraising activities. Also, to assist the fundraising manager with researching new initiatives and managing projects including our lottery and legacy campaigns.  

I have always loved the idea of working for a charity and working with like-minded people. My charity journey started when I worked for the Essex & Herts Air Ambulance, as a Fundraising Volunteer Administrator for just over a year. Since working for both charities I have found it to be really rewarding with a real sense of fulfilment. I love the variation of the role and working with community groups, individuals, and companies around the country. It is a privilege and great fun working for MS-UK, no day is ever the same. 

I am really looking forward to getting to know you all and hearing your stories.

Meet Sean, our new Community Champion

Posted on: March 10 2021

Hi, I’m Sean. I became involved with fundraising for MS-UK a few years ago through family members already involved with the charity.   sean swan new.jpg

I live in Colchester and work for a large insurance company. I wanted to join Community Champions and start distributing collection pots in the local area, as I know the charity has been severely affected by the global pandemic and I understand that every little bit helps. 

Over the last few years, I have raised almost £1,000 for MS-UK by participating in multiple events, including running the Virgin British 10K and the Colchester Half Marathon. I also previously completed the London Marathon with my sister, so I have always been keen to fundraise and support charities. I really enjoy running and the exercise does come in handy when you are obsessed with eating cheese as much as I am, but more importantly, it's great to see how all of the fundraising helps the charity help others.  

I look forward to future events and getting more involved with MS-UK. 

If you would like to become a Community Champion like Sean, then register here or contact Lucy to find out more on Lucy@MS-UK.org

Become a Community Champion

“Multiple sclerosis changed my life, but running has made me whole again”

Posted on: March 08 2021

sue.jpgIn celebration of International Women’s day, we look at MSer Sue Bennet’s amazing achievements since her diagnosis

My story of fundraising began in 2013, but before this I was diagnosed with multiple sclerosis (MS) in 1998. I had gone to my follow up with my neurologist expecting to hear my symptoms were nothing to worry about, but it turned out to be MS.

I was on my own. I think I walked home in shock! Three months later I was receiving intravenous steroids (that’s how it was then) for a relapse. Disease-modifying drugs were in their infancy, and there was a very strict criteria to be able to have them.

A pick me up

Fast forward six years and bilateral optic neuritis meant I couldn’t work for three months. This was a new low point. But then by 2012 I discovered running, first with parkrun and then with my running buddy. A half marathon led to me wanting to do a whole marathon to prove to myself that I could do it. So, Edinburgh marathon it was – blooming tough, but I made it!

asue garden.jpgEvery year I watched the London Marathon on TV. I was fired up, and a challenge was born. I and my running buddy were to raise £4,000 for MS-UK for our treasured places. We decided to make it a real challenge – three marathons in three weeks! Paris, Manchester, and finally, London. We held a large quiz evening, with ourselves providing silver service! We did sponsored night runs for Halloween and Christmas and the favourite a ‘naked male runners calendar’, (all models were friends of ours). It was very popular and raised a lot of money.

Since then I have raised at least £2,000 for every subsequent London Marathon place (this year will now be my 7th, with my quizzes, night runs and raffles).

My achievements 

MS changed my life, but running has made me whole again, I truly believe it has helped me to be what I am today. I am now nearly 61, I have completed more than 20 marathons, three ultramarathons (and, in the last one, winning my age category!). My challenge for 2020, my 60th year, was to run every day, but Covid nearly scuppered that, as my work advised me to stay at home (I’m a nurse practitioner in a general practice). This was scary… but I found if I ran 40 laps of my garden it was a mile, so I could still RUN!

aaaDavid Hartley one of our runners and deserves the credit.jpgAfter a number of weeks I was back at work, and I am still running every day. I helped set up a local running group back in 2014 and have helped keep people going through this traumatic year. We have won some awards for this along the way – these wonderful people continue to inspire me with their stories and their running.

However, the caveat to all this is that I do realise I am very lucky. MS changed my life – transformed it. Without it I wouldn’t be where I am today. But for many the change is cruel and not so positive. Keeping physically active is in itself challenging, but with support and inspiration, just maybe there is a challenge that is achievable. The sense of pride in yourself is unmeasurable.

MS-UK lit the touch paper for me with my first Virgin Money London Marathon place – who knows where that rocket will lead to!

Mums Like Us for International Women's Day

Posted on: March 05 2021

Sally Darby, founder of support group Mums Like UsMSer Sally Darby set up an online network for disabled mothers in 2017. Here she shares her journey and explains why the conversation around disabled parenting needs to change.

I was diagnosed with multiple sclerosis (MS) in 2010 but my symptoms started in 2008. It began with optic neuritis which has left me severely and permanently visually impaired. At the time, I was told I might have a brain tumour. I was so relieved to discover that wasn’t the case. I was diagnosed after a second relapse involving numbness and tingling in my legs, as well as bladder dysfunction. Once the process started, things moved fast. I had an MRI and a lumbar puncture and was given the diagnosis within a couple of weeks. 

Of course I was shaken. It’s a huge thing to take on board. I was getting married in a few months and I became fixated on getting through that day whilst fully mobile. I’m glad I walked down the aisle and danced the night away as that would certainly not be my reality now! I am very well supported by wonderful friends and family. My now husband was my rock. But yes, it was a hard time. I once heard someone say MS is not a death sentence, but it is a life sentence. I took that on. 

Gradually, I started to accept the hand I had been dealt and live my life to the full with MS. Today, my condition weaves its way through every aspect of my life. It is integral to my being. I don’t believe I can separate myself from it, but I try my best to accommodate it, and work with it to provide the best outcomes for me and my family. 

Feeling isolated

In 2017, I was a young mum with two beautiful girls, both of whom had been born after my multiple sclerosis (MS) diagnosis, and I felt extremely lucky. But I had never met or even spoken to another disabled mum. I felt like the only one in the world! Being a new mum can be isolating and lonely for anyone, but when the additional challenges of disability are thrown in to the mix, it can feel pretty desperate. Since becoming pregnant with my eldest in 2012 I had felt unprepared, isolated and judged. I had done endless Google searches looking for a community of mums who shared my experiences but found nothing.

Despite this, I had a strong feeling that I was not the only one who was feeling like this, and that creating a community of mums who had disabilities would benefit others, too. When I set up the Mums Like Us Facebook group I quickly realised I was right. The group grew quickly and many mums expressed their relief at finding somewhere they could share their feelings and experiences with other mothers who really got it. So I decided to launch the website. 

We are simply bringing mums together in a safe, non-judgemental community where they can support and advise each other without fear of judgement. That was the goal at the start, and Mums Like Us does it every day. 

Disability and motherhood

There isn’t much conversation about motherhood and disability, and I think it’s largely because of representation. I follow lots of brilliant disabled mums on social media, such as @nina_tame on Instagram, who talks about her life as a disabled woman and mother with unapologetic pride, confidence and ability, whilst highlighting the ableism that still very much affects her. But women like her are only just starting to make their way in to the mothering mainstream.

It is also, in my opinion, because the world of parenting is not geared up for disabled people. High street brands don't cater for the needs of disabled parents. This results in people having to pay huge amounts of money, or get charitable support, to have very simply adapted items, such as accessible cots or push chairs.

Schools, libraries and play groups are often difficult, and sometimes impossible, for disabled people to access. As a result of all this, disabled mothers are all too often left out of the conversation around parenting. Often anti-natal and post-natal care providers in the UK are ill-equipped to support new mums with very specialist requirements. They frequently have to figure it all out themselves. This is an added challenge at an already overwhelming time. Sally and her two daughters

Mum shaming

As I have become more confident, through my work with Mums Like Us, I have thrown off the self-judgement (mostly!) so I have stopped worrying about what others may or may not think of my parenting. I am bringing up my girls in the best way I can. I am doing my best, as we all are, and although my parenting has to be different because of my disability, it doesn't have to be inferior. Once you have this confidence it’s easier to block out any shaming. 

Mums to be

If you have a disability, and are thinking of having a child, join Mums Like Us! On our Facebook group you can get advice from mums who have the same condition as you. Speaking to others and hearing their stories is incredibly empowering and insightful. They can also offer you invaluable practical advice.

I spoke at length to my MS nurses and neurologist before I decided to try and get pregnant. I would advise others to speak with their medical professionals. It will help them to be prepared for what is to come through the pregnancy the challenges they may face with a new baby. Above all, though, I would say no disabled woman is alone – you can do it and you will be amazing! It takes planning, and forethought, and adapting, but it is totally doable. Not only that, it’s empowering, and it gives you a reason to be grateful for and proud of your body and it’s incredible achievements – however much you feel it may have let you down in the past. 

My vision for progress

I would like to see equipment for disabled mums sold in major high-street retailers. I would like to see them in parenting magazines and on websites. I would like mums like me to feel seen, respected and above all I would like them to feel they are not judged for parenting in their own unique and special way. This is part of a much wider societal shift that is needed, a shift that stops seeing ‘disabled’ as an insult and sees it as a neutral term. We need to change society and its attitudes so disabled parents can be CEOs of those high street brands, putting our needs front and centre. We have a long way to go, but we are moving in the right direction! 

Visit www.mumslikeus.org to connect to other disabled parents and to find product lists which may be useful to new disabled mothers.

 

Join our VIP panel to help shape MS-UK services

Posted on: March 03 2021

iStock-1264382760.jpgThe Virtual Insight Panel (VIP) was launched back in 2016 to enable us to be community-led, which is one of MS-UK’s core values. We currently have 37 members from within the multiple sclerosis (MS) community including those living with MS, carers, family members and professionals.

Our VIP are there to help inform the work we do and since the panel was created they have contributed to many projects from reviewing our Choices booklets to helping us decide that launching a counselling service in 2017 was the right thing to do. It clearly was as since then we have provided counselling to hundreds of people with MS and made a difference to their lives.

So far this year we have already asked the panel about helping us out with our staff development days, creating a strap line for our logo, providing research about podcasts and helping us choose the best design for our new leaflet for the MS-UK Counselling service.

We would like to recruit new members to join our other amazing VIP members. If you have would like to get involved then please go to www.ms-uk.org/VIP and complete the application form.

If you can spare a few minutes each week or month to get involved then we would love to hear from you. Traditionally projects have been sent via email but this year we are looking to host some online focus groups on certain projects so we can see each other and have more of a discussion. This will also provide us and you an opportunity to meet others from the MS community

It is so important that we listen to the voices of those within the MS community to inform the work we do to make sure we get it right! If you would like further information please either go to www.ms-uk.org/VIP, call Diana Crowe, Head of Services on 01206 226500 or email VIP@ms-uk.org. We look forward to hearing from you.

Could your back do with a hug?

Posted on: March 03 2021

Declan McLaughlin explains why BackHug picked MS-UK as their charity partner, and how their product is like having your own physiotherapist  

Our relationship with the MS community goes back to 2013, when MS-UK’s New Pathways magazine editor at the time Judy Graham got in touch with our founder Chongsu Lee, then a practising physiotherapist. Judy discovered Chongsu’s work with people living with MS in a Sunday Times article in which Alison Peebles, a Scottish actress with primary progressive MS who starred in Taggart and River City, shared how her MS symptoms benefited from Chongsu’s treatment. New Pathways’ October 2013 edition featured Chongsu’s physiotherapy work with MS patients.

We know many people with multiple sclerosis (MS) appreciate MS-UK’s support, particularly New Pathways magazine’s open-minded approach to tackling the condition. Every MS patient is unique and, by featuring a wide variety of treatment methods, New Pathways allows each individual reader to make an informed choice about what’s right for them.

Chongsu’s manual physiotherapy focused on releasing tension from the centre of the back. Using his engineering skills, he then went on to create a robotic device which replicated that manual technique.

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Around 40 units of this first version were released in 2017, just before Christmas. Since then, Chongsu and his team continued to gather feedback from users and innovate the product. The second version is about to be delivered to a select few in Edinburgh.

To coincide with this BackHug product launch, the team were eager to donate some of their revenue to MS-UK, in homage to our roots.

For every BackHug subscription, £50 will be donated to MS-UK over the next 12 months. 

What is BackHug?

BackHug is a smart back care device with 28 robotic fingers that you can operate on your smartphone via Bluetooth with our App. It is designed to release tension in the centre of your back and shoulder blades.

When you lie down on your back on the device, the robotic fingers rise and accommodate your back curvature, offering you personalised treatment. The leg rest rises automatically to flatten your back and relax your body.

You can use the App to change strength levels, treatment area and flow. We also plan a 1-1 chatbot consultation, offering individually tailored treatment programmes on the device based on your specific needs and software to monitor your back tension.

*BackHug is classed as an electrical appliance, not as a medical device. It does not claim any medical benefits for any medical conditions.

Visit mybackhug.com

Masitinib and multiple sclerosis

Posted on: March 02 2021

AAAAAAian.jpgIs a new drug on the horizon to treat non-active secondary progressive multiple sclerosis in 2021? Ian Cook reports

Although the cause of multiple sclerosis (MS) is still a mystery, there is general agreement that the disease and its progression involve a combination of two processes, neurodegeneration and autoimmunity.

Several types of immune cells, notably T and B cells, have traditionally been thought to play a central role in MS autoimmunity and neurodegeneration. However, there are many other types of immune cells in the body. Strangely, there has been until recently little interest in looking at the involvement of some of these other immune cells, in particular mast cells.

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Mast cells

Mast cells are immune cells which cause sudden and severe inflammatory responses such as allergic reactions. When stimulated by a substance that causes an allergy, mast cells release a mixture of compounds into the surrounding tissues in a process called de-granulation. This causes sudden and sometimes potentially life-threatening reactions, something known as anaphylaxis or anaphylactic shock.

At the turn of the 20th century, it was found that mast cells accumulate at the edge of MS plaques. A century later, in 2001, researchers found the presence of mast cells and an increased concentration of mast cell constituents in MS plaques themselves. More recently, evidence has been found that mast cells play a crucial role in the inflammatory process and subsequent demyelination seen in MS. Evidence has also been found that several mast cell constituents are capable of causing demyelination and degradation of myelin proteins, with breakdown products stimulating further mast cell degranulation and contributing to activation of myelin basic protein (MBP)-reactive white blood cells.

Degranulation of mast cells next to myelin serves as a focus for inflammatory demyelination, leading to the damage of myelin sheaths by the action of enzymes as well as the discharge of vasoamines – substances which cause blood vessels to weaken or become leaky, and help circulating blood cells move across the blood brain barrier. It is also believed mast cells interact with other cells of the central nervous system, such as microglia, worsening neuroinflammation, which causes further neurodegeneration.

Treatment target

If all this is correct then it would mean that mast cells and microglia cells should be targets for MS drug treatments. For some time it has been known that inhibitors of mast cells, like anti-histamine drugs, can effectively slow the progression and severity of an animal model of MS called experimental allergic encephalomyelitis (EAE). These drugs limit the extent of mast cell degranulation, so mast cell research in MS is long overdue.

Now an MS drug which targets mast cells called masitinib is in trials. Masitinib is an experimental drug targeted at secondary (SPMS) and primary progressive MS (PPMS). It is taken as a tablet, twice daily, and it blocks biochemical processes involved in inflammation and immune responses, targeting both mast cells and microglia. In clinical trials it has produced some impressive results.

Last year, a phase 2b/3 clinical trial reported masitinib’s safety and effectiveness in 656 adults with primary or non-active secondary progressive MS. Participants were randomly assigned to receive either one of two doses of masitinib or a placebo (dummy drug), twice a day, for 96 weeks. The researchers also analysed the risk of disability progression and of reaching an expanded disability status scale (EDSS) score of 7.0 – reflecting a level of disability severe enough that you need to use a wheelchair.

The results showed the patients treated with the low-dose masitinib had significantly slower disability progression than those in the placebo group, irrespective of their type of progressive MS. Those receiving masitinib’s low dose were 39 per cent more likely to have either reduced disability or fewer disability-worsening events than those given a placebo. These masitinib-treated patients also showed a significantly lower risk of confirmed (three-month) disability progression by 37 per cent over 96 weeks. The patients who received masitinib also had a 98 per cent lower risk of reaching an EDSS of 7.0, compared with those in the placebo group.

When could it happen?

Given that masitinib has been extensively researched and found to be effective, one is bound to ask when will masitinib become available? Here the situation is slightly unclear. At some point, an application will be made to the licencing authorities such as the European Medicines Agency (EMA) in Europe, the Food and Drugs Administration (FDA) in the US and of course the National Institute for Health and Care Excellence (NICE) in the UK. Will these authorities be satisfied that the phase 2b/3 trial is enough proof? Here there is some suspicion that a further ‘confirmatory trial’ will be sought. As one neurologist put it, “For Europe, a second phase 3 would be helpful.’ Another neurologist added, ‘We need a money grant to do this study. I predict it will cost in the order of £4million to do.’ As someone who has SPMS without relapses I am tempted to say I hope that masitinib gets approval as soon as possible. Those of us, like me, with progressive MS, do not have time to wait.

Ian Cook reports regularly in our MS magazine, New Pathways. Why not subscribe to get these kind of articles directly to your door? Alternatively, you can receive your copy on an audio CD. Find out more

“Walking will help me regain my fitness and raise money for MS-UK”

Posted on: February 23 2021

Fowler and Mary for blog.jpgMeet Mary Harvey and her 16-year-old dog Fowler, our fundraisers of the month!

As I write, we’re several weeks into the third lockdown. Many are making tentative holiday plans for later in the year. Not me. I’m planning 31 walks to enjoy in my local area as I take on The Big Purple Dog Walk with Fowler, my 16-year-old Jack Russell. I’m hoping Dotty, my twelve-year old greyhound will join us for part of the way, but she gets very tired these days.

When I saw The Big Purple Dog Walk advertised on social media, I knew straight away I wanted to get involved. Being diagnosed with multiple sclerosis (MS) five years ago, having suffered a range of symptoms for 13 years, charities like MS-UK have become an important means of support for people like me.

My MS is relatively mild, but having a severe relapse last autumn has left me feeling anything but match fit for this challenge, as I’ve yet to regain my pre-relapse strength. But I’m confident that with Fowler by my side, a gentle two-mile walk each day will not only help me regain my fitness, but also help raise funds to support the invaluable work of MS-UK.

Old dog, new tricks

Fowler is a little old man, who at 16 is virtually blind. However, his powerful sense of smell enables him to enjoy the world around him, and he loves getting out and about! I know that our two miles each day will be a leisurely stroll as we will not only stop at each and every lamppost, but will also take the time to investigate the range of fascinating smells which only Fowler can enjoy. On days where fatigue strikes hard, I’m planning two shorter walks, punctuated with rest.

Dotty - Mary Fowler - for blog resized.jpgAlthough Dotty is four years younger than Fowler, as an ex-racing greyhound she prefers shorter walks and lots of snoozes. I hope that she will be joining us, along with my husband Stuart, for part of our route each day. I’m sure that the promise of a treat at the end of her stroll will be welcomed.

Inspiring coastline

We’re lucky as we live in a beautiful part of Kent, with lots of great walks on our doorstep including along the Thanet coastline much loved by Turner and Dickens. I’m hoping that restrictions will be lifted enough in time for my friend Sue and her dog Lara to join us for a walk in the woods or to the historic towers at Reculver – something I’ve really missed during the pandemic.

I’ve been overwhelmed by the generosity of friends who have sponsored me, and I’m still days away from starting the challenge. Looking at my JustGiving page (https://www.justgiving.com/fundraising/mary-harvey2) I’ve been rather surprised to find that I’ve been sponsored by both Jean Claude Van Damme and Father Ted’s nemesis Father Dick Byrne! Whoever they are, I am very grateful… I’m just waiting for Spiderman and Alan Partridge to join them!

Good luck to everyone taking part in The Big Purple Dog Walk, I hope the weather is perfect for us all.

Want to take part in The Big Purple Dog Walk? Find out about joining #TeamPaws today by clicking the button below, or email Lucy@ms-uk.org – we’d love to welcome you!

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