MSer and Feature Writer Ian Cook discusses ageing and multiple sclerosis
As you know, lots of people live very long and fulfilling lives with multiple sclerosis (MS). But when it comes to public discussions of life, death and MS, there is often talk in the media of euthanasia, even though this is a choice actually made by a tiny minority of MSers. Sadly, you see little discussion of the decades of great life the vast majority of us live with MS. Unfortunately, as with most news coverage, everyone focuses on the negative.
Looking forward to my 62nd birthday in a few months’ time, it’s reassuring, therefore, to read research published recently by the US National Multiple Sclerosis Society (NMSS), that the majority of us MSers can look forward to an almost normal lifespan – well, a lifespan just a few years shorter than the general population.
The exact figure is seven years shorter but this isn’t so bad when you consider people with type 2 diabetes, on average, have a shorter life expectancy of about 10 years and people with type 1 diabetes, on average, a shorter life expectancy of about 20 years. MS is very little in comparison to these relatively common conditions.
As well as longevity, the research publicised by the NMSS challenges other preconceptions. MSers not only have roughly the same lifespan as others, but mortality studies show MSers tend to die from many of the same conditions like cancer and heart disease as people who don’t have MS. Although that doesn’t exactly sound cheery, my point is that MS isn’t always a factor. Apart from cases of severe MS, which are relatively rare, the prognosis is generally good.
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MSer and Feature Writer Ian Cook catches up with two HSCT patients one year on from the launch of new MS charity AIMS
Just over one year ago, I attended a black tie fundraising ball at Villa Park, Birmingham, launching a new charity promoting haematopoietic stem cell therapy (HSCT) for MS.
The new charity, Auto Immune & Multiple Sclerosis (AIMS), was set up to help people with auto-immune illnesses, particularly MS, to access HSCT treatment. HSCT is where an MS patient’s immune system is replaced or ‘re-booted’, and as a result the myelin coating of nerves in the brain and spinal cord no longer suffer the auto-immune attacks that characterise MS.
HSCT uses high-dose chemotherapy which wipes out the body’s existing immune system. The immune system is then rebuilt using stem cells which have been ‘harvested’ from the patient’s blood before chemotherapy and are then re-introduced afterwards. The newly rebooted immune system suffers no further auto-immune attacks, preventing further damage.
At the AIMS launch I met a number of MS patients who had received HSCT. So how are they doing one year on? One of the people I met was Damien Scott, who was diagnosed with relapsing remitting MS in 2004. Damien travelled to Moscow in 2017 for treatment at the A.A. Maximov Haematology and Cell Therapy Department of the National Pirogov Medical Surgical Centre. At the Villa Park event Damien gave me some background information about his trip to Moscow.
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I wanted to let you know that MS-UK staff are now working remotely to ensure that we can keep as many of our services available to support people living with multiple sclerosis (MS) as possible.
Due to a high volume of calls, responses from our helpline service may be delayed. However, if there is no one available to take your call please leave information about your query, email address and telephone number and a Helpline Information Officer will get back to you as soon as possible. Please note that it is likely that we will be able to respond to emails faster than telephone messages and that you may receive responses outside of office hours. To contact the MS-UK Helpline email email@example.com or call 0800 783 0518.
The MS-UK Counselling service will continue to run as normal and is unaffected. To register for MS-UK Counselling visit www.ms-uk.org/counselling.
If you attend Josephs Court, we will be ensuring you hear from us regularly and have created some exercise videos to support your activity at home. You can find them on our YouTube channel.
We appreciate your support and wish you all well during this challenging time.
Amy Woolf, CEO of MS-UK
I just wanted to let you know our opening hours for the festive period as we get closer to the mince pies!
Tuesday 24 December - Open 9am to 1pm
Wednesday 25 December to Wednesday 01 January - Closed
Thursday 02 January - Open from 9am
If you attend our wellness centre in Essex, Josephs Court, we will also be opening for a couple of days so you can continue your exercises throughout the festive period. Josephs Court will be open from 9am to 1pm on Friday 27 December and Monday 30 December.
During the holidays, you can always contact our helpline team and we will respond in the New Year when we return.
If you would like to speak to someone before then, the Samaritans are open 24/7 and you can contact them in a variety of ways. You can visit the Samaritans website or call them on 116 123.
Wishing you a merry time if you are celebrating Christmas and a very happy New Year from all the teams here at MS-UK!
Head of Services
Inflammation is essential to our survival. It’s our first line of defence against the outside world. It attracts cells of the immune system to the site of danger to destroy pathogens and helps heal injury. As a short-lived response it performs excellently as protector and healer.
In multiple sclerosis (MS) inflammation is ongoing (chronic), with the myelin covering being attached by neurons wrongly identified as pathogens. The immune system attacks pathogens with oxidation. The oxidative damage causes further inflammation.
An unhealthy gut microbiome can be a source of inflammation. Boston researchers found MSer’s microbiome linked to ongoing inflammation. Luckily the microbiome is easily changed with food choices that nourish the microbiome.
Foods described below can have anti-inflammatory effects, either directly helping to resolve inflammation/oxidative stress, or indirectly by feeding our microbiome so anti-inflammatory microbes crowd out pro-inflammatory ones.
Champion foods (both direct and indirect effect)
Particularly rich dark, leafy greens contain polyphenols and antioxidants, which can directly reduce inflammation. Vegetable’s high fibre content feeds the microbiome. A small Italian trial found a high vegetable diet reduced inflammation, improved gut microbiome and helping to improve overall health.
Especially deeply coloured berries, which are potent antioxidants that can reduce inflammation. They also provide food for the microbiome, helping to keep your gut healthy. Try and make sure you are getting your 5-a-day, and aim for 10 if you can, after the NHS recently reported that 10 portions of fruit and vegetables is even better for us.
3. Oily fish
Mackerel, salmon and sardines are all sources of essential fatty acids (EFAs) omega-3s, which UK researcher found increased anti-inflammatory bacteria in the microbiome and may help directly resolve inflammation.
These are a source of required omega-6 EFA, which can be inflammatory in excess. Walnuts have a balance of omega-6 and omega-3, and research has shown they promote anti-inflammatory microbes. Research found that walnut oil reduced inflammation in a mouse model of MS.
Another great source of EFAs. Some seeds, such as flax and chia seeds have a high anti-inflammatory omega-3 content.
6. Extra-virgin olive oil
Extra-virgin olive oil is a source of antioxidant vitamin E and anti-inflammatory polyphenols. A review of multiple trials indicated that this oil could improve inflammatory disease symptoms.
Ginger has well known anti-inflammatory properties. An Iranian researcher indicated it may reduce inflammation in mice with experimental autoimmune encephalomyelitis (EAE).
It’s been in the news a lot recently and is now well known for its anti-inflammatory properties, but it has poor absorption. Consume it with healthy fats and black pepper to improve the absorption.
Indirect effect via the microbiota
9. Legumes and wholegrains
Another good source of fibre which has been found to benefit gut microbiota.
Out of the above list seven constitute the Mediterranean diet. Interestingly, the Mediterranean diet is very similar to the high vegetable diet used in the Italian study mentioned in point one. It showed an anti-inflammatory effect in MSers and reduced disability. The anti-inflammatory Mediterranean diet is being looked at by a variety of experts and particularly for people with MS.
Sharon was diagnosed with multiple sclerosis in 2007 and prompted a career change to nutrition with the goal of empowering people to take positive steps toward feeling better. Sharon aims to share her nutritional knowledge, the latest nutritional and lifestyle research and expertise from healthcare professionals. Visit Sharon’s website for more information about her and her latest articles.
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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.
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.
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.
MS-UK will be closed on the bank holiday following this weekend, so just to remind you of the times:
Friday 24 May - open from 9am - 5pm
Monday 27 May - closed
Thank you all and do have a lovely bank holiday!
Best wishes, The MS-UK team
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
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.
'I was inspired to run for MS-UK by my Aunt Karen who was diagnosed with relapsing remitting multiple sclerosis (RRMS) in 2012. Despite how much of a change her diagnosis has brought to her life and the daily challenges it now presents to her, I find myself in awe with how she hasn’t let it hold her back. I was drawn to MS-UK in particular due to the great services they offer to those affected, such as the helpline, counselling service and wellness centre facility. Services like these were so valuable and essential to helping my aunt, so raising money to ensure they are provided to others who need them means a lot.
'The main challenge I faced when I found out I had a charity place last June was that I had never run before and it didn’t come very naturally to me. My main support came through joining a local running group, which has really helped me through the winter training runs and longer runs recently.
'To fundraise for MS-UK I utilised my job as a Makeup Artist in order to hold a luxury beauty raffle. I was very lucky to be gifted items after asking various colleagues for contributions to the prizes. I managed to gather together enough items for three large prizes and decided to sell tickets for £5 each. I posted about the raffle on social media, as well as my local running group’s Facebook page. I sold 109 tickets and raised a total of £545. After the success and popularity of the first raffle I’m looking to hold a second one!
'Make sure to put yourself out there, whether it be on social media or in your work place. I’ve posted regular updates of my training onto Facebook and Instagram to let people know about my progression and to let them know about why I’m running for MS-UK. Also not being afraid to reach out to local businesses or friends to see if they would be willing to donate items as prizes, if you decide to do a raffle. I was really overwhelmed by people’s generosity, so it’s always worth asking!
'I feel extremely lucky and proud to be able to run the London Marathon for my aunt and to be able to raise money for MS-UK. I’ve recently completed my longest training run (20 miles), which I never could have imagined myself doing! Knowing I’m running for such a great cause has really helped to motivate and keep me going with my training, and although I’m nervous, I can’t wait for start-line of the marathon!'
Next week will mark MS Awareness Week 2019. This year we’re very excited to be working alongside the MS Trust and the National MS Therapy Centres to raise awareness of the benefits of exercise.
We have developed a free booklet all about exercise which includes some seated exercises to help you get started. We hope you find this useful and it includes first-hand quotes from other people who have been in your position - people who can truly understand and empathise with your feelings about exercise.
The MS-UK Helpline team