New member with an MS publicity project

[ChrisG46]

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 last week, 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 interview around 6 or 7 individuals, with MS, 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 Trust and the MS Society, but would also like good input from more independent groups. I've been in touch with Marina, and she's happy for me to use this forum as a way of contacting people.

 

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 Suffolk, Essex, Kent or Sussex.

 

The simplest way to reach me would be through a PM 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 - either here on the forum, or send me a PM if you prefer, and I'll get back to you as soon as I can.

[Nick]

Sounds interesting Chris, want to come as far as Norfolk??

[Stumbler]

OK, I'll throw my hat in the ring too. I'm on the Sussex coast.

 

[ChrisG46]

Excellent - the more the better!

[sharron]

hi ya , sent you a pm, please please come to the isle of wight !!! i.o.w tends to be forgotten !!!.its a brill thing your doing.sent you a pm . tc x

[lala]

What a great idea! I'm out in Surrey, in between all your preferred areas. I Hope you get the help you need and thank you from an ms-er.

Laura

[Nick]

Looks like you are going to busy Chris!

[ChrisG46]

Yup, love it! I'm working at building up more and more contacts; I really need 7 or 8 potential interviewees in each county to start with, at least for the initial period, so I can film 2 or maybe even 3 chats over a day.

 

Among the people I talk to, I also want to find people who can give a really good, blunt explanation of MS and its effects in a kind of dispassionate way - maybe health professionals with strong links and good insights? Know someone who might?

[Nick]

Well you could try MS Nurses, A lot of these folk are exceptionally busy but are also very keen to get the message across. Another possible avenue are neurological research nurses working at University Hospitals. Like a lot of folk here we often have contact with MS Nurses and a few of us are involved in clinical studies into MS..........I'l put my hand up!! I am, so do get to have regular contact with a research team.

I've given a few descriptions on here about what it feels like to be diagnosed..........possible a bit odd but I write what I feel.

 

http://ms-people.com/forum/topic/13476-the-roller-coaster-ride/page__hl__%2Broller+%2Bcoaster

 

http://ms-people.com/forum/topic/13770-the-requested-gumption/page__hl__%2Bgumption+%2Btraps

 

 

http://ms-people.com/forum/topic/13484-another-way-of-looking-at-it/page__hl__%2Bold+%2Bshuck

[Mal]

Very interesting Chris Newcastle here !

[ChrisG46]

Love Newcastle . . . may be a while before I get there, Mal, but you'll be on the list when I do!

[jayjill]

What a good idea! The whole scenario of MS is so complicated with so many vested interests. It will be interesting to hear directly from the horse's mouth (as it were). I would like to take part, Chris; I'm in the Norfolk area, like Nick, but near King's Lynn.

[ChrisG46]

Only need a couple more people in the county, and I'll be filming in Norfolk! Excellent!

[lisa]

Hi Chris

 

Great idea I'm in Lincoln

 

Lisa

[ChrisG46]

Thanks, Lisa! I think you might have to wait a while - at present, I'm looking for participants in Norfolk, Suffolk, Kent, Sussex and Hampshire , , the northern parts of Greater London would good, too.

[David]

hi chris,

 

I in norfolk and would be interested I have rrms and my wife cares for me plus we have a large family to manage as well.

[ChrisG46]

Thanks, David - I'll PM you tomorrow!

[Nindancer]

If the Basingstoke side of Reading counts for Hants, then count me in too

Sonia x

[ChrisG46]

Thanks, Sonia!

 

Just got an interesting and nice bit of support, which I'll bring you up to date on soon - when I've done a little more research!

[ChrisG46]

Here's a 1st draft of an introductory video - please do be aware that it may have some errors, and I welcome your comments. It is essentially for members here, so please don't spread it about at this stage.

 

http://youtu.be/S6CYd_AOAUI

[Nick]

Nice idea and your first draft looks good to me!

 

Nick

[Nindancer]

Looks good Chris, I'll look up your facebook page

Sonia x

[Great Dane]

Hi Chris

 

I really think your video is a brilliant idea, and I wish I could offer to 'help out'. The thing is I have not yet come out of the closet so to speak. Despite having been diagnosed over 2 years ago only my husband, 2 children and about 5 people know.

 

I have not told my siblings, mother, employer, colleagues or the majority of friends. I am worried about the impact of letting them know as I have been told a fair few negatives encountered by other MSers who have been upfront about it. I suppose it gives me some kind of control - I am lucky enough to be fairly well and either explain symptoms displayed either by my age or arthritis!

 

Good luck with your project!

 

Great Dane

[ChrisG46]

There's nothing much on the FB page yet, Sonia . . I'll be doing some work on it next week.

 

Dane, that sounds pretty sensible to me - as long as it works for you is what counts, as far as I can see!

[sharron]

first draft,looks good !!!,please please come to the Iow ,you could always push me along ryde sea front !!! there is not enough awareness ,especially on the island,