MS Trust Blog Home

Guest blog by Liz Blake

My name is Liz Blake and I work for the MS Trust. Part of my role here is doing the admin for our parachuting fundraising events. I was seriously thinking of doing a parachute jump myself to help raise funds for the MS Trust, so when a company booking of ten people from Active-PCB Solutions came in, I thought it would be a good idea to join this team and make a day of it.

We jumped at the Chiltern Park Aerodrome on Sunday 9 June and it was fantastic, exhilarating and scary at the same time. But what a start to the day, we thought we weren’t going to jump at all due to the low heavy cloud. I nearly went home. And then suddenly the first lot were in the air, at 2.20 in the afternoon!

We had some really useful instruction in the morning on how to skydive and were told all about the safety aspect of it. On with the jumpsuits and harnesses. There was time to eat a burger and watch the first people jump and land safely. And then it was my turn, walking to the plane and nearly getting blown off the steps up to the aircraft due to the draft from the propeller!

The small aircraft was off climbing to a height of 10,000ft and getting colder all the time. My instructor Deano who was a lovely chap, really friendly and reassuring, gave me a reminder of what we were going to do as we approached the point where we would exit the plane. Then the first guy jumped out almost as if he was getting out of bed, so relaxed. We shuffled to the edge of the plane, me in front. I had to dangle my legs outside the opening and flip them under, next thing a slight rock forward and we were out!

It was absolutely terrifying at that moment. I screamed and now looking at the photo I know why – I’d forgotten my instruction to keep my head back and we were diving down toward the earth! The cameraman appeared in front of me smiling and waving and put me at ease and we continued to freefall for about 30 seconds. Falling at a rate of around 120 mph, wind rushing past your face is not the most attractive look in the world but its over so quickly.

Next thing I got a tap on the arm to warn me that the main canopy was going to be deployed. It felt like we shot up in the air really fast, absolutely brilliant, and then we were floating. We could see all over the countryside and it was an absolutely fabulous feeling, just hanging there seems a bit surreal. We could see the River Thames, Didcot Power Station and as we approached the airfield I could see my son waving madly. We came in really gently and had a lovely soft landing. Phew!! What a relief.

I’ve raised a total of £1,480 for the MS Trust, but I didn’t do this through sponsorship alone. I’m a modern jive dancer and go to various dance venues in Hertfordshire, so I thought I would hold my own charity dance to raise funds. It was quite well attended, everyone said there was a great atmosphere and that they had a wonderful evening. As well as the money from ticket sales, we did a raffle on the night and raised £170. I also put my sponsor form out at work and was absolutely amazed at how much everyone donated and how many did. I’ve raised a lot more than I thought I could.

I’m still buzzing from it.

Find out how you can take part in a sponsored skydive for the MS Trust

Guest blog by Liz Blake My name is Liz Blake and I work for the MS Trust. Part of my role here is doing the admin for our parachuting fundraising...

The MS Trust is developing a new way to provide information about MS to people who have just been diagnosed.

The background goes like this. In 2012 we commissioned some research into the sort of information that people prefer at, or soon after, diagnosis. It turned out that some people want very little information and some people would like loads and most people are somewhere in between. Many people have phases when they want information and then phases when they don’t.

Our challenge now is to develop new publications and areas of our web site which allow people to get as much info as they want, when they want. Some info is important for everyone to know straight away but the rest can be a pick and mix kind of approach.

We are preparing a small introductory resource which will help answer the most common questions that people have after diagnosis. It is quite small and those who want more information will be able to follow the signposts to get more info on the topics that are important to them.

So the question is “What to call the resource”?

At the moment, many newly diagnosed people look at our bigger booklet called “MS what does it mean for me?” The new booklet will replace this one so perhaps it could be called the same thing.

We’ve had a few other suggestions already:

- What now I have been diagnosed with MS?

- What’s next?

- Going forward

- What would help me?

Tell us your ideas.

Do you have any inspiration? Do you like one of the suggestions above?

Should it have MS in the title? What would be positive and helpful and not worrying to someone who has just been diagnosed?

Please tell us using the form below or email infoteam@mstrust.org.uk

Thank you. We appreciate your help.

Jane, Information Officer

The MS Trust is developing a new way to provide information about MS to people who have just been diagnosed. The background goes like this. In 2012 we commissioned some...

Diane Evans on why it’s best to stop, look and listen before holding forth on MS

Most people with MS will come across this situation at least once in their life after diagnosis. You meet a work colleague of your partner’s and have to make small talk and you end up talking about MS. The work colleague turns out to have a fabulous friend who also has MS, but it went away for a long time but recently it’s come back and has targeted their eyesight, and they are now registered as blind. But they are still working with their husband in their own business and being a productive part of society. They then go on to tell you how there’s a job out there for everyone and since you can’t get a job that requires going out to work, maybe you should try working from home, filling envelopes or making badges?

At the time I was so astounded at the ignorance, arrogance and rudeness I was at a loss for words. But mulling it over later at home these things came to mind.

So you know a person with MS?

That’s not too surprising. There are over 2.1 million people across the world with MS, it’s really not that uncommon.

You know a little bit about her condition and at least one of her symptoms?

The symptom you are aware of is probably just the tip of the iceberg. For every bit you see above the surface there’s another 90 percent going on under it.  Unless your friend is a gobby mare like me she’ll probably not tell you about it even if you ask!

Don’t think you know enough to offer someone who lives with MS career advice

Think about the person sat across the table from you.  Before holding a friend up as a paragon of good living with MS, have the decency to ask the person across the table from you how their MS affects them.

If you know one person with MS that’s all you know. If your friend is vocal about their condition you may know about a few of their symptoms but you still only know one person with MS and a tiny portion of what they experience of life with their MS. I have MS. I live with the iceberg of symptoms in all its glory every single day of my life and I know exactly how my MS effects me. But I don’t have a clue of my friend Meg’s experience with her MS or of how anyone else with it experiences it as it is individual to each person with MS. If I have it and I don’t know how it affects others then you aren’t in the best position to be offering advice.

If you have a friend who’s got MS, but isn’t that vocal about it, educate yourself

Ask people like me who are quite happy to tell you in clear terms what it means to live with a progressive, degenerate and mostly invisible disorder. Most of all, listen and learn because your friend with MS deserves that from you. Your friend might struggle to put their experiences into words or they might find it difficult to talk about. One person’s experience MS is very different from another’s. Everyone is wired differently. How I experience pain is not relative to how you do.

I’ve spoken a lot about the ‘do nots’ here, but there’s only really a couple of‘do’s’ you need to remember. Do ask questions and do educate yourself so you understand better what people with MS have to live with.

Diane Evans on why it’s best to stop, look and listen before holding forth on MS Most people with MS will come across this situation at least once in their...

As you may have noticed, for this year’s MS Awareness Week we have been focusing on the work of MS specialist nurses. Yesterday we announced the winners of our ‘My Super Nurse’ campaign and all week we’ve been highlighting the impact MS nurses can have on everyone affected by MS.

At the MS Trust we believe that one of the best ways to help people with MS is to support their specialist nurses. Since 1996 we’ve been leading the way in campaigning for and supporting their work. We funded the only research project which shows that, as well as being vital to people with MS, MS specialist nurses also save money for the NHS by keeping people out of hospital. We estimate that a single MS specialist nurse, with an average caseload of around 250 patients, can save the NHS around £65,000 a year.

However, in recent years we’ve had to step up our work. As health budgets grow tighter, specialist MS nurses are under increasing pressure to demonstrate the impact of their work or risk having their funding removed. Some nurses have been asked to return to ward work, while some positions have become vacant (due to leave or retirement) and not been filled.

This is why we’ve been working to help MS nurses demonstrate the impact of their work, so they can make the strongest case possible to managers and commissioners about the importance of their role.

Over the past year we’ve been piloting a project called GEMSS: Generating Evidence in Multiple Sclerosis Services. We recruited MS teams from Northumbria, Dorset, Dudley and Sheffield and worked with them to develop tools to enable them to collect and analyse data on their service.

The pilot was a huge success, and has already been instrumental in keeping at least one nurse in post. Last month we spoke to Michelle Strode and Caroline Chandler from Dorset about their experience of the GEMSS project and the difference it’s made to them. You can watch the interview below.

We’d like to roll out this project so that all MS nurses have access to the tools we’ve helped to develop. But we need your help. That’s why all funds raised from this year’s MS Awareness Week Be Bold in Blue events will go towards our nurse support programme, helping us to safeguard MS nurses now and for the future, to make life better for everyone affected by MS.

As you may have noticed, for this year’s MS Awareness Week we have been focusing on the work of MS specialist nurses. Yesterday we announced the winners of our ‘My...