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Say "hello" here
Welcome to TalkMD!
TalkMD is our new forum for people with muscle disease. Remember, this is your space so make yourself at home!
I’m Website Manager at the Muscular Dystrophy Campaign, and I’m going to be spending quite a bit of time on here. So let me know if you’ve got any questions about the forum or the Muscular Dystrophy Campaign in general. And if I can’t answer your questions, I’ll do my best to point you in the right direction.
We’re recruiting a marvelous team of volunteer moderators who’ll be helping out on here too, details to be revealed soon…and I dare say quite a few members of staff from the Muscular Dystrophy Campaign will be dropping by, so don’t hesitate to ask them any questions!
And that’s what TalkMD is all about, none of us know everything there is to know about muscular dystrophy, but we’re all experts in our own little ways and together we’ve got lots of useful knowledge and interesting stories to share….together we’re stronger…or something like that.
I’d give the House Rules a once over if I was you, but other than that, just get stuck in!
See you around,
Sam
Re: Say “hello” hereHello Talk MD!
I work with Sam at MDC HQ.
A little bit about me:
I’ve been working at MDC for over for over 4 years now in fundraising and marketing. I’m especially pleased with all the support we’ve been getting on Facebook and Twitter lately. If you post a question on our Facebook page, it’s probably me that’s typing back at you!
Sam and I recently spoke to some of our new volunteer moderators, which was great. They all have personal experience of MD and are very enthusiastic about looking after Talk MD. It’s still early days but we’ really looking forward to seeing how it develops.
I’m happy to answer any questions if anyone want to PM me
Also, today is my birthday!
Re: Say “hello” hereHi!
I’m Sarah and one of the volunteer moderators on this site. I am 32 and have Congenital Muscular Dystrophy. My background is in Education and I also do Social Policy research for the Citizens Advice Bureau. I love to chat – although I promise not to ramble too much on here – and have gained a lot from being a member of a number of forums. They can be a marvellous source of information and support and I have found that there is usually someone who knows answers to questions or can point you in the right direction.
This forum has the potential to be a powerful resource and a great place to hang out. I am looking forward to being part of this community and getting to know you all – happy posting
Happy Birthday to medavep by the way!
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Say “hello” hereGreetings intrepid guinea pigs
My name is Anne-Marie, usually shortened to AM or one of my many nicknames. I have been celebrating the 21st anniversary of my 21st Birthday [a little cryptic maths for you
] a ‘survivor’ of FSH not sure which of us is winning the battle or the war. I have worked in a few varied fields [Baronial Estate to the DWP via a temping agency] but I am a retired ‘lady of leisure’ and yes, busier than ever! I have done some mad things like the Merchant Navy Training Board One-Day Survival Course, completed four “only gonna do this once” sailing trips onboard the Jubilee Sailing Trust’s two Tallships, and applied to be a volunteer moderator of TalkMD.
I am an avid reader, enjoy a vast range of music [just a mere 12 days worth of tracks on iTunes], used to play the piano, performed at recitals and competitions and have a few RSM Certificates. My best friend and I decided to hop over to Berlin to see a New Orleans sludge metal band, Crowbar, gig in the back room of a bar and ended up operating a web site about one of the members. Another time we nipped to Vienna to see David Helfgott [of Shine fame] perform meeting him and his wife afterwards.
Other than that I am at the keys here, tinkering on my own website, researching my family tree, answering those “Hey when you get a sec, could you look for ….” questions or getting a CSI/NCIS/Bones fix.
I’m looking forward to making new friends here.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Say “hello” hereWelcome aboard Dave, Sarah and AM. And many happy returns you two.
Really enjoyed reading your stories, get the feeling you’re going to be real naturals on the forum.
I noticed a bot had posted some spam in here this morning, so going to have a look at our settings so we can avoid that kind of thing in future. Once we’ve got the teething problems fixed we can “go public” and start letting people know all about the forum.
Speak soon…
Re: Say “hello” hereGreat looking website and forum. Just wanted to wish you luck with this new set up. Everything is crystal clear and so easy to navigate.
I look forward to getting to know you all.x x
Re: Say “hello” hereLook at me late to the party!
).I’m a huge cinema fan especially if it’s sic-fi, fantasy or action! I love reading too there’s nothing better than a good book. I share my life with a 2yr old tabby cat named Louie who is probably the most pampered moggie on my street. I also employ a team of 8 carers which is often entertaining and sometimes frustrating!
I’m looking forward to getting to know everyone on here and hopefully make some new friends along the way. I’m a member of some other forums and know what a great place they can be for help and advice and I’m looking forward to TalkMD becoming such a place as well as a fun social place too.
Re: Say “hello” hereHi All,
My name is Vicky and I’m a member of the Volunteer Fundraising team at The Muscular Dystrophy Campaign. Our team of seven Volunteer Fundraising Managers support volunteers in their local community and my job is to support the work of our VFMs from our London office.
I’ve been working at MDC for almost six months now and it’s my first job after graduating at the end of last year. It is also my first time on a chat forum, so I’m really excited to be involved
Re: Say “hello” hereHello,
I was invited here by a friend from another website (not related to anything medical).
I have Myotonia Congenita, Becker’s Variant, and suffer quite badly with the symptoms although I do get some relief from using Mexilitine. There’s not much to be done for us MC sufferers but sometimes it’s good to just talk about our experiences of life, medical science and our condition.
I’m not shy so if anyone has any questions ask away!
Re: Say “hello” hereHi all
I am a divorced man of 35 and i suffer from Becker MD. I lost my job last December after my driving licence was medically revoked and have struggled to get a reply from employers never mind a job!I currently receive ESA and DLA and am therefore doing ok financially but i really need something to occupy me during the day apart from Googling and drinking Guinness!
I would be delighted to hear from any other BMD sufferers or their carers.
Cheers, Ranald.
Re: Say “hello” hereHi Ranald, welcome to TalkMD.
It’s good that you’re getting those benefits which you’re entitled to, although as you say, it doesn’t make the job search any easier. What line of work are you interested in?
And what are your interests outside of work, football, films, music?
Re: Say “hello” here@tygertyger wrote:
Hello,
I was invited here by a friend from another website (not related to anything medical).
I have Myotonia Congenita, Becker’s Variant, and suffer quite badly with the symptoms although I do get some relief from using Mexilitine. There’s not much to be done for us MC sufferers but sometimes it’s good to just talk about our experiences of life, medical science and our condition.
I’m not shy so if anyone has any questions ask away!
Hi there Tyger Tyger
I gotta ask, is your screen name anything to do with William Blake’s poem? I adore tigers they are certainly my most favoured of animals, so misunderstood, so persecuted, who’d thinksomething that colourful could live in the frozen tundra of white winterland!
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Say “hello” here@ranald wrote:
Hi all
….. but i really need something to occupy me during the day apart from Googling and drinking Guinness!
I am the Google Godess!! A group of friends and I meet [when time zones allow] and I am the designated checker of ignorant facts, lol. I don’t do the guiness bit, I can’t lift pints anymore I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Say “hello” hereWelcome Ranald and Tyger (TT haven’t I seen you somewhere before?
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Say “hello” hereHi – my name’s Steve – I’ve just been diagnosed with Becker Muscular Dystrophy – I’m 46 so I suppose I’ve had quite a good period of reasonably blissful ignorance!
I enjoy reading (currently reading the last in the ‘Girl With the Dragon Tattoo’ series), music – I play the guitar – I’m into twiddly sort of syncopated acoustic guitar stuff, I have quite diverse tastes in music to listen to – from Red Hot Chili Peppers to Bach Cello Suites. I also love films (all genres) – I’m just useless at returning them – I reckon Blockbuster have made a fortune off me in late return fees.
I’ve got a partner who has just got back from the gym and two daughters 9 and 13, the older of the two has just started on Facebook, she is now on it permanently and appears to be acquiring ‘friends’ exponentially.
This forum looks really good – I’m sure I’ll meet some great people here – and share plenty of thoughts and experiences!
Re: Say “hello” hereWelcome to TalkMD StevieG and TygerTyger.
StevieG, funny you should mention your oldest using facebook. We do have a really popular facebook page,
https://www.facebook.com/musculardystrophyUK/
Although have to admit I prefer twitter and forums myself.Tyger, if you’re interested in scientific stuff, you might want to pop into “The Lab” section on here. Dr Kristina Elvidge is Research Communications Officer at our London office she will be posting links in there, you can also find her on twitter, http://www.twitter.com/kelvidge.
Anyway, make yourselves at home guys.
See you soon.
Sam
Re: Say “hello” hereHi Talk MD,
I am Kristina the research communications officer at the Muscular Dystrophy Campaign. I joined the charity just over two years ago and have been working to build up the research information we provide ever since. Before joining the charity I was working in a lab in Oxford, doing research on embryos. Before that I did a PhD in Australia. I love my job and the opportunity it gives me to communicate science to people, and help them understand what the research might mean for them.
Happy to answer any questions, and always keen to hear your feedback.
Looking forward to hearing from you!
Re: Say “hello” here@stevieg wrote:
Hi – my name’s Steve – I’ve just been diagnosed with Becker Muscular Dystrophy – I’m 46 so I suppose I’ve had quite a good period of reasonably blissful ignorance!
I enjoy reading (currently reading the last in the ‘Girl With the Dragon Tattoo’ series), music – I play the guitar – I’m into twiddly sort of syncopated acoustic guitar stuff, I have quite diverse tastes in music to listen to – from Red Hot Chili Peppers to Bach Cello Suites. I also love films (all genres) – I’m just useless at returning them – I reckon Blockbuster have made a fortune off me in late return fees.
I’ve got a partner who has just got back from the gym and two daughters 9 and 13, the older of the two has just started on Facebook, she is now on it permanently and appears to be acquiring ‘friends’ exponentially.
This forum looks really good – I’m sure I’ll meet some great people here – and share plenty of thoughts and experiences!
Hi Steve, my amazon delivery just arrived with the second in the ‘Girl with the Dragon Tatoo series’. Hope its as good as the first!
Re: Say “hello” here@tygertyger wrote:
Hello,
I was invited here by a friend from another website (not related to anything medical).
I have Myotonia Congenita, Becker’s Variant, and suffer quite badly with the symptoms although I do get some relief from using Mexilitine. There’s not much to be done for us MC sufferers but sometimes it’s good to just talk about our experiences of life, medical science and our condition.
I’m not shy so if anyone has any questions ask away!
Hi TygerTyger, Are you on the clinical trial for Mexiletine? Just curious….
Re: Say “hello” hereHi
I’m Val and I’m 50 years young. I have Mitochondrial Myopathy which was diagnosed 14 years ago. I’d known something wasn’t right for years but it was quite random so didn’t really think anything of it. In 1992 I went to my GP a couple of times and she put my things together as both being neurological in origin. Eventually I was diagnosed with MM and told to get on with my life.
For a while everything was OK but slowly I noticed I was doing less and less.Now I am housebound unless I have someone with me and I really hate being dependent on people.I’m a qualified aromatherapist and Reiki master and massage was a real passion in my life, both giving and receiving! I don’t find it so easy to massage these days as my balance is so bad. That makes me really sad as I used to love it so much. I am into all things “Alternative” and am convinced that this has helped me through the years. Also my husband (Mark) and I go to the gym 3 times a week and although I can only do certain things I know it is helpful.
I am sat here with my “good” leg in plaster because I’ve cracked my Tibia but a least the plaster is pink! How cool is that!
Just finding my way around this forum as I was used to the other one but looking forward to meeting new people.
Val
X
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