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MS-UK Blog

How to identify a change of need

Posted on: December 01 2021

For many people with MS, recognising that help is needed with tasks that were previously easy can understandably be a huge emotional challenge. If you are finding that certain tasks are becoming increasingly difficult it may be time for a care needs assessment. iStock-1275350376.jpg

What does that mean?

Perhaps your ability to move about your home safely isn’t quite as it was, maybe you are now finding maintaining your home is becoming difficult and exacerbates your fatigue. You may be finding you need assistance with managing toileting, personal care, and dressing. These are all signs that may indicate you have a change of need.

An assessment should also consider things like

  • How you maintain relationships with family and friends
  • Your ability to take part in education, training, work, or volunteering
  • Your ability to participate in social activities and use of public transport
  • How you look after children you have responsibility for

If you have significant difficulties or problems with any of the above, it is likely that you will be given a support plan to meet your care needs.

Broadly the assessments will cover your support needs, your wellbeing, and the impact your disability has on your ability to care for yourself.

An assessment of need may have a variety of outcomes for you and care and support packages should look and feel different for everyone. It can be daunting, coming to terms with the fact support is needed, but social care packages should be personalised and tailored to your individual needs and when working well, can be life changing.

If you are offered a care and support package, you should have the opportunity to arrange and purchase your own care via a Personal Budget. This can be taken in the form of a ‘direct payment’. It may be helpful to read our Choices booklet on Personal Budgets as this goes into detail about how a direct payment can be used to meet your needs in the way that is best for you.

Please call our helpline if you feel you have a change of need, or to talk about how to identify those changes and how to make the first steps in getting an assessment. Our helpline can support you through the process. The MS-UK helpline is available Monday to Friday, 10am to 4pm. Please call 0800 783 0518, email info@ms-uk.org or live webchat

'My name's Regan, I’m living with MS and I am down right regular'

Posted on: November 29 2021

When I was given the topic of ‘Living a Regular Life at 22 with MS’ I initially thought it wasn’t something I was qualified to write about. Besides, my life isn’t very regular now a days- I pretty much stay at home all the time, I’m a uni drop out (x3) and I medically retired this year. Despite all of this, plus a very long talk with a good friend, I took on the amazing offer once I decided there genuinely isn’t such a thing of a regular life. 5_4.png

My name is Regan, I’m 22 and I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS) at the age of 16- ouch. Since my diagnosis I’ve been so determined to live this ‘normal’ life and the one I had pictured living while growing up, that I neglect the fact I actually achieve quite a lot, just in a roundabout way. I stayed in school and left with decent grades, I got a job I loved and I’ve had the teenage heart breaks and wardrobe disasters the same as everyone else. My health didn’t strip me of an awful sense of humour, it just created a more resilient version of me.

Trying to live the same as everyone else for anybody, chronically ill or not just won’t work out- I’m sorry, but it’s true. I look at my beautiful friends and other than a few similarities such as uni, they haven’t experienced the same things, so why did I put pressure on myself to? Chronic illness isn’t a death sentence, but I personally feel it would be naive and in someways a disrespect to say it isn’t exhausting, emotional and restrictive.

My life is perhaps regular in the sense of me loving all things clothes, baking, makeup and Sims 4. It’s regular in the sense of worrying about the future, just with a twist and it’s regular in the sense of me not having control over everything that goes on, and in some ways that’s a beautiful thing. Just recently, I tried a treatment to get my MS to calm down and it didn’t work. A night spent crying and eating chocolate was all I was willing to give that situation before I looked into my next venture. Life with MS is all about adapting and sometimes it’s more painful than others. 

Overall, I don’t think I can fully write about living a regular life. I have the bladder of an 80 year old, my mum or boyfriend help me shower, to cook and to clean. However, I live with the ideology that my best will always be the best and that’s enough for me. To me, that is something that should be a regular thing in life. I am sorry that some people want to see a young girl fighting fit and overcoming all these things, but the reality is it’s just not that easy, especially with MS like mine that is proving difficult to get under control. My life is beautiful- difficult but beautiful and there’s still times I grieve over not living out the life younger me imagined but that’s okay. It’s normal. 

My name's Regan, I’m living with MS and I am plain, simple and down right regular. 

Wickham's Wine - MS-UK Christmas Auction

Posted on: November 29 2021

“We were delighted to be asked to donate to MS-UK’s first virtual auction and are thrilled to continue our support of the charity, in order to help raise money to fund the vital work that they do”, says Dan Farrell-Wright, director at Wickhams. 

Dan continues, “The 'World’s Favourite Wine Selection' case includes six bottles, which are regularly updated, one from each of the big beasts of the wine world including Pinot Grigio, Rioja, Sauvignon Blanc, Merlot, Chardonnay and Malbec.  All of the wines in the case are great examples of their type and have been carefully selected by us. The case includes...worlds-favourite-mix-jun__67878.1623853043.jpg

Cinco Fincas, Malbec, Mendoza 2020
Peculiar Mr Pat Merlot, South Eastern Australia 2019 
de Alto Tradicional, Rioja 2020
Whale Point Sauvignon Blanc, 2020
One Chain ‘The Googly’ Chardonnay, Australia, 2019
Calusari Pinot Grigio 2019, Viile Timisului, Romania

Sourcing the finest Estate bottled wines, here at Wickhams online wine and spirit merchant we curate collections from the everyday to the classics while ensuring there's something to suit all tastes.  We passionately believe in stocking wines, spirits and gift sets at a range of price points, to ensure our products are accessible to all and were shortlisted in this year’s Decanter Retailer Awards.” 

Join one of our Peer Pods!

Posted on: November 23 2021

Vicky.jpgMake new friends, gain extra support, and, sometimes, just have a good laugh – our Peer Support Service offers so many opportunities, says MS-UK’s Vicky Timmins

Hello, I’m Vicky, MS-UK’s Peer Support Co-Ordinator. I have worked at MS-UK for over seven years now. Early this year, we started to develop our new service and I recruited a wonderful team of volunteers that have helped me to create individual ‘Peer Pods’. Each Pod holds regular online sessions over Zoom that are open to anyone living with MS. We help each other by staying connected, socialising, and offering support.

I’d love for you to join in if you’d like to. Please allow me to introduce some of our Peer Support volunteers, who will tell you more about their Pods…

The Media Peer Pod

AmandaD Photo (002).jpgHosted by Amanda

The Media Peer Pod started during lockdown, at a time when we were all at home and many of us were spending a lot of time watching TV and films and listening to podcasts.

It occurred to me that we could talk about what we were watching and listening to and share recommendations with each other. The Peer Pod started out being exactly that – a fun chat and an exchange of tips. However, as we started to get to know each other, we started to talk about how we were. We all welcomed the opportunity to get to know and talk with people who know what we are going through and who listen, encourage, empathise and share information to improve each other's lives.  It has become so much more than a chat about TV, it has become a safe space where we can talk, share, listen, support and ask advice of each other. We have become friends and we care genuinely care about each other's welfare.

"It is a safe space where we can talk, share, listen, support and ask advice of each other"

I would encourage anyone to come along and join our sessions every Monday at 3pm. We will give you a warm welcome and you will see our smiling faces – we love it when new people join us, and we would love to hear your story – if you want to share it of course! There is no obligation to talk – you may prefer to simply listen. You don't even need to be a TV, film or book enthusiast. The key thing that brings us together is that we are all people with MS, who are all trying to live the best lives we can and enjoying feeling part of a group of like-minded people, who are there to cheer us on and support us when we need it.

Men’s Peer Pod

Hosted by Steve and Chris

SteveRphotoresized.jpgSteve – Our Men's Pod is about the experience of being a man dealing with MS. Chris and I try and create a safe and friendly environment where we can explore what it means to be male and have MS. People are heard, not judged, and sometimes have the balls to laugh at ourselves (if you excuse the pun).

At times we look at subjects that are difficult to talk about with others, and we also talk about our experiences and journeys. We know that we share the condition, but ChrisBphoto.jpghave different stories and journeys. Finally, like Vegas, what is said in the Pod stays in the Pod!

Chris – Our Pod has no fixed agenda. We have had many conversations on topics that we would not feel comfortable discussing with women present – I'm sure it's the same for the women. We meet once a week to chat properly, on a Monday at 2pm, but we can discuss anything any time on our Pod’s WhatsApp group.

 

Women’s Peer Pod

HelenP.jpgHosted by Helen and Christina

Our Pod is about anything to do with MS and life in general. As we are mature ladies, we both have a lot of MS and life experience.

I was a counsellor and Christina a nurse who also worked on the MS Society helpline, so between us we have accumulated a lot of insight into the emotional impact of MS, plus the physical, financial, and environmental effects.

As a group we encourage support among our members. However, we also discuss how we do things differently, as our MS challenges us with new symptoms. We always respect each other’s opinions, giving each other time to speak, and answer questions. We do have a lot of laughter, too, I think MSers often develop a dark humour, enabling them to laugh at some of the weird symptoms, when at times we may feel like crying into our glass of wine! However a person is feeling, they can safely discuss it in our Pod. We have boundaries, meaning we keep things within our pod or WhatsApp group. So out of the Pod, you can chat on What’s App with the same ladies, and it isn’t led like the Pod. 

"However a person is feeling, they can safely discuss it in our Pod"

ChristinaY.jpgAll participants have a safe place to speak freely about themselves. Sometimes we have topics or themes – popular discussions have been the impact of MS on relationships, sex, bladder and bowel issues – nothing is off limits with us girls. Other times we just chat about our how we are feeling, or what we’ve been doing. We might talk about our pets, children, grandchildren, and art. Sometimes people want to listen and not participate, this is just fine too. We’re are also doing a six-weekly book club within the women’s pod, and looking at other ideas, possibly around healthy eating, and ways to exercise with MS, 

If you are thinking of joining our pod, you will be made very welcome. You don’t have to come every week, and it’s fine to leave early if you’re tired or the subject doesn’t interest you. We’ve all been new to a group, so we understand how it is to be the new person in. I’m sure you will leave feeling like you have a new support network at your fingertips. 

So please give us a visit on Thursdays, alternate times of 6.45pm and 4.30pm. 

 

Keeping Connected Peer Pod

Sarah.jpgHosted by Sarah

Our Keeping Connected Pod is all about having a good old chat, sharing experiences, asking questions or just listening and getting to know everyone.

There’s been nearly 30 people dropping in from time to time. Mostly there are about six to eight of us, some regulars, some new, and we chat about all sorts of things. Last time we chatted about horse-riding for the disabled, the Great British Bake-off and Masterchef, experiences with disease modifying therapies and problems with pets. We’ve even had someone demonstrate his banjo playing which was great fun!

"I would say to anyone interested in taking part but feeling nervous to just treat it as an opportunity to drop in and see how it goes"

It’s fantastic to meet MSers from all over the country now – such is the power of online technology! I think we all benefit from getting to know new people and forming new friendships. We’ve also got a WhatssApp group for keeping in touch.

I would say to anyone interested in taking part but feeling nervous to just treat it as an opportunity to drop in and see how it goes. I like to keep it pretty casual and would never put you on the spot unless you indicate you want to say something. I do hope you’ll grab a tea, coffee or your favourite drink and join us anytime between 3pm and 4pm on alternate Tuesdays. Hope to see you there!

 

EmmaRphoto_0.jpgNewly Diagnosed Peer Pod

Emma and Lisa

Hey, I’m Emma and I run the Newly Diagnosed (or, as we like to call it ‘Ready to Talk’, because you may have been diagnosed for a while but just not been ready to talk before) Peer Pod with Lisa.

We meet every Monday from 7-8pm on Zoom. There’s is no commitment to join us for the whole hour or even every week. The discussions are led totally by you and LisaWphoto_0.jpganything you would like to ask or find out about. Think of it as your one-stop-shop for friendly chat and advice. Whether it be discussions about medication choices and lifestyle options, issues that only those who have MS would understand (usually bladder and bowel related) or just what you have been up to that week, for that hour we laugh and try to forget about the reality of living with a chronic illness.

Come and join in!

We’d love to welcome you. To find out more about Peer Pods, email peersupport@ms-uk.org

Read next: Medical cannabis, restless leg syndrome and MS

Read next: Adjusting reasonable adjustments in the workplace when you have MS

Meet Karen, November's Fundraiser of the Month

Posted on: November 16 2021

karen and matthew.jpg

After seeing lots of adverts for doing a 100-mile walking challenge in October for some charities, I decided that I would like to take part in such a challenge. 

I chose MS-UK because my brother, Matthew, was diagnosed with a progressive form of multiple sclerosis (MS) two years ago, and has now had to stop doing the marathon running and walking he loves. He now has to walk with poles and a leg splint. He is also dealing with many other aspects of the condition that are changing his way of life, and I spoke to him to ask about any help he had received. After diagnosis, MS-UK were able to offer counselling sessions to help him and his family come to terms with his diagnosis and help him cope. Matthew says he can’t speak highly enough of this service and would I fundraise for them. I love walking my dog Merlin, and to have a special reason to do more walking was an easy decision to make. Karen_0.jpg

One hundred miles in 31 days doesn’t sound that much, but if you miss a day, that’s 6.5 miles the next day! I decided to try and 'bank' miles when I could, by doing longer walks so that I didn’t have to play catch up. The weather was really kind to us and thankfully we only got wet once. I completed my 100 miles on the beach at Ryde, Isle of Wight, on 27th October with Merlin and my husband.  Many friends and family joined me on walks which was great. The most special walk was when Matthew asked to join me on one of my walks. We managed three miles along the River Thames at Marlow. He is an inspiration and I am so happy to have supported him and the charity that has helped him so much. 

Medical cannabis, restless leg syndrome and MS

Posted on: November 11 2021

20210507_182339.jpgJulie Gould documents her journey with restless leg syndrome and medical cannabis

I was diagnosed with relapsing remitting multiple sclerosis (MS) in 1994. I was working as a corporate lawyer but had to be medically retired. There were no treatments back then and no one really had the internet or a mobile phone. The early days were very bleak.

I had highly active MS with two or three relapses every year. I always refused steroids as I was put in touch with several people who followed the Roger MacDougall diet and they told me that steroids didn't change the long-term outcome of MS, but that they could have serious long-term consequences.

In 2009 I asked my doctor to put me on Tysabri because my sister had done so brilliantly on it. It stopped all attacks instantly and I'm still on it as I'm John Cunningham virus negative (Tysabri can increase the risk of the John Cunningham virus infecting the brain).

Medical cannabis

I have had every possible MS symptom, but in particular, nerve pain has always been severe during my relapses. Trigeminal and occipital neuralgia are both excruciating. Desperate for relief, I sourced illegal cannabis and it helped enormously with nerve pain, so I’ve was always been aware of its power to help with pain.

I had been following medical cannabis news, so as soon as it was legalised in 2019, I would watch and search the internet for updates and information. I came across Project-twenty21 run by Professor David Nutt of Imperial College London and applied as soon as it started prescribing in 2020.

Restless leg syndrome

I wanted to try it for my worst MS symptom – severe, refractory restless leg syndrome (RLS). This is a serious neurological disease - people who have it have a three times higher risk of suicide. It's thought to possibly be caused by spinal lesions. Despite how debilitating it is, it's not taught at medical school or during GP training and so most GPs know nothing, or very little, about it. They prescribe dopamine agonists which work brilliantly at first but inevitably cause a severe worsening of the symptoms. It consumes your life. You cannot sit still or sleep as the torturous sensations start troubling you day and night. Mine affected my legs, arms, back and face. I seriously considered suicide to end the suffering.

Luckily, I found the organisation RLS UK and the knowledgeable members advised me how to safely withdraw from dopamine agonists with the help of opioids and cannabis.

Once off dopamine agonists, I was taking oxycontin and pregabalin but I still had severe RLS, with a score of 36 out of 40 on the International RLS scale. I was waking two or three times every night due to it.

I applied for medical cannabis to help with sleep and RLS UK. It gave me three to four hours of deep sleep after years of never getting more than one or two hours’ sleep in one go.

I then heard about buprenorphine, an opioid used for Severe RLS in the USA. I asked my RLS neurologist for it and he was not very helpful, but did say he wouldn't object if my GP agreed to prescribe and monitor.

My new GP was fantastic and agreed instantly. I did send her all the relevant research documents to support my case.

The results have been miraculous. I started buprenorphine six weeks ago and have had eight hours of sleep every night and zero RLS. I developed severe nausea for the first ten days, but then I remembered cannabis is used by chemo patients for nausea caused by their medication. The medical cannabis stopped my nausea. I waited a week, stopped the cannabis and the nausea had gone.

I now want to spread the word about low dose buprenorphine for severe RLS as there are tens of thousands of patients still suffering nightly torture. Most doctors are totally ignorant about how to treat them effectively. It's like MS treatment in the 1960s. Zero help and very little knowledge. Just look at any RLS Facebook help group.

I would recommend MS patients access medical cannabis as it can really help with pain, spasms, bladder issues and sleep. It's expensive, but hopefully that will reduce as more patients use the service.

Accessing medical cannabisiStock-1158372978.jpg

In November 2019, the National Institute for Health and Care Excellence (NICE) in the UK published guidance for cannabis-based medicinal products. The guidance states that a person with MS who experiences spasticity that is considered moderate or severe should be offered a four-week trial of Sativex, provided that existing spasticity medications available on the NHS are not effective.

There are conditions that must be met to be put forward for NHS funding. The drug company must be willing to fund initial treatment through their ‘pay for responder’ scheme and the person using the Sativex must show at least a 20 per cent improvement in their spasticity. This means that the drug company will fund the first four weeks (3 x10ml vials) of medication (if there is agreement for continued funding) for people who gain measurable benefit.

The other route to Sativex in the UK is paying for the medication through private prescription. Costs can vary per pharmacy and clinic, but it may still be possible to access the pay for responder scheme.

Click here to find out more about medicinal cannabis and download our Cannabis Choices booklet. 

Read next: A beginner’s guide to Spoon Theory

 

Adjusting reasonable adjustments in the workplace when you have MS

Posted on: November 10 2021

Rebecca Armstrong2this one.jpgHR expert Rebecca Armstrong explains how to ask for further adjustments if your needs change

When you have multiple sclerosis (MS) you may find that you need to ask your employer to make a reasonable adjustment to enable you to access work. Adjustments can be short-term changes to support you to get through a specific period, such as phased return to work or a permanent change which therefore becomes contractual. 

As we know, MS changes with time, either through progression or because of relapses. This means that the adjustments we need may also change. In my experience many people with MS can find it hard to ask for changes or further adjustments once an agreement is in place which can mean that they ‘make do’. It is important to know that asking for, and receiving an adjustment is not limited, you can ask for as many as you need and as frequently as is required. 

Today I am sharing my top tips around how to approach asking for a variation of adjustments

-    MS is a complex condition (you don’t need me to tell you that) which means that it can be hard for someone who doesn’t have MS to fully understand what it is like. It is useful when you are talking to your company to share some information on the condition. In this context the key is to share that over time you may need different things and there could be periods where things are worse and then better again.

-    This allows you to have a conversation about making adjustments flexible, having agreements about how you will be supported when you have bad days as well as good days. So, for example, you may have an adjustment that says you can make a decision to work from home on the morning when you wake up (rather than giving notice of it for example) so that if you are having a bad day, you can still access work. 

-    You may want to ask for regular reviews, perhaps as part of 1-2-1 discussions. This creates an opportunity to evaluate how an adjustment is working and to make changes as required. 
-    Think about what is working and what isn’t so you can be clear about what you are asking for. It’s often useful to think about the impact on work an adjustment might have so you can have this discussion with your manager. 

-    You may want to ask to be referred to Occupational Health, this can be a good way to review adjustments and to get support for changes you might want to request. 

-    Set up a time to discuss your needs, it is useful to also put your request in writing so that you have a clear follow up. 

Remember that reasonably adjustments are a right within the equality act, although they can be refused there does have to be a good case for this and you can challenge the decision through the grievance processes. 
 

“I was used to MS sneaking up with its bag of tricks”

Posted on: November 02 2021

Melissa 2020 300 dpi.jpgIn 1995, MSer Melissa Cook moved her young family to a tiny village in North Alaska with a population of less than 100

Melissa Cook lives with multiple sclerosis (MS) and spent 20 years living on the Alaskan coast and then on an island in the Tongass National Forest. She’s written her story in her new book, which documents erupting volcanoes, 100-mile-an-hour winds, needing a pistol for bear protection, and all the other dramas of living in such an extreme location, all while navigating the course of her condition and finding humour in unique situations.

Here she recounts a time when unpredictable symptoms inspired her to pen a poem.  

The Dockside Cafe sat right on the edge of a Pacific Ocean inlet in the tiny, remote community of Craig, Alaska. It had been an hour's drive into town on icy roads, and I was ready for a meal. 

I parked my truck in front of the small log cabin restaurant, held my hood tightly under my chin, and dashed for the door in the blowing snow. The waitress seated me at a table and asked if I wanted anything to drink.

"Hot cocoa, please," I said with a smile. She knew how I liked it – loaded. I looked forward to dipping the whipped cream into the hot chocolate one spoonful at a time. 

Melissa Cook 1 MB Author Photo.jpgI shivered to warm up as I looked across three empty seats at my table and watched the storm in the bay. Most of my friends worked during the day. I left teaching for medical disability more than three years ago. My friends envied my freedom, while I longed for their sense of belonging and accomplishment found in showing up for a day's work. Now, I blogged on www.MSsymptoms.me from home, alone. 

Steaming hot chocolate was placed on the table in front of me. It was perfect with its fluffy whipped cream drizzled in chocolate syrup and dotted with colorful sprinkles.

My hand reached for the spoon. Instantly, I knew something wasn't quite right. I held the spoon in my hand much like a toddler holds a crayon for the first time. ‘That's strange,’ I thought to myself. I struggled with the spoon, which felt foreign and was now upside down as I fumbled with it. 

Using my other hand, I awkwardly set it in the correct position. Several minutes passed. The whipped cream dropped from the heat, and the color bled from the sprinkles. Carefully holding the cup with both hands, I sipped my drink instead.

I never figured out how to hold the spoon that day. Though I was concerned about the odd new symptom, I was also used to MS sneaking up with its bag of tricks to surprise me. Some surprises were more significant than others, but they were surprises, nonetheless.

The next day, I woke to an empty house as usual – my husband was already teaching in his classroom. I could hold a spoon again. So weird. I sat down at the computer in my pajamas, looked out the snowy window, and decided to write a blog post. Out came the only poem I've ever written, ‘Sometimes’.

Sometimes

Sometimes, I need a little help now and then, so I have learned to ask.
Sometimes, I have pain, so I have learned to manage.
Sometimes, I am lonely now that I am on disability, so new friends I have made.
Sometimes, I miss my career, so I have learned to write.
Sometimes, I feel sadness, so happiness I choose.
Sometimes, I must figure out how to do things differently, but I still do.

Sometimes’ is in Melissa L. Cook's memoir, The Call of the Last Frontier: The True Story of a Woman's Twenty-Year Alaska Adventure (2021) is available on Amazon.
 

Lentil, lemon and spinach soup - World Vegan Day recipe

Posted on: November 01 2021

Today, 01 November marks World Vegan Day! To celebrate, we've got a tasty soup recipe to warm you through the autumn and winter months. p24 Lentil, lemon and spinach soup.jpg

Serves 2

  • 2 tbsp olive oil 
  • 2 medium onions (160g), chopped
  • 3 celery sticks (160g), trimmed and chopped
  • 1 garlic clove, chopped
  • 1 tsp ground turmeric
  • 160g dried green lentils
  • 750ml vegetable stock
  • Juice of 1 lemon
  • 160g spinach, fresh or frozen
  • Salt and freshly ground black pepper

To serve

  • A few dollops of vegan yoghurt (optional)
  • 1 avocado (160g), sliced or mashed
  • Toast
  1. Heat the oil in a medium saucepan over a low heat. Add the onion, celery, garlic and turmeric. Season with salt and pepper. Cook for 5-10 minutes, stirring occasionally, until the vegetables are soft and the onions are just beginning to turn translucent.
  2. Add the lentils to the saucepan and stir them thoroughly into the onion mixture. Pour in the stock, increase the heat and bring to a boil with the saucepan partially covered with a lid. Reduce the heat and let the soup simmer, covered, for a further 15 minutes. Stir regularly and check to see if the lentils are soft and beginning to break apart. If not, keep the soup simmering with the lid on for 5 more minutes. Squeeze the lemon juice into the soup and add the spinach, stirring over a low heat until the spinach has wilted.
  3. Remove the soup from the heat and blend with a hand blender or in a food processor until you have reached the desired consistency. Stir in a dollop of vegan yoghurt and serve with avocado on toast on the side

Recipe sourced from Soupologie 5 a day soups: Your 5 a day in one bowl by Anastasia Argent (Kyle Books, £16.99, octopusbooks.co.uk)

Introducing Emma

Posted on: October 25 2021

Hi, my name is Emma and I am the Community Fundraiser here at MS-UK, a role that I grow to love more every day! Emma photo.jpeg

My former long-term working life was in sales and management, and more recently I have been volunteering as an Age UK Befriender and an NHS Volunteer Responder and Vaccination Steward, the main purpose being to provide community support by calling the many people across the UK living in isolation, and who have little or no contact with the outside world within these recent difficult times. Lending a friendly voice and listening ear can make a big difference to the lives of those who are dealing with loneliness.

The rewarding nature of this experience has led to my career change to the charity sector, which I find thoroughly fulfilling and rewarding. At MS-UK I am truly privileged to deal with such wonderful supporters, fundraisers and volunteers who go out of their way to do such amazing things to enable us to provide our vital services.

You can contact me on emma@ms-uk.org and I am really looking forward to hearing from you!

Mogrify supports MS-UK at Ely Runfest

Posted on: October 21 2021

Mogrify photo.jpgAlessandra from Mogrify shares how they created a running team to support MS-UK

It’s a sunny summer afternoon in June 2021, and I’m wrapping up a meeting with my colleague Rodrigo. He tells me that he’ll soon be going for his evening run, and I tell him that I haven’t been running in ages. Why not? – he asks me. Busy life, little time, and perhaps lack of motivation, I reply – the last time I trained for something was 10 years ago, when I ran a half marathon for the Multiple Sclerosis Society. That’s interesting, he says – I’m really keen to do something to support people living with multiple sclerosis (MS). That’s it. We decide then and there that we’re going to do something for MS-UK, and we start looking for a running event at which we could raise some money for a cause close to both of our hearts.  

A week later we catch up again. The event is chosen and we’re thinking about how to make the most of the fundraising campaign. How about involving our colleagues through our social club, Mogrify Social Committee (MoSo)? – says Rodrigo. What a brilliant idea! Let’s go for it! – I reply. And that’s the way it all started. The initiative has a great uptake: MoSo organizes the fundraising website (and makes a donation – thanks MoSo!), the T-shirt delivery and coordinates weekly training. We’re a group of 13 (nearly 20% of the company!) and we make a video to promote our initiative. We even have a name, Los Pinatas, and a mascot! Everybody is very excited about the run which is approaching fast.  

Early on Sunday 26 September early (at least for my standards on a weekend!), we’re all in front of beautiful Ely cathedral. The weather is perfect - light breeze, overcast but no rain. We’re all fresh and raring to go. Some of us are doing the half marathon, some the 10K, everybody determined to complete their chosen task.  

We made it! All hot and sweaty we cross the finishing line, thinking whether this was our personal best or just glad it’s all over!  

With a sense of achievement, we sit down on the lawn with a lovely picnic offered by MoSo. We’re unmissable in our MS-UK purple T-shirts that promote awareness of multiple sclerosis and also attract the attention of the organisers, Ely Tri Club. So much so that they offer to donate the value of our tickets to our MS-UK fundraising page. We’re grateful and chuffed! 

Thank you to all those who’ve supported us and MS-UK. We hope that our contribution positively impacts the lives of our family members, friends and people we don’t personally know who live with MS.  

Undoubtedly you have positively impacted our lives, inspiring and motivating us to pull us together for a great cause.  

Thank you! 

Dreams come true

Posted on: October 18 2021

jane and Gilby on Belstone Tor NDSRT.jpgJane Taylor recounts the day her husband Gilby reached new heights

As we all know, multiple sclerosis (MS) is, at best, unpredictable. So, you can imagine when we first dreamt up the idea of my husband, Gilby, who has primary progressive MS, going to the top of Belstone Tor on Dartmoor – it all sounded exactly that – just a dream.

We are very lucky to live in beautiful Dartmoor, Devon, and we can see Belstone Tor from our bedroom window. Gilby sits and looks at it every day and ponders what the view might be like from the top, never thinking he would see it as he uses a wheelchair to get about. Gilby has an all-terrain mobility scooter which gets us tantalizingly close, for example to the local Nine Maidens Stone Circle. From there we sit and have a coffee, looking in awe at that magnificent tor rising above us. However, at 479 metres high, it is out of bounds even for the hardiest mobility scooter.

But neither of us had realised just how awesome North Dartmoor Search and Rescue Team (NDSR) are. We spoke to them via the local pub landlord and they jumped at the chance to help! Their plan was to get Gilby to the top using both a Land Rover and a stretcher. The tor is challenging, with plenty of granite boulders hampering the route up – this was going to be no mean feat.

Planning began

WRtfpdPA chris godfrey.jpegPlans were made for the assent by the NDSR Team. We had to sort out a few medical issues to make it possible – the team also provided a doctor for the day. That just left us leading up to the day to hope that, firstly, the weather was going to be kind, also that Gilby was going to be well enough, and, finally, that the team were not called elsewhere – not too much then! 

We need not have worried. As the day dawned, glorious sunshine spilled over the top of the tor to wake us up from our fitful sleep. We looked out the window and said “today we are going up there.” And what a day it was! So many people from the village and beyond came to support us, both in person and on live stream. It was a day filled with laughter and love, and it was so inspiring as the NDSR Team reached the top after their exhausting climb and everyone cheered.

Reaching the summit 

The view was magnificent. As we got there Gilby was so excited – he went that extra bit and asked the NDSR Team to stand him up, in order that, as he put it, he had his own two feet on the top of that tor. There was not a dry eye in the house! A couple of villagers set up a bar at the top and we all had a glass of bubbly. The occasion was capped off by the NDSR Team then carefully carrying Gilby to a granite rock to sit with me so we could cuddle up together to take in the view – awesome! It was the first time in 12 years we have sat on a rock together, and it was a wonderful reminder of our hill walking days of old.

A good cause

As a thank you to the team we set up a Just Giving page to which family and friends gave generously. Then our local BBC radio wanted an interview, which enabled us to promote the page further, together with local papers. At time of writing, we are delighted that due to the wonderful generosity of everyone – the page has raised £5,000 for the NDSR Team, which is fantastic – a small thank you for a big ask!

MS steals so much from us – both MSers and our families. Every day can be a challenge and an achievement in itself. Then days come along when you can amaze yourself and do something you thought was lost. It made us realise we must not stop dreaming. If we keep positive and look for solutions, things do happen. We have both felt we’ve remained on the top of that tor since – on top of the world! Our biggest thanks to NDSR Team for making dreams come true – you are awesome!

This article was published in the latest issue of New Pathways magazine. To subscribe to the magazine click here

Sleep tight

Posted on: October 13 2021

iStock-1182205974_1.jpgThis article is taken from the latest issue of New Pathways magazine. To subscribe click here

 

Wake up refreshed with this advice for a better sleep

We all struggle to sleep from time to time. But getting a good night’s kip is essential for everyone’s health, and especially so when you live with a chronic condition such as multiple sclerosis (MS). Try this tips for a better night’s rest.

The importance of light

Most people would agree they sleep easier in the dark. Just think how easily morning light in the summer months can cause you to wake up at 5am unable to get back to sleep. This is due to your circadian rhythm, otherwise known as your sleep-wake cycle, and it’s directly controlled by sunlight. “Your sleep-wake cycle influences your brain processes and hormone production, making or breaking your quality of rest,” says sleep expert Christine Lapp (www.sleepjunkie.com). “At night, your brain senses a lack of sunlight, triggering the production of melatonin, a sleep-inducing hormone. In the mornings when the sun rises, it tells your brain it’s time to wake up – sunlight hinders melatonin production and keeps your body energised.”

To help re-set your circadian rhythm, try and get as much early-morning sunlight (though easier said than done in the UK sometimes) as soon as you wake up. “This can include going outside for a quick stroll or merely enjoying breakfast in a sunny spot,” says Christine. “At night, keeping lights low and eliminating blue-light from your bedroom can prove powerful in helping you fall asleep faster.”

Blue light, emitted from electronic devices like smart phones, tablets and other screens, tricks your brain into thinking it’s earlier in the day, and so hinders melatonin production. And if all you wake up to is a dank sky and dark clouds, you can try faking it. “Sunlight alarms are becoming more and more popular as they simulate sunrise and sunset on a small scale. These strengthen your sleep-wake cycle and allow you to start your day a more peaceful way,” says Christine. “In more severe cases, a lightbox is required for light therapy. In these instances, it’s suggested individuals sit in front of a bright light for 30 to 40 minutes after waking up in the mornings to keep their internal clock in sync with night and day.”

No napping

When you have MS, fatigue can be very real and the need to nap is overwhelming. If you have to take a nap, try to keep it earlier in the day so that it doesn’t interfere with your nighttime rest. “Sleep specialists agree the most opportune time to squeeze in some mid-day shut-eye is around five or six hours after you wake up. However, that’s not always possible on a day-to-day basis,” says Christine. “To play it safe, always plan your naps at least five hours before bedtime. Taking a nap anytime in the five hours leading up to your bedtime can make it harder to fall, or stay, asleep.”

Ditch the drink

It is commonly believed that alcohol helps you sleep, but it actually disrupts it. “The key drawback of consuming alcohol before bed is the reduction of rapid eye movement (or REM) during sleep,” says pharmacist Carolina Goncalves from Pharmica (www.pharmica.co.uk). “REM occurs 90 into your sleep and at this stage you usually have dreams. Therefore, REM disruptions caused by alcohol consumption can lead to lower quality of sleep, leading to potential issues with drowsiness and poor concentration during the daytime.” Experts recommend you have alcohol no later than four hours before your bedtime.

Eat right

Certain foods can help send you to the land of nod. These include poultry, which contains an amino acid called tryptophan. It helps your body make the feel-good hormone serotonin, which then converts to melatonin, the hormone that makes you sleep.

Yoghurt, cheese and milk are good for calcium, which helps process the hormones that help you sleep, melatonin and tryptophan. Bananas are high in potassium which helps to keep you asleep throughout the night. They also have tryptophan and magnesium which are natural sedatives. 

Whole grains encourage insulin production that result in tryptophan activity in the brain. They also have magnesium which is said to help you stay asleep. When magnesium levels are too low, you are more likely to wake up during the night.

Avoiding caffeine in the afternoon can make a huge difference to your ability to fall asleep come nighttime, too.

Mattress matters

To fall asleep and stay asleep, your bedroom needs to be serene and comfortable. And comfort starts with the bed itself. “Living with MS can cause stresses and strains to the muscles and joints in your body,” says Carl Walsh, sleep specialist at Bed Guru (www.bedguru.co.uk). “One of the biggest changes you can make to support your body and ease the stress is to swap out your mattress. 

“Pocket-sprung mattresses adapt to your body shape whilst you sleep, relieving the pressure on your back and joints. Having adequate spinal support is one of the most important aspects of a comfortable night’s sleep. When your back is in a compromising position, your muscles will tighten, causing stress and pain. Pocket sprung mattresses help to reduce this stress, giving you a comfortable night’s sleep. Alternatively, try an orthopaedic or memory foam mattress.

“Similarly, place one or two pillows between your knees to reduce the pressure on your spine. If you sleep on your back, you can place a pillow under your knees to keep your back straight and comfortably supported. Or purchase a mattress topper as they provide great support, without the need to buy a new mattress. They have been specially designed to provide extra comfort and increased support for your spine,” says Carl.

Getting a good night’s sleep makes a world of difference to how you feel, and with a few tweaks, hopefully you’ll get your eight hours.

A beginner’s guide to Spoon Theory

Posted on: October 07 2021

You may be wondering what the term ‘spoon theory’ means, and in this blog we’ll explain what it is and how it is useful for people living with a long-term health condition, such as multiple sclerosis (MS) and those around them. iStock-1182205974_0.jpg

Chronic conditions can come with symptoms that include fatigue, and with MS there are two types of fatigue. Primary fatigue is caused by the demyelination that occurs in the central nervous system, slowing down the messages from the brain. Secondary fatigue can be a result of the other symptoms one may experience from MS. For example, disturbed sleep can be from bladder issues, pain or spasms, or fatigue may be a side effect of medications taken to aid MS symptoms.

Fatigue is more than the tired feeling that most people experience. Day to day tasks can be difficult to complete and is the feeling of exhaustion for extended periods of time. Lifestyle adaptations can be helpful, such as a change in diet, pre-emptive measures ahead of a particularly busy day or vitamin supplementation.

So, what is Spoon Theory? This term was reportedly introduced by Christine Miserando, who lives with lupus, and it was developed to help illustrate to the people in her life how fatigue feels for someone living with a chronic condition. The idea is that people without a chronic health condition start the day with an unlimited number of spoons, whereas someone with a health condition starts the day with a certain number of spoons.

Different activities throughout the day use up the spoons, and once the number of spoons for that day have been used, the only way to replenish them is by resting and getting good sleep. Getting ready for the day may use up as many spoons for as many tasks, for example, showering is one spoon, getting dressed is another. Or, if you wake up from a bad night’s sleep, you might begin with less spoons for the day than you might usually have.

Spoon theory helps the person living with MS understand their own pace and the tasks that they can realistically do in one day, whilst recognising that adjustments might need to be made. It also helps family and friends understand what it’s like to manage fatigue and how it impacts your daily life.

To learn more about MS and fatigue, download our latest Fatigue Choices booklet. From supplementation to tips on daily adjustments that you can make, our Helpline team has put this together for you to access it whenever you need to. Don’t forget, you can contact our helpline team free on 0800 783 0518 or via email at info@ms-uk.org.

Spinach and chickpea curry - National Curry Week!

Posted on: October 05 2021

This week, it's National Curry Week and we've got a warming, hearty curry recipe from the book, Deliciously Ella Quick & Easy: Plant-based Deliciousness by Ella Mills. Packed full of recipes to shake up your mealtimes, this selection of fuss-free ideas will inspire you every day. 

SPINACH & CHICKPEA CURRY copy.jpg
© Nassima Rothacker

Serves 4, with rice

  • 1 tablespoon coconut oil
  • 1 onion, finely chopped
  • 4 garlic cloves, finely chopped
  • 2 celery stalks, finely chopped
  • 250g spinach
  • 1 × 400g tin of coconut milk
  • a 2.5cm piece of ginger, peeled and finely chopped
  • 1 teaspoon mustard seeds
  • 1 teaspoon ground coriander
  • 1 tablespoon medium curry powder
  • 1 tablespoon ground cumin
  • 24 cherry tomatoes, sliced
  • 2 × 400g tin of chickpeas, drained and rinsed
  • ½ lemon
  • 2 tablespoons plain yoghurt (we use a pure coconut yoghurt)
  • pinch of chilli flakes (optional)
  • salt and pepper

 

1. Put the coconut oil into a large saucepan with the onion, garlic and celery, and some salt and pepper, and let them cook on a medium heat for 5–10 minutes, until the celery and onion have softened.

2. In a separate pan, wilt 100g of spinach with a splash of boiling water. Once wilted, add half the coconut milk and use a hand blender to blitz the spinach, so that it’s smooth.

3. Once the celery and onion have softened, add the ginger, mustard seeds, coriander, curry powder and cumin. Let the spices toast for a minute or so before adding the puréed spinach, cherry tomatoes, chickpeas and the rest of the coconut milk, plus a big sprinkling of salt and lots of pepper.

4. Turn the heat up so that it starts bubbling, then turn down to a simmer. Simmer for 15–20 minutes, adding the rest of the spinach for the final few minutes. Once the spinach has wilted, add a squeeze of lemon and the yoghurt plus a sprinkling of chilli flakes, if you’re using them and serve.