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!
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.
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:
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
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.
Calling all canine companions! This March, MS-UK are inviting you to join #TeamPaws and take part in our pawsome Big Purple Dog Walk. Wherever you are in the country now is the pawfect time for you and your best four-legged friend to stay active and make every walk matter to help people affected by multiple sclerosis (MS).
During MS-UK’s loneliness and isolation research, we noticed that our furry friends play a big part in the MS Community, whether that be keeping their owner's company, being the reason someone may go outside each day, or simply by just being there! That is why MS-UK has launched an exclusive virtual event... just you and your dogs!
So whether your pooch is a pampered Poodle, a delicate Dachshund or a loving Labrador all hounds are welcome to put their paws to the test and help to raise pawsome funds for MS-UK. Everyone that takes part will receive an exclusive MS-UK dog bandana to wear with pride during the challenge. When you raise your target of £100, your dog will receive their very own rosette and certificate for their achievements.
We have some examples for you below, but feel free to get creative, and remember it must be completed by the end of March!
Whatever you decide to do, there are huge benefits to you and your beloved pets by getting outside for some fresh air.
Does your neighbour have a dog that could join you for The Big Purple Dog Walk? Or does a local family member have a dog that you could team up with?
What are you waiting for? Get your collars on and grab your leads… let’s go walkies for MS!
Click the button below or call 01206 226500 for more information.
Naturopathic doctor Michael Friedman reflects on what MS has taught him 10 years on from his diagnosis
As I sit at my desk, I can’t help but reflect on my experiences with multiple sclerosis (MS) and all that I’ve written about in my new book, There’s No Pill for This. My thoughts keep returning to this theme – although I’ve experienced improvement in my symptoms, and my physical signs of this, my journey hasn’t been without bumps. I still have bad days. Some of them are really bad. And I want to reassure you that that’s OK. Just as icier, colder nights cause maple trees to make sweeter syrup, the worst MS attacks can strengthen emotional and psychological resiliency.
A few years ago I unexpectedly found myself overtaken by a condition called transverse myelitis, an acute attack on the spinal cord. It can occur on its own or in conjunction with MS. It can be mild and temporary or result in permanent quadriplegia. And it is fast. It’s like having an MS attack on overdrive. The symptoms can manifest in a period of several hours. Previous to this episode, I had been doing everything I could to be as healthy as possible, taking all the protocols for neuroinflammation and neuroprotection with herbs, diet, hormones, and prescription drugs such as Tecfidera. But I was bitten by a tick that was carrying the Lyme disease spirochete, and that I speculated triggered the severe attack.
What I’ve learned
My experiences with transverse myelitis and autonomic dysfunction are the two most recent events in my MS journey, and they are among my most intense, too. From them, and, indeed from my whole experience living with MS, this is what I have learned.
Every experience has a silver lining. If you can’t see the silver lining right away, it’s possible to reframe your mindset and create one for yourself. Here’s what I mean.
When I was battling the effects of transverse myelitis, life was very rough. The only way I could get around the house the first night was to lie on the floor and drag myself by the arms, grabbing the walls and the legs of chairs just to move from one part of a room to the next. I felt like an infant who’d just learned to crawl. I’d regressed, not progressed, and my family was sad and scared as they watched me struggle.
Both my father and my brother had been accomplished ice climbers during their lives. At some point, it struck me that my challenges in getting around the house on the floor were somewhat similar to their accomplishment in climbing a peak. In some ways, it might have been equally satisfying. So with that attitude adjustment, I prepared to traverse the north face of our kitchen.
Change in perspective
During this tough time, I felt a sense of significant accomplishment whenever I successfully solved the mental and physical puzzle of getting from point A to point B. I began to appreciate what I could do, not what I couldn’t do. I felt, in many ways, that my horizontal ‘ice climbing’ might even have been more difficult than the vertical kind because I had no choice. For me, the silver lining is that during my struggle to navigate my home, I experienced many pleasant memories of my father and brother that I might otherwise not have recalled.
Two days after being diagnosed with transverse myelitis, I was tremendously fortunate to regain use of my legs. Still, many other challenges remained. I still couldn’t swallow well. It took many more weeks of intensive therapy to recover, including having to practice enunciating simple sounds like t and z over and over again. Honestly, I felt disheartened – especially since my four-year-old daughter was learning to say four-syllable words at the same time – but instead I brought my focus back to my ice-climbing lesson. We shouldn’t compare our accomplishments with those of others and make that the basis of our satisfaction. For some people with MS, relearning to walk at age 50 might bring similar satisfaction to that of first learning to walk as a child.
I am never fully in control of anything. Despite all of my experiences over the years, it still never ceases to surprise and amaze me how quickly my body and cognition can change. MS has a way of humbling me – reminding me, after each attack, that my ability to pilot the plane of my own future is an illusion.
After all, I took all the right conventional and herbal medicines. I made sure to get enough sleep. I exercised as much as I could. I drank power smoothies. I underwent a fecal transplant and follow-up therapies. I didn’t smoke or do drugs. The Indian side of my family teaches that our fate is a partnership between us and God. I was doing my job as I believed it to be, and casting the rest of my fate to a higher power.
In many ways, I did great. Over an eight-year period, the lesion my neurologist had described as a ‘ticking time bomb’ grew very little. But as I aged, my body had more difficulty adjusting to the lesion, and I began experiencing attacks that I couldn’t predict and had no way of warding off. And no two attacks were exactly the same. Sometimes I’d have balance issues. Other times I couldn’t walk. More than once, I couldn’t remember simple things like what day it was.
I came to realise that control is a myth. God may or may not control my fate, but I certainly don’t. In so many instances when I thought I was in charge, and when I thought I could predict the future, MS smacked me back down to Earth.
I should not take anything for granted. Transverse myelitis taught me that one day I might be running around having fun with my kids, and the next I might be unable to walk. Autonomic dysfunction taught me that one day I could be conversing freely with family and friends, and the next I might have to relearn how to pronounce the letters of the alphabet.
With each attack, I discover something new, about my body and how it reacts and also about the assumptions I have taken for granted – my ability to clearly communicate, to walk, to tie my own shoes, to understand the question someone just asked. I’ve been extremely fortunate to have recovered from each major setback. But, since I know I have no control over the future, there’s no guarantee that I will bounce back the next time, or the time after that. Not taking things for granted is a companion to my humble attempt at a living-in-the-moment philosophy. Every step I take is a gift.
Limiting yourself in life might be freeing. Feeling pain and discomfort while spending time in isolation in meditation or fasting is not necessarily pleasant in the way eating candy is. But life isn’t candy, either.
Thanks to the expert advice from all those ‘-ologists,’ and to the strategies I describe in my new book, during my worst days, even as I struggled with the very real and very human fear of my own mortality and became frustrated with my limitations, I reminded myself that things wouldn’t always be that way. It’s important not to catastrophise your experience. Life goes on. You need to adapt to the world. The world doesn’t adapt to your illness and it shouldn’t.
I did recover from my own worst days. And while I’m never truly the same person I was before an attack – MS has a habit of leaving psychic as well as physical footprints – I want to reiterate that I attribute such ongoing recoveries to the lifestyle modifications I’ve made as I’ve learned about this condition.
When I was first diagnosed 10 years ago, doctors told me my case was moderate to advanced, based on the total number of lesions visible on my MRI. My first MS neurologist told me he had never encountered another patient who already had so many lesions upon first diagnosis. Six years later my second MS neurologist noticed that I no longer had visible cerebral cortical atrophy – the loss of neurons and the connections between them that’s characteristic of many neurodegenerative diseases. She also saw that my progression was incredibly slow, with barely any new lesions on an MRI. She called this remarkable, asked me what I was doing, and told me that pharmaceutical drugs alone couldn’t explain my results.
I have done the best I can and will continue to do so, as best I can. The overall lesson that MS has taught me is that we can make choices about our lives. We can prioritise where we put our energy and focus. On some days, we will have very few options to choose from, because the body ultimately says no. But even then, the mind is always free to choose a path within any limits the body imposes. If you only had 10 steps to take (because your legs don’t work well), where would you go? If you only had 20 words to speak (because your throat muscles don’t work), what would you say – and to whom?
MS forces you to prioritise what’s really important, and that’s the silver lining to the fact that there is no pill for this. Whatever curveball MS throws you, please try to do whatever you can, not only to treat your body, but also to accept it. We are on this journey of life (and MS) together. I wish you and your loved ones all the courage and inspiration you need to feel whole.
Adapted from Dr Michaël Friedman’s new book There’s No Pill for This (Chelsea Green Publishing, November 2020) and is reprinted with permission from the publisher.
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Dean Jeffreys, Online Programmes and Project Manager, explains MS-UK’s new national service and why you should get involved
Hello! I am the newly appointed online programmes and project manager here at MS-UK. I have the pleasure of launching our new and exciting online service for 2021. I have been working at MS-UK for just over three years now, and I will be using this experience to deliver and offer a wide range of online activities for the multiple sclerosis (MS) community.
This year, we will begin by launching our online exercise classes that are accessible for all abilities, and showing you how to get the most out of exercising from home. In addition, we will be starting other new classes and courses that will be the core offering from MS-UK. This includes mindfulness courses, chair yoga sessions, and our peer support service that will help you connect and stay socially active with others.
As we move forward in the year, we will be adding many more activities that you can get involved in. This includes live information sessions on topic areas such as diet and nutrition, symptom management, and complementary therapies. We will also offer alternative activities to those that get you physically active, including sessions on things such as poetry classes and arts and crafts.
As with everything we do at MS-UK, it is community-led, so if you have suggestions for activities you would like to see us hold online, you can email us firstname.lastname@example.org and tell us what activities you would like to see in the future.
Online exercise classes
Starting in January 2021, we have our new online exercise classes, with six classes taking place every week on a Tuesday and Thursday from 11am. The classes are structured in a way that will make them accessible for all.
The classes themselves have been specifically designed to help people stay active at home, and will be delivered by our Exercise Specialist, Alan Pearson. These classes will give you the confidence to manage your wellbeing independently by attending the classes and practising the exercises in your own time.
How the classes are structured
Find out more
Please visit our website page www.ms-uk.org/ms-uk-online to see what we have going on and to book a class. If you have any questions and would like to know more about what we are offering, please email email@example.com or call MS-UK on 01206 226500.
Thank you for reading and I hope to see you in a class with us soon!
Hello, I'm Matthew, my role within MS-UK is the Chair of the Board of Trustees which I took on during 2019.
My first introduction to MS-UK was some years back now when I attended MS-UK’s Summer Ball’s or the December Lunch held in London having received invites from friends who were long-time supporters. Although being a national charity the staff and supporters were very friendly and I could tell the organisation had a real family feel.
I have lived in Colchester, Essex for nearly 20 years with my wife and three now teenage daughters and when I was asked if I would be interested in being a trustee I was honoured. MS-UK gave me a lifetime opportunity of running in the 2013 and 2018 London Marathons and if I could help them in any way I would. I joined the board in 2017 and became Chair in 2019.
All of my girls have helped out at either the Colchester Half or Virgin Money London Marathons and they look forward to the events. They are always made so welcome as part of the team. It’s not easy getting teenage daughters to put on the t-shirts and get involved but they always do for MS-UK.
My role as Chair of the Board is to ensure all runs as smoothly as possible and we are all heading in the right direction. As you can imagine 2020 was very eventful and challenging for us all. I have to say though that my fellow board members and all the staff pulled together really well to see us through the year. Almost weekly zooms through March to June in a strange way actually brought us closer together, even though physically we were far apart. We have yet to catch up face to face for over a year but that time will come.
At the end of last year, I received what I thought was a scam email telling me I had been included in the Queens New Years Honours List. After spending a few days trying to decide if it was real or not I finally opened the attachment. To my surprise, it was real and not a virus. I was completely overwhelmed to have been recognised for my services to the charity sector and feel very lucky. Thank you to everyone congratulated me.
I, like all of us, am now looking forward to 2021. The charity is under great leadership with our CEO Amy and her team and we have a clear direction of travel. I’m Looking forward to catching up with as many of you as possible, at as many events as we can have in the coming months. Thanks for all your support it means so much and keeps the family spirit alive and well at MS-UK.