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Thank you for the welcome

I’ve been to quite a few of the conferences now but this one was special as the FSH-MD group were awarded Support group of the year by the MDC. I enjoy them as I get to meet up with all of the folk I chat to online, so treat it as a bit of a social meet-up and it’s nice to hear the latest news etc. I shall be going up to the Glasgow conference on the 2nd October too. There’s a few of us that will be travelling up in convey and making a weekend of it. That way we can chill out in the bar after

TA x

Thanks all for the replies … my husband doesn’t sleep brilliantly at night and wakes up quite often with a headache and i think the pain in his legs sometimes keep him awake but he does work long hours at the moment which is adding to his tiredness i think ………. waiting for an appointment to see a consultant in respiratory …… sorry to hear you don’t sleep to well that must be horrible hope you can get it sorted I am glad to have found a site i can pop on to and ask questions and will encourage my hubby to come on to too as he might find it helpful but he is a reluctant computer user and has only just worked out to get on facebook LOL .. thanks for advice too think we will pop to CAB to see what they have to say too ………. so thanks again all XX

Hi scooterkitty Welcome to TalkMD

Forums are a great place to make new friends, share information and experiences. As your new to forums you might like to a have look at the Hints and Tips thread where one of our moderators has written some useful tips on how to use the different codes on the forum. If your not sure of anything just ask and myself and one of the other moderators will be happy to help. Above all have fun.

Hiya Andrew.
That is tough that both you and your brother have BMD, i am the only one in my whole extended famiy, i was bitter at first but accept it ok now.

Do you still walk unaided? I am 35 and started using an elbow crutch but don’t always if just nipping out to the shops and certainly not to the pub! It is silly to be self conscious i know but my foolish pride gets in the way some times.

Long may you continue to “keep smiling”, you are obviously a glass half full whereas i try to be but sometimes gloomy thoughts get the better of me. I am seeing a counsellor of late as i am in receipt of ESA, had some free physio too so might as well take what is offered, it can’t do any harm after all!

It seems that BMD covers a broad spectrum and i am probably quite lucky like you and your brother to still be mobile at 35, even if a little wobbly these days.

Take care mate.
Ranald.

Thanks for the early replies, its good to chat with other people who are affected by MD as sometimes it feels like we are “Cut off”

My motto is right 90% of the time lol

Its a great forum so keep up the good work!!!

Speak soon

Andy

Hi Valerie B

Not only do we have the same name our circumstances seem similar too. I was given ill health retirement from my job as I could no longer cope in the workplace. Although we have a different type of MD our symptoms are similar. Would you like to talk some more? I was going to send you a PM but it looked a bit confusing to me.

Val

Hello
I’m Karen and I have FSH-MD, I was diagnosed about twenty years ago although in hindsight I’d had problems from early childhood. I’m now a full time wheelchair user and have PA’s to help me continue to be independent and achieve most of the things I still wish to do.
I’m chair of the FSH-MD Support Group UK. We’re celebrating our 25th Anniversary this year, its been quite an amazing year, we held our “Mega Spring Get together” in Haydock in May, and we will be holding our Autumn “Get Together” in Gloucester on Saturday 23rd October. If you’ve never been to one of our get togethers check out our website for details at http://www.fsh-group.org you’ll be made very welcome.
To round off our special year we’re very proud to be MDC’s “Support Group” of the year 2010

As a founding co chair of the West Midlands Muscle Group, I helped highlight the lack of services for people with MD and other neuromuscular conditions when the West Midlands specialised commission did a review of its services.
I’m also a member of the project group overseeing the setting up of the new West Midlands Neuromuscular Centre at Lakeside, Kings Norton, Birmingham, and have been invited to chair the fundraising group to raise funds for the new centre, if anyone is interested in helping to do this please message me, the more people we have helping the sooner we can reach our initial target of £250,000 and our opening date of April 2012.

I love chatting and meeting up with others with FSH and other md conditions to share experiences of living and coping with a neuromuscular condition. I look forward to catching up with you all

Karen

Hi everyone,

My name is Oonagh and I am a research student at the University of Nottingham. My research area relates to online groups, such as Talk MD, that help support people who have muscle disease and their carers.

Having worked and volunteered with Muscular Dystrophy Ireland for the past 6 years, I have become even more interested in contributing to useful research in the area of supporting people affected by muscle disease.

I will shortly be posting up details of a survey study which Talk MD members can take part in if they would like.
In the meantime I am happy to answer any questions you might have about this research.

Bye for now,

Oonagh

Hi!

I’m Andrew . I have Becker’s MD and live on the southeast coast though born and bred to south-east of london. I’m 35 and was diagnosed in my late teens though it’s only really in the last 5 or 6 years that mobility problems have started to affect me.

I have a degree in Chemistry (from nottingham funnily enough oonagh!) which gives me a small incite into the way research works. I also have postgrad degree in IT and used to be a software engineer a while back and have dabbled in self-employment in website design and website hosting. Wife and I are expecting our first child so my life will soon be dominated by being a stay-at-home Dad.

Anyway i’m happy to volunteer to help out on the forum as i’ll probably become part of the forum furniture anyway…at least until the patter of little feet take over!!

@amgmod wrote:

Hi Andy – I have dabbled amateurishly into the world of html and web pages, I could do with seeking alternative hosting but not just yet. These things are wonderful when they work but get a < or a wrong and its electronic idiocy is paramount, lol. Best of luck with baby ... when is the due date?

Hi Anne Marie, Just had a brief look at your website …looks good and you’ve obviously spent a long time on it! Especially like the clever style of the homepage. One of these days I must start my own website..not even got a blog at the moment. PM me if/when you want hosting and i’ll recommend you to who i used..not the cheapest but they have a brilliant support forum i used to spend hours in – was a few years back though.

Baby is due end of March so we’ve only recently had 12 weeks scan…excited but a bit scared too how i’ll cope when wife goes back to work after but i’m sure i’ll adapt as i do with everything else.