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 here.
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.
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.
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.
Thank you for reading my story. Ooop, got to go, there’s a squirrel in the garden! Bye!
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.
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.
If you would like to fundraise for MS-UK with or without your dog, then get in touch today on 01206 226500
Martin 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.
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.
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.
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.
Hello, I’m Molly, the new Fundraising Assistant. I am really excited to be part of the MS-UK team!
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.
Hi, I’m Sean. I became involved with fundraising for MS-UK a few years ago through family members already involved with the charity.
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.
In 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!
Every 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).
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!
After 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!
MSer 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.
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.
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.
The 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.
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.
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.