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Introducing MS-UK Online

Posted on: January 18 2021

Dean.JPGDean 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 register@ms-uk.org and tell us what activities you would like to see in the future.

FB photo Alan.jpgOnline 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

  • Level one (11-11:30am) will focus on exercises for those who are seated, have trunk (core) weakness and have limited upper limb movement
  • Level two (11:45am-12:15pm) will be for those who can transfer from sitting to standing independently but may require assistance or the use of a walking aid
  • Level three (12:30-1pm) for those who mobilise independently with minimal impairment

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 register@ms-uk.org or call MS-UK on 01206 226500.

Thank you for reading and I hope to see you in a class with us soon!

Meet Matthew Swan, Chair of our Board of Trustees

Posted on: January 15 2021

Matthew  .jpgHello, 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.

‘I always wanted to be a pirate’

Posted on: January 06 2021

Debra.jpgDeborah Searson was diagnosed with multiple sclerosis during lockdown… She is sharing her story to help others who may find themselves in a similar situation

This is my story of how I became diagnosed with multiple sclerosis (MS) after the shock and realisation had set in, I realised life doesn’t stop and for me, the way through was to put into writing my experience with a little added humour.

I woke for work at 6am on a Spring Saturday morning in late April 2020, I stood and stumbled slightly, probably due to the few red wines I’d had the night before (or so I thought) I went back into the bedroom and stood in front of the mirror to put on a little makeup. As I stood there, I was trying to focus my eyes on my face and just couldn’t get a clear picture. How many wines did I have last night? My job involves me at times being in a senior role and that day was one of those, Great! I had no choice but to go in, with the Coronavirus very much part of my job, I had to go and make sure everything and everyone was OK. I only managed to stay an hour or so.

Once home I slept hoping when I woke up it would have resolved itself but it hadn’t. Whilst this was happening, we were in a full lockdown due to Coronavirus, I rang the eye clinic at a local hospital and asked if they could see me. What I’d noticed is that it seemed to be double vision I was having, where images were on top of one another not side by side and that it did return to normal if I closed one eye? They were unable to see me due to pressures at the hospital so I left it a few more days hoping that it would resolve by itself.

I eventually managed to get an eye examination at an Opticians but this was done at a social distance and they told me they thought that I may have Strabismus now to anyone that is not an optician, meant I had cross-eyes! What? How? Why have I never noticed this? They said I would need to wear a Prism on my glasses which would help restore normal vision, but they couldn’t give me one due to the pandemic.

A few more days passed and the double vision was starting to make me feel like a drunken sailor ready to walk the plank, I remember texting one of my friends who also works at the same place as me and they somehow managed to get me an eye clinic appointment (lifesaver literally).

So eventually, looking like an extra from Pirates of the Caribbean, with my eye patch on, secretly enjoying the daily fancy dress, I got an eye clinic appointment and, on the photos/scans they’d taken of my eyes, they said there seemed to be high pressure on the optic nerves and I would need a lumbar puncture. After which I was diagnosed with Idiopathic Intracranial Hypertension.

Over the following month, I began to feel worse by the day and in late May 2020, I was in and out of the hospital, sent home each time with what they thought was Gastroenteritis.

It wasn’t until I went for a follow-up eye clinic appointment in June 2020 the consultant brought up the latest MRI scan results showing I had extensive inflammation on the brain. I was kept in hospital and given steroids, it was here that the words multiple sclerosis were first spoken to me. In all honesty, I’ve worked in the medical profession for the last 15 years and I didn’t really know much about MS. The MS Society website helped me get to grips with it and reading other blogs made me feel less alone.

I have launched a blog and if anyone would like to read further about my journey with some humour added in you can visit, Youregettingonmylastnerve.co.uk

Medical retirement - what you need to know

Posted on: December 18 2020

Rebecca Armstrong2this one.jpgMSer and HR expert Rebecca Armstrong explains the ins and outs of medical retirement

A regular point of discussion on the MS & Work Facebook group is around medical retirement. Many people with multiple sclerosis (MS) reach a point where if feels impossible to carry on at work due to their condition and this can lead to a crossroads.

If you find yourself at the point where you feel you can no longer continue at work, retirement might be the next step. The first and most important question to ask yourself is whether it is your current job that has become too much (even with adjustments) or if any kind of work is too much. This is important as medical retirement is a big step and one which symbolises that you will not work again (although some pensions may allow a restricted number of hours). If you feel that it is your current job that is too much you might want to consider looking for another job which is better suited before making the step into retirement.

If, however, even with adjustments, you are unable to work, then retirement is a way to access your pension early.

If you feel this is the next step for you, there are a number of things to look at

  1. Start by speaking to your pension company. They will be able to give you a clear indication of what you will get financially as well as what their criteria is for medical retirement. Many have tiered systems from full retirement where you do not work, to retirement where some work is allowed.
  2. Once you know what your pension will pay, it’s worth doing some research into what additional benefits you might be entitled to over and above that. This might be in the form of Employment and Support Allowance or Personal Independence Payment. These two things will give you a picture of what medical retirement will mean financially to help you plan.
  3. Any form of medical retirement will require the support of your consultant and/or MS nurse, so it is a good idea to discuss it with them. They are typically looking at how you are now and your prognosis for the future. For this reason medical retirement is often associated with the progressive forms of MS however, there are cases where someone with active relapsing remitting MS can also apply for retirement successfully.

Once you have completed these steps and have a clear picture of how the retirement would work for you, the next step is to discuss it with your employer. Once you raise it, you are letting them know you are unlikely to be able to continue work, which is why I always recommend this as the last stage in the process when you are sure. Medical retirement is ultimately a dismissal but it is managed as more of a mutual agreement. It is a big step and alongside this process it is worth considering counselling and other support from the MS-UK helpline.

This was origionally published in New Pathways magazine.  Subscribe to New Pathways

 

‘He doesn’t complain, he doesn’t moan and he doesn't give up’

Posted on: December 15 2020

Simon Gardner 2.jpg
Left to right - Simon Gardner, Nigel Gardner, Ed Gardner and Phil Gardner

In October this year, I decided to run a virtual marathon, my first one. I began training, building up and getting the miles in my legs, tentatively at first to avoid injury but building up the distances as I went. It was very hard but didn’t take long and like my dad, I (quietly) don’t give up.

My motivation… my dad. An athlete, a footballer, champion snooker and darts player, canoeist and lifelong fisherman. He received his multiple sclerosis (MS) diagnosis when he was 27 years old, not long after I was born. He is now 66 and although the progression of the disease has been relatively gradual, it has taken away all those things. He has lost the vast majority of the mobility control in his legs amongst other things. Having lived with MS for 40 years I cannot believe how resilient and calm he is and yet open. We all keep a little back from our loved ones and I do not doubt that he does because this is his and he owns it. He shares what he wants and faces into what he doesn’t. He doesn’t complain, he doesn’t moan and he doesn't give up.

I originally intended to run the Official 2020 Virtual TCS New York City Marathon solo and self-supported, however, an ambitious practice run turned into the full distance a week ahead of schedule! I was out on the trails and things were working out well so decided to push on to make sure I understood what the ‘real thing’ would be like… good job too as I learnt a lot about what my body needs when under this much pressure. I thought of my dad.

On the day, after designing my route and packing my vest with food and water, I decided to set off from my dad’s home and take a nostalgic run through the old days along roads, towns and villages I remember when growing up. The weather was shocking with heavy rain and being soft underfoot - so Garmin ‘Set', crime audiobook ‘On’ (Dad loves detective stories), head down, swing the arms and see where the legs take you!

20 miles in and to be honest I’d had enough of natural beauty, enough of my audiobook, my body was rejecting food and all the water in the world was not hydrating me. There was no reason I could be, but I was bored! So I called my wife and spoke to my kids who buoyed me up. Then called my dad who picked up just as the wind and rain returned and couldn’t hear a damn word I was saying! They say the last six miles are the worst. That said, I completed it, solo and self-supported while playing detective in the pouring rain.

My reward (medal) is still in the mail from US however the New York Road Runners app provided this augmented reality one which really lifts the spirits when you award it yourself while you pose for as good a selfie as you can get (or care about getting!). My other reward was a cold, then hot bath, a can of American Cream Soda, nine sausages with huge amounts of Dad's mash.

I was reading about MS-UK and what caught my eye, in particular, was their focus on the mental health of individuals with a multiple sclerosis diagnosis. My dad, my brothers and I are all fortunate to have one another to provide all kinds of support, particularly through lockdown, but we all know there will be some serious and important decisions to make in the next few years. We will need to strike a balance between support and independence. There will also be times when we do not know what to do, or if it is the ‘right’ thing and we will need the support of MS-UK.

As for fundraising, I told my story to those at work, those I run with or who I know run. With so many charities, particularly in 2020, needing more support than ever I didn’t want to appear to pressure them but when explaining the reason for my choice and the impact the support of MS-UK will one day have, people gave what they could.

Simon has raised an incredible £737.53 for MS-UK, here is the link to his fundraising page https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=SimonGardner11&pageUrl=1

If you would like to take on your own challenge to raise money for MS-UK like Simon did, please contact Lucy today on 01206 226500 or lucy@ms-uk.org

I struggled to find anyone who I could really relate to

Posted on: December 14 2020

Amy Thompson explains why she created MS Together, and how you can get involved

Amy Thompson.jpgMS Together is a support group for young people aged 18-35 who have been diagnosed with multiple sclerosis (MS) and live in the UK/Ireland.  

The group was founded last year by me, Amy Thompson, after I was diagnosed with MS at the age of 21. I struggled to find anyone who I could really relate to and I couldn’t find any support groups that existed just for young people. Over the last year, the group has grown from just six members to over 330 and I have huge, exciting plans for the future of MS Together. 

We offer a private Facebook group for members to connect, an optional WhatsApp group chat for more frequent support, virtual meet ups (three to four per month), and in-person meet ups (when possible). So far, we have had three in-person meet ups and we have hosted a number of virtual events including a bottomless brunch, motivational and research talks, a murder mystery, a mind-set evening, bingo and quiz nights.  

Christmas party

On 20 December 2020, MS Together are throwing a virtual Christmas Party for all members to enjoy. As part of this, we have organised a Christmas Raffle and we’ve been donated some incredible prizes, including several vouchers, personalised gifts, chocolates and snacks, wellbeing sessions, crates of beer, hampers and bundles, perfume, jewellery, art, home decor, and a top mystery prize! 

All profits raised from the raffle will be donated to MS-UK who have helped many of our members this year through their counselling service. We are very grateful for the work they do, and we are delighted to be fundraising for them. We have already raised over £500 and we still have almost three weeks to go. 

Raising money for charities like MS-UK is so important, especially during these challenging times. There are so many ways you can fundraise nowadays, and the team at MS-UK will support you all the way. 

If anyone would like to find out more about MS Together or our Christmas Raffle you can email mstogether@outlook.com. You can also follow us on Instagram @mstogetherofficial or request to join our private Facebook group here www.facebook.com/groups/mstogetherofficial.

We basically offer a safe and supportive space for all members whilst also making it fun, positive, and uplifting. We would love to be able to share more information about the group and we will welcome any new members with open arms!

If you would like to speak to the team at MS-UK about your own fundraising idea, then please contact Lucy on 01206 226500 or email Lucy@ms-uk.org

'Not all disabilities are visible’ - International Day of People with Disabilities

Posted on: December 03 2020

Martin profile 4.jpgThe theme for this year’s International Day of People with Disabilities is as unequivocal as it gets, ‘not all disabilities are visible’.

The message is not unique as anyone who is already aware of the Sunflower Lanyard scheme can confirm. But more than that, from a gradual decline in my own circumstances over the last year, I’ve noticed a change in the attitude I experience when I am out and about, and it is this. People are more aware.  Kinder. And understanding.

Nowadays, my motor skills sometimes scrape the bottom of the multiple sclerosis (MS) barrel. Messages from the brain to my legs get embarrassingly confused and play merry hell with my centre of gravity. I have to confess that these days it is less than easy to walk a straight line without my feet taking me on a journey to the left or the right of the pavement, whether I want to go or not.

People still stare, sometimes. After all, it’s only human nature. But these days not in a way that makes me feel like I am an exhibit of P. T. Barnum’s circus.  In restaurants or coffee shops my knees sometimes struggle to support my body weight when I try to rise from the table.   

It’s not the most pleasant of experiences but it happens, of course, it does, but that’s when I endeavour to wrestle control over a situation where I have none at all. Because the MS is mine it’s up to me to reassure the crowd – and I do still have the ability to draw one – that everything is fine because this is not the first time it’s happened to me that day.

To carry an expectation – or even a grudge - against others for not understanding my sometimes muddled speech or incontinent thought process is not who I am. Or at least not anymore. Why make strangers feel uncomfortable?  It’s nobody’s fault I have MS and I will tell whoever needs my reassurance that everything is under control. That everything is ‘cool’.

Being an MS blogger has put me in a position of MS privilege. I am at the coalface of disability activity. I am the embodiment of disability action. I no longer have the need to hide my disability behind my cabbage stalk walking stick. I wear my sunflower lanyard as a badge of honour. 

I am Martin Baum.  I am a proud MSer.

#LiveLifeNotMS

Head on over to the MS-UK Facebook page and like and share our posts for the International Day of People with Disabilities. Help us raise awareness of the hidden symptoms of MS - www.facebook.com/MultipleSclerosisUK/

“I feel no less a hostage than I did at the beginning”

Posted on: November 19 2020

Martin.jpgFor International Men’s Day, Martin Baum reflects on what it means to be a man with MS

19 November is International Men’s Day and as an MSer that gives me pause for thought. As someone living with multiple sclerosis (MS), do my struggles make me different to any other man commemorating this day?   

After chronicling the difficulties in a series of blogs about my long and sometimes abusive relationship with MS, having to endure symptoms hardly qualifies me as unique.

Over the years my wife Lizzy, as my carer, has become my gatekeeper, my rock and protector. Yet as much as she protects, she is also a reminder of the losing battle I have for my independence and that is the trade-off.

While my struggle against MS incarceration is no Spartacus or Braveheart moment, what it represents is me desperately wanting to defend my body against the MS bailiffs. Those dispossessors of independence have already been and taken my freedom away to drive on my own without Nurse Ratched – sorry, Lizzy – riding shotgun.   

I am not in a wheelchair, and don’t plan to be any time soon. But as my legs continue to be less than supportive, the more my knees continue to buckle under the weight of my torso. This is a reminder that the wheels of my growing immobility are now in motion.

Mentally, I still see myself as a ‘player’ but physically, “it just ain’t going to happen”, as my dad used to say. While I am only 60, the days of leaping in and out of a car à la Starsky and Hutch (for those that remember them) are long gone, having given way instead to snaking myself in and out of the passenger seat. It was much the same with walking aids.

It took so long to mentally ‘get over it’, to feel at one with my cabbage stalk stick. Although there’s nothing unique in using one, and no matter how much I resented being bonded to it from the very start of our affiliation to each other, in truth, all this time on, I feel no less a hostage than I did at the beginning.

Yet despite all the trials and tribulations of having MS, of living and dealing with the many symptoms of it, one thing is for sure – it does not actually make me unique. What it does is make me think of is every man who cannot be here on the 19 November to celebrate International Men’s Day. 

Despite the daily struggles of having MS, the fact I am still here to write the blog, to tell the tale of just how restrictive life is, which this year, because of Covid-19, has been the same for all of us, there is only one word that comes to mind and that is ‘blessed’. Because I am thankful to still be here today when so many are not.

#LiveLifeNotMS

Living with multiple sclerosis can sometimes leave you feeling lonely... This is Helen's story

Posted on: November 17 2020

Helen.jpgWhen I was diagnosed with multiple sclerosis (MS) at 23, I was so scared and lonely and in quite a dark place. It was a huge deal for me – I’d only been married for a year and was at the beginning of my career as a nurse. My parents took it very badly, and it was a big, big change for me.

Early on in my journey, I was prescribed antidepressants. They help keep me on an even keel.

Having MS, there are times when I feel very lonely. It doesn’t matter how many people I have around me, I can still feel very alone. Unless they have it too, your loved ones and friends don’t really understand what you’re going through.

Old friends worry about meeting up with me. They wonder how bad I will be – whether I’ll be able to walk or whether I’ll be in a wheelchair.

I do spend a lot of time at home alone, but my little dog helps me enormously. She’s like my shadow and my best friend. Having her, with her unconditional love, has helped me so much. Pets help so much when you’re lonely.

Knowing the MS-UK Helpline is there when I need to talk makes me feel supported.

 


Help stop loneliness this Christmas

This year MS-UK's Christmas appeal is raising money to support our helpline, which is here to support people living with MS when they need it most. Our research shows that 71% of people living with MS feel lonely or isolated because of their condition. By working together with MS-UK, you can help these people feel less alone this Christmas. 

Make a donation

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“I realised I am not like other mums”

Posted on: November 10 2020

carla.jpgMSer and career coach Carla King on the ups and downs of parenting with MS

I’ve wanted to be a mother for as long as I can remember. In my role, I am simultaneously elated and exhausted but the reward far, far exceeds anything that might feel testing. TV and film often send up parenthood with comic effect. We laugh along because it’s funny, but the truth is that mixing multiple sclerosis (MS) with parenting can be more guilt-tripping, than comedic.

Idealised parenting

For years, I would push myself to get through the school run, particularly as this was toward the end of the day by which time my energy reserves were depleting. This meant I could just about muster collecting my son and the bus ride home, but not to go into lengthy discussion with other parents. Why push myself? Because I thought motherhood was all about sacrifice and how I was supposed to behave, even with MS.

Adapting to parenting with MS

Even before lockdown, I had scaled back playdates due to energy levels required to ‘entertain.’ By this I mean just coping with the noise, keeping one eye on preparing for a feeding frenzy and the other on anyone intent on killing each other. Yet children have an extraordinary way of turning anything into play, so now there are many more Zoom, WhatsApp and phone calls.

I am heat-sensitive, which makes me unwell. In the height of the summer, I avoid the park after school. If we don’t end up in our garden, you’ll find us making ice cream smoothies.

Routine isn’t just for children, some of us with cog fog need it too. If I have some semblance of routine, I can remember tasks more easily, for example, putting out school uniform on a Sunday night, or PE kit ready for Tuesday.

Halloween at Carlas.jpgReframing

In mid-October, I experienced a level of fatigue that knocked me for six. I don’t know why. A couple of weeks later, having decided to forgo trick or treating, I hatched an alternative plan for Halloween. I baked for days and put on a surprise ‘party.’ I really thought this would come at a price, but it didn’t. Literally, zero fatigue. Sometimes, we can track trigger points but, as in the former example, MS sometimes can be a conundrum to get through and not question.

The important take-away? My son had his Halloween (and some fatigue you can’t predict).

Learnings so far

I remember doing everything I could to make sure that my child didn’t feel I was different to other mums. This came at a cost and a realisation – I am not like other mums. A couple of years ago, I decided to stop comparing myself to anyone else. The only person I need to worry about is the only person in the world who calls me ‘Mummy.’ In all honesty, we would both rather I be authentic.

Avoiding MS parenting guilt

  1. Focus on what you can do, not what you can’t.
  2. Talk to your child. Be age-appropriate, but be open. They really appreciate it and they understand more we think. No young person needs to be worrying about us unnecessarily.
  3. As tempting as it may be, stop comparing yourself to others.
  4. Focus on what you are giving your child. Think about the empathy, values and resilience we are developing in our children.

Ok, so my bakes aren’t always perfectly decorated, I’ll not run marathons or paraglide, and I’ll always have to work harder than a parent without a chronic condition. But I’ll always try my best and I’ll always be me. My child doesn’t need me to be everything all of the time. When the chips are down, Mummy is enough.

 

Carla works as a Career Coach and was diagnosed with MS in 2008. Carla often supports MSers through diagnosis and beyond. She also presents to audiences from the MS community and the MS field. Carla is the author of a blog about living, working and parenting with MS, called My MS Bully and Me.

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