Limb Girdle MD – anyone out there with it?

Viewing 19 posts - 1 through 19 (of 19 total)
  • #137615
    Limb Girdle MD – anyone out there with it?

    Hi,

    I was wondering if there is anyone out there with Limb Girdle MD who, preferably, lives around the Epping, Essex area but if not that’s fine and can share their experiences – good and bad about living with Limb Girdle MD.

    I have Limb Girdle MD but I don’t have any contact with anyone else with Limb Girdle or, indeed, anyone else with any form of MD. I use two sicks when I do walk but mainly use a mobility scooter to get around.

    As my condition progresses I would love to be in touch with others who share the same challenges and understand what it’s like to live with MD. :)

    Shevvy

    shevvyt1
    Participant
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    Joined: 16/11/2013
    #137619
    Reply To: Limb Girdle MD – anyone out there with it?

    Hi I have rigid spine md. Am home user and use chair or scooter 98% of time with support from a high level lean walker frame indoors

    Welcome to forum and happy to help

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #137646
    Reply To: Limb Girdle MD – anyone out there with it?

    Hello and welcome to the forum. As you will no doubt discover there will be lots of folk for oyu to talk to here as Catatude has already shown. please feel free to return often, that way you will gain most benefit.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #137652
    Reply To: Limb Girdle MD – anyone out there with it?

    I & one of my brothers has Type 2A Limb Girdle mate but, reluctant to talk to a potential West Ham supporter…

    Ah, GOTCHA – just pulling your leg :LOL: .

    Ask away.

    There is nothing noble in being superior to your fellow man; true nobility is being superior to your former self

    I, Disabled Bloke
    Participant
    Posts: 540
    Joined: 29/10/2010
    #137672
    Reply To: Limb Girdle MD – anyone out there with it?

    Hi, good to hear from you. You’ll be pleased to know that I am not a West Ham fan – Southampton is my team. Not going well at the moment though, I’m sorry to say – now footy is a whole new post!

    How do you manage with your LGMD? Do either of you find it limiting in, for example, going out for a drink or meal? If so how do you deal with any difficulties?

    I would love to hear back from you. :waving:

    Shevvy

    shevvyt1
    Participant
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    Joined: 16/11/2013
    #137673
    Reply To: Limb Girdle MD – anyone out there with it?

    Hi, thank you for your reply. The forum is a great idea to share thoughts, challenges and experiences. I shall return quite frequently to check it out as I think it can be quite e isolating when you don’t know anyone with LGMD or any form of MD. My friends are all able bodied and do not face the same challenges as I do now, especially as the condition progresses. :ty:

    Shevvy

    shevvyt1
    Participant
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    Joined: 16/11/2013
    #137885
    Reply To: Limb Girdle MD – anyone out there with it?

    Hi I’ve also been diagnosed with this and live near Brentwood in Essex

    Annem
    Participant
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    Joined: 28/03/2016
    #137928
    Reply To: Limb Girdle MD – anyone out there with it?

    Hi shevvyt1! :welcome:

    I’m live East Sussex and I have Ullrich CMD. You will find that there are some crossover issues between some types of MD. Glad to have you on board!

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #137978
    Reply To: Limb Girdle MD – anyone out there with it?

    Hi, Although I think I have heard of your type, I’m not really familiar with it, sorry! There are so many different types. What similarities are there? What type of challenges do you come accross? Thank you for replying.

    Shevvy

    shevvyt1
    Participant
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    Joined: 16/11/2013
    #137979
    Reply To: Limb Girdle MD – anyone out there with it?

    Hi,
    Thank you for replying. Brentwood is pretty close. I often drive through Brentwood. I sometimes use the Care Co shop which is fairly close to the police station. I sometimes also go to the Black Horse but haven’t been there for quite a long time.

    If you don’t mind me asking, are you under a hospital to monitor your MD, if so, which one? What sort of challenges do you find with your LGMD?

    Look forward to hearing from you. :)

    Shevvy

    shevvyt1
    Participant
    Posts: 0
    Joined: 16/11/2013
    #138318
    Reply To: Limb Girdle MD – anyone out there with it?

    Hi, good to hear from you. You’ll be pleased to know that I am not a West Ham fan – Southampton is my team. Not going well at the moment though, I’m sorry to say – now footy is a whole new post!

    How do you manage with your LGMD? Do either of you find it limiting in, for example, going out for a drink or meal? If so how do you deal with any difficulties?

    I would love to hear back from you. :waving:

    Welcome to the forum & pleased to read you’re not a spammer (West Ham supporter for the uninitiated, not the type that makes inappropriate posts about how much they earn :LOL: ).

    I can assure you as a life long Spurs supporter my team are absolutely no help in assisting me to cope with LGMD.

    I’m sure, as others will concur, it’s natural for any disability to have an impact on your life. It’s not all about how you cope with it but, how the world around you accommodates the less-abled & I for one struggle where I live.

    However, I shall try to offer to share experiences that may assist you, wherever possible :yes: .

    There is nothing noble in being superior to your fellow man; true nobility is being superior to your former self

    I, Disabled Bloke
    Participant
    Posts: 540
    Joined: 29/10/2010
    #138381
    Reply To: Limb Girdle MD – anyone out there with it?

    Hi,

    A good win for us today. We hammered the Hammers! You mention that you struggle with where you live, what sort of challenges do you face? Do you find going out for a drink or meal a difficult? What changes do you think could be implemented to lessen the any obstacles?
    :) :)

    Shevvy

    shevvyt1
    Participant
    Posts: 0
    Joined: 16/11/2013
    #138385
    Reply To: Limb Girdle MD – anyone out there with it?

    It’s hard to pinpoint what’s going wrong with the spammers. They can’t blame the stadium, I don’t subscribe to that. If they do, they’ve got 100 years of bad luck to live with in that place at least over the duration of it’s lease. And Bilic hasn’t become a bad manager over night.

    It’s gonna be a long & hard season for ’em. The Saints on the other hand, despite keep selling their best players & losing two good managers are not doing too bad. What do you think?

    I’m caught between a rock & a hard place mate. I’m neither completely off my feet nor in me chariot full time.

    I rely on my bespoke rising armchair & profiling hospital bed to get me to a standing position. A power cut would leave me flummoxed.

    And the only place in the world I can go to the toilet is in my bathroom due to it’s layout..

    So, I’m afraid I don’t go out to eat or socialise & haven’t for some years. Not for any length of time at least.

    I haven’t been to the pub to watch footy or see me mates since we beat manure at their place in the snow in January a few seasons back. I did doughnuts in the snow all the way home on me chariot, driving me baby brother (my chaperone) barmey cos it took us so long.

    If I have managed to ‘sit on the throne’ early enough in the day then I can go out until I need to pee. As a result I’ve only managed two or three hour shopping trips out really over the past three years.

    There is nothing noble in being superior to your fellow man; true nobility is being superior to your former self

    I, Disabled Bloke
    Participant
    Posts: 540
    Joined: 29/10/2010
    #138480
    Reply To: Limb Girdle MD – anyone out there with it?

    I haven’t been to the pub to watch footy or see me mates since we beat manure at their place in the snow in January a few seasons back. I did doughnuts in the snow all the way home on me chariot, driving me baby brother (my chaperone) barmey cos it took us so long.

    I should just point out, to those not in the know, when I say “we beat manure”, it’s a play on words & reference to Manchester United. A football thing.

    I don’t want you to be sat there reading, recoiling in horror at the thought of my friends & I pounding on piles of horse poo in a pub.

    We gave that up years ago :LOL: .

    There is nothing noble in being superior to your fellow man; true nobility is being superior to your former self

    I, Disabled Bloke
    Participant
    Posts: 540
    Joined: 29/10/2010
    #138510
    Reply To: Limb Girdle MD – anyone out there with it?

    I haven’t been to the pub to watch footy or see me mates since we beat manure at their place in the snow in January a few seasons back. I did doughnuts in the snow all the way home on me chariot, driving me baby brother (my chaperone) barmey cos it took us so long.

    I should just point out, to those not in the know, when I say “we beat manure”, it’s a play on words & reference to Manchester United. A football thing.

    I don’t want you to be sat there reading, recoiling in horror at the thought of my friends & I pounding on piles of horse poo in a pub.

    We gave that up years ago :LOL: .

    whatever makes you happy wonder woman lol .we dont judge. :LOL: :rollover:

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #143150
    Reply To: Limb Girdle MD – anyone out there with it?

    :new: Hi, my daughter has been diagnosed with LGMD. She is 11. Under investigation since age 5, took a while for diagnosis. Would be great if any other families out there to chat too. In process of adapting house… Been total nightmare so far :roll: Any advice in relation to thus greatly appreciated :waving:

    CLAllen
    Participant
    Posts: 0
    Joined: 20/10/2016
    #143226
    Reply To: Limb Girdle MD – anyone out there with it?

    Hi CLAllen,

    Diagnosis can take a long time. I have an unspecified type at the moment and am still awaiting a diagnosis. House adaptations are necessary over the years. When we moved into our house many years ago I didn’t even know I had LGMD. We have had to make adaptations such as graduated steps to enter, grab rails and a stairlift. I assume that your daughter has an Educational Health Care Plan(EHCP) to ensure that her needs are met in school.

    The forum is good for ideas and support. The MDUK website is also very useful for all sorts of information.

    Hope any adaptations that you are making are going well.

    ;)

    Shevvy

    shevvyt1
    Participant
    Posts: 0
    Joined: 16/11/2013
    #147116
    Reply To: Limb Girdle MD – anyone out there with it?

    Hi I am Jane Henry and have a form of limb girdle dystrophy type undiagnosed. I use an electric wheelchair outside and a trolley to push indoors. I am not in your area as I live in Norfolk. Looking for a friend with similar problems.

    janeh
    Participant
    Posts: 0
    Joined: 24/01/2017
    #147261
    Reply To: Limb Girdle MD – anyone out there with it?

    Hi Jane,

    My type of Limb Girdle is also unspecified at the moment. I use a mobility scooter when out and use two sticks at other times. Sit to stand is a big issue for me at the moment. If you din’t mind me asking what difficulties do you find you have? :)

    Shevvy

    shevvyt1
    Participant
    Posts: 0
    Joined: 16/11/2013
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