Hi everyone - I'm from Georgetown, Ontario Canada - about an hour northwest of Toronto.

I'm 54 and have had BMD since I was in my early 20's. In the early 80;s I was mis-diagnosed with LGMD but in 2001 I was diagnosed correctly with BMD. (deletion exons 45-47).

I'm still able to stand and walk a little (from house to car and around the house). Winter is a big problem with snow and ice. But with some assistance I'm able to get by. I started using a power scooter for longer trips in 2003 when my wife and I visited Washington DC. I would not have been able to do it without.

Until recently (January 2010) I worked full time as a Fundraiser / Administrator. A few years ago I started using a power chair in the office. It just became to tiring to get up and down from my chair.

I'd love to hear from others on the forum and I will be posting more soon.

Gord

Hello Gord,  
I am also 54-year from US, Tennessee with Becker MD. Initially diagnosed in the 70's. Several years back tested and found deletions exist on exons 46-49. Sounds like our conditions are very similar, however I took a fall breaking my left leg about 7 years ago that prevents me from safely walking yet use a standing frame, scooter and daily therapy.  Oh yes, the cold can be tough. 

I would greatly enjoy chatting and grateful for your post on Thanksgiving Day in US. 

Hi Beckerman2 - sorry about your broken leg. Falling and breaking an arm or a leg is my greatest fear. My second cousin who is a couple years younger also has BMD. He fell a few year ago and now uses his wheelchair full time.

I try to be very careful and not get into situations where a fall could happen. But you never know when it could happen.

I have a service dog named Halle and she helps me pick up dropped items and barks for help if I do fall.

Keep in touch!

Gord

Hey Gord,

Thanks so much for joining this site and sharing your story.  Its comforting to me to find out that you have the same deletion as my son and you are still walking at your age.  He is only 8.  Only those of us who know about his MD can detect his weakness at this point.  Others have no idea of his destiny......

I am also doing fundraising.  Together with the MDA and local business owners we are doing a local "Dancing with the Stars" event.  We are antcipating raising about 50k and it will all go to research for BMD!  When doctors told us to stand by and just live with the situation, I knew that I would never by happy with that.  Fundraising allows us the opportunity to feel that we are fighting back against this disease.  I know the treatment/cure is out there waiting to be discovered.  When it is finally announced that it has been found, we will all know that we had a hand in making that happen!  You are an inspiration!  Hope to meet you at the conference in LA!  -Leighann

Hey Gord,

Thanks so much for joining this site and sharing your story.  Its comforting to me to find out that you have the same deletion as my son and you are still walking at your age.  He is only 8.  Only those of us who know about his MD can detect his weakness at this point.  Others have no idea of his destiny......

I am also doing fundraising.  Together with the MDA and local business owners we are doing a local "Dancing with the Stars" event.  We are antcipating raising about 50k and it will all go to research for BMD!  When doctors told us to stand by and just live with the situation, I knew that I would never by happy with that.  Fundraising allows us the opportunity to feel that we are fighting back against this disease.  I know the treatment/cure is out there waiting to be discovered.  When it is finally announced that it has been found, we will all know that we had a hand in making that happen!  You are an inspiration!  Hope to meet you at the conference in LA!  -Leighann