This time next week MS-UK will be celebrating MS Awareness Week, and you can join us!
This year we are spreading the word about our newest national service, MS-UK Counselling. I would love you to get involved by downloading our Twitter and Facebook graphics...by adding them to your profiles you will be helping us reach even more people affected by multiple sclerosis who may benefit from counselling.
Right click on these images and select 'Save image as...' to download them to your computer:
Thank you for your help!
April is always an exciting month for us here at MS-UK as we mark MS Awareness Week, and 2018 is no different!
This year we are celebrating our newest national service, MS-UK Counselling. We launched the pilot of this service in October 2017 and since then have delivered over 150 telephone counselling sessions to people with a diagnosis of multiple sclerosis. But we want to help even more people!
At MS-UK, we believe that it’s good to talk. However, we know that there can still be a stigma around accessing counselling, and we want to break down these barriers so people diagnosed with multiple sclerosis can get the support they need.
So, this MS Awareness Week I ask you to help us spread the message that it’s good to talk! Throughout the week of 23 – 27 April we will be posting on Facebook and Twitter all about MS-UK Counselling, and it would be great if you could help us spread the word by retweeting or sharing our posts. Thank you!
Keep an eye on our blog for updates as we near the big week...
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!
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.
With most of the country feeling the big freeze, here’s our top tips for travelling safe and keeping warm…
Find out more about our services to support people affected by multiple sclerosis (MS) on our website.
In her latest guest blog, Joanne discusses preparing for her son’s start at nursery and coping with a multiple sclerosis (MS) flare…
Little man has another development milestone coming up, going to nursery.
It doesn’t seems two minutes ago, he was putting his head up, sitting, then eating real food, walking then speaking.
Little man is only going to nursery for a couple of days but it’s a big step for him, an even bigger one for me.
He was going to start this month but due to illness (me mainly, we had bugs which take twice as long for me for them to shuffle off and also I’ve had a flare up, hence little writing, sorry). I wasn’t in the right place to start. It’s about little man settling in, but also as a new routine for him, l have to be ready too.
To prepare, we’ve been reading books about starting nursery (I’d recommend Spot and Pirate Pete). I’ve also been potty training (not a necessity).
I put a post on social media to see what may be useful. Everyone’s suggestions were helpful, recommending:
I saw a quote from Rosalind Dorlen, which said ‘handling chronic illness is about learning to live in balance’.
I remind myself of this. I thought I’d do lots before this milestone. The toughest part is beating yourself up about expectations. Learning to live in balance. Good days, you act like super woman, and on bad days, you feel like a rubbish mummy for not having any energy to do anything and switching CBeebies on again (a god send!)
Frustration kicks in. My flare up has caused me to fall a few times, my mobility rubbish, writing poor, fighting fatigue and generally feeling like what’s in the potty! As a mummy, I still have the same challenges but as a mummy with MS it is harder. Putting my needs ahead of little man’s and Daddy isn’t easy but a necessity. Getting the right support from family, friends, support groups and social media contacts all help. But I find it hard to ask or accept help. I know I need to do better!
I’m hoping nursery will be the right development milestone for little man, and also for me. Or at least my muse for writing.
I’d love to hear how you tackle development milestones (no chronic illness required).
Yesterday evening, BBC One’s The One Show aired the story of one MSers decision to end his life at Dignitas in Switzerland.
Colin Campbell, 57, from Scotland was diagnosed with primary progressive multiple sclerosis (PPMS) in 1995. In the knowledge that his MS would get progressively worse he had decided that “another winter would be unbearable”. He had chosen 15 June as the day he was going to die. He didn’t want to be alive and more disabled than he is now. His story even made it onto a local Scottish news channel. Little did he know that just half a mile down the road from where he was living a stranger was watching - another MSer Rhona Tynan. She had watched his story and decided that she “couldn’t let this man go ahead and do this without trying”, so she phoned up the TV station and got in touch with Colin. She asked him to come and see her and how she was coping.
“I just wanted to see if I could help him see if things could be better,” she said.
Colin did go and see Rhona and they formed an unexpected friendship. After spending two “enjoyable” days together and after discussing things with her Colin decided to cancel his 15 June appointment in Switzerland. Seven months later, Colin discussed how meeting Rhona had changed his life. He said: “My flat had become a prison. I couldn’t get out, there were two flights of stairs. You lose the will to live.
“No one had explained to me what options there were,” he explained. “If Rhona hadn’t have contacted me that would have been it for me on the 15 June. It would have been all over,” he added.
Rhona said: “It became very clear to me that Colin didn’t have the correct support for quality of life.” “I know a scooter gave me quality of life because it allowed me to get out and about. Colin didn’t have one and he didn’t know how to go about getting one.” So they decided to have a day out together trying out and testing some scooters. But getting a scooter was just the beginning. He also found out that he was entitled to a ground floor accommodation and 24-hour assisted living. Inspired by her relationship with Colin, Rhona has now set up a networking group for other people who have found themselves in a similar situation. Rhona has also recently been to Mexico for stem cell treatment and is seeing positive results. She talks about her improvements on the show and has most recently managed to walk 50 steps while holding her husband’s hand, something she wasn’t able to do before the treatment. If you missed the show, which aired at 7pm on 14 Feb 2018, and would like to watch the full interview visit the BBC iPlayer and scroll through to 32:40 minutes. If you would like to read more about assisted dying, subscribe to New Pathways magazine issue 107 and read a great piece written by Journalist and progressive MSer Ian Cook, as he discusses your right to die. New Pathways is a magazine for people living with MS. The much loved title has been running for 25 years and is a great source of information and support for many MSers. To subscribe click here, or call 01206 226500.
In February 2018, there will be a 2 day Switch2Move workshop in London. Open to any Movement Practitioner and Care facilitator, such as gym teachers, dancers, art-therapists, managers in Healthcare, etc. this workshop will offer tools and guidance to encourage novice learners to discover new realms through creative movement. The workshop will be led by Andrew Greenwood, who cofounded the organisation Dance for Health and created education programs specialised for people with conditions such as multiple sclerosis and Parkinson’s.
There will be a free open demo class on the Sunday morning and Andrew would love if any people with multiple sclerosis or other mobility challenges could attend!
If you'd like to take part in this you need to arrive by 10am, and wear comfortable clothes and shoes. This open demo class is free of charge, and you can take someone along with you. It will last up to an hour and half, which includes some time for feedback. Andrew's main aim is to communicate to wider society and especially to the medical world that dance can be a source of health and wellbeing. You can find out more on the Switch2Move website now.
In his latest humorous guest blog Doug Ankerman champions an easy form of exercise for MSers and those of a certain age...
Warning: This post contains pictures that may frighten young children. Please ‘exercise’ caution. People workout for their pecs, abs, bi's, tri's, traps, delts, lats, quads, hammy's and glutes - but they rarely exercise the muscles...of their face! Did you know you have 43 muscles in your face just waiting to be used? Instead, we let gravity take its toll by pulling and stretching our faces downward. Skin sagging...till we begin to look less like ourselves - and more like Droopy Dog! Forget all those age-reducing potions and the creamy-crap you smear on every day. Start looking younger from the inside out by toning up the muscles of your grill. Exercising your face is goofy-fun, easy-to-do and even those of us with MS can do it! I've put on my headband and 1980's Gore-Tex running suit to show you how...
Make your face rrreeeeaaaalll small. Squeezing your eyes shut, pursing your lips like you are sucking a lemon.
Then, make your face big. Big as ever. Eyes wide. Mouth open (watch for flies). And do it over again several times.
Make a face to your right.
And then, take it to the left. Do it again and again.
Wiggle your eyebrows. Puff out your cheeks. Crinkle your sniffer. Smile big. Smile bigger.
Move your lips like you are making out with your favourite movie star. (Mine is Clint Eastwood - maybe I'll rethink that one!) You can't go wrong because ANY exaggerated movement is GREAT for your face. And you'll feel instant results. Your face will be tighter, firmer and toner (wait, is that a word?) You can exercise your face in just two minutes. And you can do it anywhere, except maybe in public! Get started now. You will thank me later. Doug
You can read more of Doug's hilarious posts on his blog 'My Odd Sock'
In her latest guest blog Chloe gives us an insight into her first year of Tysabri treatment…
I can’t believe it’s been a year since I embarked on my new multiple sclerosis (MS) treatment, Tysabri.
What I started in trepidation has now become my lifeline. It has really transformed my life…but let’s start from the beginning.
As treatments go, it’s pretty non-invasive. I remember the first time well…I was nervous. I used to have a fear of having cannulas put in (after an unpleasant experience when I was younger) so to have one every month was nerve-racking. I sat down in the high backed treatment room chair, my heart fluttering. Heather, my MS nurse, had just started at the MS unit herself, so we were embarking on this journey together.
So after basic observations (temperature, blood pressure) were taken it was time for the cannula. And what a fuss I had made! I had built it up into something awful in my head, but it was absolutely fine. It was no more painful than having a blood test, and I’ve had plenty of those in the past! What a relief it was though.
Once the cannula was in, I was rigged up to my first infusion and we were away. I couldn’t feel anything going in, there was certainly no stinging or irritation, so all I had to do was sit back and relax. Heather joked that it was ‘enforced rest’ for me because, what with the children, it’s very rare that I get an hour in the day to just sit back and read a book.
The infusion took roughly an hour, and then I had to sit and wait for another hour to make sure I didn’t have any ill effects. There were no side-effects for me at all. If anything I felt quite buzzed up! It was probably from the relief!
The whole appointment took 2 hours, and then I was sent on my merry way.
The ‘buzzed up’ feeling lasted a day or two afterwards. I felt stronger and more energetic.
13 infusions down, and a whole year later and I feel like I can reflect now on any positive effect Tysabri has had.
Firstly, I haven’t had a relapse since I have started. I normally have at least one relapse a year, so already that is a very good sign and shows that something positive is going on. I don’t get the ‘buzzed up’ feeling after treatment any more (if anything I come out feeling tired), but every month is the same non-painful and simple procedure.
I can honestly say that I can do more now than before. Tysabri isn’t meant to get rid of day-to-day symptoms such as fatigue, but what it has done has pushed me into a good state of remission. My symptoms are manageable, and being able to do more exercise, I feel healthier. At the end of each month I do find myself flagging a bit, so I look forward to my appointments so I can get ‘topped up’ again.
I am so happy to have found a treatment that finally works for me. I had previously tried Rebif, Copaxone, Avonex, and Tecfidera, but none had helped reduce down my rate of relapses. I was in a bad place with my depression also at a peak, so Tysabri really felt like a light at the end of a tunnel.
But of course, there have to be down sides.
Firstly, Tysabri is only eligible for those who have two or more severe relapses in a year. I was ‘lucky’ in that after two relapses close together I was now eligible to try it, but for years I had just missed out.
Secondly, there’s a risk of developing Progressive multifocal leukoencephalopathy (PML).
Tysabri has its fair share of common side effects (tiredness, headache, muscle pain, to name a few) but a less common and extremely serious side effect can be contracting a brain infection called PML (Progressive multifocal leukoencephalopathy). This can lead to severe disability or even death. A test is done before treatment to see whether you have something called the JC virus. If you are positive, then it increases your chances of contracting PML from 1 in 10,000 to 1 in 1,000.
For the past year, I have been JC negative, so for me the positives outweigh the negative risks. However, would I continue on treatment if I turn out to be JC positive? That’s a really tricky question and one I will have to dwell on if the situation arises. I have met other people on Tysabri who are JC positive, but carry on with treatment anyway, but I’m not sure whether I would feel comfortable taking the extra risk.
That’s a topic for another day though. So far Tysabri has turned out to be a positive experience, and it’s allowed me to take on a new lease of life. I can make plans again without having to worry about cancelling them, I can take the dog for a walk independently and confidently and can play with my children without getting too tired. Long may it continue!
You can follow Chloe’s story at tantrumsandtingles.blogspot.co.uk.