Hello, We are updating our Choices leaflets about diet, Primary Progressive MS (PPMS), speech and swallowing, visual symptoms and Low Dose Naltrexone (LDN). But we need your help! If you have a diagnosis of multiple sclerosis (MS) please take our survey and share your experiences to help us shape the leaflets. 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! Best wishes,
The MS-UK Helpline team
Tomorrow we’ll be closing our latest Choices leaflet survey!
Thank you for your help!
Diana Crowe, Head of Services
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
Our fifth and final blog this week in our series of how to stave off colds this winter is all about the flu vaccination...
It’s a controversial subject – should you or shouldn’t you have it? Flu vaccination is estimated to be effective in 17-53% of older adults compared to 70-90% of younger people.
But if you do decide to have the flu vaccination, a recent study conducted by Nottingham University has found that being in a good mood when you have your flu jab boosts its efficiency.
The team of scientists measured negative mood, positive mood, physical activity, diet and sleep three times a week over a six week period in a group of 138 older people due to have their flu jab. Then they examined how well the jab was working by measuring the amount of influenza antibody in the blood at four weeks and 16 weeks after the vaccination.
The results showed that of all of the factors measured, only positive mood over the six week observational period predicted how well the jab worked – with good mood associated with higher levels of antibody. In fact, when the researchers looked at influences on the day of vaccination itself, they found an even greater effect on how well it worked, accounting for between 8 and 14% of the variability in antibody levels.
If you would like information and support about anything we have covered this week, or would just like to chat, the MS-UK Helpline is here to help. Call us on 0800 783 0518, email us email@example.com or chat with us online at www.ms-uk.org/livewebchat.
As the cold nights draw in and the scarves and hats come out of the cupboard, we'll be looking at ways to stave off colds this winter. Over the next few days we'll be looking at a different thing you can do...
We all know that eating a healthy diet will ensure our bodies get all the vitamins and nutrients it needs to stay healthy, but when the weather changes most of us go searching for comfort food. Don’t deny yourself an indulgent treat, but try to eat foods that will fill you up so you won’t want to snack.
A recent study from the University of Warwick revealed chicken, mackerel, pork shoulder and beef sirloin steak as some of the most filling foods. They also found that plums, apricots, avocados, lentils and almonds have the same hunger-busting effect.
Check back tomorrow for our blog about vitamins!
Read our Choices leaflet about diet and nutrition and download it for free at www.ms-uk.org/choiceslife.
In her latest blog Jo ponders the delayed effects on multiple sclerosis (MS) after exertion and asks if she will ever learn...
So, I’ve written before about the delayed effects on MS after exertion, but the other thing is the effect of getting carried away and overdoing it on a ‘good day’. Those days when you feel a tiny bit better. A day to potter at home which you think is a rest.
Except it’s not a rest. It’s a constant to-do list. Everywhere you look is a reminder of something that needs doing. Washing waiting to go on, stuff to put away, bills to pay, tidying to do, pots to wash, emails to write. The list is literally endless.
So on a day when I’m feeling a bit better I think I’ll tackle some jobs (especially if the sun is shining…that seems to make me think I have superhuman abilities!) Usually tidying jobs where one leads to another. You know the type of thing, you’re putting something away and before you know it you’re rearranging a cupboard or clearing out a drawer or tackling a mini paper mountain that turns into an avalanche. And because I’m doing it at home I think it doesn’t use energy, but of course it does and the fatigue can still strike at any time. Usually when stuff is out everywhere and I don’t have the energy to finish and put it all away!
I seem to think that bending down to sort a cupboard won’t affect my legs, that time doing admin on the computer won’t strain my eyes and make me dizzy and that repeatedly reaching up to hang the washing on the line won’t affect my coordination. But it does.
Everytime! I forget and get caught up in the moment of feeling I have actually achieved something, until it’s too late and I almost can’t move from overwhelming fatigue or symptom flare up. I think this time will be different. This time the MS won’t notice. Shh…I’m just going to put the washing out, don’t tell the MS that I’ve already sorted out a kitchen cupboard and had a busy weekend…;)
It is so disappointing! I have a few moments or maybe even an hour where I feel pretty good. I get stuff done. Those things that have built up when I haven’t felt so good are being ticked off the list. A sense of accomplishment washes over me. Success! But it doesn’t last…all of a sudden a wave of fatigue hits me, symptoms flare and then it’s back to earth with a great big bump.
Therefore, note to self. Physical exertion is the same whether it is in the house, in the garden or at the gym. Will I ever learn? Probably not. Those moments of accomplishment are too enticing! But maybe I can try a little harder with pacing myself so the impact isn’t so bad. Unless the sun is shining, then all bets are off!
In this guest blog Lee talks about volunteering with MS-UK in the marketing department...
Hi I’m Lee and throughout the university summer break I’ve been volunteering behind the scenes, in the marketing department at MS-UK.
I spent a lot of time researching the organisation before deciding to get in touch, and as luck would have it a voluntary position was just about to be advertised, seeking a helping hand at making sense of social media data. As a chemistry student myself, I feel obliged to point out that chemists love number-crunching and spreadsheets – it’s like our third favourite thing to do after quoting Breaking Bad, and spelling our names out with chemical symbols. Needless to say I was keen to get involved and help as much as I possibly could.
What’s really struck me at my time here is the atmosphere – everybody is exceptionally warm and enthusiastic, making me feel like a welcome member of the team. I was even invited along to our team day at a working farm; quickly becoming the envy of my friends as my Snapchat story filled up with videos of pigs and pygmy goats.
I’ve done a ton of research and learned a lot while working on this project, but have also had plenty of opportunity to be creative too. I got involved in the filming and editing of our recent Choices leaflets video, which was a lot of fun as I tried my best to accentuate Ryan’s excellent performance on-screen. Several years from now, when an Academy Award inevitably finds its way through my letterbox, I’ll know exactly who to credit for kick-starting my Hollywood career.
It’s been a fantastic experience volunteering for MS-UK, I am very grateful for the trust and responsibilities I have been given, and I would urge anyone else considering it to get involved too!
In the past month we’ve been updating some of our Choices leaflets, and you can now read them on our website.
Watch our short video today about how we update our Choices leaflets.
We have updated our leaflets about…
If you have any questions about any of the topics covered in our Choices leaflets, you can get in touch with me to any of the MS-UK Helpline team via live web chat or by calling us on 0800 783 0510.
In her second guest blog for us Jo discusses MS fatigue and how it can creep up on you unexpectedly...
For those of us with MS, planning becomes second nature. As we only have a limited amount of energy available we know there is only so much we can do before symptoms flare up or we run out of batteries. So if there is a particularly big event approaching I
try to plan a rest day either side to compensate. Simple.
However, I have now discovered a new phenomenon which I like to call ‘the day after, the day after, the night before’. It appears that often the day after a big event or a busy day I actually don’t feel too bad. (Just to clarify a ‘big event’ or ‘busy day’ could be a football match or night out, but equally could be ‘did some housework’ or ‘went to the shops’!) However the day after that? I often feel dreadful! I’m exhausted, the pain is back or my legs are wobbly and I struggle to function.
A recent example of this, was I went to see a band I had always wanted to see. It was ambitious I admit. I rested the day before and on the day itself, got a lift to and from the concert and had an amazing time (it made a change to have my ears ringing for another reason rather than the usual tinnitus!) And the next day? I didn’t feel too bad. Tired from the late night and the extra standing and walking, but pretty OK. ‘Got away with that’ I thought. I was pleasantly surprised and as it turns out lulled into a completely false sense of security, because the day after? I felt awful! Pain, nausea, crippling fatigue…all the usual suspects.
So why is this happening? I have absolutely no idea, but it’s really annoying and makes that whole planning thing a whole lot harder! I now have to try and allow two days rest after a particularly busy day, which isn’t always practical. And if I have a run of a few days with commitments and appointments it means I have to cut everything else right back to have any chance of doing them. It means no washing will be done, meals will be chosen by their ease of preparation (hello egg and chips) and socialising will be cut right back, because these mundane daily activities use valuable energy that isn’t going spare.
And that’s OK. If that’s what it takes to ensure I have the best chance of doing the things I have to and want to do, then so be it. Sadly my hangover days are long behind me (hard enough to stay on my feet and find my words sober!) so the traditional day after the night before is not a problem…but the day after, the day after, the night before? That’s a whole different kind of challenge that hair of the dog or a fry up just won’t fix!
Last month, I was one of the guest speakers at the Patient Information Forum conference talking about our experiences of Involving Users in Developing Health Information. Professor Theo Raynor, University of Leeds and Luto Research, set the context for the day and his presentation addressed how involving users is not just the right thing to do – it makes a real difference; and how ‘expert’ patients and ‘real’ patients both have a role to play in developing good information.
Trishna Bharadia, who was diagnosed with multiple sclerosis in 2008 and has since become an award-winning advocate, talked about her experiences of accessing health information and being involved in the development of health information from a patient’s perspective. In particular she gave an example of a case study on developing a Living Well With MS course for Sue Ryder in Nettlebed.
I spoke about how MS-UK uses a number of methods to engage with our clients. For example, our Virtual Insight Panel (VIP) helps us to review our Choices leaflets and our clients also provide us with real life quotes to bring these resources alive. We also consult with our VIP’s on other organisational decisions to ensure that we are listening to the voices of those that are affected by MS and using them to inform our work.
Earlier this year we also set up a Steering Group for our wellness centre, Josephs Court in Colchester, Essex. This group is made up of seven clients who volunteer their time every other month to meet us. These meetings enable us to consult with them about our plans, listen to their ideas and those of the clients of Joseph Court who they represent.
Overall, the key message I came away with from the conference with was that MS-UK needs to introduce a face to face user testing group to further improve the way we develop and produce our Choices leaflets. I am certainly excited about how we can incorporate this into our processes and continue to demonstrate our commitment to our mission and values which include providing high-quality, accessible and relevant information.
If you would like to join our VIP, register your interest at www.ms-uk.org/vip.
Diana Baxter, Head of Services