Hey guys,

I've been wondering, how do others cope/accept the fact they have BMD?  How do you tell others without being aqward?  I just don't like the fact I seem normal (From the outsite), but have this BMD holding me back.  I feel people are avoiding me because they are afraid to ask me about my condition.  Things like having a relationship and starting a family also kinda concern me having BMD.  I'm 25 and feel like I'm in a rut...  I know I need to change my thinking, I just would like to know what others with BMD are doing to make their lives a little more "normal".

Hi,
I'm not sure what to say, but my friend says pretty much the same thing about his BMD. I'm not sure about this, but maybe just talking to a professional might help? Or having a close friend who you can talk to might help.

your not alone!

I'm 35 now and have been on this site for a while. I'm married , work for a descent company and have a good amount of hobbies. First I tell people what I have and if they don't care or want to listen I say to hell with them. There are tons of good people out there that are willing to be your friend. Willing to date and care for ya..you just have to find them. You have to become optimisstic and find things to do. Never be afraid to try things new things. Its not easy and never will be but you need to stay strong. I built myself a Harley trike to keep riding. I still excersice I walk a little slower but I keep going.  Life is motion and I never want to stop.The worst thing you can do with this is live in a cave. It doesn't help in the cause that we all need ot fight....If you need anything or have any questions email me.

I am 41 and a BMD patient and a part of me is still asking this and probably always will. I faced a lot of ignorance about my BMD growing up and in to adulthood, but you just begin to just live with it. It can be bleak at times and the future can seem scary. Saying that, it doean't mean you can't have a full and rich life. When I was 19, I struggled immensely with dealing with my condition and the reactions from other people. I hated the staring. I even used to protent I was drunk to disguise my unusual walking. It was at this this low point the best thing that ever happened to me occured. I met who was to become my wife. She was a wonderful and strikingly beautiful woman. I'm no oil painting and I felt she was out of my league. It felt has if I'd been sent an angel. I feel this is when my life realy started. We've been together over 20 years now and lived a full and interesting life. I work full timeA NORMAL life!! So try not to get too down, because your time will come. Just try to be positive and be yourself. Your still young so don't let your life slip by. If other people stare or don't wanna know, then to hell with 'em. Has my wife says, "Don't worry about them, they don't matter. They don't love you or know you!". Never be afraid to ask for help though, because most people are on your side and just want to help you!

Go for it!

Regards

Steven

All of you sound so familiar. Glad to know I am not alone. I have a book publishing Sept, 1 2010. It shares much of these same feelings.
http://www.notallprisonshavebars.com/

Personally I think I went through this phase during high school and once I got to college I was just open about it. People would ask questions if they wanted and I'd answer. I think attitude has a lot to do with it and once mine changed it was easy to just go about life without caring what people thought -- especially people who didn't know me.

Now I think either I'm immune to worrying about it or I just don't care anymore but it doesn't bother me. I'm in my 30s now and it's a non-issue with my family and friends. I had someone tell me the other day that even when I'm sitting there in my wheelchair they forget that I need the wheelchair to get around. So it's like they're not seeing my chair or disability, they're just seeing me.

I have some posts in my blog about this stuff. Check out the link below...Good luck.

Ditto the previous comments.

If you don't have friends that understand, then find new friends. There are plenty of people out there that are capable of completely ignoring BMD and treat you as a real person. There are lots of successful BMD folks out there, and you can be too, you just need to find your niche. So just do what you do and don't worry about what other people think.

Best of luck, Kevin

this is my third time trying to post a reply to your post. it keeps getting deleted. I am ashamed to have BMD, so I dont tell anyone that I have it. I have always wanted to have a fit muscular body for as long as I can remember. In my teens it was so easy for me to stay fit and muscular. In my 20's I lost it all rapidly. I just turned 30 and now I am very weak and out of shape. You see I am a very happy person by nature but BMD keeps it from showing. The sun and blue sky make me feel happy and energetic. I dont have any friends so I just walk my shih tzu everyday to get some sunshine. I am dying to meet other bmd patients to talk with or possibly hang out with.

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 acewithoutadoubt.jpg [192 KB] :: An ace without a doubt. Turns out to be a bastard.

In my early twenties when I was first diagnosed I had a lot of problems dealing with BMD. But as the years have gone by I have learned to deal with it. I guess dealing with any disability is similar to the 7 stages of grieving:
1.        SHOCK & DENIAL
2.        PAIN & GUILT
3.        ANGER & BARGAINING
4.        "DEPRESSION", REFLECTION, LONELINESS
5.        THE UPWARD TURN
6.        RECONSTRUCTION & WORKING THROUGH
7.        ACCEPTANCE & HOPE  
I’ve been through them all but it took a number of years to come to terms. But my life got much better. I have some very good friends, a nice home and a loving wife. I never would have thought it could happen back in 30 years ago.   I still have my good and bad days but mostly good!  

One thing I have learned is to be up front with your BMD. I find that telling people that I have muscular dystrophy is disarming and others are more accepting.    

In 2004 I received a beautiful service dog Halle a golden retriever. She helps me pick up dropped items, opens doors and barks for help if (when) I fall. But a side benefit is the attention she brings when we are out in public. When I’m with Halle people say hi and ask me about my dog – a great conversation opener. In fact Halle is a bit of a “chick magnet”. When ever my wife leaves me with Halle she always comments on the number of women that I chat with. Good thing she’s not jealous. LOL  

Making friends is difficult and having a disability may make it harder. But I’ve been graced with a great support system at never end to amaze me.  

Gord

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Gordwallen - that is an awesome dog. My little shih tzu pulls and almost knocks me over. I can't imagine getting pulled by a huge dog. What does ssd stand for on her collar?

Cybernetic - Halle is trained not to pull. She walks at my pace. SSD stands for Special Skills Dogs of Canada. Dogs are provided free of charge and are fully trained. I had to go for a 3 week course to train with her. She will be 8 next week.

Gord

Hey Cyber

The BMD conference is coming to So Cal this year. I want to personally invite you to come. It is a great event each year and you will get to meet fellow BMD patients that are just like you. They understand the difficulties of the conditiona and can give and receive great advice. As a bonus, we'll have some doctors that study BMD and are currently running drug studies. They will be able to answer questions face to face.

Kevin