Forum Replies Created
December 10, 2011 at 10:15 am #83325Re: Having MD and being a parent.
firstly ‘congratulations’ for your bundle of joy .
i had my daughter 18 yrs ago ….my md started to show before i got pregnant . i got diagnosed when she was 8 years old . i knew deep down i had a problem but i chose to ignore haha . i was struggling with lifting , bathing her, but i was lucky enough to have her dad or my mum around to help me . i found pushing the pram great as it was a support . As she got older it got easier as she got more independent ….thats when i started to fall over more frequently and couldnt get myself up , people used to stare and my daughter was getting upset that my mum demanded i got to the docs and find out what was wrong . I am so glad i had my daughter when i did as i know i definately couldnt cope now … i suppose what i am saying , with help and support you will be a fantastic father and dont beat yourself up with the things you cant do just enjoy the things you can , i found swimming was great with her by the way
rach xDecember 9, 2011 at 11:38 am #83279Re: travel insurance
i found the same problem a few years ago when we were going to gran canaria for a holiday …rung round lots of insurance companies who were quoting ridiculaous prices, then i remembered my brother who is an insurance broker for A- plan . I rung him and he put me through to their travel insurance department and if i can remember correctly i paid only £47 …if it is any help i can find out more for you
rach xNovember 22, 2011 at 10:29 am #82979Re: Dare I Ask…..Dating? Relationships?
hi …just to say i was in a marriage for 16 years .i got diagnosed 10 years ago …i separated from my husband 3 years ago and shortly after met my now new husband . We met on facebokk chatting to start of with and i was totally honest with him from day dot so he wasnt shocked when i met him . I honestly think its the best way to be , he asked lots of questions on our first meeting and he came to all my meetings with my consultants …my md has deteriorated since i have been with him but we get through any difficulty together …he is my primary carer now (his choice) and we couldnt be happierOctober 31, 2011 at 8:15 pm #82788Re: disabled parking
haha .. the t shirt is a great idea , although getting a little chilly atm . My husband has asked sainsburys if a security guard could possible patrol the disabled parking bays but was told that a clamping firm (which there is a sign ) patrols them . When he asked how often we were told once a month as the company is based in London …we are in west sussex ! i suppose until the problem is taken seriously then poeple will continue to abuse the disabled parking and we will continue to suffer the stares !October 25, 2011 at 2:07 pm #82524Re: what beinfits am i entiteled to nd how much?
hi everyone … i feel really lucky with this one ! i applied for dla when i got diagnosed 10 years ago and was at first awarded top rate mobility and no care . My consultant when i saw him told me to re-apply for the care component but do it with the help from the citizens advice bureau as they have benefit advisers that can help . I did that and for 9 and a half years have received high rate care and mobility … i would definately recommend to get in touch with themOctober 1, 2011 at 1:30 pm #82293Re: so angry
tip of the iceburg i think …. it would be great if everyone who faces cuts could stand together whether that be with learning difficulties, elderly or disabled ,md, ms etc ….it just seems to be a way of ‘pick on the vulnerable’ , easy target if you ask me ! what will it take …someone to die that has had their funding cut and then the council sued before they realise that they have made a terrible mistake ….disgraceful !October 1, 2011 at 11:58 am #82291Re: so angry
a spokesman from the md campaign spoke up for this gentleman on meridian tonight and stressed their disbelief and disgust , however to no avail as this case has already gone through an appeal and was turned down ….how can people justify this ? im waiting now for my re-assessment and am now dreading what the outcome will be !May 11, 2011 at 6:04 pm #79018Re: pain relief for LGMD
hi everyone … just to say i saw my consultant a couple of months ago and i mentioned the pain i was getting to him and he told me that md was painless !! it just goes to show , with the replies on here , what does he know , eh xFebruary 3, 2011 at 10:49 am #79003Re: pain relief for LGMD
hi again … thankyou for all your replies. I saw my GP and he prescribed a sleeping tablet as i keep waking my husband up at night to help turn me over …lol bless him, and tramadol and paracetamol during the day . pain seems bearable at the mo , which is goood ! hope you guys are ok ?