We just wanted to let you know about this important source of information that our MS-UK Helpline team regularly uses to support the multiple sclerosis (MS) community.
The Disability Rights Handbook is a guide to benefits and services for anyone with a disability, their families, carers and advisers. It contains a wealth of information relating to the benefits system, as well as social care services and help for carers. This guide will be relevant to many people living with MS.
Clients who use the MS-UK Helpline have let us know how valuable the information provided by our advisors is and, since a lot of that information can be found in the Disability Rights Handbook, we wanted to share it with you. If you would like to buy your own copy, you can do so on the Disability Rights UK website store.
We wanted to let you know this was available to pre-order as last year’s handbook sold out in quite quickly!
As always, though, our MS advisors are available to listen to you, talk things through with you and keep giving you as much helpful information and support as possible.
‘Doing a skydive has always been the top of my bucket list, so when I finally built up the nerve, doing it for charity really was a no brainer. Being able to have this amazing experience and raise money for a great cause…how amazing!
‘I knew straight away I wanted the money to go to a multiple sclerosis (MS) charity and after doing some research MS-UK really stood out to me.
‘My Gramps suffered with MS for a long time and my only memories of him are in a wheelchair but he always had a smile on his face. The care he received was always great so I am so pleased to be able to contribute to help other people.
‘I am so overwhelmed by how much I have raised so far and am desperate to reach £1,000 by the time it comes to my jump! I’m excited about it now but when it comes down to it I think I might have to be pushed out of the plane!!
We are really pleased to say Laura has smashed her £1,000 target, but you can still donate on her JustGiving page today!
Your donations help MS-UK support even more people affected by multiple sclerosisto really make the most of today and live life to the full. Thank you!
This year MS-UK is commemorating 25 years of supporting people affected by multiple sclerosis, and I have a fun, easy way for you to show your support and get involved!
Just add our Twibbon to your Facebook or Twitter profile picture and help us celebrate our 25th anniversary!
There are lots of other ways to support us as well, just visit our website to find out more.
Jill Purcell, Fundraising Manager
So the halls booked. That was free, one of the perks of working in a school.
Now what to do.
It seemed there have been lots of quizzes recently fundraising for various charities so I wanted to do something different. One of the suggestions was a virtual race evening.
Ok what’s that?
It’s an evening of horse racing, watched on TV, races are bet on and the the race footage is shown to reveal the race and winner.
I was given the number of a man who would run the event for a fee of £200. Is it worth the money?
Well he would come along with the technology, so we would be able to all see the races, there would be race cards on the tables and he had a app on the laptop that places your bet, prints you out a betting slip and then works out the winnings. For me this was worth every penny. So race-man booked!
Do we/don’t we need a bar?
I know my audience, they would want to be able to have a drink on a Friday night and for work colleagues it was the end of term, so we are on holiday!
OK so I would need a licence to sell alcohol, simple, just fill in a lengthy form and submit to the local council, along with the correct fee, for me this was £21.
Then Christmas happened…
Following Christmas my daughter and I set up a Facebook event page and sent out invites.
On this page we were able to do reminders and I also asked for any unwanted gifts that would be suitable as raffle prizes, they came flooding in….
People that couldn’t make it to the evening, pledged money onto my JustGiving account, which I had also put into the page.
The week leading up to our race night, I hired glasses from the local supermarket, for a deposit. There would only be a cost for any breakages.
They also agreed I could return any unsold items.
So the the day of the event I collected the glasses, bought snacks and soft drinks along with alcohol.
Tony the man running the race evening arrived in plenty of time to set up. Friends helped me to set up for the raffle and the bar, ahead of my husband and friend running the bar for the evening.
Tony asked for two or three helpers who would be willing to be the tote, my daughter, her boyfriend and a friend offered to do this, so Tony took them through what they needed to do, apparently it was really easy!
All was ready when the first of our guests walked through the door, the evening was a great success, the races got everyone involved, the raffle went really well and the bar pretty much sold out!
My friends and family had a great night, but most importantly they helped me to raise a whooping £850 profit for MS-UK! With match funding of £350 I raised £1,200 – amazing!
Just to let you that due to the bank holidays, we will be closed over Easter…
Friday 30 March
MS-UK and Josephs Court will be closed.
Saturday 31 March
Josephs Court, our wellness centre based in Essex, will be open 9am to 3pm.
Monday 02 April
MS-UK and Josephs Court will be closed.
We will reopen on Tuesday 03 April and the MS-UK Helpline will be available from 9am either via live web chat or via telephone on 0800 783 0518. If you would like information about multiple sclerosis (MS) please do visit the MS-UK website.
For those celebrating, Happy Easter!
The MS-UK team
A team in the Department of Psychology at the University of Sheffield are investigating the role of self-perceptions in adjustment to multiple sclerosis (MS).
They are inviting people to take part. Some of the topics discussed in the questionnaires include current experiences of stress, the impact of MS on various areas of life, your self-perceptions, and perceived ability to cope with the difficulties associated with MS.
The study consists of two parts; Each part should take no longer than 20 minutes to complete. After the second questionnaire, participants will be entered into a prize draw to win a £50 (or equivalent currency) Amazon voucher.
The results of the study will be written up and submitted as a doctoral thesis as part of the Clinical Psychology Doctorate (DClinPsy) at the University of Sheffield. Additionally, the study will be submitted for publication in a scientific journal. Information regarding individual participants will not be included and participants will not be identifiable from any reports or publications of the study.
The study was reviewed and approved by the University of Sheffield Research Ethics Committee. Some of the topics discussed in the questionnaire may be distressing as they ask about current and past experiences and feelings. Contact information for listening and support services will be provided at the end of the study.
The Beast from the East has arrived! I’m recovering from a relapse (MS for sh&t!) where my mobility has been challenged, I’ve fallen several times (last time at the cinema whilst moving to let someone pass, think I deserve an Oscar for my performance!) and experiencing tons of fatigue (if I got paid to sleep, I’d be rich) so my writing is on the back burner.
I was inspired to write about how the weather affects those like me. It’s been on my mind. I have thought how reduced energy levels and mobility doesn’t wash with this weather, how limited I am but more importantly how I have to think differently and be more prepared.
The weather presents many challenges. If you flick on the TV, there are shots of the level of snow, schools closed, difficulty travelling, travel disruption and forecasts for how long we are to expect this harsh winter weather. And it doesn’t help with a storm on the way. Many other countries experience snow. They are prepared. Ours grinds to a halt, although in its defence, this harsh weather is the worst I’ve seen for a while. Little man loves the white stuff. So here are my tips for handling bad weather for those in my boat, or anyone really.
You’ll probably stay in at home. For little man, I stock up on craft kits, board games, films for indoor fun ( I can recommend Peppa’s Cold Winter Day and Peanuts movie for little man and it doesn’t drive me nuts) and books. Reading to little man is a great time filler. Ask others to buy children’s magazines if you’ve not got any in. They usually have stories, colouring and sticker fun.
When travelling, I make sure I have food, drink, toilet stuff (she wee/incontinence pads, travel potty, toilet roll, baby wipes, carrier bag to put things in, gross but true!) things to entertain little man, warm clothes and a blanket. We’ve been putting a little man’s blanket on the radiator to place on him during car journeys.
My mobility is bad and I’ve fallen a few times. The safest option is staying at home but it isn’t always viable. Slippy snow and ice isn’t great for anyone but when you have fallen and use a walking stick (doesn’t work well in snow!) this weather is super scary. I wear shoes I know that can help and am buying shoe grips.
Don’t put pressure on yourself
It’s OK to feel like you can’t be bothered. But little man is so excited. He’s seen snow before but not on this scale. I close my eyes and little man wakes me by shouting “kick a ball” or “go outside Mummy”. My husband says he’ll stick me on a sledge! (I’m thinking about weight restrictions!) It’s heart breaking when you have little energy to lift your bum off the sofa, let alone play in the snow. Give yourself a break, if you can. I’m saving energy for the weekend as my husband says he’ll be my chaperone. I’ve realised that asking for help is not a sign of weakness – so family and friends have had fun in the snow with little man, giving me a chance to recharge. I think they like it!
Protect your mind
Asking for help helps you to rest but there is the realisation that you can’t play in the snow like yesteryear. Emotions come to a head. Grief. Anger. Frustration. Envy. Social media has a lot to answer for that. Don’t get me wrong it’s lovely to see what others are doing on their snowy days but it’s a reminder that you have limited mobility. I’ve cried a lot over the last few days because I want to be the one to play in the snow with little man. I will go out at the weekend with my husband around. In the interim, try not to be alone, hook up with others whether it’s friends who can come to you (I organised a play date today), speaking to social media contacts ( I asked my local MS Society group for best shoe grips recommendations) and plan for brighter days ( I’m thinking of summer holidays).
Be more hygge
In the interim, snuggle down, grab a blanket, hot chocolate and biscuits may not be great for the waist line but I’m still scoffing and watch films. Be like a Dane until the bad weather goes away.
Stay safe everyone! I’d love to know your tips?
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Well our first make a smile lottery draw has taken place, and here’s the results for Friday 02 March…
Jill Purcell, Fundraising Manager
March sees the first day of spring, but in the UK it can often still feel like winter! The dark, cold months at the beginning of the year can have an impact on our energy levels, immune system and cognitive function, so the start of spring is the perfect time to shake off the winter with a nutrient spring clean.
Dr Carrie Ruxton, from the Health and Food Supplements Information Service (HSIS), says: “We can’t magic up more sunlight in the UK but there are ways we can adapt our diets to get our health back on track for the spring and summer.
My five tips are;
HSIS (the Health and Food Supplements Information Service) is a communication service providing accurate and balanced information on vitamins, minerals and other food supplements to the media and to health professionals working in the field of diet and nutrition.
Multiple sclerosis and diet and nutrition
Find out more about diet and nutrition in our Choices leaflet on our website.