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Essential oils for MS

Posted on: June 22 2021

This week (21-27 June) is World Wellbeing Week and here, aromatherapy expert Joanne Hunt explains how oils can boost wellbeing when you have multiple sclerosis (MS). iStock-1140934863.jpg

Over the last few years I have worked with an increasing number of clients that have MS. As you know, the condition can come with issues such as fatigue, sleep, difficulty relaxing, joint mobility, and stress, to name a few. These different symptoms can come and go. My clients have found essential oils to be really helpful at different times. These oils can support the feeling of wellbeing and wellness. One thing I would like to state is that essential oils are very pure, and you only ever need one drop at a time. Please ensure you are being supported by someone that can be with you every step of the way, such as a qualified aromatherapist.

Oils I recommend
You can use essential oils at home to helppromote wellbeing. Here are some of my favourites.
For pain lavender, marjoram, roman chamomile, clary sage, lemongrass, peppermint, ginger or black pepper. You can add one drop to any body lotion or carrier oil and rub into the area of concern, or add to the general spine area.
For stress frankincense, wild orange, bergamot, grapefruit, ylang ylang, sandalwood, neroli, lavender, tangerine or jasmine. You can add a drop to your wrists or the back of your neck, or add a drop in a diffuser.

For sleep - Lavender, serenity or cedarwood. Add a drop to any cream and rub onto the heels of your feet before bed. You can also add a drop to your wrists or the back of your neck one hour before sleep.
For sense of wellbeing - Frankincense, lavender, rose, green mandarin or neroli. You can add a drop to your wrists or the back of your neck or add a drop to a diffuser.
For headaches - Peppermint – rub one drop onto your fingertips and massage into your hairline. Make sure you wash your hands as it could sting if you rub your eyes.
For circulation - Rosemary, ginger, black or pink pepper, peppermint or lemongrass. Add one drop to any body lotion or carrier oil and rubbing onto the area of concern, or adding to the spine area.
For nausea - Peppermint or spearmint. Add a drop to a carrier oil or to a diffuser.

For more information and to buy oils, visit Oils by Jo.

If you liked this, read: Multiple sclerosis - I do it my way 

Phantosmia

Posted on: June 21 2021

phantosmia.jpgOlfactory hallucination are nothing to be sniffed at

Have you ever found yourself commenting on the sudden smell of burnt toast, much to the bewilderment of your family? Or were sure you could smell something foul, yet others around you were baffled and unable to detect anything? Well, you may well have been experiencing phantosmia.

Phantosmia is the name for olfactory hallucination – in other words, when you detect smells that aren’t actually there. And it is a symptom sometimes reported by people with multiple sclerosis (MS).

The smells detected can vary hugely from person to person, and they can be extremely pleasant, or completely foul. The odours can come and go, or someone may be able to smell them all of the time.

So far, science knows that phantosmia can be caused by a number of things. These include inflamed sinuses, brain tumours, temporal lobe seizures, head injury, upper respiratory infections and Parkinson’s disease.

Smell and MS

The sense of smell has long been used in sensory evoked potential testing to monitor the progression of MS, even though some doctors feel this option is not as reliable as visual evoked potential testing.

Smell is regulated by a network that includes the olfactory nerve and other areas of the brain. The nerve doesn’t have much myelin, and scientists previously thought the sense of smell was relatively untouched by MS. But research has since shown that olfaction is often damaged in the early stages of neurodegenerative disease, such as Alzheimer’s and Parkinson’s.

One three-year study, which looked at 20 people with MS, found that around half of people with the condition have a reduced sense of smell, and that olfactory impairment may be a marker for disease progression.

Consult your doctor if you are experiencing phantosmia, so that other conditions can be ruled out.

Read next: Sex, pills and pumps

Sex, pills and pumps

Posted on: June 17 2021

me by hotel pool.jpgMSer and Feature Writer Ian Cook discusses male sexual dysfunction

Ten years ago I wrote a feature for a former New Pathways editor which had the rather risqué headline “Getting it up is getting me down”. The feature looked at what is referred to as male erectile dysfunction or ED as it is often called.

In the feature, I looked at two ways of overcoming the problem of ED which happens to many men with MS as the illness progresses. The first solution I looked at was the “little blue pill” otherwise known as Viagra. This drug is now better known as sildenafil and is now a little white pill which can be obtained over the counter at pharmacists as well as by prescription in packs of four.

The second way of dealing with erectile dysfunction I looked at was using a vacuum erection device (VED) – a long plastic tube which you place over your penis pressing the blue rubber seal onto the surrounding skin and using the vacuum that the pump creates to bring about the desired erection.

For the past ten years, I have used both approaches and each method has its pros and cons. The advantage of a pill is its simplicity and discretion. And almost as a sign of its success, there is now a drug alternative to sildenafil/Viagra in the shape of Cialis also known as tadalafil. Sildenafil/Viagra has worked well for me but pills aren’t for everyone for medical reasons such as side effects and interactions with other drugs you may be taking.

For this reason, I still believe the drug-free option is worth considering. VEDs are cheap and easy to buy (you can buy them at Ann Summers for around £20) or get them on prescription. VEDs do, however, have two drawbacks. The first is purely practical. Using them for a long time can make you a bit sore. The second problem is they are rather cumbersome, unsightly to be frank and can be a bit of a turn-off for many.

So which is best – the pill or the pump? The fact I still have sildenafil on repeat prescription suggests that I am still finding it useful, which is true, but the fact that I recently replaced my old VED for a new one suggests that I find it useful too, which is also true.

I would argue they both have their place in overcoming MS-related male sexual problems. For the past ten years pills and pumps have both worked well for me and the proof of that is that I still have them both in my bedside cupboard. I’d be hard pressed (no pun intended) to choose between the two.

Fundraiser of the Month - Keith Wood

Posted on: June 17 2021

the Bergholt Bears book two.jpg

During the first national lockdown, Keith Wood took to fundraising for MS-UK whilst keeping local residents entertained. The bears have become local legends, and this is Keith's story. 

"As the people of West Bergholt came out and went out and about for their daily exercise, the Bergholt Bears became a much-loved fixture in our landscape. Families eagerly looked forward to their daily visit to the “Bergholt Bears” to see the latest escapades and young and old seemed to love them. I soon became known as the “Bear Man of Bergholt. Please note this is spelt BEAR and not BARE! The first book shows all the different activities the Bergholt Bears got up to from 4th April to 18th June during the Lockdown 2020"

It didn’t stop there, following the huge demand for the now famous Bergholt Bears, Keith went on to publish a second book - The Bergholt Bears, Book Two!  

Bergholt Bears.jpg

You can get a copy of the second book at the usual local outlets in Colchester: Kitty Rose, Pantry61, the White Hart and Palmer and Partners. 

All the money raised by the sale of the second book will be donated to MS-UK, a charity very close to Keith’s heart as he was diagnosed with multiple sclerosis in 2012. Keith has already raised £1,800 through sales of the second book!  

The bears have now been named!  

Heathlands Primary School, the local school held a ‘Name the Bear’ competition where pupils were able to enter their chosen name for the bears in return for a small donation. The winner was pulled out of the hat at the local allotment opening and the famous Bergholt Bears have now officially been named - Eddie the Teddy and Genie the Teeny!  

What is Loneliness Awareness Week?

Posted on: June 17 2021

A4 Poster [Photo 4].png

Hosted by the Marmalade Trust, Loneliness Awareness Week is here to recognise that we all get lonely. As humans this is a natural emotion that we feel as sociable beings. In the past year in particular, being made to isolate and stay in our homes has been a particularly lonely experience, despite a unifying one. Being separated from friends, family, colleagues and human interaction overall has been difficult for many at times. As the world reopens, it's easy to get overwhelmed so check out this blog from MS-UK Counsellor Mark Howe on tips to socialising in this new version of the world. 

This year, the Marmalade Trust is campaigning to remove the stigma attached to loneliness and accept that it exists. It can be a difficult topic to talk about and sometimes tricky to recognise that you’re feeling this way. By increasing our understanding of loneliness, we can further help ourselves and others who experience loneliness. By removing negative language and stereotypes associated with it, loneliness becomes a widely accepted emotion and experience. The Marmalade Trust has this set of resources to help you learn more about loneliness. From the physical effects, how to talk about it and self-care, there’s something for everyone.

View the Marmalade Trust’s loneliness resources

Here at MS-UK, we’ve been working with multiple sclerosis (MS) community to improve the services available to people who are experiencing loneliness. The Peer Support Service was launched at the beginning of this year, with a selection of Peer Pods available for anyone living with multiple sclerosis to join.

The Loneliness and Isolation report was released last year, and you can read the full report and findings here. Click the here to read Diana’s blog about the steps MS-UK is taking or watch her video below.

Feeling hot? Six quick and easy tips to keep cool this summer

Posted on: June 17 2021

It’s that time of year again, the sun is out, the mercury is gradually rising and it’s time to welcome in the unpredictable British summer for the next few months. For some people affected by MS, summer can also be a time of concern as the increase in temperature and humidity can cause a temporary worsening of symptoms, so it is important to keep as cool as possible. Allow us to assist you in cooling down with these six tips which you can take advantage of with minimal fuss. Helpline Officer, Shaun shares five handy pearls of wisdom to beat the heat. Shaun 5.jpg

Cool your pulse points

Your body contains pulse points that assist in your body’s heat regulation function, situated in areas such as your wrists, ankles, the rear of your knees and your elbow crooks. These are sensitive points of your body where the veins are closest to your skin’s surface, allowing you to access your blood and circulatory system more directly than in other areas of your body. By applying something cool to these areas for 20 minutes or so at a time, such as an ice pack covered with a towel, a cool wet towel or simply a bag of something frozen from your freezer, your body will benefit from a rapid cooling sensation.

Cool your feet

Your feet are home to thousands of nerve endings and play an integral part in helping you to control your body’s temperature. Keeping your feet cool can be a quick and easy way to prevent overheating. For example, fill a bowl or bucket with cold water and dip your feet into it, place a damp towel over your feet, spray your feet with cool water or a specialist cooling foot spray, such as ones infused with Peppermint that help to promote that cooling sensation.

Cool ties and scarves

Cooling scarves are simply something you tie around your neck with the impact being a full-body cooling sensation. These simple yet effective ties and scarves are relatively cheap and accessible. Some come with replaceable cooling inserts that need to be frozen and others contain polymer crystals that when soaked in water cools the body through evaporation. There are some scarves, shawls and ties that you can buy direct from the suppliers and there are also other options available on the internet. Try Soo Cool, MediChill, or TieChilly, with other providers also being available. 

Cool clothing

Wearing suitable clothing made of breathable materials is a must in the quest to stay cool. Cotton, linen and rayon are all materials that are breathable and can help your body’s temperature regulation process. Go for lightweight, loose clothing and if you are venturing outdoors also consider the colours you wear. Remember, dark colours absorb more heat than lighter coloured ones, with the science behind this being that the closer to black, or darker, a colour is the more light energy it absorbs. The lighter the colour the more light energy is reflected with the result being that your body stays cooler.

Cool your environment

Keeping your home cool is an effective and easy way to help prevent your body from overheating. Some quick ways of doing this include closing the curtains or blinds of windows that are facing the sun, positioning an ice pack or bowl/drinks bottle containing ice in front of a fan to create an air conditioning effect and closing the doors to a room you wish to keep cool to help prevent warm air from entering. Also consider letting the cooler night air into your home by opening your windows once the sun has set, so long as you feel comfortable in doing so.. iStock-1168952236.jpg

Cool your diet

Staying hydrated is a vital part of helping your body to stay cool, with the Public Health England’s Eatwell Guide suggesting we each consume between six to eight glasses of fluids per day, this includes water, squash, tea and coffee. It is not just about drinking water regularly, when you sweat to keep cool your body loses electrolytes such as sodium which our bodies use to help maintain fluid balance and blood pressure. The good news is that there are easily accessible, healthy drinks that provide a good source of electrolytes, such as Coconut Water and Milk. Foods such as Yoghurt, Bananas, Watermelon, Avocado, Chicken and Kale are amongst a whole host of foods that provide a natural source of electrolytes. Why not try a cold salad on days where you feel particularly affected by the heat, washed down with a cold glass of water or sugar-free squash?

If you have any questions about multiple sclerosis, call our helpline free on 0800 783 0518 and speak to one of our helpline information officers. The MS-UK Helpline is open Monday-Friday, 10am-4pm. 

Mr Brightside

Posted on: June 15 2021

msuk photo 2.jpgTom Ledson leads an optimistic life. For Men’s Health Week, he shares what he does to boost his own wellbeing

I have always been positive and optimistic even before my multiple sclerosis (MS) diagnosis.

A particular hobby of mine is playing the ukulele. I taught myself to play at the age of 11 when I bought a ukulele from a school friend. I learned three basic chords and a few songs. I played for about six months and then stopped for no particular reason other than that I was young and that's what young kids do, or don't do. I didn't touch the ukulele again for over 40 years. My playing resumed just before I got MS. I found I had forgotten very little over those 40-plus years.

Staying positive

I have lots to keep me active. By doing things, I remain positive all the time. I even see my MS condition as a positive thing, using it as an example to help others.

I also teach beginners how to play. I have set up many ukulele groups, and must by now have of taught at least 200 people. The ukulele is an ideal instrument for those with MS. It is           small, easy to learn and very versatile, too. It is also very cheap to buy. In fact, you can buy one for around £20. You can play all kinds of music – pop, folk, children’s nursery rhymes, sing-a-long songs, and so on. With just three basic chords it is possible to play over 100 songs including rock ’n’ roll. It is a pleasant instrument that becomes a sort of a friend – a real antidote to loneliness.

Complementary therapies

Since my diagnosis, I have taken active participation in my lifestyle, including hyperbaric oxygen therapy, and aquatherapy. I am a member of the neurotherapy centre at Chester. Since the pandemic began, I am actively engaged in home exercise, which includes walking with my stick, Nordic walking poles or a rollater, my personal walking machine, online exercises, and some physiotherapy leg exercise I got from the hospital physio. I also do regular exercises on Zoom with neurotherapy centre staff. I would recommend as much physical exercise as possible. You just need to keep moving. It's a case of use it or lose it.

I would recommend that people take their opportunities as they arise and see where life takes them. I would advise them to do things rather than try and do things, just do rather than try. They may not do well at first, (in fact they probably won't) but their persistence will pay off and they will get better in the end. I am quite sure of that. If they just try, then they give up too easily. Do things, and you'll get there. Keep learning. There is always new stuff to learn. Life is but a short journey. Enjoy your ramblings and where they take you.

I have learned to live with MS. Strange as it seems, I sometimes see it as a sort of bonus. I have made many contacts and met lots of interesting people, many with MS. I love helping people, so if anyone reading this is interested in learning the uke, writing poetry, or songs, drop me an e-mail at uketom1@gmail.com – I will be happy to get you started, or just for the chat. You won't be disappointed, I promise.

Loneliness Awareness Week - 14-18 June

Posted on: June 14 2021

Last year MS-UK launched our report on Loneliness and Isolation during Loneliness Awareness Week in the height of the COVID-19 and lockdown number one where we were all been forced into isolation! A year on we have made delivered on some of the next steps which Diana Crowe, Head of Services here at MS-UK would like to share. Here's just some of the highlights. Diana.jpg

Peer support

We said we would look at creating a new online forum for people affected by multiple sclerosis (MS) however when we conducted our research we realised that there were already so many great forums out there. Instead, we shared videos on all of our social media channels about what online forums are, how to access them and how to stay safe when using them. We also created a webpage to share the different forums with the MS community.

At the beginning of 2021 we also launched our peer support service which is part of MS-UK Online. We are connecting people within the MS community who have common interests through our different online Peer Pods. Please email peersupport@ms-uk.org if you would like to find out more how you can meet others.

Mental health

We have continued to provide our online counselling service which is delivered by telephone and also by Zoom. We launched in September single session therapy which is a one-off session with a counsellor who helps to find a way forward with a specific MS-related issue that is impacting on life right now. Due to current high demand we are unable to take any referrals but are working hard to increase capacity and reduce waiting times. Please email counselling@ms-uk.org if you want to register your interest in the service and be informed when we are taking referrals again.

We continue to offer Mindfulness courses that are designed to help people with MS live more consciously and to help manage their MS. We have a nine-week Mindfulness Based Stress Reduction course and a four-week course which offers a less intensive option and is a good introduction. Please email register@ms-uk.org if you would like more information.

In October 2020 we ran a campaign on World Mental Health day which enabled us to share information about support available at MS-UK and other resources and services with different mental health organisations. In March this year we ran a campaign during National Complementary Therapy week to showcase the many therapies that for some really benefit individuals. Please take a look at our Choices booklet.  

Raising awareness

Promoting kindness was really important for the MS community so we ran a campaigns on World Kindness Day last year and in February this year on Random Acts of Kindness Day. We encouraged people to send one our postcards to reach out to someone in a random act of kindness which can make such a difference to wellbeing. Watch this video if you missed it to hear some of the stories you shared!

What's next?

We will continue to do what we are doing and ensure that we do not lose sight of the issues of loneliness and isolation and work with our staff to help them recognise signs and how to support people more effectively. We are starting to talk with link workers within social prescribing services to make sure they are aware of the support available to people affected by MS.

This week we will be launching our three new Peer Pods to continue to grow our Peer Support service. They have all been chosen by our Virtual Insight Panel and we invite you to take a look and get involved. Please visit the webpage about our Peer Support Service for more information. 

Watch Diana's video on Loneliness Awareness Week

Nervous about socialising again? Here’s how to handle the end of lockdown

Posted on: June 14 2021

If the limit of your conversational prowess this past year has been to grunt through Zoom meetings, nag your children or make passive-aggressive comments to the cat, you may feel out of practice now large gatherings are in reach. Perhaps you’ve quite enjoyed this period of government-mandated introversion and dread the idea that you may be expected to socialise. Either way, if all goes according to plan, this era of social distancing may be starting to close. For those feeling a little daunted, here, MS-UK Counsellor Mark Howe explains how to ease yourself back in. Mark Howe.JPG

Some social anxiety is normal

It is part of being human. We’ve all been socially deprived this last year, and when you haven’t done something for a while, it can feel a bit strange going back into it. The social rules may also have changed – do you hug? Do you need to wear a mask? Some anxiety is understandable, so we need to give ourselves a bit of a break.

You can’t lose social skills

We acquire most of our social skills between the ages of zero and seven. Sometimes they’re hard to remember and we may have to dig way down, but they’re there. It may take a reminder of what is socially acceptable, but your fundamental skills won’t have withered irreparably. Also, remember that the changes to restrictions can be gradual. You don’t have to brace yourself for something that feels like a tsunami.

Build confidence gradually

Note down some small goals that you would like to achieve in the coming weeks. It could be reaching out to people online, or arranging to meet someone for a coffee, or doing an online course. If you feel you are struggling, there are effective treatments, usually CBT, for social anxiety. Social anxiety starts early in life – most people describe it starting in early adolescence – so if you’ve always lived with it, you often think it’s just who you are. But there are good treatments that can really change someone’s life.

Don’t avoid social situations

It might seem the easier option, but it won’t help long-term. Avoidance incubates anxiety. It can also have negative consequences, such as missing job or friendship opportunities. The world may have shrunk around us and to some it feels comfortable, but it’s not always good for us. When you’re shy you have to, in order to move forward and experience life fully… be brave.

But be mindful of what you can tolerate

As restrictions change, it’s reasonable to establish boundaries. If you suspect your employer wants you back in the office five days a week, you could pre-empt that by coming up with a plan of why and how you could start with two. Then you’re not on the defensive. In the event you receive an invitation to a large gathering once they are allowed, such as weddings or a milestone birthday and you are unsure about accepting, smooth the way by meeting certain obligations, such as sending a present, but don’t offer an explanation other than saying you’re not ready. Will you ever be able to go to a big party? Of course, but you don’t know when and that’s OK.

Ease the pressure

People who feel more socially anxious tend to do so because they put a lot of pressure on themselves, and that’s probably going to be the case as life opens. Social interactions are not a performance, – they’re simply about being with other people. One of the most common fears people have is that they feel they should be interesting all the time. But many of us have had a pretty mundane existence over the past year. Simply sharing how bored you’ve been feeling in lockdown is probably enough, because that’s other people’s shared experience too. Don’t assume that being anything less than a dazzling raconteur is a failure. Having very high expectations of yourself – to always have something witty to say, or to never trip over your words – is a route to feeling socially anxious. These are totally impossible standards.

Social interactions are a two-way street. Other people do not go into social interactions expecting the person they are meeting to perform or entertain them. Social interactions are just about being together. When you over-analyse yourself, it gives you the impression that the other person is also doing that, when they’re not. The more we can get out of our head and lost in social interactions, the more we ultimately enjoy them.

Don’t write a script

Although it’s tempting to prepare topics of conversation, or one-liners, it’s actually counter-productive. It makes you more self-focused, more anxious. It takes you out of the interaction because you’re more in your head, thinking about your list of things to talk about, rather than just going with the flow of the conversation. It can unwittingly make you appear aloof or uninterested in the other person. Again, it puts way too much pressure on yourself and the interaction.

Or maintain a lower-key social life – if you want to

Perhaps you have enjoyed a quieter, less frenzied life, with fewer people making demands on your time, and want it to continue. This is also perfectly valid. To demanding friends, you could say: ‘I have actually found that I want to proceed differently now. I still really want to see you, but I won’t be going to big parties’, or whatever it is you want to say. Do you want loads of friends because it would make you happier, or because you feel you should? We’re so used to trying to gather ‘likes’ and followers, it’s been ingrained into us, but we don’t need hundreds of people around us. Introverts prefer deeper relationships with fewer people. There’s not one picture of success. Often, we’re shown this extrovert ideal, and we’re all supposed to aim for that, and actually, that’s not for everyone.

“It's hard to watch someone you love go through this”

Posted on: June 11 2021

h&g.jpgWe talk to Helen and Greg about how they manage Helen’s condition, and why love gets them through

Helen, 37, was diagnosed in January 2019 after experiencing symptoms of multiple sclerosis (MS) for around five years. Her husband Greg now cares for her. So how has this changed the dynamics of their relationship? “I think the diagnosis has made me appreciate Greg as a husband more,” she says.

“I read so many sad stories about partners not being supportive, so I count myself very lucky. Greg is a lot more hands-on with our son now, so it feels like a partnership more than me being mum and him being the breadwinner. Sometimes we have been forced into situations where he has had to become a carer in the fact that he has had to clean me up, get me into showers, and basically do things that I never imagined I wouldn’t be able to do at 37 years old.”

For Greg, Helen’s diagnosis has helped them work more as a couple than as individuals, but it isn’t easy. “It's hard watching someone you love go through this. I feel like I want to be home a lot more now and with a mixture of lockdown – I'm a chef, so I've been on furlough – and watching the progression over the year, I have changed my job to ensure that I am home more for Helen and my son,” he says.

Helen and greg.jpgThe challenges

Helen was unfortunate to experience a big relapse a year and a half ago. “For me, the loss of the use of my legs, bladder, bowel has been the biggest challenge physically. It's taken 18 months of physio and training to be able to do things again, and lots of different drug trials to find what works with my body. This has affected me greatly emotionally, and I have counselling to work through these emotions and address my worries about the future. These things can overspill into your mood and sometimes, I just have to step away from the situation and take time to myself to calm down and start to think clearly.

So what had Greg found to be his biggest challenge with Helen’s MS? “The biggest challenge for me has been realising that this won't go away,” he says. “The uncertainty of it all, even when it's stable – how long will it stay stable for? Is the drug is working? There are no definite answers and that takes its toll emotionally on both of us. We do everything we can to stay fit and healthy, and trying to stay one step ahead of the MS. When we had our bathroom and house redone, some of the considerations we put into place were keeping it accessible in case Helen ends up in a wheelchair. Having that as a real possibility was a little scary but is has also given us some control over the situation.”

The couple feel that to have honest communication is the best advice they can pass on to anyone in a similar situation to them. “Just be honest and open – some issues, like sexual things, just have to be openly shared and discussed. It can be really embarrassing. I have bladder and bowel issues but Greg just gets on with it and helps me when I need it,” says Helen.

“Just be patient and be there,” says Greg. “It's hard for me but is nothing compared to what Helen goes through every day.”

“It's a hard few years making the adjustments and it's a huge learning curve,” says Helen. “For me, the diagnosis was a blessing in some ways as it finally confirmed that there was something wrong and it wasn’t all in my head. It definitely takes a couple of years to find yourself find your groove and what works for you in terms of medication and pacing your life so that MS fits in with you and not the other way round.”

“It's going to be hard but it will be okay,” says Greg. “At the end of the day, you’re with someone that you love and you made those vows and you will stick by them because that's what's right.”

 

 

When an MSer becomes a carer

Posted on: June 10 2021

MSer and Feature Writer Ian Cook reveals his first-hand experience of becoming a carermumpic.JPG

It may sound strange to say this but I believe being disabled is, in many ways, the perfect qualification to care for another disabled person. From 2013-17 I was involved in the care of my aunt (pictured below) and my mother (pictured right) at the end of their lives. Being a disabled person meant I knew all about aids, adaptations, and the benefits system. It made me empathic for someone who, like me, has physical difficulties, and I hope it made me sympathetic without being patronising.

I believe progressive MS gave me great understanding of how to help a 93 year old woman cope with Alzheimer’s and a 92 year old woman cope with bowel cancer. The reason I say this is that both these conditions involve immobility, incontinence and a range of problems which often bear an uncanny similarity to MS. That’s not to say progressive MS gave me all the qualifications. No, MS frequently robbed me of the physical strength to do everything required, but it gave me bags of empathy for two family members with similar problems to mine.

In the beginning

Things started to go wrong for my aunt around 2013. As a child my spinster aunt had always sent me birthday cards and this continued until 2012. Then in 2013 no card arrived. I waited a week then phoned. During a brief phone call it became clear she was having memory problems. A few months later as her next of kin I received a call from her GP which made me question whether my aunt’s problems were more serious. I decided something needed to be done.

aunt pic.jpgI called the church my aunt attended and I spoke to the vicar. Yes, they had been worried about my aunt for some time. Within days I was at my aunt’s home in Sheffield, some 90 miles from where I live. On arrival it was clear my aunt, who had just been diagnosed with Alzheimer’s, needed help urgently and being her nearest living relative it was up to me to help her set up a Power of Attorney (POA) to manage her finances. I also fixed up a social services assessment. Within weeks a carer was visiting four times a day and the POA allowed me to pay her bills through her bank account. I also arranged weekly supermarket deliveries of food.

Lending a hand

As I became more involved in my aunt’s care it struck me Alzheimer’s was like progressive MS in the sense that you are always playing catch up with an illness that is constantly racing ahead of you. In progressive MS the big idea is the brain’s “reserve capacity” i.e. how much unaffected brain there is to compensate for the ravages of the illness. I think Alzheimer’s, which is also a disease involving the brain’s white matter, is similar and the fact it strikes people in their later life means the brain has shrunk to the point where there is little reserve capacity left to draw on.

Later in 2013 I found my aunt had been admitted to Sheffield’s Northern General Hospital in a confused state. The hospital said she was unable to be discharged home so I arranged for her to become a resident in a care home which was only 400 yards from her own house in Sheffield.

Juggling the load

While all this was going on, my widowed mother, also in her early 90s, and living in Paignton, was diagnosed with bowel cancer. I have two sisters, the elder of whom lives in the South West, and we had an informal arrangement that as I live in Birmingham I would take the lead in organising care for my aunt in Sheffield while my sister in the South West would take the lead in organising care for my mother in Paignton.

So, in 2014 my elder sister and I took out Powers of Attorney for our mother, a care home was organised and for two years I was travelling down to Paignton to see my mother in her care home and then up to Sheffield to see my aunt in hers. To say this was difficult for someone with progressive MS would be an understatement. There were several crises, but we somehow muddled through, ensuring that my aunt and mother were looked after for what I assumed would be a short period, and indeed my mother died in June 2016 and my aunt in September 2017.

What I know now

It may sound a strange thing to say, but looking back I think having MS has been good training because as a MSer my experience of dealing with the country’s labyrinthine care and health systems means I was able to ensure my aunt and mother had a good end to their lives. I never thought that having MS could bring with it any benefits but the past five years have made me reconsider this. I have learned a few dos and don’ts, I have made a will, set up a POA for myself, and bought a funeral plan. Without sounding morbid I have started to think about my own end of life care on the basis that one cannot live a good life without preparing for a good end of life and ultimately a good death.

Meet Katie, our new Events Fundraiser

Posted on: June 09 2021

Katie .jpg

Hello, I’m Katie and delighted to have recently joined MS-UK as Events Fundraiser. My role is to recruit new fundraisers to participate in a range of events. This can range from active swimmers, first time runners looking for a challenge or even those wanting to fundraise from the comfort of their sofas by playing video games.

I am really grateful to have the opportunity to work for such a great charity, to help raise awareness and change so many lives. Whilst working for a charity is a new experience for me I have been involved in a number of charity events and have raised money running the London Marathon, cycling from London to Brighton and climbing Mount Kilimanjaro.

I’m really looking forward being part of our fundraisers' journeys from sign up to the finish line and seeing the huge buzz that comes from these incredible events.

Introducing Shaun, our new Helpline Officer

Posted on: June 09 2021

Hi, I‘m Shaun and I am the most recent addition to the Helpline and Information team here at MS-UK. I am proud to have joined such a wonderful charity, which comprises of great people who have been extremely supportive from day one. Shaun 5.jpg

Being a Helpline and Information Officer for MS-UK is both rewarding and challenging. No single call or contact is the same, from signposting individuals to services relevant to their needs to simply being an emotional outlet, every person that contacts us has requirements unique to themselves. I feel that it is a privilege to be in a position whereby I can provide assistance and support to those affected by multiple sclerosis (MS), a privilege that comes with great responsibility given the trust that the people who contact us afford us. Being affected by MS is a highly personal issue and on occasion clients who call our helpline feel that they have no one else to speak to. These can be the most satisfying of calls to handle as simply being there and listening to them, being that emotional outlet which otherwise they wouldn’t have, can be such a positive and therapeutic experience for them.

For the past 20 years or so, I have worked mainly in customer care and client care management, and I have no previous experience of working for a charity. During my short time at MS-UK I have been pleasantly surprised at the enthusiasm of all of my colleagues. This enthusiasm is infectious and is something that I have rarely encountered during my working life.

Outside of work my passions are my family, cycling, Sheffield United (I was born and raised in Sheffield!) playing football and tennis and trying to keep fit!

"I don’t look at or think of my husband as any different since his diagnosis"

Posted on: June 09 2021

sharon & adam.jpgAdam and Sharon explain the challenges and rewards they've experienced since Sharon became his carer

Adam, 43, was diagnosed eight years ago with relapsing remitting MS, and in the last 18 months it has become secondary progressive MS. He lives with his wife, Sharon, 45, who is now his carer. So, how has his condition changed things for the couple? “Being diagnosed has most definitely made mine and Sharon’s relationship stronger and closer,” he says. “Over the years we have learned to appreciate each other’s strengths and weaknesses, and how to put them into play.” 

“We still do pretty much everything together, albeit we just plan for things better. It really is all about management and communication. My wife is an angel of a woman and I’m lucky to have her walking this journey with me.” 

Adam says that matching each other’s pace of life probably has been their biggest challenge. “In the early years, as I slowed down, Sharon sped up to somewhat compensate for both of us. This didn’t work and would throw us off kilter. We’ve found our groove now though.” Sharon agrees, “Definitely the pace has been my personal challenge. I’ve always been someone who went 100 miles an hour at everything and so, in the beginning, I found this frustrating. Over time, however, you start to learn the rhythm of the condition, and gain balance. 

“I don’t look or think of my husband as any different since his diagnosis, so it’s hard to pinpoint exactly how the dynamic has changed. Physically, yes, he can’t do some of the things that he may be used to but there’s so many other things that he can do and that we have found that we can do together so that sort of eliminates that, if that makes sense.” 

sharon&adam.jpgSo what would the couple say to themselves at the beginning of their journey, if they had the chance to go back and impart some wisdom about what they know now? “If I could go back to the beginning, I would tell myself don’t be scared, it’s going be OK,” says Adam. “You are stronger than you know. There will be many moments when you want to get off this ride but, just remember, that’s exact what they are, moments. It’s such an old cliché, but, tomorrow really is a new day. 

“For any new couple beginning this journey, communication is everything,” says Sharon. “Talk lots, but listen equally. Be there for each other but also give yourself what you need. Don’t think too far ahead, no-one knows what’s round the corner, so what’s the point in worrying? And last but not least, laugh. Some days you just have to find the funny.” 

Both agree that Adam’s condition has strengthened their relationship, and they have grown together because of the challenges they’ve faced. “The diagnosis from day one just put life and our relationship in perspective,” Sharon says. “The little things just disappeared and suddenly the true value of what’s important took priority. I see this as a gift if I’m completely honest. We forget all too often to stop and appreciate simple things because life gets so busy.

“We both agree that MS was the best and worst gift, all at the same time. For every negative, it can unlock a new positive,” she says. “If I could go back, I would tell myself, don’t try and fix everything, and don’t get ahead of yourself, things will find their own way.” 

Getting a carer’s assessment

Posted on: June 07 2021

carer.jpgFor Carers Week 2021, we look at how to get a carer’s assessment to see if you are entitled to any support

If you’re an unpaid carer looking after a loved one or friend with multiple sclerosis (MS), the good news is, there may be support available. It’s a good idea to find out what you are entitled to.

There may be support groups and services near to you to help. Start by contacting your local council at https://www.gov.uk/find-local-council who will also be able to arrange for you to have a carer’s assessment.

For this, the council’s social services department will assess your situation to find out if you need any help with the role, anyone who provides a substantial amount of care for someone is entitled to an assessment.

You could be given various forms of support, including information on local support groups, equipment to help you care, respite care in order for you to have a break, and you may even be entitled to a personal budget to cover the cost of some of the needs you have in your role.

You could get help with gardening or housework, help with taxi fares if you don’t drive, advice about benefits, and training.

You only need to call your local council and ask for an assessment. Before the meeting, it’s a good idea to consider how your role as carer is impacting the rest of your life. For example,

Are you getting enough sleep?

Can you get out alone and do essential tasks?

Are you managing to eat well?

Can you cope with your other family commitments as well as your care role?

Is it difficult to juggle your work and caring?

Has caring impacted on your hobbies or socialising?

Once the assessment is done, you will receive a letter listing any support you are able to get, and who to get it from.