Hi, I am Diana and I have been Head of Services at MS-UK for four years now. My role is to oversee the running and development of our local and national services. These include
Earlier this year we also launched our report on Loneliness and Isolation and how the MS community has been affected by this. We are now working towards bringing the recommendations within the report to life by starting to offer online mindfulness courses, developing an online MS community and developing meaningful campaigns that raise awareness about MS. There is a lot to do but we will keep you informed with progress.
I have supported fundraising events in the past and have raised money for MS-UK by completing the Yorkshire Three Peaks a couple of years ago. I also supported my husband and his work colleague last year to complete Prudential Ride London which is the 100 mile bike ride for MS-UK. He also completed the virtual event this year for MS-UK which was a somewhat different experience!
MSer Nigel Bartram’s on a mission to make people laugh, and he needs YOUR help
I’m Nigel Bartram and I am a bit of a Multiple Sclerosis (MS) physical car crash but, thankfully, I still have my marbles and ability to enjoy life.
I was diagnosed with primary progressive MS in 2009 and the following year, my wife and I were on short cruise when I got into a smuttily funny predicament caused by the MS. You can read about it here
and so the genesis of an idea was born, how about a funny book about things which have happened to people with MS, precisely because of their MS, albeit often in retrospect?
As well as giving much-needed laughs, maybe it could raise money for MS charities. So I wrote up the first story and found a young artist to illustrate it. The book is titled MS a Funny Thing (well sometimes).
Later that year, I attended a week-long Overcoming MS retreat, during which I floated the book idea to the two facilitating doctors, one an MSer, a consultant psychiatrist, the other a globally renowned mindfulness authority. They loved it, knowing how every bit of joie de vivre is important for our mental wellbeing. You can read their endorsements on the website. I’m truly delighted that MS-UK are now supporting the endeavour too.
I need your help
All royalties from the book will go to a small group of MS charities, including MS-UK who have helped me a lot over the years with their brilliant New Pathways magazine. To make the book happen though, I need more funny stuff, which is where you come in! A pound to a penny something funny (or bizarre) has befallen you because of your MS, and I want to hear about it. It could form a story (which I’m very happy to write up for you if you prefer) or a poem. All works will be illustrated by a professional artist. As a bonus
So please, get scribbling, or just tell me you have an idea. Either way, please email me at email@example.com. If you want to see some of the stories to date, visit www.msafunnything.org
We and those around us need all the laughs we can get and MS-UK needs funds, so let’s make it happen!
I write to you today with some very difficult news. MS-UK has been significantly affected by the Covid-19 pandemic. The team have worked incredibly hard to offset the huge reduction in our fundraising income this year while adapting our service delivery to ensure no one is left to face multiple sclerosis (MS) alone. As a result, we have seen a significant rise in the demand for digital services, but our prospects for 2021 look set to be even more challenging.
Given the impact that the pandemic has had, and will continue to have on fundraising events and our economy generally, and therefore all our income streams, it is unlikely that we will have the funds to continue to operate in our current form beyond next year.
We also recognise that the pandemic has accelerated the digital agenda and presents us with many opportunities to support even more people affected by MS than ever before.
We felt it was only right to review our strategy to ensure that despite the adversity MS-UK is facing we can stay true to our values and continue to support as many people affected by MS as possible in their time of need.
However, this has led us to make some very tough decisions to ensure we can still be here in the future. After long and careful consideration it brings me great sadness to tell you that the board of trustees and management team at MS-UK have made the very difficult decision that we will no longer offer face-to-face services. This means that we will be closing our wellness centre, Josephs Court. We do not wish to leave our clients unsupported, who we know will be as upset by this news as we are, so we will be working with our clients to establish how we can best support them through a transition period to online services.
We remain committed to supporting people affected by MS both nationally and locally. We will work with the MS-UK steering group to explore how we can not only continue the remote services that we have provided since the pandemic began but also how we can expand our online services so that, in time, we may offer a wider range of digital services to provide holistic support to even more people affected by MS than ever before.
We know that Covid-19 isn’t going to go away overnight and the country will be dealing with the repercussions for months and even years to come. The road ahead is uncertain and we will continue to consider every available opportunity with the best interests of the charity and the people we support at heart.
Setting herself a mammoth challenge, Rhona Kingett completed her own accessible marathon
As I looked through my emails one day, I came across one about of doing a virtual marathon for MS-UK. It suggested taking a challenge for 26 days, or 26 times, or anything relating to the 26 miles of a marathon, due to the postponement of the Virgin Money London Marathon.,
When young I was a bit of a long distance runner. Never to the extent of running marathons though! I actually put my energies into dancing rather than running, and I became a professional actor, dancer and musician. Unfortunately as my career progressed taking me upwards, the multiple sclerosis (MS) progressed and took me downwards. The MS won and it overtook the work.
I tried to think of how I could get the virtual marathon idea to work for an MS-UK fundraiser. My MS has moved onto secondary progressive about three years ago. I was diagnosed with relapsing remitting MS in 1994. My legs no longer support me and I get hoisted between the bed and my wheelchair. I have bad spasms and I’m supposed to do all sorts of physio exercises but there are so many and my body doesn't do what I tell it to do.
Somehow I let these exercises slip. Then it suddenly struck me how I could do a virtual marathon that would help both me and the charity. I would ask people to sponsor me to do my physio exercises on each of the 26 consecutive days. My husband (my full-time carer) would be making sure that I really do them. The hope being that, once I’d fitted the exercises into my daily routine, I would continue with them.
I sent the link for the sponsorship out on Facebook and Twitter. When money started being pledged by people I realised that I had to do what I had said I would do. But after a number of days, I found that there were certain movements that became easier to do – indeed I increased the number of repetitions of some. That was another encouragement. It made things easier for me and also for my husband. More encouragement.
I sent updates to my social media contacts. Some of these shared them, either electronically or just verbally, which led to further sponsorship donations.
I was pleased to see the money coming in, and therefore the amount available for MS-UK to use, going up. Not just because it showed what supportive friends I have (I knew that) but because I knew it meant MS-UK could give more support and information to people and families who have had the news that ‘the MS monster’ has come into their lives.
To contribute to Rhona’s fundraiser, click here
This evening we should have been getting ready for a night to remember at MS-UK’s annual Summer Ball.
It should have been a busy week for the fundraising team assembling prizes donated by many generous donors and businesses for our raffle and auction and getting all the finishing touches ready for a very special evening.
Each year we welcome around 150 lovely supporters for an evening of fine dining, fun and great entertainment in glamorous style at the luxurious Le Talbooth in Dedham, Essex near MS-UK’s home town of Colchester.
Every year, this black-tie event raises thousands of pounds for MS-UK so we can continue our work supporting people affected by multiple sclerosis.
Last June, we raised over £16,000 at our Summer Ball which is enough to fund our national helpline for over six weeks, providing vital information and emotional support to empower anyone that needs it.
Unfortunately, due to the pandemic and like many other events, the ball has been cancelled this year. This is a huge shame for both our guests who are missing a great night out and our fundraising.
If you would like to make a donation to our urgent appeal to help us at this difficult time, we would be most grateful. You can donate at www.justgiving.com/campaign/MS-UKAppeal.
One day we shall go to the ball and we are already looking forward to making the MS-UK Ball the biggest and best ever in 2021.
The date planned for 2021 is Friday 17 September 2021. If you would like to find out more information about the event please contact me on 01206 226500 or email Jill@ms-uk.org
Thank you for your continued support.
Stay safe and well,
MS-UK Fundraising Manager
Jessie Ace on how she's found purpose thanks to her diagnosis
You might remember reading my story back in March 2019 (issue 114 New Pathways page 14, How you react to your situation defines you as a person) where I explained how I’d been diagnosed ages 22 just after university.
I’d studied for three years on a design craft degree, and I’d set up a business in my second year as an illustrator. I’d worked so hard to build that business to make sure I had a way of earning money when I left. I had an agent ready to represent me at trade shows worldwide, I had a children’s book deal, and I had my work ready to be stocked in boutique stores all over the UK. Life never goes to plan, though, does it?
Things didn’t start to get better till about four years after I was diagnosed. Luckily my left side came back, and my right hand that also lost feeling a few weeks after my diagnosis came back too. But by that time, I’d lost all confidence in myself. The agent, book deal, and boutique stores all disappeared. I felt like I‘d lost who I was. I didn’t trust my body anymore.
It wasn’t until I joined my then-fiance and started our wedding advice business for brides to be that I started sharing more of my story. Until this point, I hadn’t told anyone about my MS. Brides started asking me for help with how to plan their wedding around their illness. It was at that point I realized my story could help someone else.
Now, seven years after my diagnosis, I build my confidence, and now I do things I never thought I would.
Somehow, unconfident, shy little me is the host of the DISabled to ENabled podcast, interviewing famous radio DJ’s, Paralympians, celebrity chefs, CEOs, and people who, like me, got a diagnosis and found a way to help others.
Even the ENabled Warriors in our Facebook group get involved in asking questions, which I love.
I’ve now worked with the biggest MS charities; writing, illustrating and sharing my story, and talking about the things that don’t get said. My words and illustrations help to inspire others with chronic illnesses live their best lives, filling the internet with positivity in case doctors say, as they did to me, to ‘go home and google it’.
The thing I’m most proud of is that I’m now an author! I created the ENabled Warrior Symptom Tracker to help people with chronic illnesses track and manage their symptoms and lifestyle. It also enables you to keep accurate symptom records so you can access the best possible treatment. I’m giving a donation to MS-UK if you order it here Order symptom tracker
Waking up with a numb left side gave my life purpose and meaning. I decided to turn around in that negative state and chose instead to be the change I wanted to see in the world.
I would love to find out about your diagnosis story, so please get in touch with me. Find me @DISabledtoENabled on Instagram or in our Facebook group ‘ENabled Warriors’. Make sure to catch my live Instagram videos.
I don’t like the term ‘DISability’, find what why on www.JessieAce.com.
Sarah Cant’s MS nurse recommend she try MS-UK’s Counselling service
I have had counselling before for depression, but being diagnosed with multiple sclerosis (MS) is something of a shock! It was recommended by my MS nurse, so I looked it up on MS-UK’s website and it seemed like an excellent idea. The weekly sessions by phone, with a voluntary contribution, were very helpful. I knew that a good counsellor doesn't tell you what you should do, but helps you think about how to see things differently and cope with life.
Obviously 2020 has been a completely different kind of year. I postponed my first appointment as my husband was ill, the week before that he had been admitted to hospital and the Prime Minister had announced lockdown, so I was overwhelmed. But I was glad to have this opportunity to learn to cope better, as well as coming to terms with MS.
I have reduced my Prozac. I have been making an effort with friends, calling and texting more. I am learning to be kinder to myself and others, so hopefully my husband benefits too.
Society has started to learn the importance of good mental health. The service by MS-UK is excellent. I guess in a way that I am used to living with a disability or chronic condition as I have been deaf from birth, but I have learnt some new ways to cope.
Click here to find out more about MS-UK's Counselling service
Michelle Fanning explains how counselling helped her get her life back on track
The reason I sought counselling with MS-UK was because I was suffering from anxiety and depression.
I had lost my zest for life. I was feeling sad crying all the time and not looking after myself. I was in a very dark place and I did not like the way I was feeling. I knew that I needed professional help and support to enable me to get better. I desperately wanted to be myself again and get my mojo back.
I was offered counselling services by my GP and my workplace, but I was reluctant to take them up as I had an underlying fear that things may be shared with my employer. Anxiety can cause you to feel paranoid and mistrusting. I know that this would not be the case as counsellors are bound by confidentiality and would only breach this if there are safeguarding concerns, but this was how I was feeling at the time.
I wanted to use a service that was completely independent and I found out that MS-UK offered telephone counselling, which I signed up to. I was fortunate that they were able to offer me an appointment a few weeks later with a counsellor.
My safe space
I found the counselling sessions offered such a safe space. I was able to talk about how my anxiety and depression impacted on my life.
It was valuable to have someone who was non-judgement and had a good understanding of mental health issues, and how stressful situations can impact on multiple sclerosis (MS) symptoms and cause relapses or flares.
The counsellor used cognitive behaviour therapy and provided me with strategies to help me better manage my anxieties and depression. We worked on short-term goals, for example, the importance of self-care and daily routines and then explored some longer-term goals.
The biggest changes that I experienced as a result of having counselling was the feeling of having some of the weight lifted of my shoulders. I had been carrying around these feelings for a while and felt lighter just by having someone I trusted to talk and share my inner feelings with.
The counsellor helped me look at the underlying issues which caused my anxiety and depression and then gave me the tools to enable me to cope and manage better. My confidence had been affected and we explored my strengths and I started to feel more positive and began to value myself again.
I know that it is going to take time to fully recover but I am hopeful that one day I will. This will all be in the past and I will have a brighter future.
My family noticed the changes in me especially when I was making the concerted effort to get out of bed each day. I had started to take care of myself and was washing and dressing.
My appetite improved and I started to eat regular meals and gained weight. I stopped isolating myself and started to go out of the house and became more active, even if it was just for a short walk to the park to get fresh air and connect with nature. I was no longer crying and my family said I appeared more cheerful in my mood. The darkness of the depression was starting to lift. The changes in my mental and physical health became noticeable to those closest to me.
My relationship with my children improved as they could see the effort and I was trying to make and it made them feel happier that I was trying to get better. I had found a church where I was able to forge new relationships and receive spiritual healing and reconnect with God. My life was beginning to get better and new opportunities were arising.
I would say to some with MS and who is struggling to cope to please access the MS-UK Counselling service. There is no need to suffer in silence and feel alone, there is a saying “a problem aired is a problem shared”. Just pick up the phone and get the help you need.
Click here to find out more MS-UK Counselling
As the mercury looks set to climb again this week, Martin Baum recounts his struggles during the recent heatwave
Picture the scene. To say I’m overheating would be an understatement. I am literally dripping in my own perspiration and it just won’t stop.
For almost 40 years I have endured fatigue, speech and sight issues, as well everything else that goes with having multiple sclerosis (MS). Disconcerting, then, that I found myself at 5.30AM in the morning recently on the kitchen floor, completely starkers (as you do), door open, overwhelmed by pulsating beads of sweat that refuse to abate no matter how vigorously I try to towel myself dry.
Fortunately, though, my wife Lizzy was there to calm me and sponge me down for almost an hour. Some might say lucky me and, in different circumstances, I might agree. I don’t doubt the recent heatwave was a major contributory factor but, nevertheless, the feeling of not being able to find an off switch for my body thermostat was very distressing.
But Lizzy’s a practical woman who not only knows how to reassure a percolating stark-naked man but also, thankfully, how to Google heat sensitivity with MS.
Here is what she found.
‘MS damages the protective sheath around nerve cells in your brain and spinal cord. This slows down nerve signals so your body doesn't always respond the way it should. Heat can slow these signals even more. MS can also affect the part of your brain that controls your body's temperature.’
It was difficult for me to process that information along with the birdsong that informed me that morning had broken. But then, as I have found, being an MSer brings with it a myriad of surprises, or should that be challenges, that make life that little bit more character building.
Over the years I have learned to live with mixed brain signals that have fooled me into thinking that a bowl of hot soup was cold. Or times when my brain had hoodwinked me into thinking that walking backwards instead of forwards was a better idea. So now these transmission glitches that cause me to seriously overheat can be added to my MS martyrdom.
But I am far from down, and nor do I consider myself a lost cause. We’ve bought cooling gel pillows and a high-tech fan for the bedroom, so next time the mind wants what the body can’t give, it won’t be through lack of trying!