Muscular Dystrophy

Posted on: Fri, May 16 2008 9:01 PM

Posted by: afritz Posts: 1

Hi, name is Andrea and my neighbor's three year old son was just dignosed with muscular dystrophy (not sure which type yet?) and I am very upset because he's the sweetest boy you would ever meet.  She feels like her world has just come crashing down on her and I was wondering if anyone had any advice for me of ways I can possible help her deal with this.  I would really appreciate anything anyone has to offer.  Thanks.

Posted on: Fri, May 16 2008 10:37 PM

Posted by: dosha Posts: 8

HI! I AM NEW BUT I HAVE HAD SOME EXPERIENCE WITH A SIMIILAR SITUATION. THE VERY BEST THING YOU CAN DO IS BE A FRIEND.  JUST BE THERE TO LISTEN TO OFFER A SHOULDER TO CRY ON.  ASK WHAT YOU CAN DO TO HELP.  GIVE A HUG TO YOUR NEIGHBOR AND THE LITTLE ONE.  LET HER KNOW SHE ISN'T ALONE AND YOU REALLY CARE.  MY FRIENDS HAVE A DAUGHTER NOW 30 WHO HAS C.P. THEY WERE DEVASTED.  I JUST STAYED CLOSE LISTENED RESEARCHED THE CONDITION AND CONTINUED TO BE JUST A FRIEND.  I OFFERED TO  SIT WITH HER SO THEY GOT A BREAK ONCE IN A WHILE.  THESE CHILDERN ARE SPECIAL AND TEACH US SO MUCH.  GOOD LUCK TO YOUR FRIEND AND SON. YOU ARE A GOOD FRIEND FOR ASKING HOW TO HELP.

Posted on: Fri, May 16 2008 10:53 PM

Posted by: Irish Tornado Posts: 29

Hi Andrea,

 Sorry to hear about your neighbor's son. If he hasn't been to an MDA clinic they need to find one in there area. Their're great to work with and they can give them all the help there is possible.

Robert

Posted on: Sun, May 18 2008 2:06 AM

Posted by: Becky Posts: 1,555

Hey Andrea. I'm so sorry to hear about this. His parents must be so upset about this. Besides the MDA, you could also refer them to Disaboom. They should be able to find some helpful information here and also the support they need right now. You are very kind and thoughtful to help your neighbors in this way. You all are in my thoughts and prayers. Godspeed.

Becky

Posted on: Sat, Aug 2 2008 8:51 PM

Posted by: jojames Posts: 2

 Remind your friend that this is not the end of the world.  There are many people out there (including me) who live long fulfilling lives with MD.  I know it will be tough in the beginning, but there are lots of supports out there (MDA is a big one) and plenty of people doing it.

Posted on: Sat, Aug 2 2008 9:06 PM

Posted by: rainey826 Posts: 3,974

 HI ANDREA , HOW LUCKY YOUR FRIEND IS TO HAVE YOU ! ......JUST BE THERE FOR SUPPORT ......LISTEN AND LOVE . REAL IMPORTANT TO LET HER SHARE HER FEELING WITH SOMEONE ...........         RAINEY XO  

Posted on: Sun, Aug 3 2008 6:32 AM

Posted by: bonniethesurvivor Posts: 1,139

I think one of the things she needs right now is a good friend, and it sounds like you are that person.  You might refer her to the:

           MUSCULAR DYSTROPHY ASSOCIATION

           This is the group, also known as "Jerry's Kids," that can provide information regarding the illlness, mediations, treatment centers, camps, annual conventions and more local gatherings, etc., all of wich will be helpful to her as she moves forward, coping with this illness.

Your role should be, in my opinion, one of optimism, helping her realize that although she now knows her child has this burden in his life, it is one he will br able to carry with her loving and stong supoort.  As Rainey say, she needs someone to listen to her, and she is lucky to have you for that role.

Warmest regards and prayers for all of you.  bonnie

Posted on: Sun, Aug 3 2008 6:56 AM

Posted by: Wheelin Rev Posts: 837

Hi Andrea,

I have a hereditary disorder similar to MD that presents itself like MD. As others have said, a diagnosis is not the end of the world. For many, joining sites such as this can be a big relief as there are others going down the same road but are ahead of you. Gain knowledge from them as to how to make the best of any situation. I blog about my illness here at Disaboom as well as my own blog site which also journals my life with MELAS. 

There are many support forums for your friend and Disaboom is an excellent place to start. Not only does Disaboom have the social network aspect but Disaboom also takes the site two steps further with "Health" aspects and "Living" aspects of the illness. While nobody is promising a bed of roses with any major illness, associating with others that have a strong positive outlook on life is the the next closest thing to a cure. Attitude is everything. Been there, seen it in action, it works!

Dave