A client who regularly contacts the MS-UK Helpline has recently completed the process for registering with the MS Society Tissue Bank to donate her brain and spinal cord for research purposes after her death. The Tissue Bank is based at Imperial College London and is a collection of brain tissue donated by people with (and without) MS and other neurological conditions. The Brain Bank stores tissue left by donors and makes samples available to scientists carrying out research on MS. The Tissue Bank is funded by the MS Society and Parkinson’s UK.
Whilst lending an understanding listening ear over the Helpline the client made it clear that she really wanted to share her experiences and let other people affected by MS know about her massive personal achievement…
My name is Dinah and I have primary progressive multiple sclerosis, I wanted to share my experiences and thoughts about the MS Society Tissue Bank.
I understand that donating brain tissue is not what some people with MS may want to do, however if somebody does want to do this, my own experience has shown me that it is not as hard to do as you might imagine. There is a lot of help out there along the way for you to be able to do it.
When I attempted to first register with the Tissue Bank a few years ago, I gave up on it due to my personal circumstances at the time, it is a big decision after all. It has been on my mind to come back to it and get this done. I have been trying to find the time and energy needed for quite some time.
This year I got help from the team at the Tissue Bank at Imperial College London with the paperwork. They were very supportive through the whole process. It was not easy for me but it was simpler than I thought it was going to be.
I honestly feel that the day I heard I was registered to be a donor for research purposes and would be helping others with MS after my death was one of the happiest days of my life.
I feel less scared of dying now that I know that I will be helping people through research when I am dead. I am chuffed to bits.
Wishing you all happiness.
To find out more about the Tissue Bank at Imperial College London you can visit their webpages where you will find all the information you need including a ‘frequently asked questions’ section at www.imperial.ac.uk/brain-bank. Or you can call +44 (0) 20 7594 9734 or email firstname.lastname@example.org and the staff will be happy to help.
Last week we got the exciting news that MS-UK had been awarded the Charity Commission endorsed PQASSO Quality Mark Award Level 1. This is a fantastic for us. In 2014 we set ourselves a set of ambitious goals that formed our strategic plan. The team here have been working hard not only on providing the services we know people affected by MS need from us, but have also been working on a programme of continuous improvement in every area of the charity.
When developing our strategy we decided it was important that we could demonstrate to the public, potential funders and most importantly, people affected by MS, that we are a credible charity that carries out its work to a very high standard.
PQASSO is the leading quality standard developed for the voluntary sector, by the sector. The PQASSO Quality Mark is the externally assessed award for PQASSO users which demonstrates achievement of the PQASSO standards. It covers all aspects of an organisation, from governance to service delivery and monitoring outcomes.
Our commitment to continuous improvement and providing high quality services will not stop simply because we have now been awarded the Quality Mark. If you ever have any feedback about what we do or how we do it, please do not hesitate to get in touch.
Also, I’d like to take this opportunity to share our 2015 Impact Report. Here you will find information about what we achieved last year, how we achieved it and what we’ve set out to achieve by the end of this year.
Finally, a big thank you to my team – staff, volunteers, and supporters – who have made this a reality!
Do you have questions going round in your head and no answers?
Are you worried about voicing these to others? Maybe because they don’t know about your multiple sclerosis, or you think they will think you are either stupid or silly for asking?
Do you get frustrated that you just want someone to tell you what you need to know, no strings?
We can do that!
We won’t tell you that you are silly or stupid for asking any question, because if it’s bothering you, then it can’t be anything but a stressful situation that you need resolving. Stress is bad for MS, right?
So where can you go? Do you have a computer, laptop, phone or ipad? Then visit our website and look for our live web chat symbol on the Helpline page.
Live web chat is great, it’s so immediate, just like messaging your friend. We can read your questions and reply back instantly. Sometimes, we might need to do a bit of research but we can get back to you. You can also give us your e-mail address and we can carry on the contact after the webchat has finished.
If it bothers you, then it bother us – we can help and we’re always here for you.
Chat with us – the only thing we can’t provide is the cup of tea!
We have an amazing range of challenge events that you can get involved with, from the Virgin Money London Marathon to Prudential RideLondon-Surrey 100 but we want to add even more to the list but need your help.
Are there any challenge events out there that you think MS-UK should have places at?
Personally I think we should have a few places at events like Tough Mudder and Spartan races, as they seem to be all the craze at the moment. Having done a couple myself I know how much of a challenge they are and how much fun you would have taking part, but I would like to hear from you first hand whether or not you think this is a good idea.
There are also many other events I am looking into and these range from the Royal Parks Half marathon to the Great Run Series. I would love to hear from anyone with any suggestions to what events you would like to see MS-UK attend in 2017!
Please do contact me with your suggestions as I am always open to ideas
Community and Events Fundraiser
In this guest blog, Daisy Chapman writes about witnessing her mother’s experiences of living with multiple sclerosis. Now Daisy is turning her talents to a new documentary…
When I was 12 my mother was diagnosed with relapsing remitting MS, I witness day to day the challenges my mother has to overcome, even in such simple tasks like opening a tin. In the past she has struggled with depression due to MS, she has found it hard to pick herself up but the power of positive thinking has helped her greatly, and she believes in keeping herself busy. She tells me that she ‘refuses to let her illness define her or have it be a constant black cloud looming over her’.
Mum makes sure she gets her daily exercise fix, she attends aqua classes as she finds it’s easier and feels safer to exercise in the water without the fear of falling over. She really values structure in her day whether it be doing a bit of housework or visiting some family relatives.
My mother who is dependent on a walking aid is often embarrassed when people ask her “What exactly is wrong with your legs?” or “What is MS?” Not shocked really by the sheer ignorance of some people – I ask myself, How do you simply describe an illness that is so complex? I think it would confuse most people if she were to list all her symptoms on the spot which vary incredibly, and tend to change like the weather. Mum has even been but in positions where people question the legitimacy of her condition. Multiple sclerosis, like many other neurological disorders have many symptoms that aren’t physically visible.
As a teenager I fondly remember accompanying mum when she occasionally visited the Charing Cross MS clinic for steroid infusion treatment. We were always welcomed by a room full of people from all walks of life and ages brought together because of one common factor: multiple sclerosis. I found it to be such a warm atmosphere for a hospital, there was a real community feel to that room and everybody went out of their way to help each other. Whether it be spreading news of upcoming charity events or swapping tips about what has helped soothe some of their MS pains. What I took away from those days was, information is key and knowledge is power – and I have found there’s not enough information out there or awareness about MS. I wholeheartedly feel that it is an illness that is overlooked and understudied. That’s why I personally have felt the need to take an active approach to investigating how people in the UK are effected by MS, how it is treated and what resources are out there for people with multiple sclerosis.
Whilst studying media production at college, I discovered my passion for storytelling and film making. So, now I am setting out to film a project about MS, which was always on the cards for me as it is so close to home. My primary goal is to raise awareness of the illness by representing the varied symptoms people experience. I am currently on the look out for participants who would want to get involved by sharing their personal stories or helping with charity events that will be filmed for the documentary.
Below are my contact details,
I look forward to hearing from you
Based in London
Sometimes picking up the phone to talk about MS can be difficult and sometimes you may need an instant response to a query, so emailing may not feel quite right either. Our web chat may well be the answer.
Our live web chat service is here for the whole MS community, our MS Advisors are available at the click of a button to chat you instantly. You can use your smart phone, tablet, laptop or PC and connect straight away with MS-UK.
Connecting with the Helpline could not be easier. Simply click on the ‘chat live now’ button between the hours of 9am and 5pm UK time and you will be linked direct to an MS Advisor. Our Advisors will be able to begin supporting you in whatever way is best for you, whether that is listening and giving emotional support, or providing you with up-to-date and trusted information about multiple sclerosis or other disability related issues.
There is even a function where you can click on the ‘email’ icon and you will be sent a copy of the chat the moment the call finishes. This means you get to keep a record of anything that you discussed. This is particularly handy if you have been sent links to web based information that you may want to review at a later date.
If for any reason our MS Advisors are busy or unavailable you will still be able to leave a message and someone will get back to you as soon as they are able.
Support is just a click away… we are here if you need us.
My name is Jan Samson and on 06 August 2016 my husband and I celebrated our 50th wedding anniversary. To celebrate this occasion and my Granddaughter Robyn’s wedding we held a party at our local social club in Ashford, Kent which was attended by our family and friends. We did not want any gifts from our guests as it was just important for us to have all of our loved ones together so we instead gave our guests the option to make a donation for MS-UK.
MS-UK is a charity close to our heart after Robyn was diagnosed with relapsing remitting MS in January 2014.
In May 2013 Robyn started to get pins and needles in her legs which lasted for nearly a month but the doctors could not find anything wrong with her. After 3 more attacks of pins and needles and the loss of the sight in her left eye she was eventually diagnosed with MS at the age of 20.
This news was devastating for all of the family and in particular for her husband Tom but Robyn and Tom have both remained extremely positive ever since the diagnosis. After spending over a year on interferon injections to help with the symptoms Robyn decided to come off of the treatment due to the side effects and she is now the best she has been since her first attack and has now been relapse free since November 2014.
It is important for our family to raise money to give back for all the support Robyn and our family have received over the past 3 years. My Daughter, Son-in-law, Granddaughter, Robyn and Tom have all taken part in the Great North 5K and the Yorkshire 10 Mile to raise money over the past few years and we will all continue to fundraise for this fantastic cause. We are over the moon the be able to donate £630 to MS-UK thanks to everyone’s generosity who attended our party which exceeded all of our expectations.
This Saturday the MS-UK team will be packing up our purple accessories and heading off to MS Life! Running from 12pm – 7pm on Saturday 17 September to 11am – 4pm on Sunday 18 September, this bi-annual event is hosted by the MS Society and is the biggest MS lifestyle event in Europe.
Our Helpline team will be on hand to answer any questions about MS, and Kahn, our Editor, will be checking out all the latest gadgets, news and research so he can bring you a full report in the next issue of New Pathways.
For me, though, MS Life is all about meeting you – real people affected by multiple sclerosis. I am really looking forward to speaking with lots of different people about lots of different things, and I invite you all to visit us on stand 246 and let us know what makes you ‘appy.
As you may know, we recently launched the My MS-UK app – bringing New Pathways magazine into the digital age – and we’ll be celebrating the app all weekend by focusing on the positive.
Happiness (or ‘appiness, in our words) is completely unique to every individual. You may find it from your friends, from family, from your work, in the amazing wonders of the world or from something as simple as having a cuppa.
So, whatever makes you ‘appy, please do come and share it with us. We will be adding messages of ‘appiness to our stand throughout MS Life, and I for one cannot wait to discover all the things that make people ‘appy…
See you at the weekend!
A while ago, I had a bright idea. Granted this doesn’t happen often, so once I got over the shock I thought about it some more.
And the more I thought about it, the more I thought it might just work. Of course, I couldn’t really develop the idea without the support of those affected by multiple sclerosis, so I asked people what they thought of my idea. To my surprise, they liked it too! So, we decided to do it…
You see, what I wanted to do was take New Pathways to a new audience.
MS is increasingly becoming a ‘young person’s’ condition – and by that I mean diagnosis tends to occur between the ages of 20 and 40 (according to the latest figures).
However, the young folk today don’t tend to read magazines. At least not in the traditional way us old folk do.
And what if they’ve just been diagnosed? This can be a difficult time, with lots of questions, worries and concerns. Would you want to be reading a magazine about MS on a bus or train? Especially if you were still coming to terms with the news?
But what if you could access hints and tips, and positive stories about people living life to the full despite being diagnosed with MS, quietly and privately on your smartphone or tablet?
What if there was a digital version of New Pathways?
How many more people could we reach out to and help?
Which is where the hard work began.
And yes, it took longer than I had hoped – but hey, I expect to do things in a morning and then take the rest of the day off with a cup of tea, so this didn’t come as a surprise to anyone but me.
But the hard work and effort has paid off.
Everyone at MS-UK has been involved, and now we are able to shout proudly about My MS-UK.
As well as the latest issue of New Pathways, there are back issues available to buy as well, and you can also subscribe through the app so the latest issue just drops in on release. No waiting for Mr Postman here, no siree Bob.
(Who the hell is Bob? It’s always bothered me. Anyway, I digress…)
And that’s not all.
It being a digital magazine, there are also interactive elements – meaning you can watch videos on the article you’ve just enjoyed reading.
Plus, because we’re all so happy with My MS-UK, we’ve made the latest issue – New Pathways 98 – available for free, so if you have never read the magazine, or haven’t dabbled with digital, now is the perfect time.
For now, My MS-UK is just offering New Pathways, but here at MS-UK we’re not ones for sitting back and putting our feet up. Someone’s always having a think and a thought.
So you can expect My MS-UK to develop and grow in the future, with new content being added in the months and years to come.
In the meantime, put the kettle on, download the current issue, put your feet up (having made the tea and poured it, obviously, otherwise you’ve just boiled water for nothing) and enjoy New Pathways in all its digital glory.
You do that, I’ll crack on with the next issue. Just as soon as I’ve stopped my cat playing with a wasp…
Editor, New Pathways
In this guest blog, MS-UK marketing volunteer Catherine Thompson looks at the inspiring athletes facing MS at the Rio 2016 Paralympics and why MS-UK is so proud of everyone taking part…
In the land of Bossa Nova where Samba beats pulse through the air comes a group of exceptional souls, who have overcome adversity to triumph on the World stage. The Paralympics 2016 is upon us and at MS-UK we are championing a group of remarkable athletes who proudly own their own diagnosis of multiple sclerosis.
Stephanie Millward is a Paralympic swimmer and an amazing supporter of MS-UK. Stephanie has written an incredible article in the latest issue of our New Pathwaysmagazine. She was diagnosed with MS at the age of 17. The article is both inspiring and insightful. Having gone black blind three times as a result of her MS, she vividly conjures the heightened sensory experience of a shining sun in a piercing blue sky. Stephanie writes about the power of mind over matter. If she thinks positive she can stay on top of her MS.
Australian cyclist Carole Cooke is proud to be competing in her second Paralympic Games. She is also proud to have MS. Cooke has lived with the diagnosis since 1998 and is philosophical about the condition. She believes that if you dare to face your fears, you can achieve anything. Cooke was told by her doctor that her life as she knew it was over. Instead it was the beginning of an extraordinary new chapter, a journey that has led to her winning an Olympic Gold medal at the 2012 London Paralympics. British sprinter and cyclist Kadeena Cox transitioned from an able-bodied to a disabled athlete after a stroke led to MS. Cox did not want this set back to define her, so she has put all her energy into para-sport.
To overcome the internal battle with your prognosis takes immense courage. To overcome society’s prejudices and limitations takes greater qualities, those of perseverance, foresight and spirit. Every one of us who lives with a chronic condition knows the struggle to overcome, but we also understand the power held in doing so. Taking up the mantle is hard. Our instincts can be to shy away, to shrink ourselves, to give in and deny our truth. Then our greatness would go unacknowledged, unseen and our lessons untaught.
The Paralympics demonstrates the ultimate expression of conquering our fears. Whatever your goals are, however you overcome adversity is heroic and with this heroism comes a kind of peace, a peace with society, with your relationships and mostly with yourself. So be inspired to action; run for us, skydive or simply follow our work. As Stephanie said in her article, take a step today to move forward and change your life for the better. We at MS-UK are in your corner and behind you all the way.
My name is Catherine Thompson. I was born in Bury St Edmunds, Suffolk, on 05 September 1983. I have a degree in Modern History from the University of Essex. I have worked for charities for over six years. I recently created a special project for MS-UK, which I greatly enjoyed. I was greatly inspired to write this blog about the Paralympic swimmer, Stephanie Millward. Stephanie is a wonderful supporter of MS-UK and we will be cheering her along in the Rio 2016 Paralympics. I wrote from the heart and I hope it goes straight to yours.