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 2016, we have had some very talented volunteers at MS-UK supporting the work of the marketing team. One of them has been Daniel Joplin.
Dan is a keen photographer and loves to make his own films, so what better way to support MS-UK than by editing some of our video footage?
Here is the film by Daniel – a chance to see why our clients in Essex come along to our centre, Josephs Court. Thank you to Daniel for making this film!
The people in this video were filmed as part of our open day earlier in the year, when the Healthwatch Essex team came along with their Chatterbox Cab.
Thank you to everyone who took part in the day and made this film possible.
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
In this Guest Blog, Keith describes his wife Yvonne, who lives with multiple sclerosis. Yvonne attends the MS-UK Wellness Centre, Josephs Court, and has found it really beneficial for her personally over the past few months.
Pride and Gratitude
Mrs Yvonne Harris was born 23rd October 1963 in Burnley, Lancashire and relocated to Ipswich, Suffolk in 1989. Yvonne and I have been together for almost 30 years and this is a brief summary of some of what my lady has had to experience.
Yvonne was first diagnosed with multiple sclerosis in November 2002 and was advised that she may have unknowingly been living with the condition for up to 12 years prior. From here on she endured relapses on average of once or twice a year which resulted in a gradual deterioration of her condition and general health. She suffered with constant chronic fatigue and lack of energy. Weakness, spasms and numbness in her legs and ankles at this time, restricted her ability to walk very short distances only and then only with the aid of sticks. Due to her lack of balance she was liable to stumble and fall at any time, anywhere and when she falls she requires assistance to get up again. Within our home furniture is strategically positioned to enable her to have many things to hold on to, to help her get about.
Throughout Yvonne’s illness she has had to cope with diminishing eyesight, optic neuritis, migraines, vertigo, double vision and partial colour blindness. She has difficulty holding onto cups, plates, saucepans and cooking utensils as she is unable to grip or carry things.
In October 2011 she was admitted as an emergency into Ipswich Hospital NHS Trust intensive care unit after suddenly suffering five epileptic seizures (brought on by the MS) each lasting 5-10 minutes within one hour. For the first two days she was kept under sedation and to this day cannot remember any of the events that took place during that period of time. Upon returning home it was noticeable that there was a further significant deterioration in her overall ability.
Upon her return to work at a large company it was obvious that she was no longer able to offer her services to the high standard that she wished to maintain and Yvonne reluctantly retired through ill health in May 2013. Since taking retirement her condition continued to slowly deteriorate and she became almost constantly reliant upon a wheelchair. The secondary progressive stage of multiple sclerosis was also confirmed.
Her diplopia (double vision) is now almost a permanent problem and it seems that there is very little else that can be done to help her. She constantly struggles with cognitive issues, dysphasia, dysarthria (disorders of speech and language), concentration and short term memory loss. I have to remind her daily to take her medication at the correct times throughout the day and I assist her at all times with whatever is needed. I also cater for all the daily chores of running the household.
In February this year a friend of ours passed us details of Josephs Court and said it might be worthwhile taking a look. We did and we have been attending sessions twice a week ever since and the progress has been amazing.
Sessions of cycling backwards and forwards, arm strengthening routines along with exercises within the parallel bars have obviously done the trick. Because of the teams’ encouragement, support, knowledge, passion and endeavour, Yvonne is now able to stand and sit on her own unaided and is even able to walk a few paces on her own – something we thought was not likely to happen again.
We can only pass on our grateful thanks to Brendan, Allan, Mike, Vicky and the rest of the MS-UK team for all they have done to make our lives that much better.
I am also very proud of my wife for her positive fun attitude and tremendous physical effort given throughout. I know it’s not been easy and there’s still quite a way to go but what a great start!!!
Multiple sclerosis affects everyone differently, and it’s important to remember that Yvonne’s progress is unique to her. You can find out more about the general benefits of exercise by visiting the MS-UK website and reading our Choices leaflet.
If you would like to discuss anything relating to MS, you can speak with our trained advisors on the MS-UK Helpline by calling 0800 783 0518 or by chatting with us on our live web chat.
I am really pleased to say we have a new film on our You Tube channel!
The film, called ‘Taking control of MS’ was filmed at an event we held last year. Our clients took part in a Ride 250 fundraising challenge at our Wellness Centre, Josephs Court, back in October, and the lovely film crew from Big Picture Charity Films came along for the day and filmed it all!
MS-UK is here to support anyone affected by multiple sclerosis (MS) to have choice, control and independence, and it was great to hear how our clients are taking control of their own MS journeys in their own ways…it makes me proud to be part of the team here!
I hope you enjoy the film, and a massive thank you to everyone who took part!
Centre Manager, Josephs Court