Hi everyone, my name is Jessica and I am 23 years old. I lost my brother, Brian to DMD almost a year ago. Obviously this is not something you can ever be fully prepared to deal with and I keep thinking I am alright and that I will be fine. The reality is my best friend and big brother is gone and I am confused and torn apart.


Brian was always happy and lived a fuller life than most of us who live more than 24 years. In those few years he taught me and my family many many valuable and lasting lessons that I have and will take with me for the rest of my life. I know he would not want to see me the mess that I am because he never liked to see anyone sad and would always try to cheer you up no matter how difficult.


My reason for writing is to see how other people have gotten through this difficult time and if you can offer any support or suggestions?



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Hi Jessica,

I am not in the position of offering advice really, my son is 12 and not as far down the road ovbiously as your sweet brother.  But I can say in my 50ish years I've learned to take life sometimes as little as 5 minutes at a time.  When things get exceptionally tough, it sounds like that's what's happening to you, I imagine I'd need to set time aside and just exist, breathe, do nothing but sit through the next 5 minutes.  It is painful while just sitting there waiting for 5 minutes to pass thinking about the sad things.  But in the long run, I feel better having gone THROUGH it, not just around it.  You've probably already done so much of that.  After the 5 minutes is over, if i need another and another then I do it again, with the resolve that I wll force myself to stop after the necessary amount of time, and get on with life.  


After that I make a promise to myself to banish all sad thoughts until I have enough time to set aside my 5 mins again.  When sad thoughts crop up spontaneously, work to replace them with positive memories of your beautiful brother, or something that can make you happier for a minute in order to get through.  What did he do or say that always made you smile?  What valuable lessons did he teach you that you can now apply to your life?  Those things are still there to make you smile or teach you...he hasn't left you really, just gone to another place until you can see him later. 


Obviously his spirit is very strong and lives inside your heart or you wouldn't have written here.  Your brother is with you and loves you still.  You may have to look in other places to find him, but he is still there for you and always will be.  Listen to the quiet. 


sending hugs and prayers for strength,




My brother is almost thirteen and has become non-ambulatory within the last six months. I am not at the stage you are at, but I know that as each day passes, it gets nearer. I find that music is the one true way that I can get through tough times. It helps me to organize my thoughts or just leave them behind for a short time. I play the guitar and Tenor Saxophone and find that the guitar really helps me to escape the harsh realities surrounding me. I know that I cannot yet fully understand the pain you are feeling, but I do know that music helps me through everything.
I am so very sorry for your loss. If Brian is like Derek, I know he made you a better person and a stronger one. He shaped your life in a way nothing else has before.
I hope my words can help somewhat.


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