Allergy UK is calling for people to consider the needs of people with food allergies and avoid stockpiling Free From products. At MS-UK, we received a call from a lady with multiple sclerosis (MS) who was worried she would soon not have anything at all to eat. ‘I’m away from home at the moment visiting my son who is in a care home,’ she said. ‘I have various stomach issues and when I’m unwell all I can manage are two Alpro yoghurts per day – that’s what keeps me alive. But there is only one Tesco where I live, and it is a 25-mile round trip to get to. I will have to go every day, and only be allowed three each time, that’s if they have any.
‘I feel like people with severe allergies should be able to buy more than three, because we are so limited on what we can actually eat.
Allergy UK, the leading charity for people living with allergies, says it is appealing to shoppers to think about those that require the “free-from” produce to feed their families.
For those who are elderly, vulnerable, or work for the NHS, supermarkets have created special allocate shopping hours. They are as follows:
8-9am every Monday, Wednesday and Friday reserved for NHS and social care workers alongside elderly and vulnerable customers.
NHS hour 7am-8am every day but not on Sundays. Must show NHS ID.
No special hours for the elderly.
Prioritised a one-hour slot for elderly and vulnerable every Monday, Wednesday and Friday at 9am in all stores except smaller Express shops.
NHS staff can visit large stores one hour before the usual opening time every Sunday.
Prioritising NHS workers and elderly in larger stores every Monday, Wednesday and Friday from 8-9am.
OAPs. The first hour every Monday and Thursday.
NHS and emergency service workers. First hour each Tuesday and Friday.
On Friday, it launched a protected shopping period for the elderly and vulnerable at every store which will take place during the first opening hour.
The first hour of trading – Priority hours for elderly and vulnerable people.
The final hour of trading - NHS staff only, ID must be shown.
In the latest issue of New Pathways, we look at the ways animals help people living with a long-term condition like MS. Here, one MSer tells us what her pets mean to her - read the rest of the article in the magazine.
“Having my animals means I have a responsibility to look after them,” explains MSer Ann Kerr. “I have to go out each and every day to them. I may not feel the same every day, but they don't know that, they need me. No matter how I feel in the morning, my animals are pleased to see me, and I always feel better for being with them. They don't comment if I'm a bit slower today, they accept me and are always pleased I'm there.
“I can, and do, spend all day with my animals, I never get bored, they are all different and all have different needs, but all of them give pleasure to me.”
Living in Scotland, Anne says she has a determined streak that means she won’t let MS beat her. “I ignore it and get on with life,” she says. “A neurologist told me about the Ashton Embry Best Bet Diet and I’ve followed it ever since – I don’t take any medication. Having my animals keeps my mind busy and active – I still muck my horses out, and ride.”
Anne took up riding as an adult, which she says is later in life than most keen riders, but was a natural and even took to endurance riding, covering vast distances on her pony, Tia. “Endurance riding is like orienteering on horseback – you are given a map and various check points and off you go.
“Tia came to me as a general riding pony, but we developed into a very good endurance riding team, doing distances of up to 50 miles at a time!”
Anne still has Tia, who has been with her around 18 years, and who she calls a “very good friend.” Also trotting around is Midge, a 37-year-old retired Shetland pony. “She came on loan from a friend to keep Tia company, and the friend has let her stay here as she is very happy with Tia,” explains Anne.
There’s also Saffie, a 10-year-old highland pony that Anne has had for four years. “She’s my youngster, a very gentle pony who follows you around like a puppy.” Saffie is the only pony Anne rides now. “I feel very safe riding her, and she adapts to whatever the rider requires. Due to mobility, I need to use a mounting block (a tall box which the rider stands on for ease in getting onto a horse) and she stands still and is very patient while I get on.
“Then there’s Bess, my 14-year-old collie-lab cross. She goes everywhere with us and again, is a very gentle girl. I’ve had her since she was tiny. I was riding Tia through a local farm when the farmer offered to show me the puppy he had left from a litter and it was love at first sight! She's never put a paw wrong since.
“Finally, I have Scoobie, a 12 year old ginger cat who came from the same farm that I got Bess from. I was then banned from going through that farm by my husband!
“They are all such good animals, so loving, well-behaved, calm and quiet, and they all come when they are called.”
Keeping active with MS
It’s clear Anne deeply loves her animals, but they offer more than just love, they give her a purpose and something that takes her mind off of having MS. “The animals ensure that I'm active every day,” says Anne. “It might not always be the same level of activity, but I'm always active, always needed and always having to plan their wellbeing.
“They keep my mind active and focused because I have to plan what I'm going to be doing every day, what I'll need, for example, do I have everything the animals need in, or do I need to order feed, and so on. Physically I need to look after the stables on a daily basis, I groom ponies, I pick feet out, clear the fields, and that's just the horses – the cat and the dog also need to be looked after and exercised. There are no days off for me – not that that’s a problem!”
John Mills tells us about his marathon motivation and how training helps him manage his MS
Here’s a quick introduction for those of you that don’t know me. My name’s John Mills and I’m going to be running the London Marathon for MS-UK this year.
I was delighted to be asked to blog on the run-up to the big race by the team at MS-UK. It’s a cause that’s very personal to me. The year 2017 was one of big changes. My wife gave birth to our beautiful daughter, I turned 30, and I was diagnosed with multiple sclerosis (MS).
In this blog, and further forthcoming ones, I will write about my journey and progress from the perspective of a runner, how my training is progressing and how my MS is in relation to this.
I tried my hardest for over a year to ignore my diagnosis. I didn’t want MS to define who I was but, with the help of MS-UK, I have now realised that I can help define the condition instead, by raising awareness and promoting the fantastic work that MS-UK do.
Having already started fundraising, raising over £2,000 in a month, and meeting 20 or so #TeamPurple runners at a recent event means that there is now no turning back for me!
I am using the Nike Running Club (NRC) app for no other reason really than I have had it since 2013 and I know what to expect when using its training plans.
Royal Parks run
To get me off to the best start possible, I signed up for the Royal Parks Half Marathon. I am so pleased that I did. More than anything, I learnt what to expect come the 26 April 2020.
Here is what I took away from the day.
1. As silly as it sounds, 16,000 people is a lot to get across the start (and finish) line and that number will be doubled come April, which feels a little overwhelming.
2. Headphones are not needed. You won’t need headphones come race day (for training they are a must, for me anyway) as there is so much more going on to keep you occupied other than a playlist; the sights of London, steel bands, marching bands and the incredible support. It’s amazing that someone who you have never met before shouting your name can put a smile on your face after just having ran 13 miles!
3. Try to at least roughly plan where your supporters will be beforehand as you will undoubtedly miss them, as I did, if you don’t know where they are. My first recommendation to anybody running the marathon for the first time is to try and get some race day experience so you know what to expect.
My wife Sasha and I ran the Colchester half marathon for the MS Society back in 2016 because someone Sasha knows had been diagnosed with MS earlier that year. We raised £1,800 and, ironically, I had no idea that just a year later I’d be diagnosed myself.
I’ve always enjoyed running, but even more so now, as for me it is a form of meditation. All I need to think about is putting one foot in front of the other – nothing else matters. You are only competing against yourself. I wanted to act now with regards to running a marathon because with MS you just don’t know if or when it will have a greater impact on your everyday life.
Running and, more specifically, training for the Royal Parks half marathon and now the London marathon is part of my daily routine. It may sound odd, but if I wasn’t running, fatigue would get the better of me and I would spend the rest of the day in bed.
Today is a perfect example of that. I find maintaining a routine is key and exercise forms a strong part of that. I’m told that there is science behind that, but I am by no means an expert. All I know is that it helps me.
Training for the marathon is a great incentive for me to get out and maintain a certain level of fitness. After a run I get a sense of accomplishment and feel like I am beating MS one day at a time.
Currently I am not on any disease-modifying therapy for my MS, but I am due to start Ocrevus which works perfectly around training as it’s a six-monthly infusion. I take it as a sign that I am supposed to be running this marathon.
To sponsor John, visit his JustGiving page https://www.justgiving.com/fundraising/john-mills-msmyselfandi
Doing Veganuary, or just fancy cutting down on meat? Try this delicious Chinese-style meal from the ‘£1 Chef’ Miguel Barclay, famous for creating delicious recipes on a shoestring. Perfect for tight January purse strings, this meal costs just £1 per serving.
Chinese-style oyster mushrooms
You can make this dish with any type of mushroom, or any veg really, but I find oyster mushrooms have a wonderfully meaty texture that make this a satisfying and substantial alternative to a Friday night Chinese takeaway.
½ mug of basmati rice 1 mug of water
Handful of oyster mushrooms
Splash of sesame oil
1 garlic clove, sliced
Squeeze of golden syrup or honey
Squeeze of sriracha sauce
Pinch of sesame seeds
½ spring onion, sliced
Put the rice and water in a saucepan and cook over a medium heat with the lid on for about 7 minutes, until all the water has been absorbed and the rice is cooked.
Meanwhile, pan-fry the oyster mushrooms in a splash of sesame oil over a medium heat for a few minutes, then add the garlic and fry for a few more minutes until the garlic starts to brown. Add the golden syrup and sriracha and simmer for a few minutes until the sauce starts to thicken, then stir in a splash of soy sauce.
Serve the mushrooms on a bed of basmati rice and sprinkle with the sesame seeds and spring onion.
Extracted from Miguel Barclay’s Meat-Free One Pound Meals, Published by Headline, £16.99.
MS Clinical Nurse Practitioner Miranda Olding reveals the different treatment options for this common MS symptom
Spasticity, otherwise known as a tightening or stiffness of the muscle, is due to increased muscle tone and exaggerated response to muscle stretch. It is a common multiple sclerosis (MS) symptom and can affect the way we function, such as walking and posture. In addition, it can increase fatigue and cause pain. Unmanaged, it can lead to permanently shortened muscles called contractures and can affect daily living.
Spasticity also refers to involuntary muscle contractions or sudden movements, which range from a mild feeling of tightness, to severe, painful spasms, often of the legs. Here we focus on the problem of constant stiffness.
Treatment of spasticity is ideally done with the person with MS at the centre of a multidisciplinary team, with neuro physiotherapist, occupational therapist (OT), MS nurse, any relevant consultant, and possibly wheelchair services all liaising with each other.
The first thing to be aware of is that anything that is bothering the body can trigger or exacerbate spasticity in MS, so before medication, these 'trigger factors' need to be dealt with. They include, but are not limited to, infection, constipation, urinary retention, sore skin or pressure areas, anything that pinches, rubs or chafes, increased emotional stress and pain.
Muscle relaxant medication
The key with all muscle relaxants is to start low and go slow. You can even cut tablets in half with a tablet cutter from a pharmacy and start with a smaller dose. The idea is that by gradually increasing it every few days, you find a dose which reduces the problem, without causing too many side effects. The first people usually try is baclofen, and the most common side effects are drowsiness, or feeling weak. Because MS involves both stiffness and weakness in the muscles, you can find that a degree of stiffness is needed to maintain the strength needed for standing, so it can be a fine balance.
NICE guidelines recommend gabapentin as the next treatment to try if baclofen is not right for you. This is often used for nerve pain in MS, but also has a muscle relaxant effect. However, some people find the sedating side effects, or the fact that they are putting on weight, too difficult.
Another muscle relaxant that can be tried, which is less sedating, is tizanidine. But you will need a blood test before and for the first three months of treatment to check that your liver is coping and is not being harmed.
Occasionally, an older muscle relaxant, dantrolene, is tried. Diazepam (valium) is also effective as a short term muscle relaxant, but it is easy to become dependent on this. Clonazepam can also be tried.
When just a couple of defined muscles are causing the problems, botulinum toxin (botox) can be very effective when injected to paralyze these muscles. This needs to be repeated around every three months.
There has been evidence for some time that components of the cannabis plant can help some people with MS spasticity and pain. Sativex, the cannabis-derived medicine, is licensed to treat spasticity in people with MS, and is now available on NHS prescription from a specialist doctor, so speak to your neurologist or MS nurse to find out more. It is still illegal to possess this drug if you do not have a prescription.
CBD oil is a cannabis-based product that contains none of the psychoactive component, TCH, and so is legal for anyone to use. In studies where there was evidence of effectiveness, doses ranged from 0.8 to 1.8mg, taken between 2-4 times per day. The easiest way to control the dose is to take it in liquid form, and start with one drop under the tongue, then increase as necessary.
If other medications aren’t proving effective, a referral can be made to be seen in a specialist spasticity clinic, where a baclofen pump can be considered. This involves a tiny dose of baclofen being delivered straight to the spinal column via a small plastic tube, fitted to a pump, about the size of a shoe polish tin, which is inserted just under the skin in the abdomen. As the dose is so small, people have a lot less side effects than with tablets.
The way that you sit and lie in bed is important to break up the pattern of tight muscles with MS spasticity. However, this is something a physio or occupational therapists (OTs) can help with. OTs can also assist with night time splints to stretch out hands that have become very tight and to help ensure that all seating and equipment is supportive.
Keeping a full range of motion is important. Start by seeing a neuro-physio, and then keep things going with exercise. Everybody should be able to do some exercise or stretching, whether this is attending a regular exercise or yoga class, using regular or assisted gym equipment, including from a wheelchair, or even just passive stretching with a helper. A resource for this, 'Stretching with a helper' can be downloaded here https://bit.ly/2rrqHFu
Exercise not only helps to stretch out tight muscles, but also to reduce spasticity and spasm, boost fitness and lift mood.
Blogger Martin Baum was invited to an event at the House of Commons recently to launch a campaign. Here is his story of his experience...
In an age where blogging is a symbol of 21st century communication, the aim is as much for a blog to be read as it is to be written. As a multiple sclerosis (MS) blogger for various MS-related organisations I am no exception as I continue to try to engage with a loyal and growing readership.
As a writer I enjoy what I do very much but just like having MS it’s a lonely existence. However, sometimes, the unexpected does happen. I recently received an invitation from a charity called Overcoming MS (OMS) to attend a reception they were hosting at the House of Commons.
It was to launch a new campaign video giving everyone living with MS hope of recovery and it was not something I was going to pass up. The reception was sponsored by Stephen Lloyd MP and held in the Strangers Dining Room.
The person behind the promise of living a life free from MS was Professor George Jelinek, an Australian who devised the OMS seven-step recovery program which has enabled him to remain symptom free for 20 years. In truth, however, I was sceptical. Ever since beta interferons failed to sustain the promise of being the cure, I have become naturally wary of anything being promoted as such.
On reading more about Professor Jelinek’s regime prior to my trip to Westminster, it occurred to me my own lifestyle was already accommodating much of what he was advocating. The seven-step program is about following a strict curriculum of diet, sun, vitamin D, exercise, meditation, mindfulness, approved modifying medication, helping to prevent family members from getting MS, and changing a lifestyle for a healthier one.
Whilst I am not vegan I eat very little meat, preferring fish instead. I meditate regularly for ten minutes a day, I exercise as much as I am able to and enjoy the benefits of mindfulness. Most of all, I’ve been changing my lifestyle for a healthier one for several years which means, should I ever want to fully engage with the program, I’m only a couple of steps shy.
That afternoon I met many MSers sharing a happy disposition to be living with the condition because their symptoms were no longer an issue. Many claimed their lesions had been repelled and that they were now leading happier MS-free lives as a result of following OMS.
Throughout the afternoon I mingled with many inspirational people. Just like any of us, neither MPs nor nobility are immune from being touched by MS because they have family and friends affected by it. Stephen Lloyd’s reason for being there was because he had a constituent who had MS who also follows the OMS approach. That was reason enough for him to sponsor the event.
As the afternoon ended and I parted from some truly inspiring people, I was left feeling that the OMS seven-step recovery program had already succeeded in helping many people. But then my thoughts turned to those who weren’t but might have benefited if they had.
Having MS is a game of patience. We bide our time in what often feels like an isolated existence, waiting for a more traditional breakthrough in the quest to find a cure for the condition. I’m left feeling that more MSers should at least try something like the OMS approach that’s as near to organic as it gets.
It’s National Stress Awareness Day, but we all know it’s important to take stock of your mental health not just today, but every day.
Stress affects us all at some point and avoiding it completely can be nearly impossible. But taking steps to reduce it and manage your response to it, can be extremely beneficial. Research has shown that it can even help prevent new disease activity in people with multiple sclerosis (MS).
So if you’re craving a little more relaxation, read on.
Research has shown that meditation and yoga can reduce stress and cause changes in the brain that allow more stress resilience. Meditation slows the heartbeat and calms the mind, leaving you in a relaxed state. You can find free guided meditations online. Try www.freemindfulness.org/download
The role of exercise in helping reduce stress is well proven. One study found that exercise can not only help you manage it in the present, but it can also act as a buffer to protect you from future effects, too.
Personal trainer Dom Thorpe specialises in exercise for people with MS and offers an ‘MS Warrior’ programme online. Visit www.dt-training.co.uk/ms-warrior-programme/
Pile your plate high with prebiotics, because there is evidence that these feed the good bacteria in your gut, and improve the physiological impact of stress. Prebiotics are fibres found in foods such as chicory, Jerusalem artichokes, raw garlic, leeks and onions. When this fibre is digested by beneficial gut bacteria, the microbes release byproducts which researchers think influence brain function.
Prebiotics were also found to increase the amount of rapid-eye-movement (REM) sleep that happens. REM sleep is believed to be critical for promoting recovery from stress, with research showing that those who get more REM sleep after a traumatic event are less likely to experience post-traumatic stress disorder.
Finally, when you’re in need of a snack, you could do a lot worse than to reach for a handful of walnuts. A study found these tasty nuts and their oil may help prepare the body to deal with stress. Other studies have shown omega 3 fatty acids, such as the ones found in walnuts, can reduce bad cholesterol and inflammation markers in the body.
For more information about living with multiple sclerosis, subscribe to New Pathways magazine, your MS magazine of choice.
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.
Subscribe to New Pathways magazine for just £19.99 a year to get all the latest MS news, research updates and real life stories right on your doormat.
The countries with the highest population of people affected by multiple sclerosis (MS) are located in the northern hemisphere, where sunlight levels can be very low in winter, for example, Scotland. This is often associated with the body not producing enough vitamin D. So, today’s blog is going to look into some facts that you might not have known about ‘the sunshine vitamin’…
1. Sunscreen can reduce vitamin D intake
Although it is important to protect your skin in the sun, sunscreen can block out the suns ultra-violet (UVB) rays, which can lower your potential intake of vitamin D. This means that it may take you longer to reach your daily intake.
It's not known exactly how much time is needed in the sun to make enough vitamin D to meet the body's requirements. This is because there are a number of factors that can affect how vitamin D is made, such as your skin colour or how much skin you have exposed.
But according to the NHS website you should be careful not to burn in the sun and take care to cover up or protect your skin with sunscreen before your skin starts to turn red or burn.
2. We don’t get enough of it
It has been widely reported that approximately 1 billion people worldwide are vitamin D deficient or insufficient, that’s around 15% of the world’s population. However, when we compare this to reports of UK vitamin D levels, it’s much higher here. According to this data, 74% of UK adults over 25 have lower levels than they should. That’s quite a difference! So next time the sun is shining, make sure you’re heading outside for some vitamin D!
3. It helps build strong bones
Vitamin D is vital for our calcium intake, which of course is paramount for strong bones. Lack of vitamin D can lead to rickets in children or osteoporosis in adults, which is essentially the weakening of bones.
4. Intake is affected by skin tone
Strangely, pale skin tones absorb more vitamin D from less sunlight than other skin tones. The natural pigment melanin in darker skin tones means it requires more exposure to the sun in order to get the right intake. It has been said that those with darker skin tones need up to 3-6 times more exposure than those with pale skin.
5. You don’t have to get it from the sun
It’s widely believed that you can only get vitamin D from the sun, but you can get it in your diet as well. For Inuit’s who practically live with next to no sunlight, they eat food such as oily fish which is very rich in the sunshine vitamin. So you don’t necessarily need the sun to get your levels up!
Want more information about Vitamin D or other supplements?
Order a free copy of our Diet and Supplement’s Choices booklet today using our quick online order form.
This 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.