'I was contacted by Molly from MS-UK regarding donating a prize for their first virtual auction. We were of course delighted to donate a case of our World’s Favourite Wine Selection in order to help raise funds and support such an important charity and 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, one from each of the big beasts of the wine world including a Pinot Grigio, Cabernet Sauvignon, 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 a bottle of Peculiar Mr Pat, Punto Alto Malbec, Sierra Grande Cabernet Sauvignon, One Chain 'The Googly' Chardonnay, San Antini Pinot Grigio and Whale Point Sauvignon Blanc.
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.'
'I was contacted by Molly from MS-UK to donate a prize for their first virtual auction. Experience Days provides thousands of experience gifts across the UK, from bungee jumping to spa days - so no matter what your giftee loves to do, you’ll find something for them.
We have a long history of engaging with and helping charities with auctions and events, donating our vouchers as prizes – so we were only too happy to join in! MS-UK is a cause we have followed and donated to in the past; supporting those with multiple sclerosis with a range of resources, MS-UK is an essential charity and one we are proud to support. We hope that our donation to their virtual raffle goes some way to help this worthy cause.
We wish MS-UK the best of luck with their virtual auction!'
Martin Baum explains how an MS-induced UTI may actually have been a fortunate thing
The conversation with my sister went as follows, “This morning I had urodynamic testing on my bladder. In a couple of weeks, I'll be going into hospital for a prostate biopsy to check the status of a nodule and, at the same time, to have a prostate rebore, also known as a HoLEP procedure, to remove a lobe which is blocking my bladder.”
That was a conversation I never thought I would have, but then, to paraphrase Forest Gump, “Multiple sclerosis (MS) is like a box of chocolates. You never know what you’re gonna get.” Ironic, really, that after living with this condition for 40 years I thought I totally had the measure of it. I wasn’t even close.
This whole rigmarole began in May after I contracted a urinary tract infection (UTI) which triggered a series of events that led to a scan and, ultimately, an appointment to see the urologist. An MRI confirmed I was retaining more than I was expelling from my bladder, which led to me having a urodynamic assessment to test the flow and spasms of the muscle in the wall of my bladder.
While the prostate element is as unrelated to MS as it gets, after reading the results of the MRI scan, my urologist thought it wise to operate on the prostate and carry out a biopsy at the same time. This would enable him to not only analyse and, fingers crossed, rule out any potential cancer scenario, but also to remedy a long-time blocking of my bladder, which hitherto had always been put down to muscle spasms related to MS.
Up until this point I’d like to believe I have been fortunate in my relationship with MS. Despite the many varied symptoms I have had to endure, I know I have been spared from too much invasive meddling from doctors and neurologists, although I now consider myself to be a veteran of the prostate test, having had four inside one year. In these very strange Covid times, where we are constantly being told that “lessons have been learned”, I realised (and perhaps not for the first time) that I cannot blame MS for everything.
I cursed the blasted UTI when it came. It took several weeks for the antibiotics to neutralise it. But, because of it, come September – and yes, I’m counting down the weeks – I will finally be able to wee unimpeded. Also, the detection of a nodule that – had it been left undiscovered – could have multiplied into something more sinister and far greater, is enough to put MS in the shade.
The botty doctor, as I now affectionately call my urologist, is going to return a sense of normality to me. Also, what I consider to be good news – yes, there really was good news, well, to me, anyway – was being told that because of MS, my prostate will remain in situ, as removing it runs a high risk of incontinence. Oddly enough, given all I am about to undergo, knowing I was holding on to my prostate actually lifted my mood.
Yet I am under no illusion how painful this is going to be. No pain, no gain is an exercise motto for anyone who works out in a gym but, for the duration of my operation, and recovery, this is a saying I’ll be proudly (if not a little bravely) claiming as my own.
I work for the print company Penrose Group, and the company has supported charities for several years, with donations and supporting charities with their printed marketing assets.
The culture of the company, supporting others, inspired me to take up this cycling sportive challenge. I have close family members with MS and friends with family members with learning disabilities. I wanted to help them all and opted to split all the donations equally.
Dramatize, located within walking distance from Penrose Group, provides vital support for adults with learning difficulties. At Penrose Group, we believe in supporting our local and the wider community. Raising funds for Dramatize is helping our local community, and sharing the funds raised will support MS-UK provide their services nationally, and I know I will be helping my friends and family.
To date, I have completed three sportives - 100-mile Rutland Border Epique - who starts with hilly 100-mile? The flatter, 75 miles, Giant Sportive Doddington Sportive.
My third sportive destroyed me. The 70-mile, off-road Surrey Hills Epic tested my resolve to the limit on one of the hottest days in July (17th). Mountain biking is new to me, and I assumed the course would be pleasant bridleways, cross picturesque fields and gentle winding hills. I could not have been more wrong. Aggressive hill climbs, uneven tracks, sharp twists, and turns through the Surrey jungle repeatedly throw me off the bike. Thankfully the hedges broke my fall. The thrill of the descents terrified me and bought back happier memories of my childhood on a BMX hurtling down the hills where I grew up in Leicester. I sustained a few cuts and bruises, but they were worth it.
I have added another 100-mile Sportive to my original four rides - the JETRide Sportive. The JETRide Sportive starts a couple of miles from my front door, at RAF Cranwell. I thought it would be rude not to include this, being so close to my home.
My final sport is the 99-mile route of the Lincoln Le Petite Sportive in Sept 2021. In Sept 2019, the Lincoln Petite was my first sportive (I started cycling in June 2019), over 700 cyclists, and I came in last. I was so far behind that they began to pack up the finish line the minute I crossed the finish line. I'm determined not to finish last this September.
There is a rumour that I may add the 105-mile Lincoln Grand Prix Sport in Oct 2021; I'll keep you posted if I add this event.
If you would like to donate, please click here.
Is MS linked to a retrovirus? Ian Cook shares some very interesting research
One of the perks of being a freelance journalist is that people ‘tip you off’ about interesting new developments in multiple sclerosis (MS) research. These tip offs are often stories ignored by the mainstream medical press.
One tip-off that came to me recently was a phone call from another MSer telling me about an academic paper titled ‘HIV infection and multiple sclerosis: a case with unexpected ‘no evidence of disease activity’ status’. The paper was published in March in the Journal of International Medical Research.
The paper outlines the case of a patient diagnosed with MS who saw his condition substantially improve following subsequent HIV infection and treatment. The patient achieved No Evidence of Disease Activity (NEDA) without any MS disease-modifying drugs and continues to have no disease activity more than ten years after being first diagnosed. The authors speculate that antiretroviral therapy, which the man is still taking for his HIV, may be responsible for his MS ‘disappearing’, with the HIV medication perhaps treating his MS as well.
Human endogenous retrovirus
Of course, MS is not a retroviral infection like HIV so what is going on? One theory is that this patient’s MS, and all MS, is caused by something called a HERV or human endogenous (inherited) retrovirus. HERVs share similarities to retroviral illnesses like HIV and thus respond to HIV drugs as is shown in the above study.
Not a lot is known about HERVs but basically, they are remnants of retroviral infections which infected our ancestors and which entered our DNA, being inherited by subsequent generations. In everyone’s DNA there are hundreds of HERVs. Amazingly HERVs make up around 8 per cent of the human genome and several disorders are thought to be associated with the re-activation of HERVs. The ‘MS-HERV’ theory hypothesises that under certain circumstances, like infection with another virus (Epstein Barr virus for example), HERVs can spring back to life causing illnesses like MS. HIV drugs, being anti-viral, help keep these HERVs ‘under control’ in the same way that they keep HIV under control. This is what is assumed was happening in the 2021 case study.
Interestingly the 2021 case study is not the first one where a patient taking anti-retroviral drugs for HIV saw a disappearance of MS. A case report was published in 2011 in the European Journal of Neurology saying the same thing. It was titled ‘Could antiretroviral drugs be effective in multiple sclerosis?’ and outlined the case of an Australian man with HIV and MS who also experienced a marked improvement in his after taking anti-retroviral HIV drugs. The 2011 Australian case study led to two important developments in exploring the theory that a HERV could be involved in MS.
First, a 2015 survey of people with HIV found that far fewer of them had MS than would be expected. The thinking was that the HIV drugs used by patients who had both HIV and MS were also treating the patients’ MS like in the two case studies already mentioned.
Secondly, in 2019, an anti-retroviral HIV drug raltegravir (Isentress) was tried out on a small group of MSers. Sadly, raltegravir did not lead to any improvement in the MSers’ condition. It was later suggested that ratelgravir was the wrong HIV drug to use on its own. This idea makes sense because HIV patients like the above two take a ‘cocktail’ of drugs, sometimes ten or more, and choosing the right anti-retroviral drug or drugs would obviously be crucial to success.
As far as I am aware there is no current project to try out other HIV drugs on MS. But I emailed the March paper to Prof. Julian Gold, who led the raltegravir trial and published the 2011 case study. I asked him for his view. He said he would send the 2021 paper to his colleague, Professor Gavin Giovannoni from London University and that he was personally still ‘very committed’ to the concept of viral or HERV involvement in MS although he acknowledged that research in this area is ‘very sporadic.’
Hope for the future
Sporadic, of course does not mean non-existent and there is some work going on right now exploring the idea that HERVs and MS are connected. A bio-tech company based in Switzerland called Geneuro is currently pursuing the HERV theory for treating MS but using a drug it has been developed specially rather than using an existing HIV drug like Gold did in his 2019 trial.
Geneuro recently announced that enrolment of MS patients had been completed for a 48-week Phase 2 study of temelimab, a drug it has developed to treat the ‘MS-HERV’. Results are due to be reported in the first three months of 2022. This is certainly something to look out for next year.
In the meantime I shall look out for further stories similar to ones published in the European Journal of Neurology and the Journal of International Medical Research. There is a steady stream of these stories, and it’s a shame that so few MS researchers give them the attention their investigation so richly deserves.
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Did you know that disabled people face extra costs of around £583 a month? On average, a disabled person’s extra costs are equivalent to almost half of their income and according to research carried out by the charity Scope, money spent by disabled people does not tend to go as far. So, maximising income and using all entitlements can help make sure your finances are looked after as much as is possible.
Our welfare benefits system is an important part of giving disabled people some financial security and a degree of financial wellbeing. Claiming the right benefits with the right premiums can allow people to exercise choice and control over their support and the way they live their lives.
In this blog, we look at a variety of ways to either make sure you are receiving what you are entitled to or ways to save money by accessing specific schemes available to you.
Navigating the benefits system can be a complex and often lengthy task. Knowing how to find out what you may be entitled to can be difficult. That is where the handy online benefit calculators can help. They are only available to those living in the UK.
There are three main independent benefit calculators that can help you, to find out what you may be entitled to, and how to claim for them. They are free to use and are anonymous. They vary slightly in the information they can give you. For example, Turn2us does not give information on contribution-based benefits whereas the others do.
entitledto gives information on income-related benefits, tax credits, contribution-based benefits, Council Tax reduction, Carer’s Allowance, Universal Credit and how your benefits will be affected if you start work.
Turn2us gives information on income-related benefits, tax credits, Council Tax reduction, Carer’s Allowance, Universal Credit and how your benefits will be affected if you start work or change your working hours.
Policy in Practice gives the same information as entitled to, but also tells you how the benefits are calculated and how they will be affected if you start work or change your working hours.
To complete the calculators, you will need to provide information on any savings you may have, household income, existing benefits and pensions (including anyone living with you), your outgoing bills (such as rent/mortgage/childcare payments), a council tax bill.
Circumstances can mean that sometimes extra funds are required to help with things such as adaptations, mobility aids, new technology and equipment, to name but a few. There are grant funds available that may be able to help. Grants are not normally repayable and occasionally you may need to work with an intermediary organisation such as Citizens Advice or your local disability support charity.
Turn2us has a helpful search tool that can find potential grant funds. Using the filters on their search function you can search by occupational grant-giving bodies, disability charities and organisations that are local to you.
MS Research and Relief Fund offer financial assistance specifically to those affected by MS.
Disability grants is a website that provides a guide to grants for the disabled. You can narrow down your search to be more specific, such as a grant for disability equipment, including wheelchairs, adapted vehicles, trikes and bikes, computer and assistive technology grants.
Finding insurance that provides you with the right type of cover, whilst being affordable, can prove to be complex. This is especially so for those affected by a registered disability such as multiple sclerosis (MS) and applies to all types of cover. For example, with home insurance, you may have specific expensive items that you need to be covered for accidental damage, such as stairlifts, and your medical condition may lead to an increase in your travel insurance premiums.
It is important to be aware of issues that you may need to consider, whether that be when you are looking for a brand-new policy or how to deal with any changes in your medical circumstances that could affect your current cover.
MoneyHelper formerly known as the Money Advice Service is powered by HM Government and provides a detail-rich guide to obtaining insurance if you are disabled or ill. This guide looks at your legal rights, highlights things to consider when buying insurance and how to challenge decisions that you feel may be discriminatory.
Insurance and MS is an informative guide provided by the MS Society which looks specifically at issues that people affected by MS should consider, from types of policy and cover they provide to what you should tell insurance companies when disclosing your condition.
If you live in Scotland, Wales or Northern Ireland your prescriptions will be free, but if you live in England the cost is £9.35 per item. Some people qualify for free prescriptions if they are eligible for a medical exemption certificate. One part of the eligibility criteria that may well apply to some people living with MS is that if you have ‘a physical disability which means you cannot go out without the help of another person’ then you should be eligible for an exemption certificate.
Most of us have heard about the ‘pink pound’, but do you know about the ‘purple pound’? This is the spending power attributed to disabled households in the UK and amounts to £249 billion a year. Research has shown that disabled people are overspending in many areas compared to non-disabled people. We know that people may need a little extra help when making sure they have as much choice as is possible in how and where to spend their purple pound.
If you want to be able to make sure your disability-related expenditure is money well spent, then it would be good for you to know about the Research Institute for Disabled Consumers (RiDC). RiDC is a user-led research charity, run by and for people with a lived experience of disability. They give practical information for disabled and older people, whether that’s information about being at home, or out in the community and all based on independent unbiased research. They have guides on buying mobility scooters, getting mobility scooters into cars, driving with a disability, specialised hand controls in cars, stairlifts, home adaptations, accessible bathing and showering and even washing machines!
Whilst planning purchases for often expensive independent living aids and trying to make all the pennies stretch as far as you can it is also worth knowing about Living Made Easy. Living Made Easy is a large and trusted online comparison site for sourcing daily living equipment, disability aids or assistive technology. The website is designed and run by the Disabled Living Foundation (DLF) which is a national charity whose purpose is to provide independent advice about independent living for people with a disability, older people, their carers and families. You can search for products, get advice and find the cheapest national retailer.
It is important to know and remember that if you're disabled, the Government says you shouldn't be charged Value Added Tax on items that have been designed or adapted for your personal use – e.g., specialist mobility equipment to help you get around. As this includes products specifically made for disabled people, your supplier, installer or tradesman shouldn’t charge VAT. Your supplier will usually ask you to sign a declaration form stating the item is to be used by a person with a disability.
Do you like movies and the cinema? Do you get PIP? You could well be entitled to a CEA card from the UK Cinema Association. The card enables a disabled cinema user to gain a complimentary ticket for a person to accompany them when they visit a participating cinema.
The Warm Home Discount scheme requires big energy suppliers (by law) to help vulnerable customers in England, Scotland and Wales to pay for energy. Those who are eligible can get £140 off your energy bill. Although the money is not paid directly to you, it is a discount/rebate on your energy bill, between October and March. To be eligible for the scheme you must be on a low income or receive the Guarantee Credit element of Pension Credit. It is suggested that you first speak with your energy supplier to see if they are part of the scheme. The Warm Home Discount also has a helpline that may be able to help, they can be reached on 0800 731 0214.
If you need independent financial advice over money matters for some of the bigger things in life such as making the most of a lump sum of money such as a life insurance pay-out, redundancy payment, an inheritance or planning your retirement, Citizens Advice has some great information. These web pages tell you all about the different types of advisors and how to check they are qualified and registered with the relevant bodies.
There are many other schemes out there, if you have accessed one that we have not mentioned, please do email our helpline with details as your information could help others. Email firstname.lastname@example.org
As I prepare to embark on my 3rd and 4th marathons respectively, the biggest difference this time around is just how much this particular charity means to me. The training is never easy and the marathon itself is hardly a picnic but the cause, which is so very close to my heart, will keep driving me on all the way to the finish. Yes, there is a small matter of 26 miles! Or 52 in my case! However, this is a small distance to cover in comparison to the much bigger objective of doing all I can to help the charity, my cousin and all her fellow MSers. Nothing will stop me.
I have often been told that I have an infectious energy and enthusiasm, and perhaps that goes some way to explain why so many people around me have also now become so passionate about multiple sclerosis (MS) and fully embraced the cause, which has been very heart-warming to see. It is also helping raise awareness about the condition and the charity, as well as much-needed funds. Long may it continue.
In such unprecedented times, there have been a few obstacles in terms of how to fundraise. However, I am a strong believer that every challenge presents an opportunity and I love a challenge, especially when it is for such a fantastic cause. This pandemic is a great reminder of the importance of togetherness, helping others, being kind and I want to do absolutely everything I can for MS.
In previous fundraising, I was able to generate money through selling clothes, footwear, food, and drink primarily to my colleagues at work. This not only helped clear out my wardrobe but also helped me test and hone my baking skills. Lockdown means I am now hoarding a lot more stuff and eating all the sweet treats myself, but I am sure it is all good fuel for those long training runs…?
Kids and dogs are good and are certainly having the desired effect, but you just can’t beat the impact of alcohol. I like a drink and I like even more encouraging others to drink, particularly when I know those strings on the wallets and purses become that bit looser. As a salesperson, I must admit that I have won many a deal courtesy of wining, dining, and dancing (maybe less so with the latter, as my dancing is an acquired taste). So, it would be silly not to apply the same tried and tested approach to my charity fundraising. I am actually spending more time talking to customers about the charity than what I selling. I hope my boss doesn’t read this!
The event itself is just a sideshow, a reason to fundraise, but for me, this is all about this wonderful charity and making a difference. Just over halfway through another eventful year, I am determined to make 2021 live long in my memory for all the right reasons, which for me is all about supporting MS.
Inspired by Emily's story, you can make a donation to her fundraising page by visiting her JustGiving page here.
World Breastfeeding Week (1-7 August) is just around the corner and we have a piece from Elissa Benson, National Childbirth Trust, Breastfeeding Counsellor and Chartered Neuro Physio talks breastfeeding and MS.
There is a lot of information already out there in the public domain that can inform a mother when it comes to making a decision about breastfeeding and there is no reason why a mother with multiple sclerosis (MS) shouldn’t breastfeed if she chooses to. Her MS isn’t going to affect her milk supply and she isn’t going to transmit it to the baby. It’s also worth noting that some research shows that MS mothers who exclusively breastfeed are almost half as likely to suffer a postpartum relapse.
A matter of medication?
Some medications are not intended for use when breastfeeding. The best thing to do is consult with your neurologist or MS nurse, who will be able to advise you based on your MS. Some women opt to delay using medication so they can breastfeed, or some women feel the medication allows them to look after their baby and that’s the priority for them. Some mothers express milk in advance, so they can feed their baby while taking an intensive five day course of steroids. They do have to continue to express throughout those five days to maintain their milk flow and to be able to feed baby afterwards. It’s a very individual choice, it depends on the medication you’re taking and the stage of your condition at that moment in time. Just because you are on medication doesn’t mean you can’t breastfeed, but there will be decisions to make.
To find out more information about which medications are, or are not compatible with breastfeeding by visiting the Breastfeeding Network website.
Don’t be too hard on yourself
Under normal circumstances mothers have to make all kinds of decisions about breastfeeding, and for some mothers with MS their options are more limited, so actually dealing with how you feel about that is really important. That’s where we, as breastfeeding counsellors, come in. We can help mothers explore their options and how they feel about it. It’s an aspect that can often be lost because when you are dealing with the practicalities you can forget to deal with feelings.
Being a new mother is stressful for anyone and if you have concerns over feeding your baby, that can add to the stress. It’s part of our role to help mothers manage their situation so that it can be less stressful and doesn’t make them worse. We all know that stress can exacerbate MS.
Find the right position to feed your baby
A further challenge may be a woman’s physical ability to position themselves properly and support their baby’s weight through a feed. Some women might have a loss of core control, which can be caused by MS but also because they have just been pregnant. Putting together these factors could limit their postural control which might affect the positions they are able to effectively use to feed their baby.
Similarly, arm strength or tone may be an issue. Do they have the arm strength to support their baby? Do they have tonal issues that might effect that? And again, that is why some individual support from someone experienced would be really useful.
Laid back breastfeeding, using a baby led approach may be a good option to explore. Basically instead of the mother trying to attach the baby, they just let the baby do it themselves because they are pre-programmed to do it. There are lots of different positions to try, but if you are able to access that individual support it can help you find a position that works for you and your baby.
Dealing with fatigue
Fatigue is a big issue for any new mother, but having MS can make it a lot worse. Having had a baby, you are entering a new phase in your life where you are going to be sleep deprived and your normal sleep pattern disrupted, meanwhile your body is also trying to recover from pregnancy and birth. Managing fatigue is very important, but it is also worth knowing that the hormones that are released when you’re breastfeeding are the ones that help your body return to its pre-pregnancy state.
Often women tend to view feeding baby as a chore and therefore tiring, but actually if you can get a good position for you and baby, if you can get them to latch themselves, you can use it as an opportunity to sit and rest. New-borns feed 8-12 times every 24 hours, so it’s much better if mothers associate feeding baby with resting. This way of looking at it helps with the physiological part of fatigue and then it’s just about the practicalities – making sure you’ve poured yourself a drink, you’ve got your phone and the remote control – and then you can stay sat down. It’s also about managing the support network you have around you, so you can prioritise breastfeeding in those early days.
Managing night feeds could mean that mum goes to bed and when baby needs feeding, their partner, mother or whoever is there to support, gets up and brings the baby to mum, she feeds and then they put settle the baby back down. That way mum doesn’t even need to move, so it’s a really practical solution to this sort of issue.
To discuss your breastfeeding options and find an NCT drop-in session, you can call the NCT Breastfeeding Counsellors Helpline on 0300 330 0700, or visit www.nct.org.uk
Kirsty is a designer who received her diagnosis of multiple sclerosis (MS) whilst completing her degree. Here, she shares her story, the ways she coped with her diagnosis and how it has influenced her work.
Please tell us a bit about your diagnosis – what were your symptoms and what happened?
I was in my third year of a Jewellery and Metalwork Honours Degree at Duncan of Jordanstone Art School in Dundee when I had my first symptoms. My left eye became painful to move left and right and my vision in that eye deteriorated quite rapidly until I couldn’t see anything. Also my gait was way off, I couldn’t walk in a straight line and I was so tired. These symptoms escalated and I was admitted to hospital, I didn’t really know what was going on, I was in a dream like state, which I am quite thankful for as I can’t even remember having a lumbar puncture! MS was mentioned as a possibility at this time but the doctors seemed pretty sure it was another condition called A.D.E.M, which is like MS but it just hits you once and never comes back, so I didn’t even consider it would be MS! I was then diagnosed about six months later after experiencing slightly blurred vision, twitchy nerves and having a couple of MRI scans. Even though MS had been mentioned I really didn’t expect it, so it came as a massive shock!
Tell us about your design work – what do you make and how did you come by the idea to do this?
I took a year out of my studies when I was diagnosed to come to terms with it all. During that year, I learned that living with MS was manageable - just because I had been given this ‘chronically ill’ label it didn’t mean my life was going to change instantly! I also learned that MS was so misunderstood, yes I was still learning about it myself, but people didn’t know anything about it or had misconceptions about it. So, when I returned to uni I decided to use MS as the inspiration for my final years' work. I wanted to make MS visible through my degree show pieces and share my experiences of living with MS in a bold way.
My work had such a great response from the public and my peers I knew I had to continue raising MS awareness this way as it opens conversations about MS in a new and innovative way. I developed my creative business, Charcot years later as I ran off to London after art school for a few years to intern for designers and design labels which was a great experience, but I was always thinking about my MS inspired design ideas. Named after the ‘Father of Neurology’ Jean-Martin Charcot, ‘Charcot’ is my surface pattern design label where I use my own MRI scans and lesions shapes, the damaged caused by MS, to design prints and patterns which are then printed or etched on to various materials to make this invisible illness visible in the most fabulous way.
Has your work improved your experience of living with MS?
My work has definitely improved my experience of living with MS as at first, I was embarrassed to tell people that I had MS as it made them feel awkward! But now I have no trouble telling people and sharing how I have used it as a positive and raise awareness in an exciting way!
What kind of feedback have you had for your work?
I have received incredible feedback for my work, it really has been more than I could have ever imagined! I have the continued support from the MS community, which means so much and I love how it engages people that don’t have MS and that might not even know what it is, I really love taking it to new audiences! My work has also taken me to China to represent Dundee UNESCO City of design at the first ever Design Week in Shenzhen and at the same time I was announced as the first Design Champion for V&A Dundee, the first design museum in Scotland, which was an incredible honour! I have also leased work internationally and collaborated with pharma and digital imaging companies.
How was lockdown for you, what changed and how did you cope?
Lockdown has been interesting!? I work from a home studio so it wasn’t all that different but my years plans and potential work opportunities had to be scrapped, but the time has allowed me to focus on myself and even re-evaluate what Charcot is all about! I was supposed to be starting a new medication when it all kicked off but that was postponed, which I was thankful for as it is an immunosuppressant drug, which would weaken my immune system which isn’t ideal amid a pandemic! Also over the past few months I have noticed more symptoms and my legs are pretty wonky! So, I am being as active as possible to regain strength and feel more like myself! The online leg work outs from MS UK, have been great!
What advice would you give to someone who is newly diagnosed?
I would say, yes, it is a scary and daunting thing to be told but it doesn’t mean that’s it for you! Cliched as it sounds take each day as it comes, do what works for you and enjoy every bit! It has taken me my 13 years of living with MS to realise this, so just go for it!
The heat is on for new cooling drug, says Feature Writer and MSer Ian Cook.
If you suffer from heat sensitivity you will know it can be a big summer holiday spoiler and although other multiple sclerosis (MS) symptoms often get talked about, heat sensitivity doesn’t get the coverage it deserves. As a sufferer I find this fact surprising because the link between heat and MS has been known about for 130 years. Back in 1890 Wilhelm Uhthoff, a German neuro-ophthalmologist, noticed that some of his MS patients’ visual problems got worse after exercising and getting hot. This later became known as Uhthoff’s phenomenon.
Then, in the 20th century the diagnosis of MS involved something called the ‘hot bath test’ where patients were lowered into a bath of hot water to see if their condition worsened when they got hot. If it did they would be diagnosed with MS.
More recently, in the early years of the 21st century, researchers tried to identify the exact mechanism through which heat sensitivity has an effect in MS. The first thing looked at was the fact that MSers overheat because we lose our ability to sweat as MS progresses. Normally adults can sweat between two and four litres per hour or 10–14 litres per day and sweat cools the skin as it vaporises in a process known as ‘evaporative cooling’. But in MS things don’t work so well. Research carried out in 2009 at Oulu University Hospital in Finland looked at sweating in 29 MS patients and compared these patients to 15 people unaffected by MS. The research found that MS patients sweated markedly less than people without the condition. After just 10 minutes of heating, sweating was significantly lower in the forehead, feet and legs of MS patients than in those of those who didn’t have MS, meaning MSers were overheating as they were unable to benefit from evaporative cooling.
Sweating in simple terms is a two-way process. Temperature receptors in the skin send messages through the nervous system to a part of the brain known as the hypothalamus where heat-sensitive nerve cells are located. These cells in return send messages to millions of sweat glands in the skin to
release sweat causing evaporative cooling. For a message to travel between the hypothalamus and the sweat glands the nervous system must carry these messages efficiently.
One of the key chemical elements involved in this process of efficient communication is sodium. As axons in the central nervous system heat up, the amount of sodium moving into the nerve increases in a process known as sodium loading. However in MS this process goes into overdrive and excessive
sodium makes it harder for messages to be sent efficiently up and down nerves to and from the sweat glands. This results in less sweating and overheating.
Dr Mark Baker of Queen Mary, University of London is currently researching ‘sodium loading’ in axons. Dr Baker is looking for a drug or drugs that could target MS heat sensitivity by reducing the amount of sodium travelling into nerve cells when the temperature increases, allowing messages to muscles to be sent more securely and therefore better communication with the sweat glands and more sweating.
One drug that is believed could have this effect is bumetanide. This drug is already used to reduce extra fluid in the body (oedema) caused by conditions such as heart failure, liver disease, and kidney disease so we know it’s safe to use. It is thought bumetanide might be effective in tackling heat
sensitivity because it reduces the amount of sodium entering cells. Dr Baker has been leading research into this area but says that bumetanide comes with major problems. It is poor at getting into the brain and nervous system and thus poor for accessing damaged axons. A side effect of bumetanide is
increased urination – something that would be unwelcome by many of us MSers who suffer urinary problems. Dr Baker says these facts are leading him to look for other drugs.
“We need to investigate other compounds that have much better brain penetration and we have plans to do this. We also think there may be another molecular mechanism causing sodium loading that is not affected by bumetanide and this is one of the things we are working on.
“Exploring this avenue may allow better pharmacological control of temperature-dependent symptoms, and in the longer term could provide a route to neuroprotection. So right far down the line neuroprotection is a massively exciting idea that means we may be able to protect axons and neurons from the worst effects of neuro-inflammatory disease and slow progression by reducing the energy expenditure in axons as well.”
Although it is early days in Dr Baker’s research, it is hoped that continuing work on heat sensitivity could lead to other drugs which would not have the side effects of bumetanide and may even have a neuroprotective role too. Until that day happens, MSers will remain reliant on the tried and trusted techniques for keeping cool such as fans, jackets or sprays. I, for one, will be hoping that it’s not too hot this summer, and I will of course also be using a fan, a spray and possibly other cooling aids in case, like last year, we have another long hot summer/ Meanwhile, the heat is on in the search for a new cooling drug.
This article originally featured in issue 122 of New Pathways magazine. For the latest treatment, symptom information and real-life stories, subscribe to New Pathways by clicking here.
by Martin Baum
Recently, I was invited to be a contributor for a Q&A article about staying active with MS. Although I have blogged extensively about living life not MS – an issue which connects positively with the many MSers who follow me - this was the first time I had specifically been asked my thoughts about exercise and exercising.
In so far as it goes for one man and his stick, my idea of a physical workout is being taken to the local park by my wife/carer as regularly as my health and the weather dictates. What else was there for me to contribute? Well, as it turned out, quite a lot more than I had initially given myself credit for and this is how.
Aside from my limited bodily activity, I try to do the best I can. It is all about keeping to a regular routine, pretty much the same as for anyone else going to a gym. As any MSer can attest, with something as demotivating as this energy-sapping, soul-destroying illness, it is just so easy not to bother. Some say 'What is the point? I cannot do it. I will not do it. I have MS!'
However, I can and do because there is a point. It is called structure, setting goals. Mine was taking a daily walk of a modest distance which inadvertently, led to an unexpected change in my diet. It didn’t just happen. It wasn’t MS, it was me. Eating too many of the wrong things was causing me to gain weight, making me breathless sometimes and causing a dip in my energy levels. I knew I had to do something.
I call it the Rocket Science diet or, rather, it isn’t. Whilst I wasn’t a great consumer of 'treats' per se, such as bread, biscuits, crisps, chocolate or alcohol for example, I decided to eliminate everything except fish, meat, fruit, vegetables and water from my diet on an ongoing trial basis. Has it been easy? Well, yes, given that this was something I felt was necessary in my limited capacity for taking responsibility for my health and welfare. It’s also given yet more structure to my life. More goals to achieve.
However, there was something else which I unintentionally neglected to include in the article - meditation, which was something I had already been doing for some time and was inextricably a major part of my daily structure.
MS is a sponge which just keeps absorbing and can leave MSers vulnerable, both physically and emotionally. I am no exception. Meditation, though, helps me achieve mental clarity, focus and, to quote Pink Floyd, “comfortably numb”. Since I have begun practising meditation, I believe I can stay one step ahead of MS or, at the very least, keep abreast of it.
Whilst I accept the combined holy trinity of diet, exercise and meditation is not for everyone, I passionately believe that doing something is better than nothing be it diet, exercise, or meditation. Take your pick. Think of it as living life on your terms instead of being at the behest of the life limiting conditions set down by MS.
Failure is Not an Option is a phrase associated with the Apollo 13 Moon landing mission and it should be something for all MSers to aspire to. By doing something is one less thing for a carer, physio, therapist, or neurologist to take responsibility for. To put it more succinctly, if an MSer cannot at least try to do the best they can for themselves, then why should anyone else?
It’s your MS, own it.
Have you thought about joining one of MS-UK's Peer Pods? Here, Peer Support Co-ordinator Vicky shares updates on this growing service for the multiple sclerosis (MS) community.
By now, I am hoping that you have all heard about our new service and the themed Peer Pods that we have been running since March. You may even already have attended one or more of our sessions and enjoyed meeting others online. At MS-UK, we are dedicated to letting the voices of the MS community inform the work we do – so I am pleased to announce that we will be launching three new Peer Pods, based on what our Virtual Insights Panel or VIP (made up of people living with MS) told us they would like to see.
We understand that there are some symptoms and issues that can be difficult to talk about, particularly when they are around sensitive subjects, so we hope that by having these specific groups, people will feel more comfortable discussing the topics that really matter to them.
We also know that 'newly diagnosed' is not necessarily just those that have been diagnosed in the last month or year, or even the last five years. We understand that many people when first diagnosed can spend several years not engaging with health services or the 'MS community' and so this pod is for all those that may only now, for whatever reason, be finally feeling ready to talk.
Unlike our current pods, these sessions will have no particular theme, which means that anything can be a topic of conversation and a chance to share stories and learn from each other.
We know from experience what great benefits there are to be gained from speaking with others that are living with similar challenges, and how this can help people to feel less isolated and alone – regardless of whether you have a good support network of family and friends.
But don’t just take my word for it! Here is what some of the attendees of our pods have said so far:
'Thank you so much for your support. I really enjoyed the zoom get together yesterday, what a fantastic group of people! It was very interesting hearing everyone’s story and I’d really like to join you again in a couple of weeks.'
'I am so happy that I’ve met you, your positivity is infectious, thank you so much!'
'Thanks so much Vicky, I will pop in again next week. I really benefitted from the laughs & sharing experiences.'
'That was lovely! I nearly didn’t join as I was having a bad day, but so glad I did! Thank you so much for setting up the Peer Pods Vicky, it’s like a massive breath of fresh air seeing you all and chatting so freely!'
'So good to chat, ladies. It felt totally ok being able to share with each other in such a brilliant safe space'
'You have all helped me when I was at my lowest and loneliest.'
It needn’t stop there either! We are always happy to hear from you, so if you have any suggestions for a Peer Pod that you would like to see in the future – or if you like the idea of volunteering with us and facilitating a pod yourself – then please do get in touch!
Fancy joining one of our current or future Peer Pods? Simply contact us by emailing email@example.com
I look forward to ‘seeing’ you soon!
Jon Dean has always been a fan of exercise and sport. When he recieved his multiple sclerosis (MS) diagnosis, he thought he could no longer do the things he loved. Here's his story...
Exercise, they say it’s good for you. Throw MS into the mix and it can feel like an impossible task at times. I was always a keen footballer in my teens, I wasn’t particularly good but I loved to play and worked hard to get better. As a goalkeeper, I loved making saves. MS has made my hands constantly numb and one of the worse things for a goalkeeper is to lose their grip. So despite a few attempts to play since I was diagnosed 11 years ago, the gloves and boots will have to remain hung up.
My other fitness passions were going to the gym and running. I had to give up my gym membership 11 years ago as we needed the money due to moving home and our first child was on the way. After years of going to the gym six to seven times a week, I was no longer exercising and my neurologist believes that, and the stress of moving triggered my MS diagnosis. I don’t regret that decision as it could’ve happened regardless and being a parent is the greatest accomplishment in my life.
But 'use it or lose it' has often resonated with me so when things improved financially, I returned to the gym. It was tough. Over a year off, I’d lost so much strength and the added symptom of fatigue made even a 30 minute workout near impossible.
I persisted. I’m glad I did as I’m a fan of playing the long game, my patience is pretty good and eventually I started to feel fitter. Fitness improving with exercise is obvious I know but MS fatigue is something worse than just feeling out of shape so when I started to notice my fatigue had lessened, my morale was in a really good place.
Fast forward to 2016 and whilst I was watching the London Marathon like I do every year, I had always dreamt of taking part but wrote off my chances due to my MS. The commentator then said “if you’re ever sitting there watching and thinking you want to take part but can’t, just apply and see what happens” so that’s what did. One year later I fulfilled a lifelong dream and thankfully the cameras didn’t catch my ugly crying face when I crossed the finish line! I’m so glad I pushed myself.
Four years later I’m still running two to three times a week and still going to the gym five to six times a week. I’ve got RRMS and I feel lucky that I can still do most of the things I did before my diagnosis as one day, things might worsen and I have to look for a different form of exercise. I truly believe finding an exercise that you enjoy can help you mentally as well as physically and my MS is in a good place as a result of that.
I’ll keep going, keep on running and keep making sure I exercise.
Meet Sadie. At only five years old, she's accomplished an amazing fundraising activity to support MS-UK! Here's her story...
My sister, Amber age six, climbed Snowdon last year for MS-UK and I said to my Dad I think its my turn to climb a mountain this year, but I am only five. We decided to try a different mountain, so we chose Scafell Pike which is not as tall, but it is steeper. I set up my donation page, bought some new walking boots and got training. As the weekend approached, we noticed the weather looked very bad so I suggested we go a day earlier and climb on the Friday.
We drove late Thursday and arrived at our hotel after 10pm. On the morning, the weather was lovely and we set off climbing at 10am. Before we started, my Dad stood in a big cowpat which made me laugh and him stink a bit! The climb was very steep, I had to use my hands a lot. The best part was where we had to climb across a stream and we didn’t even get a little bit wet. I had fruit pastelles to get me to the top or as I called them ‘Super boosting sweets’. It took 2.15 hours to get to the top. We turned straight round and came all the way down. In total it took 4.08 hours. The climb was very very tough and I got some bad blisters but I knew we had to finish. My dad told me how proud so many people were of my achievement (he said he wasn’t crying but his eyes had lots of water coming out of them) and I was allowed to have dessert before my dinner that evening.
My grandad had multiple sclerosis (MS) for 22 years and had such courage. Unfortunately, he passed away in 2019 and I miss him a lot. I wanted to do something to make him proud and carry on his memory. I did it for MS-UK as they supported him and my family. They do wonderful things for people with MS. We raised over £2,000 and have made a memory for life.
Helpline and Information Supervisor, Laura is taking on a swimming challenge in memory of her dad. Here's her story...
Well, here we go again!
I first started my swimming challenge in October 2019. I had set myself the challenge of swimming 80kms over the course of a year to mark what would have been my Dad’s 80th birthday. He lived with MS for more years than without. I also work on the MS-UK Helpline, so not only have I seen and felt the impact of MS personally, but I also hear other people’s stories each week.
My challenge came to a grinding halt in March 2020 due to Covid. I had managed to cover 60 lengths every week for 20 weeks, I was well into the swing of things and really enjoying my time in the water. I was feeling fit, and each week was becoming easier. I felt really on track to achieve the distance.
The pools closed and I could not do anything about it. The months went by and in July 2020, we marked ten years of Dad’s passing. I felt disappointed that I could not continue my swim in his memory. Being in and out of lockdown, combined with restricted pool hours, meant my challenge was temporarily on hold.
Fast forward to this year when lockdown was once again lifted, the pool reopened with more flexible opening times. I had lost my swimming mojo though and kept making excuses that life was once again too busy, or I could not log into the new online booking system!
Then something clicked and I pulled my finger out! Last week saw me enter the water for the first time in 15months. I was quite nervous, I thought there is no way I will be able to cover the distance having not swum for so long. Being back in the water was so nice and although it took me several lengths to get my mind focussed, once I got going before I knew it, I had swum 60 lengths. It felt so good!
I have booked to go tonight, and I have made a promise to myself to do my best to go every week until I have reached the final distance of 80km. So far, I have covered 31.5km of my target. That means if I swim 60 lengths each week, I have another 32 weeks to go! I would love to complete it by the end of the year if I can. I will need to go more than once a week, but I am determined to finish what I started. Dad was the most determined person I have ever known, he is always my inspiration.
To donate to my Justgiving page, please visit the page here.