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New to the board, would like to talk about LGMD

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Old 09-13-2011, 05:07 PM   #1
Join Date: Sep 2011
Location: Scotland, United Kingdom
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e1991 HB User
New to the board, would like to talk about LGMD

Hi all

I've spent the last few days reading over a lot of the posts on this boards and they've helped me more than I can say I'm 20, and I was diagnosed with LGMD just before I turned 17. For the past 3 years I've been more or less in denial, even though I've seen a big downturn this past year. I finally plucked up the courage to research online and found this board, and I'm so glad I did, it's such a relief to hear that people out there have almost exactly the same worries and problems as I do.

I haven't told any of my friends that I have a disability, although they obviously realise something is wrong, I've been able to hide it okay until recently. I just can't bring myself to talk to anyone about it, because what I really couldn't handle is their pity. I find myself declining invitations out more and more because of the overwhelming fear of finding myself somewhere with stairs without railings, or hills or slidey floors. I do think I'll tell them soon, but right now I'm just glad to get this off my chest somewhere that people understand.

Sorry that this is so long and boring! I just really needed to talk.


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Old 09-15-2011, 10:38 AM   #2
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Re: New to the board, would like to talk about LGMD

Hi Emma and welcome!

I've seen posts 10 times that long!

Believe me, and I speak for many others on this board.....I have LIVED what you are going through at the moment. I hid my symptoms for years. I would go out of my way to climb stairs and get out of chairs only when others weren't looking. Even my own family. I lived in constant terror that I would fall down and not be able to get up easily in front of my friends or coworkers. How could I ever explain it to them???!!!!

Finally I told my family that I needed to talk to the doctor about the problems I was having. I told my close coworkers and friends that I was experiencing some trouble and had an appointment to look into it. That got them prepared for the "bad" news that I knew I had to give them. Once everyone knew my whole mental attitude changed. I was so relieved that it wasn't a secret anymore. Plus I realized that people had been silently wondering what was going on with me. People finally understood and my family, friends and coworkers were all great about it and even offered help if and when I needed it.

Post anytime. We ALL understand exactly what you're going through. I just feel bad that you're so young. It's not fair. I was 40 when I got the bad news.

Good luck to you. I am sure that some of the ladies here will reply to you soon. I've gotten to know a lot of them here and they're all awesome!


Old 09-15-2011, 11:53 PM   #3
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Re: New to the board, would like to talk about LGMD

Hi Emma,

I can understand some of what you are going through (The docs keep changing their mind about what I have, so I am not sure if I can totally relate to LGMD due to the fact that docs now think I might have Parkinson's). I can totally relate to hiding what is wrong from friends and family. I try hard so that people do not know that my balance is bad. I lean on a chair, wall, counter or anything near by. When I walk I have to concentrate on each step etc.

I am glad that things became better for you once you told others what is wrong with you. Hiding ones condition gets to be a lot of work. It took a lot of courage for you to do that. I have only told a few friends that I have something wrong, and that is because they like to walk with me, and noticed that I was slow and tripped over every little thing. Hopefully I will be strong like you and get courage to tell others that I am not leaning on the wall to hold it up, but it's holding me up.

This board is a great place to get answers to various problems, and comfort.

Welcome to the board!

Old 09-16-2011, 12:38 AM   #4
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Re: New to the board, would like to talk about LGMD

Hi there

Welcome to our circle of friends. This is an excellent site to just express your feelings without being judged

I was diagnosed at the age of 19 although symptoms started when I was about 17 but obviously I didn’t really take note of it.

I was a very athletic person and when the running became an issue I just blamed it on being unfit

I didn’t hide the fact that I had MD because for me it wasn’t a big deal because I obviously didn’t know much about it.

Pc’s and Google wasn’t part of our lives in the 90’s so I didn’t even bother to look up the effects of MD.

Please don’t retract yourself from activities, going out, having fun because the reality is you still can. I regret and I mean REALLY regret looking back that I didn’t make use of my body when I was still able to.

After my divorce at the age of 28 my live actually began although I was physically struggling

I started going to clubs and having fun. I could still dance (without a fear of falling) and get up unassisted.

I bungee-jumped went skydiving and went out. I do regret that between the age of 21-28 I sat back and let the MD take over my life.

Please don’t do that. It will take time to accept what you have. For me having a sense of humour helps me although sometimes I hate my body and my situation that I cry for a few minutes and then just go on again.

If I could give anyone advice that is in the early stages of MD use your body as much as you can. If you need help physically or emotionally ask for it. Sometimes even people without a disability need help up stairs or down a slippery hill.

I’m at a stage where I cannot go out alone or unassisted and I do need constant help but I can still walk even if it’s only in my own house.

Expect pity when you tell someone. Put yourself in their shoes and you will realize that you would have pity if it was one of your friends. Tell them – expect tears and move on. The pity will not last anyway and soon they will treat you as you were before.

Btw nothing you say to us is boring and believe me sometimes your posts will bring a smile and support to someone else that needs it.


Old 09-16-2011, 11:17 AM   #5
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Re: New to the board, would like to talk about LGMD

Thanks Mark for the warm welcome. It's a relief to talk to people who understand what having MD is like and are going through the same thing. You've completely put into words how I feel when you mentioned the constant terror of falling and not being able to get up - this happens to me more and more now and I hate how helpless and embarrassed I feel. Everyday tasks are becoming more and more difficult, it's such a frustrating feeling. Your family and friends sound like they've been a great support to you, hopefully I'll be able to pluck up the courage to tell my friends soon.

Hi Greetings, thankyou for the reply. It's so frustrating and horrible to find things that used to be relatively easy increasingly difficult. I do the leaning thing a lot too, I hate standing in wide open spaces for too long, I always scope out wherever I am and find something that can help me balance! I hope you find out what you have soon, good luck.

Mandy, thankyou for the advice. You sound like you have a great attitude - I've been skydiving too, on my 18th birthday, I loved it! Getting onto the plane was a little difficult lol but once I was up and out it was an amazing experience. Bungee jumping sounds amazing too. I do want to keep as active as I can but recently I've been terrified of going out and falling over or being faced with stairs. I don't want to let this take over my life, but sometimes it feels like it's affecting everything. I am mostly a positive person, but sometimes, as I'm sure you all know, it does get so difficult.

I'm really glad I posted here, the only people I've spoken to before about my MD are my doctor and my mum, and while they are very helpful and supportive, they of course can't fully understand what it's like.

Thanks everyone, Emma

Old 09-17-2011, 11:56 AM   #6
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Re: New to the board, would like to talk about LGMD


Welcome - you have come to the right place.Drs. have an important role in this but once you know its MD of one type or another these people here are the greatest.Even thou the diagnosis is not great it is what it is and we have all been where you are now at one time or another.

I have a 37 yr old daughter that is in denial and so far she is doing ok but at some point she will have to tell her friends and co-workers.I guess we all do it in our own time.

Like Mandy says the sooner the better. You don't want to give in yet and you will need your friends and family for support and help. Sometimes it takes them some time to come around.Don't let your pride get in the way. I did and I regret it.

Don't be afraid to ask about anything here. We all have issues with stairs,uneven walking surfaces,bathrooms,getting out of chairs,how to deal with the public etc. You name it and someone here has probably been there.

Even if you don't need advice we are all here to listen if you need to vent.

Later Dreaman

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