I’ve just joined the forum, but I don’t have MS.
I’m a semi-retired video journalist. I’ve made many half-hour programmes about camping and caravanning, mostly broadcast on Sky niche channels, and I’ve also made a good deal of local news content. One of my very best friends, who I met through camping and caravanning, already had MS, and is now bed-bound from it. She and her husband used to love their caravan, and it was very sad for them (and us) when they had to give up.
I’ve been wondering how I could help for years, but haven’t had a clue. But 2 or 3 weeks ago, when we were chatting on a visit (they live 100 miles away), she said how concerned she was about the lack of public knowledge and funding about MS, compared to cancer, etc. It’s true - there’s always someone talking about cancer, and the giving to cancer charities is massive. I’ve had it myself, and know about the kind of support people get from Macmillan Nurses, etc.
But MS doesn’t seem to get much coverage at all, as far as I can see. Everyone has heard the initials MS, sure, and recognises the words Multiple Scleriosis, but beyond that . . ?
So I had a bit of inspiration.
I presently make an online video series called Campervan Diary (see for yourself at http://www.campervandiary.co.uk) and wondered if I could combine this with making a series of online videos about MS. After some thought, I worked out a way of trying to tell people - the public at large, if you like, about MS - and thought that the best way to do it would be to have as many people as possible talking about the condition, explaining what it means to them, and how it impacts their lives.
What I plan to do is visit a succession of counties, for a week each, staying on campsites in my old campervan. In each county I’d like to film and interview around 6 or 7 individuals, with MS sufferers, family members, carers, and medics. Each day, I’ll upload an interview, under the working title “A mile in their shoes” - because what I’d like to do is take a stroll with them - pushing a wheelchair if I have to, stopping frequently, or just sitting. I want to be able to show people the wide range of problems that sufferers have, explain the condition to people who don’t know and understand, and generally raise awareness and understanding - and perhaps raise some money too, while also doing my own campervan thing.
I’d very much like to have the help and support of a group like yours - I’ve already been in touch with the MS Society, and now have a good working connection with Jemima Woolgar, Community and Events fundraising Administrator at the Society - she suggested I join and get involved here. She’ll also be my contact point with the Society.
To start the ball rolling, I’d like to hear from you if you have MS, in any form or to any degree, are a family member, carer, or are a medic with specialist knowledge of MS, and would be willing to appear in one of the video clips - that’s a must. In the first instance, I’d like to hear from you if you live in Norfolk, Suffolk, Essex, Kent or Sussex.
The simplest way to reach me would be through a PM or a reply on this forum. What we could then do is have a chat on the phone, partly so I can get to know you a little, and partly so that you are sure you understand what’s involved. We could then arrange to met for our chat when I’m in your area.
The whole interview structure I’d expect to take between one and two hours including all the preparation and actual filming, and the final outcome on screen would run for anything between 3 and 8 minutes, depending on your story and what you want to say - and how you respond to our conversation. I work alone, but you’ll be welcome to have a friend, carer or family member with you.
I’d rather have a conversation than what you might conventionally think of as an interview. I won’t let you say things that might embarrass you later.
Over time, I’d like to have 50 or 100 interviews online, which would provide the public and the world with an idea of what MS is like, from everyone involved’s viewpoint. it would be nice if, along the way, we could also help the MS community come together a bit, and get to know each other better; and even better if we could help one organisation or another with a bit more funding.
I’d love to hear from you - so please get in touch.
Here’s an introductory video, which I hope will help to explain what I plan to do: