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 email@example.com.
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!
On Monday 13 November Nileema (our Counselling Coordinator) and myself went along to the MS Trust conference in Hinckley, Leicester!
The MS Trust is a UK charity that produce multiple sclerosis (MS) information and support MS specialist health professionals. This year they celebrated their 21st annual conference, welcoming some 300 guests to learn, share expertise and focus on improving care for people living with MS.
We went along to seminars about sharing best practice and understanding MS and mental health. At the plenary session we learnt more about high risk MS drugs and keeping safe, as well as understanding and supporting risk perception to people with MS. All of the speakers were excellent, and it was a fantastic day.
Nileema and I also spoke to people about our new service – MS-UK Counselling. This is a brand new telephone counselling service for people living with MS in the UK. You can find out more and register on our website at www.ms-uk.org/counselling.
Thank you to the MS Trust for making us feel so welcome, and thank you to all of the MS professionals who stopped by our stand and chatted with us.
Looking forward to next year’s conference!
We are refreshing our Choices leaflets for people affected by multiple sclerosis (MS) and we need your real life experience to help shape them!
We want to always provide people with the fullest range of choices available to them; not only drugs but all types of treatments and lifestyle changes. We hope that by including your experiences, our leaflets will truly resonate with people who turn to us for help.
Please be assured that any comments you give us will remain anonymous when published in our Choices leaflets.
Thank you for your help!
The MS-UK Helpline team
In her second guest blog, Joanne, tells us how her multiple sclerosis (MS) started and how it is being a Mummy with MS...
It all started with eyeliner. I was trying to put some on before going to work. I thought ‘crikey I can’t see very well, maybe I have overdone it.’ So off I trotted to the opticians, who then referred me to the hospital.
My journey began. I was told I’ve got Fuch’s disease, more prominent in people who have different colour eyes like me (I still need to be monitored for this, no, I’m not related to the late David Bowie!)
I started with daily fatigue and weakness in my arms. Googling symptoms, I convinced myself of all sorts including a brain tumour. My eyesight was getting worse. My kindle was my best friend as I could zoom in and read (like all three books of 50 Shades!) I was off work and eventually the hospital told me I had optic neuritis.
The first mention of MS started. Lots of procedures including an MRI (wear socks so you feet don’t get cold is one of my tips) and my spinal fluid was taken twice. A never ending journey of hospital appointments. I didn’t want to believe it because I hadn’t been diagnosed, which came a year and a half later so I spent a lot of time in limbo land. It was frustrating. I didn’t really have a clue about MS. I’m still learning.
As you know, there are many symptoms of MS. Mine have included daily chronic fatigue, pain, weakness ( I haven’t properly written in over two years), numbness, poor balance (falling off my bike was fun, not!) rubbish walking (I now have a stick) slurred speech (no, I’m not drunk, but probably sound it!) swallowing problems, bladder issues (what joy!) smelling of smoke (apparently this is an unusual symptom) and various other things. I was on Copaxone injections before I fell pregnant. I had a really bad reaction and ended up in hospital. I was also on Tecfidera tablets for ten months but came off recently, am waiting for a neurology appointment and debating my options.
My main thing has been trying to deal with being a mummy with MS. I found there isn’t anything that addresses how you look after yourself and a little one at the same time, so I started to write. I’ve been writing for the MS Society, other MS charities like MS Trust and Shift MS and my blog, poorlyparents.wordpress.com.
I’m no expert on mummy or MS stuff. The biggest thing I found helpful is gaining an understanding from others who are in the same boat. I’ve not met anybody like me. Maybe social media will help. Thank you for listening. Here’s to more blogs.
In this guest blog, for World MS Day, Joanne shares her tips for dealing with multiple sclerosis (MS) and being a parent…
Everyone has challenges, mine is juggling MS and parenthood. With no control over either of them, I read to be prepared (girl guide in me!) but I couldn’t find anything that addresses being a good Mum (whatever that is!) whilst juggling a chronic condition. So I started to write.
With today being World MS Day, it’s all about awareness. My MS journey (I sound sooo talent show!) is like many who experience MS. Various symptoms to contend with (optic neuritis, chronic fatigue, balance, walking, slurred speech, brain fog, sense of smell, poor writing, bladder problems, very low immunity) and a fair share of MRIs, spinal fluid taps, side effects and health appointments. But my main challenge is being little man’s mummy whilst trying to juggle me.
My latest blog “Kiss Goodbye” has my tips to get a grip of any MonSter…
1. It’s personal. I haven’t been able to write well for over a year. I don’t like asking my husband to write for me. I recently got a stair rail fitted and my speech isn’t great. Like parenting, MS is a moving feast. You have to deal with every personal challenge. I know it’s not the end of the world.
2. Don’t be strong, just be yourself. I stole this from my MS friend. Whatever works for you, just do it. You read about being a warrior. Fighting. Throw it all out of the window if you want to. Be yourself whenever you got your diagnosis. Be kind to yourself. Apply your lippy if it makes you feel great.
3. The drugs don’t work. My last blog was about drugs. Like the previous point, do what works for you. Drugs. Attitudes. Whatever. Read, get opinions, but go with your gut.
4. Adapt. I got a stair rail fitted and it really helps. I don’t know why I struggled for so long. You may not wish to admit but adapt.
5. Shout! Shout for help and support. I didn’t for ages. Probably due to pride and stupidity. You realise who really counts.
This month sees World MS Day (Wednesday 31 May), and here at MS-UK we will be celebrating throughout the day on Twitterand Facebook, to raise awareness of multiple sclerosis and hopefully share some top tips from you!
Got some inspiration for how to handle incontinence? Know a great way to ease neuropathic pain? Whatever your top tip for living life with MS, we want to hear from you!
We will be using the hashtag #LifewithMS throughout the whole day, so do join in!
I look forward to sharing your tips on the day, and thanks for being part of the conversation,
Digital Officer, MS-UK
We wanted to let you know about our latest survey…we would like to know your thoughts about our Helpline opening hours.
Currently the MS-UK Helpline is open Monday to Friday 9am to 5pm and is available via the freephone telephone number (0800 783 0518), live web chat or email.
The Helpline is staffed by trained advisors (that’s us!) to offer all the information you may need to make your own decisions.
We are reviewing our opening hours and exploring whether there is demand for us to extend those hours to provide a service through existing and maybe new channels.
Please take the time to complete our survey to help us to make plans for the future.
Thank you so much for helping us with this research, your opinion will help us shape this service for the future!
Kim, Ryan and Laura
The MS-UK Helpline team
Elissa Benson, NCT Breastfeeding Counsellor and Chartered Neuro Physio, talks breastfeeding and MS
There is a lot of information already out there in the public domain that can inform a mother when it comes to making a decision about breastfeeding and there is no reason why a mother with multiple sclerosis (MS) shouldn’t breastfeed if she chooses. Her MS isn’t going to affect her milk supply and she isn’t going to transmit it to the baby. It’s also worth noting that some research shows that MS mothers who exclusively breastfeed are almost half as likely to suffer a postpartum relapse.
A matter of medication
Some medications are not indicated for use when breastfeeding, but that doesn’t mean you can’t breastfeed. The best thing to do is consult with your neurologist or MS nurse, who will be able to advise you based on your MS.
Some women opt to delay using medication so they can breastfeed, others feel the medication will allow them to look after their baby and that’s their priority. It really depends on what medication you need to take and what stage your MS is at, but there are options and it’s your own personal decision.
To find out more information about which medications are, or are not compatible with breastfeeding by visiting the Breastfeeding Networks website.
Don’t be too hard on yourself
Under normal circumstances mothers have to make all kinds of decisions about breastfeeding, and for some mothers with MS their options are more limited, so actually dealing with how you feel about that is really important. That’s where breastfeeding counsellors come in. We can help mothers explore their options and how they feel about it. It’s an aspect that can often be lost because when you are dealing with the practicalities you can forget to deal with feelings.
Being a new mother is stressful for anyone and if you have concerns over feeding your baby, that can add to the stress. It’s part of our role to help mothers manage their situation so that it can be less stressful and doesn’t make them worse. We all know that stress can exacerbate MS.
Find the right position
Laid back breastfeeding, using a baby led approach, may be a good option to explore. Basically instead of the mother trying to attach the baby, they just let the baby do it themselves because they are pre-programmed to do it. There are lots of different positions to try, but if you are able to access individual support it can help you find a position that works for you and your baby
Dealing with fatigue
Fatigue is a big issue for any new mother, but having MS can make it a lot worse. Having had a baby, you are entering a new phase in your life where you are going to be sleep deprived and your normal sleep pattern disrupted, meanwhile your body is also trying to recover from pregnancy and birth. Managing fatigue is very important, but it is also worth knowing that the hormones your body releases when you’re breastfeeding are the ones that help it return to its pre-pregnancy state.
To discuss your breastfeeding options and find an NCT drop-in session, you can call the NCT Breastfeeding Counsellors Helpline on 0300 330 0700, or visit https://www.nct.org.uk/
We have been using an online live chat system for some time now and it has shown to be popular. Certainly for those who may not feel in a position to pick up the telephone for whatever reason, and for those who would like a more instant response than email. It also means we have been able to chat to people abroad too, when they may have found it difficult to find support.
Our Digital Officer, John, has now developed a nice little function whereby a pop up appears on every page of our website to show people that the live chat facility is available. This has certainly increased the amount of web chats we have received which is great as it has meant we have reached out to more people affected by MS.
If we are engaged - either chatting to someone already, or perhaps on the telephone - then a message can be left via email and we will get back to you as soon as we can.
We look forward to hearing from you,
Laura, Kim and Ryan
The MS-UK Helpline team
Last year we launched our 'Getting to know you' survey, asking questions all about yourself - from how old you are to what MS-UK services you may have used in the past. Everything is completely anonymous, and we don't ask you for any contact details at all.
The reason we do this is because we really like to know about the people we're supporting. MS-UK puts people affected by multiple sclerosis at the heart of our work, and we want to be able to provide services that really meet your needs. We also want to make sure we're reaching as many different people as possible.
You can take part in our survey online today - it shouldn't take you more than ten minutes. If you would like a paper copy, please do email me or call 01206 226500 and I will send you one in the post.
Thanks for your help with this,