So I'm Simon. I am new to this forum, but unfortunately I am far from new to WED/RLS.
For as long as I can remember, I was a fidgeter. It’s how my mother always described me - and quite accurately too. Long journeys in packed cars, sitting in tiny seats surrounded by others at the cinema, sitting on the sofa, and going to bed. It was always... uncomfortable, painful. For 30 years I endured countless visits to GPs and various specialists and their insistence that I had growing pains, depression, an iron deficiency, sleep deprivation, a central nervous tick, sent for MRI’s, told I had an abnormal fundus… I still don’t know what that one is… and then back to depression again.
I don't blame them. Apart from the fact that I no doubt look pretty depressed, the majority of the medical professionals I encountered knew woefully little about WED/RLS.
It took moving a hundred miles away to the South West and a brand new doctor to finally be diagnosed. I've been taking a steadily increasing dose of Pramipexole for the last 5 years or so, and along with some lifestyle changes I am able to mostly manage my disease. Of course, it is far from a cure. I have good days, and have some not so good days.
But during my 30 year journey I read about other sufferers - all with their own story, shaped by their individual experiences. The severity of their condition, pain relief, support and diagnosis.
Around 5 years ago I founded Red Dog Productions, a local video production company working with bands, businesses and communities throughout Bristol and South West UK. In this time I have been lucky enough to interview so many incredible people, working on amazing initiatives - such as The Bristol Energy Cooperative, Bristol Women In Music, Musicians Against Borders.
Now I am putting together a series of videos on sufferers of WED/RLS, and am inviting any of you to be interviewed and talk about your experiences with the disease. Earliest memories, diagnosis (incl. challenges in actually getting diagnosed), treatments - successful and otherwise, living with the disease - work/home life, and anything else you wanted to share.
Your interview would then be edited together with those from fellow sufferers into a video (or potential series thereof) to be shared across social media.
Depending on the volume of interviews we are able to conduct, our primary goal would be to produce one overall video on WED/RLS, featuring clips from a number of interviews, with links (on screen and in video description) to full(er) individual interviews.
In addition to interviewees, I would love to hear from any WED/RLS organisations who would be interested in help with things like marketing and promotion.
My story is much longer than what I have shared here today, I didn't want to bore you all straight off the bat. But I'm more interested in your stories. And above all, I'm interested in telling your stories.
If any of you have any questions, feel free to ask them below.
If you would like to discuss being interviewed, or taking part in any way, you can drop me an email via [Email address deleted - not allowed on our forum)
For those curious, we have a Showreel of our latest work here:
(Ps. Sorry for calling it WED/RLS the whole bloody time!)