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MS and men

Posted on: June 14 2019

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Men experience MS differently to women. Here we take a look at those differences

Most of the information available about multiple sclerosis (MS) makes a point of telling us that more women than men are affected by the condition. Statistics claim that MS is at least two to three times more common in women than in men and more recent studies have suggested that the female to male ratio may be as high as 4:1, as the number of women diagnosed with MS increases. But how does the predominantly female related condition affect men?

Ageing with MS

Let’s start by looking at how men with MS age. In a Canadian study of 743 men and women, both sexes were found to have similar average age, years of education, years since MS diagnosis and level of disability. The study said that men were less likely to live alone or have additional health problems, however, older men with MS had a lower perception of their health. They didn’t cope as well with setbacks, rated lower in the participation of household activities such as housework, they were less likely to socialise outside of the home and they also had a poorer diet. Researchers suggested men’s struggle to cope as they grow older with MS could be due to the loss of work. Work brings routine and a reason to socialise with other people on a daily basis. The ratio of male to female respondents for this study was 166:577 respectively, the fact that so few men responded confirms the findings of this study but also isn’t necessarily a fair representation because there were so few responses from men.  

Mental health

MS can affect mental health in a number of ways. Struggling to deal with the diagnosis, and changes in condition or symptoms can all have an impact. A survey commissioned by the Mental Health Foundation and published back in 2016 found that not only are men far less likely than women to seek professional support, they are also less likely to disclose a mental health problem to friends and family.

In a study that looked at how depression, high blood pressure and other chronic conditions may be common at MS diagnosis, men with MS had disproportionately higher levels of depression and anxiety than women with MS.

However, research shows that men are less likely to disclose or seek help with mental health issues. For MSers the first port of call should be their MS nurse. They are experienced in dealing with all MS related issues and can make referrals to get the help and support needed.

Fertility and sex

Though men with MS might experience physical difficulties surrounding sex, studies have shown that the count and quality of sperm are not affected, which means MS will not have a negative impact on an unborn child. However, sexual problems, such as the inability to sustain an erection or delayed ejaculation can have a significant impact on a sexual relationship and the ability to start a family. But fear not, there are some solutions. The biggest barrier is talking about it. Don’t be shy about discussing it with your GP or MS nurse, they understand the importance of the matter and will be able to recommend treatment options. There are a few drugs that can help with erection problems for example.

MS Clinical Nurse Practitioner Miranda Olding says: “Men with MS qualify for the medications Viagra, Cialis, Levitra and Spedra on the NHS, and if they are not suitable, ask to be referred to the local erectile dysfunction clinic, where different options like implants, creams, injections and vacuum pumps can be discussed. Pumps can also be bought privately and work well for many men.”

There are currently no drugs to help with ejaculation issues, “the NHS Choices website mentions that Baclofen can cause delayed ejaculation and that amantadine, bupropion and yohimbine are suggested when this problem is caused by selective serotonin reuptake inhibitors (SSRIs),” explains Miranda. “Pseudoephedrine has also shown promise but hasn't been licensed for this use. Interestingly, amantadine is also used for fatigue in MS.”

A lot can also be said for taking the pressure off, relaxing and just having a good time. Try not to focus on what can’t be done and focus more on what can, especially for your partner.

Testosterone

Men have around 10 times more testosterone in their blood than women. It is a hormone which affects sexual development. Both males and females produce the hormone, but those levels fluctuate throughout life. Before puberty testosterone levels in males are low and they start to increase during puberty, levels peak at around the age of 40 and then slowly start to decrease as they age. This is also a similar age that many men are diagnosed with MS, which may or may not be a coincidence. More research is needed to conclude these findings, but one small study of 10 men with relapsing remitting MS, who applied 100mg testosterone gel to the tops of their arms, once a day, for 12 months showed an improvement in cognitive performance and slowing brain atrophy. However, this didn’t change the number or quality of lesions on MRI.

Progressive MS in Men

Studies have shown that when it comes to primary progressive multiple sclerosis (PPMS) the ratio of men to women evens up. In the largest study of hundreds of men and women with PPMS, which spanned decades, researchers found that equal numbers of men and women had the condition under the age of 30. Fewer men than women were diagnosed with PPMS over the age of 50, but usually, symptoms were worse in men than women. However, other studies have shown that symptoms were just as severe and got worse just as fast for men as for women.

More investigation into how men and women are affected by MS is needed in order to personalise both treatment and MS management.

This extract was taken from issue 110 of New Pathways magazine, your MS magazine of choice. To subscribe click here.

Accessing community services and support in Essex and beyond

Posted on: June 13 2019

IMG_4765.JPGMS-UK’s Helpline team recently worked with MS-UK’s wellness centre Josephs Court in Essex to run an information session relating to services and support organisations working with people in its local community.

The session was well-received with one attendee saying: ‘I enjoyed the variety of different topics and the speakers. It was informative and gave us the opportunity to meet new people and share experiences.’

The MS-UK Helpline and Josephs Court teams worked together to bring in a range of guest speakers from a variety of organisations to give short presentations on their services, the support they provide and how they can help people with a disability.

The first speaker was Lesley Bysouth, Head of Communications for Motability. Lesley spoke about the fact that since it was set up in 1977, the Motability Scheme has provided over 4.5 million vehicles and has helped millions of disabled people and their families to enjoy the ‘road to freedom’. She let us know that last year they awarded more than 8,000 grants for wheelchair accessible vehicles, driving lessons for disabled people, advance payments for leased vehicles, adaptations, powerchairs and mobility scooters.

To join the Motability scheme, a person must be in receipt of the following benefits:

•           Higher Rate Mobility Component of the Disability Living Allowance (DLA)

•           Enhanced Rate of the Mobility Component of Personal Independence Payment (PIP)

•           War Pensioners’ Mobility Supplement (WPMS)

•           Armed Forces Independence Payment (AFIP)

An individual interested in joining the scheme will need to have at least 12 months remaining of their allowance when they apply.

Click here to find out more information about how the Motability scheme works.

Next, we heard from John, a volunteer for Age UK Essex. John spoke passionately about his volunteering role and then spoke about the range of services the local charity has on offer for the over 50s. It was impressive to hear about the full range of services the local charity has to offer. They deliver information and advice, befriending, home help and much more.

Age UK Essex is a charity in its own right but is affiliated to the national organisation Age UK. Age UK has a range of detailed factsheets, a helpline and other services and they support and work with many other local Age UK charities. To find out what is in your area and the support they provide click on this link. You may well find that your local Age UK gives a wide range of options from practical help with welfare benefits and handyman services through to emotional support such as befriending and companionship support.

We then heard from Georgina Delves an Assistant Engagement Officer with Community 360, a Community and Voluntary Services hub organisation working across Colchester, Braintree (with some services in Tendring too!).

Georgina talked about the support the organisation gives to charities and third sector organisations and the services that they directly deliver such as community transport schemes and Shopmobility. Then Georgina let us know about the ‘My Social Prescription’ scheme, this exciting project helps people with a social need connect with local and appropriate community groups, clubs, peer networks and much more. Their skilled and knowledgeable team will help people map out the resources that are in the community and helps people find the right service, in the right place, the first time.

The Kings Fund has written about social prescribing and how it is being adopted up and down the country. There may well be a service in your area. If this is of interest to you, it is likely that either your GP practice or your local Community Voluntary Services hub will know.

After a cup of tea and a biscuit (or two!), we heard from Yvonne and Rosie from Carers First. Carers First is a large organisation working with and for unpaid/family carers across Kent, Essex, Lincolnshire, and some London boroughs. Yvonne and Rosie told us about the local services the organisation delivers and also talked about the rights that unpaid or family carers have to a carers assessment as well as rights in employment. It is almost certain that there will be a carer support organisation working in the area in which you live. Your local council will have information on how to get in contact with them if you are not already.

The next organisation we heard from was from a housing and support organisation that provides floating support or community outreach services. Peabody’s outreach support is a service that will work with people with a ‘housing-related need’ on a short term basis. The service is there for anyone in Essex over the age of 16 who needs support, guidance or advice. They can work with anyone regardless of their housing status, for example currently homeless, living in local authority homes, privately rented properties, as a housing association tenant or an owner or occupier. They can give help to resolve benefit and debt issues, help with problem neighbours, support people to gain skills to live independently and help people feel more confident.

Floating support or housing related outreach services are fairly common up and down the UK, some local authorities only fund it for certain groups of people (for instance people that are homeless or who are under 25 and have a housing need). If you want help to find a similar service in your area. Feel free to contact our MS-UK’s Helpline team and we will happily see if we can help find a relevant service.

The services and groups covered in our information session are just a snapshot of some of the services and support organisations working across the local area to Josephs Court.

Ryan, a Helpline and Information Officer with MS-UK’s Helpline then spoke about ‘filling some of the gaps’ and let the attendees know about just some of the other local options for getting help:

We are sure that there are other services, organisations and volunteer-led groups out in your community, up and down the country and often across the whole UK doing great work and giving the help that you and others need.

If there’s an organisation that you value that you think we should know about, please do get in touch on 0800 783 0518 or email us on info@ms-uk.org

Can’t stand up for falling down

Posted on: May 30 2019

Martin profile 4.jpgMSer, Blogger and Influencer Martin Baum discusses his hidden symptoms on World MS Day

This year’s theme for World MS Day is recognising invisible symptoms.  This is quite appropriate, given all those inconveniences we have to endure;  fatigue, bladder, bowel, sensitivity, pain, clumsiness, slurry speech, vision, memory - dear God, will it never end?  Well, no, actually, that’s the crazy mixed up world of Multiple Sclerosis (MS).

After navigating these symptoms for almost 40 years I've learned to live with the cards I've been dealt. If I’m tired, I rest. If my speech slurs, I involve myself with as little conversation as possible and so on. For every problem, there’s a solution, as my late father used to say.

These days I think I cope although I might manage a whole lot better if it wasn’t for the unpredictability of my balance and motor skills. The feeling of knowing I want to walk forward, only to find myself going in the opposite direction is a weird one.  It doesn’t happen often but enough, I reckon, to get on Britain’s Got Talent doing a moonwalk dance routine.

Interestingly, social functions, such as a wedding - are guaranteed to bring out the worst in my ineptitude.  Perhaps it’s the overwhelming sense of the occasion. Yes, it might be the bride’s big day, but when standing next to my wife, I begin to wildly windmill my arms desperately trying to steady myself it causes some embarrassment.

I don’t drink. Not because of a conflict with the medication I’m on but because I’ve never seen the point.  However, given the circumstances of being at a do where alcohol is in copious supply, it’s pointless trying to argue my sobriety. That’s when I feel vulnerable; episodes I cannot control, muddling my words, sometimes quite incoherently. And then overhearing comments from other guests that I’m already “four sheets to the wind”.

Yet I do not - and will not - allow this invisibility of circumstance make life any harder for me than it is.  MS has many different symptoms and let’s be honest, it sucks to be at the receiving end of something so rotten and yet, with all sincerity, I won’t allow myself to be a victim.  To be that man.  Because to be perfectly frank, however bad it is for me, I know it could be a whole lot worse.  I could be in a wheelchair, as so many others are.  But not me, so I’m grateful for that.

My mantra is to live life and not MS.  In other words, I own my multiple sclerosis; it does not own me, which is why World MS Day is so important to me.  The more ‘They’ learn then the less I’m presumed to be the local drunk.   I know I am worth so much more and come World MS Day maybe others will too.

You can read more of Martin’s MS experiences over on his blog, visit www.martinbaum.co.uk.

Forget being ‘normal’, try being unique!

Posted on: May 29 2019

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MSer and illustrator Jessie Ace discusses how MS has changed her life for the better I remember the day I was diagnosed with a stroke like it was yesterday.

Yes, you read that right, a ‘stroke’. That’s what the doctors originally thought I had.

I was only 22 at the time and had been working non-stop to complete my university degree. I’d also been working hard setting up a business for when I left because I was worried I wouldn’t find a job.

I had huge plans for when I left university. I was going to start my brand new career as an illustrator! Designing anything that could hold a pattern or character. I had big dreams of everyone owning something with one of my designs on. I’d managed to get an agent to represent me at major trade shows and I even had a book deal while I was still at university! I was so excited. All I needed to do was to finish university and start.

But life never quite goes as you expect it to does it?

The morning of my last day at university - the very last day - I didn’t quite feel ‘right’. I’d been working to exhaustion most days, so the fact that the left side of my body had gone numb and wobbly sort of made sense to me. It was just stress, right?

Wrong.

It was still numb and weird after a week so I begrudgingly dragged myself to my GP’s office for an appointment. Nothing could be wrong though, I was 22. I was perfectly healthy and never, ever got sick, I was just exhausted and stressed.

When the doctor announced she thought I’d had a stroke I thought she was crazy but at the same time I kind of thought actually it made sense, plus it meant it had already happened right? So it couldn’t get worse.

It got worse.

After coming out of hospital a week later with a diagnosis of Multiple Sclerosis (MS) I thought my life was literally over.

My illustration business I’d painstakingly built up had been taken away overnight as I now had no strength in my hand to even hold a pencil.

My university degree that I’d poured everything into for the last three years felt invalid.

Everything I knew was gone.

My life had gone.

I was gone. 

It took a good few years to accept my diagnosis. A good few years of feeling sorry for myself, blaming myself for not looking after myself as much as I should. Constantly complaining, “Why me?!” or “What did I do to deserve this?” People that I was friends with no longer wanted to know me. They didn’t understand what MS was.

“What do I do now?” I thought.

I’ve got to turn MS into something good.

I decided to use it to help others understand the condition and help inspire people to know that their life is not over, in fact it’s only just beginning.

I have far more of an appreciation for life now. I appreciate how good it feels to type with two hands when I can and to be able to take my dog for a long walk in the sunny woodland. Listening to the birds chirping in the trees and the cool air of early morning against my face.

Life is truly amazing.

I’ve learnt that anything that feels painful or scary is a wakeup call. A chance to analyse your attitudes towards life and the relationships that you’ve made. I believe it gives you a new perspective, a new purpose. An opportunity to wake up from the superficiality of the person you were before and take note of what really matters in the world. Everyone is fighting a battle that no one else knows about.

Fundraiser of the Month - Sharon Asher

Posted on: May 20 2019

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Congratulations to Sharon Asher who is this May's Fundraiser of the Month! Back in September, Sharon travelled to Scotland to cycle the slopes around the shores of the famous Loch Ness in aid of MS-UK. We caught up with her recently so she could tell us what it was like to take on a gruelling 65-mile cycle race with no previous cycling experience...

I signed up to the Etape Loch Ness cycle event last September. A close friend had decided that we would become the 'Invernairne Try Team', a team of four who would undertake challenges to test ourselves and keep fit. The initial plan was to try a triathlon, but somehow we ended up entering the Etape Loch Ness, a 65-mile cycle event that starts and finishes in Inverness, and which takes 5,600 cyclists around Loch Ness, offering spectacular views and scenery alongside some physically and mentally challenging climbs. I decided that if I was going to attempt it, I should try to raise money for a charitable cause and I chose MS-UK. Thankfully, deciding to ride for a cause kept me going to the finish line.  

My mother was diagnosed with multiple sclerosis (MS) in 1973 when I was ten years old. Back then there was little in the way of help and support and life wasn’t easy for my mum or us as a family. Sadly my brother has recently been diagnosed with MS but hopefully, with advances in research, medication, therapy, and support, his experience will be a lot more positive. I also think that by fundraising it has brought awareness to the fact that my brother has the condition and recognition of the issues faced by those diagnosed with what is often a misunderstood condition. 

I chose MS-UK because they support and encourage those with MS to continue to live life and challenge themselves. They also offer invaluable support through the MS-UK Helpline, MS-UK Counselling and the excellent magazine, New Pathways. I feel that if we previously had access to some of the services offered by MS-UK, life for us a family might have been a little easier.  

I think the biggest challenge was the fact that neither the rest of my team or I were experienced cyclists. We were all quite fit for our respective ages but most of our training over the winter had to be indoors, as with short days and icy mornings we couldn’t really get out on the bikes until March. We also had the challenge of the five-mile hill hanging over us, and all we could do was push ourselves on indoor bikes with no idea what lay in store. 

When we finally hit the road on the day, we had survived a few crashes and miscommunications, learned how to change a bike tyre, and stocked up with jelly beans to keep us going, but the furthest we had cycled was 40 miles. Thankfully the weather was kind and we all managed to complete it without any disasters. My indoor training really paid off and I am delighted to report that I finished in the middle of the pack and managed to stay on my bike up the five-mile climb. It was tough though and I was so relieved to hear the piper who welcomes riders to the top. Never has the sound of bagpipes been so welcome!

From then on it was almost all downhill, with a few nasty but shorter climbs thrown in to keep you focused. Thankfully the road home was dotted with fabulous volunteers - their encouragement was invaluable to seeing us all home. 

Would I do it again? Well, I did it enjoy it and I’ve registered interest for next year. I don’t have to make my mind up until September, but it would be a shame not to tackle it again with a bit more training and experience. However, having said that, we’ve still got a triathlon to attempt and as I’m a rubbish swimmer, the next challenge may have to be in the swimming pool. To be honest, I think I’d rather tackle that hill again! 

I have always felt that it is important to challenge yourself, and while I am fortunate to be fit and healthy enough to take on new challenges, I’ll continue to try new things. Hopefully, the money raised, with the help of MS-UK, will encourage those with MS to not give up, find ways to make the most of life and overcome their personal challenges. 

For fundraising, I used JustGiving, mainly because it makes it easy to share your page on social media and enables you to post updates to keep your donors informed. It also deals with Gift Aid, which added another £500 to my fund. Emailing the link to my friends and family and sharing updates on Facebook was invaluable. I also feel that it is essential to thank your donors personally and I took time to thank them individually on Facebook and by email if I had their email address. 

Do something different for MS-UK!

If you would like to try your hand at fundraising for MS-UK, contact Lucy on 01206 226 500, or email lucy@ms-uk.org.

MS and guilt

Posted on: May 15 2019

Annabel Nicklin.jpgMS-UK counsellor Annabel Nicklin discusses how MS can cause feelings of guilt

This week, 13-19 May, is Mental Health Awareness week. People affected by MS can often experience associating effects on their mental health too. Sometimes it can be difficult to understand what somebody means when they talk about mental health issues, and this is why Mental Health Awareness week exists. They aim to make discussions of mental health clearer and a foundation stronger support networks. By supporting Mental Health Awareness week, we can pave the way for greater openness when it comes to mental health, and strive to help those that are further affected by other conditions too.

We can all experience guilt, like any other emotion within our daily lives. Some people experience it occasionally, whilst others may experience it more frequently. Guilt can be a difficult emotion to identify and can often be disguised by feelings of anger or resentment. The feeling can often rear its head when we identify and perceive we have caused ourselves or somebody else a wrongdoing or harm. Guilt can leave us feeling pretty rubbish!

People living with a long-term health condition can experience the grieving process, which is not linked to the death of a loved one. Guilt can be a part of the grieving process where the person is seeking to try and find the answers to their questions of why something is happening to them and the impact that has on others.

People living with MS may experience this feeling for a number of reasons, some of which are discussed below

  • Letting their family, friends and colleagues down by being diagnosed with MS
  • Their MS has put additional burdens on their family life; for example through a change of lifestyle or reduced household income
  • Needing to reduce work hours, socialising, attendance at special occasions and hobbies
  • A need to now rely on others in a way they didn’t before
  • Feel personally responsible for developing MS because they didn’t exercise enough, eat healthily enough or go to their GP early enough. Or wish they had fought harder to be heard by health professionals
  • Being punished for something they feel they did wrong towards somebody else
  • Family members may also experience guilt as they may not feel they’re ‘caring enough’ or that they don’t have enough patience or compassion towards the person living with MS. Or they may blame the person for the challenges presented which can provoke guilt in the person living with MS

Most people will experience feelings of guilt at some point in their life. However, if you notice that you are constantly apologising to yourself or others this could be a telling sign that you may be experiencing feelings of guilt. Communication is key to challenging these feelings. Communicating with somebody you trust such as a family member, friend, colleague or health professional can help you to start alleviating these feelings.

If we do not recognise and process feelings of guilt this can potentially affect our mental health and wellbeing. Sometimes people may want to talk with an experienced mental health professional about their feelings of guilt in a safe, supportive and non-judgemental setting. This could be through:

Counselling or Cognitive Behavioural Therapy (CBT)

This can provide space for the person to explore and examine their thoughts and feelings. Counselling can help the person identify new ways of thinking and behaving which can improve the way they feel. 

Relationship or family therapy

The whole family may want to access counselling. This may help family members understand when it might be MS that they perceive to be the ‘problem’ or ‘worry’ and when it is something else.

Mindfulness and meditation

Can help the person to be aware of the present moment where they can calmly recognise and accept their thoughts, feelings and bodily sensations without judgement. This can be a very powerful tool in helping to alleviate feelings of guilt.

You may have read this article and relate to some of what was shared. Others may be thinking that it isn’t relevant at all. As individuals we respond differently to feelings of guilt but what is important to remember is that one of the best ways to cope with feelings of guilt is to try and be as compassionate towards yourself as you would be to somebody else.

This extract was taken from issue 113 of New Pathways magazine, the MS magazine for people with MS, by people with MS.

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Veggie Comfort Food

Posted on: May 14 2019

BUTTERNUT MAC'N'CHEESE picture.jpgThis week is National Vegetarian Week, and whether you’re a veggie looking to give something new a go or completely new to vegetarian eating, we have a simple but scrumptious recipe for you to try! We present you with…

Butternut Mac & Cheese, a recipe featured from MOB Kitchen: Feed 4 or more for under £10, by Ben Lebus, published by Pavilion Books. The veggie version of this book, MOB Veggie, is going to be realeased on 4 July 2019.

‘The creamiest mac ‘n’ cheese in the land. Butternut squash brings the sweetness. This is an absolute worldy of an M’N’C!’

Serves 4, 45 minutes preparation and cooking time.

 

Ingredients

  • 1 Butternut squash
  • Olive oil
  • 560 ml (1 pint) whole milk                                                                                               © HaaralaHamilton
  • Plain (all-purpose) flour
  • Dijon mustard
  • 500 g (1 lb/2 oz) macaroni
  • Cheddar cheese
  • Parmesan cheese
  • Fresh sage
  • Fresh rosemary
  • Salt and pepper

 

Method

  1. Preheat the oven to 180°C fan (200°C/400°F/Gas Mark 6).
  2. Peel a butternut squash and cut it into cubes. Place in a roasting pan. Drizzle with olive oil, season with salt and pepper, and roast in the hot oven for 25 minutes (until soft, not browning though).
  3. When the butternut is ready, take two-thirds of it and add to a blender. Pour the milk into the blender too, and blitz until smooth.
  4. Place a large saucepan on the heat. Add 4 tablespoons of olive oil and 1½ tablespoons of flour. Whisk it together until the flour is absorbed by the oil. At this point, start gradually adding your blended butternut mix, whisking constantly. Once mixed in, add 2 teaspoons of Dijon mustard.
  5. Get the macaroni on a separate pan (following the instructions on the packet).
  6. Time to grate your cheese. Finely grate 300 g (10½ oz) of Cheddar and 200 g (7 oz) of Parmesan.
  7. Into the butternut sauce, add 3 chopped sage leaves and a small handful of chopped rosemary. Mix them in. Then chuck in the remaining one-third of the roasted cubed butternut.
  8. Drain your macaroni, and then add it to the butternut squash pan. Mix it all together. Cheese time. Add the cheese, but save enough to sprinkle over the macaroni before going in the oven.
  9. Fold the cheese in. Once it has melted, remove the pan from the heat. Pour the macaroni into a baking dish. Sprinkle your leftover cheese on top. Add some sage and rosemary leaves, and a drizzle of olive oil.
  10. Place under the grill (broiler) for 3–4 minutes, keeping an eye on it so the cheese doesn’t burn.
  11. When the cheese is nicely browned, remove the dish from the grill. Dole up and tuck in! Enjoy, mob!

We would like your thoughts on loneliness and isolation...

Posted on: May 09 2019

Hello,Photo of Diana from MS-UK

I wanted to invite you to complete our survey which launched today about loneliness and isolation.

Last year we consulted with the MS community to inform the development of our new strategy. The most talked about gap for people affected by multiple sclerosis (MS) across the UK was appropriate support to tackle loneliness and isolation. We were told that there was simply not enough support to overcome the barriers contributing toward their isolation and not enough available to help them feel a part of something, connected to the world and less lonely.

We are now beginning to look at this area and we would like to understand this issue a bit more. The voices of people affected by multiple sclerosis inform all our work and this insight is incredibly valuable as it brings us perspectives that no one else can give. I hope you will take five minutes to complete this short survey and help us stay on course to provide people affected by MS not only with what they want from us, but crucially, how they want it. 

Take the survey online today

The topics of loneliness and isolation can be difficult to deal with at times, so if you would like any support at all please get in touch with our helpline. You can email the helpline, call us on 0800 783 0518 or connect with us online.

Thank you so much for your contribution, 

Best wishes,

Diana

Head of Services

Guest blog: 'If at first you don’t succeed, try and try again!'

Posted on: April 27 2019

Photo of SarahIn this final guest blog of MS Awareness Week, Sarah tells us all about overcoming her fears and discovering she could still exercise following a diagnosis of multiple sclerosis...

'Before I was diagnosed with multiple sclerosis (MS), I was very keen on sport and was always very active participating in sports teams, such as when I joined Colchester Ladies Hockey Club and later on, a Colchester badminton team. I also started playing golf in my mid-thirties and was a very active gardener as I got older.

'However, pre-diagnosis, I had an unexplained ‘attack’ which left me very fatigued with a tendency to quickly hit a ‘fatigue wall’ during any physical exercise, even just walking to the shop. This meant that my very active lifestyle came to something of an abrupt end, even though my mind still thought of myself as fit and active. Suddenly, I just couldn’t do the things that I used to do. Despite my mind telling my legs to run, jump or whatever, my muscles just weren’t able to comply. The messages from my brain just weren’t getting through. It was a very scary time and I began to get scared of trying to carry on doing any physical activity.

'I remember one time when I was still just able to trot a bit and I was walking across a field to our campervan, and it began to rain. I started to ‘run’ towards the van for shelter and took a big tumble which twisted my ankle, wrenched my back and gave me big bruises and muddy clothes. Luckily, I’d fallen on grass but as I’d not fallen over since I was a toddler according to my Mum, it gave me a big shock! This episode really dented my confidence and my physical activity reduced considerably after that.

'Once I received my MS diagnosis, I was overwhelmed by so many fears, worries and confusion. I found it difficult to take in and understand all the advice and information I was given. I didn’t ask about physical exercise or about many other things related to MS because I didn’t know enough to know what to ask, my mind was in a spin. All I remember was being told that ‘overdoing it’ could bring on a relapse, and to rest and pace myself or I would ‘pay for it’. This made me very worried about doing any physical exercise in case it brought on a relapse.

'After my diagnosis, I now exercise twice a week at MS-UK’s wellness centre Josephs Court on a Therabike and on the Vibeplate. I joined Josephs Court two years ago and have been aiming to strengthen my arm and leg muscles to help compensate for my severe fatigue and to reduce the risk of falls. I’m really pleased with my progress and I’m now able to do a lot more than I was able to do before I hit my ‘fatigue wall’. I’ve also learned how to pace myself better through the excellent coaching at Josephs Court and the MS-UK Mindfulness training.

'I now appreciate doing the exercise as it enables me to garden regularly, as long as I’m strict with my pacing! Now I have four grandchildren under the age of four and another on the way, and I have begun to feel that I would be missing out on enjoying family time together, but my increasing fitness and activity has meant that while I still find it very tiring to play with the three year olds, alongside looking after the one year old twins, I’ve been able to find ways to cope with them all and enjoy them without exhausting myself.

'I also have advice to those who are affected by MS and are nervous about exercising. I would say that I feel that good information is the key to living positively with MS. When I was first diagnosed 13 years ago, I didn’t ask questions. I was in denial for about 10 years before I finally plucked up the courage to go to Josephs Court. By then my fitness and strength had deteriorated massively impacting negatively on my general health and wellbeing, so I wish I had been able to ask the questions I needed to earlier in my diagnosis. I have found in the last two years that mental and physical wellbeing, with keeping yourself as fit and healthy as possible, are so important if you’re living with MS, or a similar chronic condition. When I started exercising at Josephs Court, I hit my fatigue wall almost immediately but with the help and encouragement of my Wellness Coach, Jay, I was able to slowly improve.

'Another benefit that I found with exercising is the social part of it. I loved meeting other clients, something I was very nervous about to start with. But chatting with other clients, comparing notes and encouraging others has been a lovely but unexpected bonus, and has really helped me look much more positively on myself with MS. Also, joining the social group and attending social events such as the regular coffee mornings, has been a very enjoyable revelation for me, and helps me to think so much more positively about MS.

'Finally, I find the exercising therapeutic, I feel really well after an exercise session – I am more relaxed and subsequently sleep better; and by the next morning my back and leg pain and spasticity are very much reduced. It improves my strength and stamina and increases my sense of wellbeing. Now, I can also enjoy time with my family and friends without constantly feeling exhausted. “I don’t feel ‘ill’ anymore!"'

Find out more about exercise in our Choices booklet (PDF document)

Find out more about MS Awareness Week

 

It’s time for the hair to go!

Posted on: April 26 2019

So in today’s blog I’m going to talk about something a little more serious and the topic is dealing with my hair falling out due to the chemotherapy.

 

At first I will say and as you can see from the video, it was a bit funny and humorous to me. But those are the magic words, “to me” and just me. The bigger picture is obviously that multiple sclerosis (MS) affects twice as many women as it does men, so for every one of me as a man, there are two women. As I was washing my hair this morning in the shower, there was a nice ring of my hair about my feet, which to be honest was something of a surprise and not a terribly pleasant experience. It did leave me with a curious feeling, thinking about other people that may not be approaching this in the same way that I am. I can see that a woman would be very proud of her hair, or a man for that matter, a lot of men can get uppity about losing their hair. Nature takes some men on a biological one-way trip and their hair just falls out anyway regardless of chemotherapy and that’s just life, there are plenty of strapping bald men out there.

I did actually feel my heart sink a little bit when I thought about people who are proud of their hair and spend a lot of money on it. It can define some people. This is not meant to sound like it’s a vanity thing because it just isn’t, but watching my hair falling out as I was washing it this morning left me with a small feeling of dread for myself. What if it doesn’t grow back? Which isn’t too bad, as I used to shave my head all the time anyway. But for those that don’t view this the same way as I do, it must be such a huge heavy heart sinking feeling. I can see how it might feel at this stage of the initial HSCT chemotherapy, almost like a point of no return, the hair is going to go. Writing this, it makes me feel more than a bit solemn when I think about the big picture and the many different people that this will involve.

One of the few things I can think of that may help in this situation is to have a good positive mental attitude. I don’t mean to sound patronising, but it can become such a strong powerful weapon to have in your little arsenal and that is what gets me through. Yeah, the hair is going right now, but just look to the future not so far away. You’re talking six months from now, which is a snap in our lifetimes really and isn’t really that long at all. We would have collectively come through the other side of the chemotherapy, and we shall be growing fresh new baby soft hair, colour back in our cheeks, a spring in our step and no MS.

Another positive view on this was one my wife brought up. She said this is my old MS hair and it’s been removed to make way for my new non-MS hair for the new non-MS me. It’s a very useful sentiment and one I will carry closely with me as I go through each stage of treatment.

No MS is what we need to focus on right here, right now as the collective, going through the chemotherapy to rid ourselves of the MS that we are all battling with. My eyes are firmly fixed on that, and as I have said before I want to run, probably not for the first few weeks or months, but I will run. We the collective MSers now have a way out of the previously never-ending inescapable tunnel that I personally could never see the end of. HSCT is a gift that few are blessed to receive, so losing our hair in the meantime is an insignificantly small price to pay for us to have our lives back, with or without limitations.

Scott has decided that he will shave his beloved beard off to raise money for MS-UK. Anyone who has been following his story will know how much his beard means to him, so if you would like to donate, visit his JustGiving page or Facebook fundraisier. 

If you’ve been effected by the topic discussed in this blog, please contact the MS-UK Hepline on 0800 783 0518.

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