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Guest blog: Skydiving from 13,000 feet!

Posted on: July 04 2019

Image of Maddy landing after skydiveIn this guest blog, Maddy Spurgin tells us all about jumping from 13,000 feet as she took on a skydiving challenge in aid of MS-UK...

So just a bit about me, my name is Maddy, I’m 16 years old and decided to do a 13,000 feet skydive for MS-UK! I completed this on 24 June 2019 and it was one of the most amazing experiences of my life (even if it was very scary). 

The reason I chose to do this was because back in October 2015 my mum was diagnosed with multiple sclerosis (MS) and therefore I have witnessed how cruel the condition can be and wanted to support those living with the same thing. I have also been volunteering for the charity for a while and have seen how caring the MS-UK staff are and after being given the skydive as a birthday present I saw it as a perfect way to give back to MS-UK.

Before, I would have never have dreamed of doing a skydive but I'm so pleased that I did. Not only did the skydive raise £600 for MS-UK, it was also an amazing opportunity to face my fears because life is too short!!

Visit Maddy's online fundraising page

Feeling inspired?

Get in touch with Lucy at MS-UK on 01206 226500 or email Lucy today to find out more about skydiving in aid of MS-UK!

Email Lucy

Guest blog: My marathon packing checklist

Posted on: July 01 2019

Photo of Jenny Brown from Hobby HelpIf you are going to be taking on your first ever marathon in the near future, we have you covered. In this guest blog, Jenny Brown shares her top tips for marathon packing...

After logging thousands of miles over the past decade, I’ve consulted my running journals, reflected on my best and worst races, and compiled the information I wish had been available to me before running my first 26.2.

If you’re a little (or a lot!) apprehensive about running your first marathon, the following information is sure to help you feel prepared and more confident.

You can read my full blog ‘The Ultimate Beginner’s Guide to Running your First Marathon’ on the hobby help website today.

Marathon packing checklist

  • Running shoes
  • Running socks (avoid cotton)
  • Running shorts, cropped pants, or tights
  • Sports bra
  • Moisture-wicking tank or tee
  • For cold temperatures: Jacket and/or arm warmers
  • Throwaway gear (long sleeve shirt, pants, hat, and/or gloves you don’t mind ditching before the race. These items are typically donated to charity)
  • Bag to hold gear
  • Bib (filled out) & safety pins
  • Timing chip
  • Race information (address, directions, start time, etc.)
  • Driver’s license or other identification
  • Cash (bills are best)
  • Cellphone
  • Running belt
  • Water bottles (filled)
  • Headphones
  • GPS watch
  • Lip balm (preferably with sunscreen)
  • Medications, including pain reliever
  • Fuel (gel, chews, candy, etc.)
  • Hair ties/hat/visor
  • Sunglasses
  • Sunscreen
  • Post-race outfit to change into
  • Post-race food and drinks
  • Towel
  • For cold temperatures: A blanket, coat, hat, and gloves
  • Anti-chafing stick or Vaseline
  • Tissues
  • Bandages
  • Shoes and socks to change into
  • Wet wipes
  • Cellphone charger

Feeling inspired to run?

Find out more about running the Virgin Money London Marathon 2020 in aid of MS-UK.

Fundraiser of the month - Gemma took on a marathon for mum...

Posted on: June 20 2019

Gemma image for blog.pngEvery month we share the story of one of our fantastic #TeamPurple fundraisers. This month, Gemma Burke tells us why she decided to take on the Virgin Money London Marathon earlier this year...

In 2013 my lovely mother got diagnosed with multiple sclerosis (MS). When we got the news of course we were devastated, not knowing much about the condition apart from the fact it was “incurable “ through medication and put her in a lot of pain, we just all did what we could to support her but for years I have felt helpless. She decided not to tell anyone but her close friends and family of the condition she was living with...why you ask?

My mum is one of the most strong, independent, driven and successful women you will ever come across. In 1999 she was awarded the Ernst & Young trophy winning Young Entrepreneur of the Year. From 1992 - 2012 she owned a very successful business expanding world wide in over twenty countries and for years she was on the panel of the DSA and was well respected in the industry she was in. Sadly, I believe because of all of this she put pressure on herself to portray this strong business women, I think she thought people would take pity on her or think she couldn’t get the job done if she came clean that she had MS. So instead she suffered in silence, for a few years she was CEO of a large network marketing business which was an extremely high pressured job and to get her through the pain day to day she would take morphine based pills which again is something none of her colleagues knew about.

In 2017 my mother found herself heading up Europe for one of the largest essential oils company in the world doTERRA, here again she would be working 70 hour weeks, another high pressured role but this time she would be taking over 100 flights a year around Europe. Anyone that has MS will know that one of the biggest struggles is tiredness, so it won’t come as a shock to you when I tell you that she was exhausted. But this time something was different, as she was now part of this essential oil business she discovered natural medicine and in time found the perfect essential oils to support her immune system and pain relief and now to this day is morphine free.

In June 2018, even though my mum was at her healthiest, her strongest, pain free and our “happy mum”, I still felt I needed to do something to help her and others with MS and also families that have lost loved ones through MS. I took the plunge and decided to apply to run the Virgin Money London Marathon 2019 to raise money for MS-UK. They help people and families through some of the darkest times. This journey has been incredible - I have not just been able to raise over £2,000 but I have also learnt so much about myself too, I feel so proud to be a part of it all and to have run for such a good cause with an amazing charity.

Last month my mum told me that I had given her the strength to tell the world what she had been hiding for years, she told her colleagues and thousands of people who work alongside her, friends she had not seen for years that she has had MS for over 6 years. People where stunned, some sad, some happy because her story had also helped them, but most of all no one took pity on her!

So my 'WHY' is my mum, I ran for her, for the strength she has shown, for never giving up, for still pursuing her career even though at times it was nearly impossible to get out of bed let alone run a business, for now helping so many other people with MS find a natural solution that works with them, for having the strength to tell everyone that she will fight and lastly for being the best mum I could wish for!

Visit Gemma's fundraising page

Want to take on the marathon in 2020?

Applications are now open for MS-UK #TeamPurple places in the Virgin Money London Marathon 2020!

Apply today

Guest blog: 'I noticed when I would tell people my Aunty had MS, not many people knew what it was...'

Posted on: June 12 2019

In this guest blog, Melissa tells us all about her reasons for taking on a fundraising challenge in aid of MS-UK...

Melissa Izzo familyHi, my name is Melissa. I first heard about multiple sclerosis (MS) ten or so years ago now, when my Aunty was diagnosed with the condition. We were all a bit shocked as not many of us had ever heard of MS or what it does to someone. My Aunty was a hard worker, she was the manager of the local JJB soccer dome as it was known then. She would bike to work every day and always had time to go have fun on a Saturday night in town. It was here where my mum and Aunty started noticing my Aunty Cathy get very wobbly after having just one drink. They would make jokes, saying, “you been drinking before you come out?” They couldn’t understand why she kept falling on the floor after only a couple of drinks, so my aunty decided she would go to the doctors. This is when they did many tests and found out she had MS. 

So for many years my Aunty has done incredibly well with her MS, she has a couple of remissions, and took poorly but she’s always stayed strong. Over the past 5/6 years things have deteriorated and she is reliant on her wheelchair and help from others. It just upset me so much to see her suffering like this. I always tell people of my Aunty because she has one witty sense of humour and anyone who knows her always has a good laugh. But what I noticed when I would tell people she had MS was that not many people knew what it was.

This is where I decided I was going to do something about that, and started looking into ways I could spread awareness and raise funds for MS-UK. It all started with the idea of doing a skydive, something I have always loved the idea of. So I signed up to do a jump for the charity, which is where I was put into contact with the lovely Lucy at MS-UK. We both discussed about doing the jump and setting my JustGiving page up, and how I can use social media to help reach people and spread the word. 

Then I started getting other ideas of how I could help, so Lucy kindly sent me out some buckets and kitty boxes. I got into contact with my local Tesco extra and we booked a date to go in and do a bucket collection. We raised £76.65, which was just incredible. I put the kitty boxes in my local shop and my aunty's pub. 

It then struck me, with having three daughters how fun would it be to do a fundraising fun day for all the family. So I have set about organising a fun day. I’ve acquired plenty of prizes to be won on the day with beauty treatments, free meals, free bottles of prosecco. Family days out, photography family shoot, cinema tickets and cakes just to name a few. I secured a venue just down the road from where I live and I started thinking what I could do on the day to make it even more fun. Photo of Melissa's aunty

I got in contact with a bouncy castle company and managed to secure a rodeo bull and bouncy castle for the day. What child doesn’t love a bouncy castle and what adult wouldn’t be able to resist having a go on the rodeo bull? I just thought what an incredible way to attract people to the fundraising event and to help raise more funds. 

The local magazine company came and interview me and published a story in May's edition. Which was fantastic news, because now people who aren’t on social media got all the info about the event. 

I’m still emailing and phoning plenty of different companies to require some amazing prizes to give out on the day, and I’m looking forward to my sky dive on 01 September 2019. 

For anyone within the Manchester area the details for the event are: Sunday 21 July 2019, 1pm-5pm. At the club house in Irlam. (Formly boysnope golf course). Adults £3pp. Children aged 1 and up £1.50pp. 

Feeling inspired?

If you would like to challenge yourself to a Skydive or would like to discuss any other fundraising ideas please contact Lucy by email or call on 01206 226500.

Can’t stand up for falling down

Posted on: May 30 2019

Martin profile 4.jpgMSer, Blogger and Influencer Martin Baum discusses his hidden symptoms on World MS Day

This year’s theme for World MS Day is recognising invisible symptoms.  This is quite appropriate, given all those inconveniences we have to endure;  fatigue, bladder, bowel, sensitivity, pain, clumsiness, slurry speech, vision, memory - dear God, will it never end?  Well, no, actually, that’s the crazy mixed up world of Multiple Sclerosis (MS).

After navigating these symptoms for almost 40 years I've learned to live with the cards I've been dealt. If I’m tired, I rest. If my speech slurs, I involve myself with as little conversation as possible and so on. For every problem, there’s a solution, as my late father used to say.

These days I think I cope although I might manage a whole lot better if it wasn’t for the unpredictability of my balance and motor skills. The feeling of knowing I want to walk forward, only to find myself going in the opposite direction is a weird one.  It doesn’t happen often but enough, I reckon, to get on Britain’s Got Talent doing a moonwalk dance routine.

Interestingly, social functions, such as a wedding - are guaranteed to bring out the worst in my ineptitude.  Perhaps it’s the overwhelming sense of the occasion. Yes, it might be the bride’s big day, but when standing next to my wife, I begin to wildly windmill my arms desperately trying to steady myself it causes some embarrassment.

I don’t drink. Not because of a conflict with the medication I’m on but because I’ve never seen the point.  However, given the circumstances of being at a do where alcohol is in copious supply, it’s pointless trying to argue my sobriety. That’s when I feel vulnerable; episodes I cannot control, muddling my words, sometimes quite incoherently. And then overhearing comments from other guests that I’m already “four sheets to the wind”.

Yet I do not - and will not - allow this invisibility of circumstance make life any harder for me than it is.  MS has many different symptoms and let’s be honest, it sucks to be at the receiving end of something so rotten and yet, with all sincerity, I won’t allow myself to be a victim.  To be that man.  Because to be perfectly frank, however bad it is for me, I know it could be a whole lot worse.  I could be in a wheelchair, as so many others are.  But not me, so I’m grateful for that.

My mantra is to live life and not MS.  In other words, I own my multiple sclerosis; it does not own me, which is why World MS Day is so important to me.  The more ‘They’ learn then the less I’m presumed to be the local drunk.   I know I am worth so much more and come World MS Day maybe others will too.

You can read more of Martin’s MS experiences over on his blog, visit www.martinbaum.co.uk.

Forget being ‘normal’, try being unique!

Posted on: May 29 2019

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MSer and illustrator Jessie Ace discusses how MS has changed her life for the better I remember the day I was diagnosed with a stroke like it was yesterday.

Yes, you read that right, a ‘stroke’. That’s what the doctors originally thought I had.

I was only 22 at the time and had been working non-stop to complete my university degree. I’d also been working hard setting up a business for when I left because I was worried I wouldn’t find a job.

I had huge plans for when I left university. I was going to start my brand new career as an illustrator! Designing anything that could hold a pattern or character. I had big dreams of everyone owning something with one of my designs on. I’d managed to get an agent to represent me at major trade shows and I even had a book deal while I was still at university! I was so excited. All I needed to do was to finish university and start.

But life never quite goes as you expect it to does it?

The morning of my last day at university - the very last day - I didn’t quite feel ‘right’. I’d been working to exhaustion most days, so the fact that the left side of my body had gone numb and wobbly sort of made sense to me. It was just stress, right?

Wrong.

It was still numb and weird after a week so I begrudgingly dragged myself to my GP’s office for an appointment. Nothing could be wrong though, I was 22. I was perfectly healthy and never, ever got sick, I was just exhausted and stressed.

When the doctor announced she thought I’d had a stroke I thought she was crazy but at the same time I kind of thought actually it made sense, plus it meant it had already happened right? So it couldn’t get worse.

It got worse.

After coming out of hospital a week later with a diagnosis of Multiple Sclerosis (MS) I thought my life was literally over.

My illustration business I’d painstakingly built up had been taken away overnight as I now had no strength in my hand to even hold a pencil.

My university degree that I’d poured everything into for the last three years felt invalid.

Everything I knew was gone.

My life had gone.

I was gone. 

It took a good few years to accept my diagnosis. A good few years of feeling sorry for myself, blaming myself for not looking after myself as much as I should. Constantly complaining, “Why me?!” or “What did I do to deserve this?” People that I was friends with no longer wanted to know me. They didn’t understand what MS was.

“What do I do now?” I thought.

I’ve got to turn MS into something good.

I decided to use it to help others understand the condition and help inspire people to know that their life is not over, in fact it’s only just beginning.

I have far more of an appreciation for life now. I appreciate how good it feels to type with two hands when I can and to be able to take my dog for a long walk in the sunny woodland. Listening to the birds chirping in the trees and the cool air of early morning against my face.

Life is truly amazing.

I’ve learnt that anything that feels painful or scary is a wakeup call. A chance to analyse your attitudes towards life and the relationships that you’ve made. I believe it gives you a new perspective, a new purpose. An opportunity to wake up from the superficiality of the person you were before and take note of what really matters in the world. Everyone is fighting a battle that no one else knows about.

Fundraiser of the Month - Sharon Asher

Posted on: May 20 2019

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Congratulations to Sharon Asher who is this May's Fundraiser of the Month! Back in September, Sharon travelled to Scotland to cycle the slopes around the shores of the famous Loch Ness in aid of MS-UK. We caught up with her recently so she could tell us what it was like to take on a gruelling 65-mile cycle race with no previous cycling experience...

I signed up to the Etape Loch Ness cycle event last September. A close friend had decided that we would become the 'Invernairne Try Team', a team of four who would undertake challenges to test ourselves and keep fit. The initial plan was to try a triathlon, but somehow we ended up entering the Etape Loch Ness, a 65-mile cycle event that starts and finishes in Inverness, and which takes 5,600 cyclists around Loch Ness, offering spectacular views and scenery alongside some physically and mentally challenging climbs. I decided that if I was going to attempt it, I should try to raise money for a charitable cause and I chose MS-UK. Thankfully, deciding to ride for a cause kept me going to the finish line.  

My mother was diagnosed with multiple sclerosis (MS) in 1973 when I was ten years old. Back then there was little in the way of help and support and life wasn’t easy for my mum or us as a family. Sadly my brother has recently been diagnosed with MS but hopefully, with advances in research, medication, therapy, and support, his experience will be a lot more positive. I also think that by fundraising it has brought awareness to the fact that my brother has the condition and recognition of the issues faced by those diagnosed with what is often a misunderstood condition. 

I chose MS-UK because they support and encourage those with MS to continue to live life and challenge themselves. They also offer invaluable support through the MS-UK Helpline, MS-UK Counselling and the excellent magazine, New Pathways. I feel that if we previously had access to some of the services offered by MS-UK, life for us a family might have been a little easier.  

I think the biggest challenge was the fact that neither the rest of my team or I were experienced cyclists. We were all quite fit for our respective ages but most of our training over the winter had to be indoors, as with short days and icy mornings we couldn’t really get out on the bikes until March. We also had the challenge of the five-mile hill hanging over us, and all we could do was push ourselves on indoor bikes with no idea what lay in store. 

When we finally hit the road on the day, we had survived a few crashes and miscommunications, learned how to change a bike tyre, and stocked up with jelly beans to keep us going, but the furthest we had cycled was 40 miles. Thankfully the weather was kind and we all managed to complete it without any disasters. My indoor training really paid off and I am delighted to report that I finished in the middle of the pack and managed to stay on my bike up the five-mile climb. It was tough though and I was so relieved to hear the piper who welcomes riders to the top. Never has the sound of bagpipes been so welcome!

From then on it was almost all downhill, with a few nasty but shorter climbs thrown in to keep you focused. Thankfully the road home was dotted with fabulous volunteers - their encouragement was invaluable to seeing us all home. 

Would I do it again? Well, I did it enjoy it and I’ve registered interest for next year. I don’t have to make my mind up until September, but it would be a shame not to tackle it again with a bit more training and experience. However, having said that, we’ve still got a triathlon to attempt and as I’m a rubbish swimmer, the next challenge may have to be in the swimming pool. To be honest, I think I’d rather tackle that hill again! 

I have always felt that it is important to challenge yourself, and while I am fortunate to be fit and healthy enough to take on new challenges, I’ll continue to try new things. Hopefully, the money raised, with the help of MS-UK, will encourage those with MS to not give up, find ways to make the most of life and overcome their personal challenges. 

For fundraising, I used JustGiving, mainly because it makes it easy to share your page on social media and enables you to post updates to keep your donors informed. It also deals with Gift Aid, which added another £500 to my fund. Emailing the link to my friends and family and sharing updates on Facebook was invaluable. I also feel that it is essential to thank your donors personally and I took time to thank them individually on Facebook and by email if I had their email address. 

Do something different for MS-UK!

If you would like to try your hand at fundraising for MS-UK, contact Lucy on 01206 226 500, or email lucy@ms-uk.org.

Guest blog: 'If at first you don’t succeed, try and try again!'

Posted on: April 27 2019

Photo of SarahIn this final guest blog of MS Awareness Week, Sarah tells us all about overcoming her fears and discovering she could still exercise following a diagnosis of multiple sclerosis...

'Before I was diagnosed with multiple sclerosis (MS), I was very keen on sport and was always very active participating in sports teams, such as when I joined Colchester Ladies Hockey Club and later on, a Colchester badminton team. I also started playing golf in my mid-thirties and was a very active gardener as I got older.

'However, pre-diagnosis, I had an unexplained ‘attack’ which left me very fatigued with a tendency to quickly hit a ‘fatigue wall’ during any physical exercise, even just walking to the shop. This meant that my very active lifestyle came to something of an abrupt end, even though my mind still thought of myself as fit and active. Suddenly, I just couldn’t do the things that I used to do. Despite my mind telling my legs to run, jump or whatever, my muscles just weren’t able to comply. The messages from my brain just weren’t getting through. It was a very scary time and I began to get scared of trying to carry on doing any physical activity.

'I remember one time when I was still just able to trot a bit and I was walking across a field to our campervan, and it began to rain. I started to ‘run’ towards the van for shelter and took a big tumble which twisted my ankle, wrenched my back and gave me big bruises and muddy clothes. Luckily, I’d fallen on grass but as I’d not fallen over since I was a toddler according to my Mum, it gave me a big shock! This episode really dented my confidence and my physical activity reduced considerably after that.

'Once I received my MS diagnosis, I was overwhelmed by so many fears, worries and confusion. I found it difficult to take in and understand all the advice and information I was given. I didn’t ask about physical exercise or about many other things related to MS because I didn’t know enough to know what to ask, my mind was in a spin. All I remember was being told that ‘overdoing it’ could bring on a relapse, and to rest and pace myself or I would ‘pay for it’. This made me very worried about doing any physical exercise in case it brought on a relapse.

'After my diagnosis, I now exercise twice a week at MS-UK’s wellness centre Josephs Court on a Therabike and on the Vibeplate. I joined Josephs Court two years ago and have been aiming to strengthen my arm and leg muscles to help compensate for my severe fatigue and to reduce the risk of falls. I’m really pleased with my progress and I’m now able to do a lot more than I was able to do before I hit my ‘fatigue wall’. I’ve also learned how to pace myself better through the excellent coaching at Josephs Court and the MS-UK Mindfulness training.

'I now appreciate doing the exercise as it enables me to garden regularly, as long as I’m strict with my pacing! Now I have four grandchildren under the age of four and another on the way, and I have begun to feel that I would be missing out on enjoying family time together, but my increasing fitness and activity has meant that while I still find it very tiring to play with the three year olds, alongside looking after the one year old twins, I’ve been able to find ways to cope with them all and enjoy them without exhausting myself.

'I also have advice to those who are affected by MS and are nervous about exercising. I would say that I feel that good information is the key to living positively with MS. When I was first diagnosed 13 years ago, I didn’t ask questions. I was in denial for about 10 years before I finally plucked up the courage to go to Josephs Court. By then my fitness and strength had deteriorated massively impacting negatively on my general health and wellbeing, so I wish I had been able to ask the questions I needed to earlier in my diagnosis. I have found in the last two years that mental and physical wellbeing, with keeping yourself as fit and healthy as possible, are so important if you’re living with MS, or a similar chronic condition. When I started exercising at Josephs Court, I hit my fatigue wall almost immediately but with the help and encouragement of my Wellness Coach, Jay, I was able to slowly improve.

'Another benefit that I found with exercising is the social part of it. I loved meeting other clients, something I was very nervous about to start with. But chatting with other clients, comparing notes and encouraging others has been a lovely but unexpected bonus, and has really helped me look much more positively on myself with MS. Also, joining the social group and attending social events such as the regular coffee mornings, has been a very enjoyable revelation for me, and helps me to think so much more positively about MS.

'Finally, I find the exercising therapeutic, I feel really well after an exercise session – I am more relaxed and subsequently sleep better; and by the next morning my back and leg pain and spasticity are very much reduced. It improves my strength and stamina and increases my sense of wellbeing. Now, I can also enjoy time with my family and friends without constantly feeling exhausted. “I don’t feel ‘ill’ anymore!"'

Find out more about exercise in our Choices booklet (PDF document)

Find out more about MS Awareness Week

 

It’s time for the hair to go!

Posted on: April 26 2019

So in today’s blog I’m going to talk about something a little more serious and the topic is dealing with my hair falling out due to the chemotherapy.

 

At first I will say and as you can see from the video, it was a bit funny and humorous to me. But those are the magic words, “to me” and just me. The bigger picture is obviously that multiple sclerosis (MS) affects twice as many women as it does men, so for every one of me as a man, there are two women. As I was washing my hair this morning in the shower, there was a nice ring of my hair about my feet, which to be honest was something of a surprise and not a terribly pleasant experience. It did leave me with a curious feeling, thinking about other people that may not be approaching this in the same way that I am. I can see that a woman would be very proud of her hair, or a man for that matter, a lot of men can get uppity about losing their hair. Nature takes some men on a biological one-way trip and their hair just falls out anyway regardless of chemotherapy and that’s just life, there are plenty of strapping bald men out there.

I did actually feel my heart sink a little bit when I thought about people who are proud of their hair and spend a lot of money on it. It can define some people. This is not meant to sound like it’s a vanity thing because it just isn’t, but watching my hair falling out as I was washing it this morning left me with a small feeling of dread for myself. What if it doesn’t grow back? Which isn’t too bad, as I used to shave my head all the time anyway. But for those that don’t view this the same way as I do, it must be such a huge heavy heart sinking feeling. I can see how it might feel at this stage of the initial HSCT chemotherapy, almost like a point of no return, the hair is going to go. Writing this, it makes me feel more than a bit solemn when I think about the big picture and the many different people that this will involve.

One of the few things I can think of that may help in this situation is to have a good positive mental attitude. I don’t mean to sound patronising, but it can become such a strong powerful weapon to have in your little arsenal and that is what gets me through. Yeah, the hair is going right now, but just look to the future not so far away. You’re talking six months from now, which is a snap in our lifetimes really and isn’t really that long at all. We would have collectively come through the other side of the chemotherapy, and we shall be growing fresh new baby soft hair, colour back in our cheeks, a spring in our step and no MS.

Another positive view on this was one my wife brought up. She said this is my old MS hair and it’s been removed to make way for my new non-MS hair for the new non-MS me. It’s a very useful sentiment and one I will carry closely with me as I go through each stage of treatment.

No MS is what we need to focus on right here, right now as the collective, going through the chemotherapy to rid ourselves of the MS that we are all battling with. My eyes are firmly fixed on that, and as I have said before I want to run, probably not for the first few weeks or months, but I will run. We the collective MSers now have a way out of the previously never-ending inescapable tunnel that I personally could never see the end of. HSCT is a gift that few are blessed to receive, so losing our hair in the meantime is an insignificantly small price to pay for us to have our lives back, with or without limitations.

Scott has decided that he will shave his beloved beard off to raise money for MS-UK. Anyone who has been following his story will know how much his beard means to him, so if you would like to donate, visit his JustGiving page or Facebook fundraisier. 

If you’ve been effected by the topic discussed in this blog, please contact the MS-UK Hepline on 0800 783 0518.

Guest blog: 'I'm pretty convinced that if I didn't exercise I would have lost lots more function'

Posted on: April 26 2019

Photo of PhilIn this guest blog Phil, a MS-UK Trustee, tells us about exercising before and after a diagnosis of multiple sclerosis as part of MS Awareness Week...

'I was diagnosed with MS in the summer of 2007 and I quickly tried to find out more about it and what I could do. Of the various organisations offering advice, it was MS-UK (or MSRC as it was at the time) that I found most helpful and supportive. The pragmatic and un-blinkered information, the positive attitude of taking control of your own situation helped me through those first difficult few months, and that idea of taking control of your own health is still very much with me.

'Fortunately I then got the chance to join the Board of Trustees at MS-UK and it gave me a chance to use the skills I had developed in my management consulting career for an organisation that really was making a difference to people’s lives.

'Before I was diagnosed I was very physically active, despite a demanding job that took me to many places around the world. The mountains and mountaineering was my real passion, and as well as rock and ice climbing I ran and cycled. Ironically it was a friend seeing me stagger back from a day’s rock climbing that made me go to the doctor and started the process that led to my diagnosis.

'I have primary progressive MS and immediately after diagnosis my physical symptoms were pretty minor. But as my mobility worsened I couldn’t climb anymore, I kept falling over when running because of my foot drop, and tunnel vision when tired made road cycling too dangerous. Climbing was a big part of my life and not being able to do this felt like a huge loss to me. 

'So now 12 years after diagnosis with PPMS I do what I can when it comes to exercise and it’s still a big part of my life. I can’t run at all or walk far, so I have a rowing machine for cardiovascular exercise. I used to have a rowing club nearby that offered assisted rowing which was wonderful. I have a home gym where I can do resistance and strength work and have joined The MS Gym.

'I have seen the benefits of exercising personally and am certain it has allowed me to recover some lost ability. For a while my foot drop was pretty bad - all my right shoes had the familiar tell-tale scuff marks around the toe. But amazingly I found that by working on my right foot and leg I managed to nearly get rid of the foot drop – so now it’s only when I’m really tired that I have a problem. This helped convince me that although I might not be able to recover all the function I’ve lost, I may be able recover some function and must do what I can to maximise what I have. 

'I also have some advice to people affected by MS who are nervous about exercising. Exercise will not make your MS worse. Even if you feel exhausted or can’t even move immediately after exercising, you will recover. And it is fine to exercise to ‘failure’ and push your limits – just make sure you’re safe, be aware of form, and have time to recover. There are lots of stories from those with MS that have some functional recovery by exercising, including at basic levels of movement. Also brain loss as we age is much faster in those with MS and exercise slows this loss. However, it can be hard, especially with the fatigue and mobility issues. There is lots of help out there to start you on your exercising journey. Neuro physiotherapists can be incredibly helpful and your MS nurse or consultant might be able to refer you. Many gyms offer advice and training programmes, and there are assisted activities all over the UK. MS-UK and the MS Trust have general advice and more details on exercise programs.

'I also found that exercising with MS requires a huge amount of concentration and can be very tiring. It’s not just a case of “use it or lose it” because form is really important. When I exercise I’m also trying to create new neural pathways to overcome functional loss, so learning and practicing the right way to move is vital.

'Finally, I feel that exercising is therapeutic and I know that I have recovered some lost function through exercising. I’m convinced that if I didn’t exercise, I would have lost more function and exercise has helped me alter the trajectory of the condition. But I just enjoy doing it and feel so much better - even if I can’t move a step immediately afterwards!'

Find out more about exercise in our Choices booklet (PDF document)

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