The urgent search for hope by Patrick Burke
Looking for a cure for Multiple Sclerosis
I always enjoy unexpected surprises. One started in early November. I was having my 18-month check-up for the MS-Stat2 drug trial with simvastatin. It’s always a pleasure going down to the MS centre at Queens Square, the staff are really friendly. Also there is an urgent search for hope for people with MS.
The end of my visit
Just as I was leaving to come home the consultant said to me, “Would I like to do an interview with the BBC?”.
“Oooh yes, that sounds interesting”.
“I’m afraid I can’t tell you much more than that” he admitted.
A few weeks went by and I did not hear anything. To be perfectly honest I thought it was all going to be a bit of a red herring and it was going to fizzle out.
Urgent search for hope
One day in early December I was checking my emails, usually a matter of deleting the rubbish. In the middle of all the crud there was something from the BBC and UCLH who wanted me to sign a consent form for photographs.
I thought to myself “Hey maybe this interview is going to happen”.
On my birthday I receive an email
Click picture to read her MS-Stat2 story on BBC
The opening sentence is “I’m a producer on BBC TV’s News at 6 and 10” and she wants to speak to me on the phone.
How often do you get a birthday present like that? It continues ”I’m currently working with Caroline Wyatt on a piece about the progress and trials underway regarding MS treatments …”. I phone up and we have a chat.
I’ve got to shoot the film myself but I know this will not be The Wife’s cup of tea. Luckily my next-door neighbour used to be in advertising, and is good with the camera. I’ll call him The Apple (clue, he’s got an Iphone 11).
I text The Apple
“More than happy to come round” says The Apple but first of all he has to have a chat with a BBC cameraman to discuss the filming. Must wait for a couple of days before he can shoot some film with his Apple phone because he’s busy. The cameraman wants footage of me making a cup of tea. The Apple does this and it really is a bit boring to look at.
Inspired thinking
The Apple and I then have a chat. I get up from my chair which isn’t easy, grab my Rollator, turn my FES on and walk to the end of the kitchen. “That’s what we’ve got to shoot “, The Apple says, “now people can see how MS really affects you”.
We do it in one take. Happy, he goes off and sends all the film to the BBC.
Zoom
A Zoom conversation with Caroline Wyatt happens. The only thing I can really remember is her asking me, “How much does MS affect you”? I pause from a moment. My reply is short and succinct “It affects everything I do”.
Friday Dec 19th
Caroline Wyatt’s program is broadcast on BBC 6 pm news. The shot taken by The Apple is there and people can see how bad my MS really is. I also need an urgent search for hope and help. The Wife in now convinced she is married to a media tart.
Associated articles
Inactivity kills more than obesity
December 2020
I stumbled on the BBC article by chance yesterday. Good to know there is a trial going on,gives us something to be hopeful for.I have your blog on my bookmarks and recognised you right away in the article.
Hello,
Hope you enjoyed my post, I never take myself too seriously.
The world of SPMS is looking more positive but its taking a long time to get there.
Great for you to do this and for others to see. Some will relate to you all too well but others may finally open their eyes to what a disability like MS really is. Thank you!
Hi Allison,
I think ‘Opening of eyes’ was the idea behind Caroline’s article. I thought shooting of the film quite amusing. Good example of thinking outside the box. I enjoyed the whole process
That is news most cheering. Best of luck with your new career. Happy Christmas and forward go.
Hello Francesca,
I will issue a progress report next year.