I am pleased to say New Pathways issue 108 is now landing on doormats across the country! As always we have a packed issue, full of all the latest multiple sclerosis (MS) news and research, including drug updates and the latest cannabis study findings.
As the sunshine begins to make an appearance, we get topical with lots on vitamin D. MSer Ian Cook puts vitamin D tablets and sprays to the test (see page 30) and Kahn Johnson reveals what happened when his vitamin D levels became toxic on page 16.
Also in this issue, MS Nurse Miranda Olding discusses sexual dsyfunction and what can be done to help (page 14) and we have the big interview with the star of Channel 4 programme 'The Search for a Miracle Cure' Mark Lewis (page 24).
I hope you enjoy reading this issue, and please do email me your comments and letters to firstname.lastname@example.org.
Editor, New Pathways
P.S. Don't forget New Pathways is available to read on the go. Download the My MS-UK app from the App store on your phone or tablet device today!
MS-UK’s Wellness Centre, Josephs Court works closely with the University of Essex to support occupational therapy students (OTS) by providing role-emerging placements while they train.
Each year the Josephs Court team is invited to speak at a symposium with the new OT recruits about role-emerging placements at its Wellness Centre in Colchester, Essex and increase their knowledge of multiple sclerosis (MS).
Diana Crowe, Head of Services, said: ‘We took the opportunity to promote all of our services, but focused on what we deliver at Josephs Court, such as the exercise equipment and the benefits this brings to clients.’
‘There was good interaction and we were asked about the social activities we provide, so we discussed the MS-UK Social Group in Colchester, which has regular coffee mornings and other events such as bingo!’
‘Due to recent headline news regarding HSTC there was an interest in how this treatment could impact on us as a charity and our clients. Just like everyone else we will have to wait and see how the treatment develops, but we will continue to support people with MS for as long as they need us.’
‘We split into groups, which gave us a chance to speak in more detail with some of the students,’ explains Dean Jeffreys, Centre Manager. ‘The students were interested to know about APS Therapy, how we link up with other services and how politics impacts on our strategy.’
Speakers from St Helena’s Hospice spoke about its gardening project for those at the end of life and Craig, from Pots the Soldier, spoke about his post-traumatic stress diagnosis after leaving the army and how he found a love of pottery thanks to the support of OTs – very inspirational!
‘It was great to see the students so interested in the work MS-UK does and we hope to continue to work with Essex University over the coming years. Who knows one day we may have our own MS-UK Occupational Therapist,’ adds Diana.
Issue 107 of New Pathways is out now, with the latest news, features and exclusive interviews from some of leading MS experts. So I thought I’d give you a roundup of what’s not to be missed.
In this edition I interviewed Jane Felstead, star of Channel 4 reality show Made in Chelsea. Jane had been experiencing symptoms for around two decades until recently when she finally demanded an answer from her doctor. Read her story and why she feels it’s so important to fight for a diagnosis on page 24.
MS can throw up a variety of symptoms on a daily basis, but how can general life events such as the menopause impact the condition? Turn to page 12 to find out more.
If you’re looking for a complementary therapy and haven’t tried reflexology, Lee Anthony Taylor, a worldwide authority and specialist in reflexology for MS discusses the benefits on page 14.
It’s a question we at MS-UK are asked a lot – ‘what is medical retirement?’ On page 42 our resident HR columnist Rebecca Armstrong explains what it is and how to make it work for you.
Plus, with all this talk about gut health in the news we provide an update on the latest development and how it affects you. Turn to page 18 for ‘The truth about gut health’.
New Pathways magazine is a paper magazine, but is also available in a variety of accessible formats including an audio CD, PDF and plain text – we even have an app (search My MS-UK), so if you would like to subscribe click here.
I hope you enjoy reading!
With the many different symptoms MS likes to throw at us on occasion, sometimes we turn to complementary therapies. There are lots out there, from reflexology, massage and herbal remedies to name a few, but which ones do you choose?
I have an aromatherapy massage once every six weeks and that helps release tension from my body, as well as giving me one hour to relax with no distractions. It’s by no means a cure for my MS, but it’s beneficial to my overall wellbeing and I’ll take that.
In the upcoming issue of New Pathways I’m going to be looking at acupuncture and I would like to speak with those of you who have tried it. Did it work for you? What were the benefits? Would you recommend it? I’d love to hear your experiences, so if you’d like to share them, email me at email@example.com by the 29 September.
I look forward to hearing from you all!
Editor of New Pathways
In her latest guest blog Chloe discusses the effects of sugar on multiple sclerosis and the work of Dr Terry Wahls...
I’ve had MS for 16 years now and it’s taken all of those 16 years for me to realise the obvious. Sugar is bad for me and my MS.
Okay okay…I’ve actually always known but have turned a very blind eye to it in the past. I mean sugar is delicious! I have a good diet, don’t get me wrong, but who can resist a sugary treat?! Not me.
The problem with sugar is that the effects are instantaneous with me. If I have something sugary I go tingly. End of story. Even having a yoghurt (pumped full of sugar it seems) would leave me with tingles all down the right side of my face. So the signs that sugar was no good for me were there.
It’s only been recently though that I’ve decided to do something about it. There’s been a lot of research done into the harmful effects of sugar and I couldn’t help but take notice.
There are a lot of websites in particular that talk about the effects sugar has on MS, and how one should avoid it. I found the work of Dr Terry Wahls in particular an interesting read, and was fascinated by her book, The Wahls’ Protocol. The protocol is designed to ‘restore health and vitality to those with MS’, and was created by Dr Wahls after conventional medicine had no effect on the progression of her MS. I, and Dr Wahls, are not suggesting that people with MS shun treatment and go with the diet instead, but purely that it’s an alternative for those who have had no result from treatment. Likewise, it’s a healthy and beneficial diet for all those who have chronic autoimmune conditions, whether they are on treatment or not. I’m on Tysabri which fingers crossed seems to be doing good things so far, but had been failed by 3 treatments before.
Dr Wahls found that changing to a super nutrient Paleo diet transformed her MS. She went from being wheelchair bound to riding a bike and I urge you to look at her work. Though I haven’t managed to stick strictly to the Paleo diet myself (no wheat, barley, dairy, eggs, processed food, sugar, and reduced intake of legumes and potatoes is hard to get your head around when you’re trying to man-handle a 2 year old and living in a predominantly vegetarian household!) the emphasis on sugar was what I really found interesting. To hugely summarise, Dr Wahls’ principle is that care needs to be taken to make sure our body is working as efficiently as possible at a very cellular level. Feeding our body a high-sugar and high-starch diet ‘gum up’ your mitochondria (an important part of our cells) meaning they diminish efficiency. Sugars and starches in particular affect your body detrimentally in two ways. Firstly they are high in calories and fill you up, but provide very little nutritional value. Secondly, they encourage the growth of unfavourable yeasts and bacteria in your gut which can lead to a lot of other problems*.
That evidence, coupled with the fact that I knew full well that it was detrimental to my health (with the instant tingles) it was a no-brainer that I had to cut out sugar from my diet. But my goodness me, it was hard. There is sugar in everything. It’s only when you start looking that you realise the hidden sugars that plague us. I had two weeks of complete detox from sugar (including fruit) and now I am very careful with what I eat, trying to eliminate it as much as possible and not eat more than 10g of sugar a day. I’m no angel though…obviously I still have bad days and slip. But at least I’m aware of the bad effect sugar has on my diet. If I eat some and get tingling and a headache then that’s my own fault and I have no-one else to blame.
6 weeks in and I’m amazed at the effect eating a low sugar diet has had though. Not only have the tingles gone, but I’ve had more energy and more stamina. I just feel brighter. I’ll never know whether it is no-sugar that has done this, or whether it’s coincidence and I’m just in a good remission, but I figured that any changes I can make to my lifestyle to help things along are only a good thing. If you’re stuck in a bit of a fatigue rut, I urge you to give a low-sugar diet a go. What have you got to lose?
*All information can be found in Dr Terry Wahls & Eve Adamson’s book The Wahls’ Protocol (2015), published by Avery.
Hi everyone, Tomorrow we'll be closing our Choices leaflet survey, so if you would like help us shape them please do complete our short survey! The questions are about complementary therapies, Personal Independence Payment (PIP) and cannabis and MS. Please be assured that any comments you give us will remain anonymous when published in our Choices leaflet. Thank you for your help! Best wishes, Diana Diana Baxter, Head of Services