What to do with a new diagnosis of muscular dystrophy


So you’ve just gotten home from the doctor who said that you or your child have muscular dystrophy? What are you supposed to do now?

Many people email me this question and I tell them pretty much the same thing — “Keep on living!”

Of course there is some mental shock. That will wear off. You might even find yourself frantically searching for information about muscular dystrophy. That might be why you’re here right now.

You are allowed to feel all sorts of things — frustrated, mad, upset, panicked, and overwhelmed. Of course you are. I am here to tell you that it will be okay.

So what can you do now? Here are some suggestions:

1. Read more of my posts. Hopefully you’ll come to find that despite having muscular dystrophy it is possible to have a fun and happy life! I’m happier now than ever and it has been 25 years since I found out I have muscular dystrophy.

2. On the other hand, stop reading about it! Take a break from the Internet. If you are reading about medical things and studies and all the non-personal things about muscular dystrophy, stop! Take a break! Worry about these things when you’re in front of your doctor. One thing about the internet is that you can be looking for information about a hangnail and pretty soon you’ve diagnosed yourself with cancer.

3. Look at how it is right now. Unless you’ve been ignoring symptoms for a very long time, odds are you came about a diagnosis because you noticed some small things and a few difficulties here and there. Right now is not 10, 20, or 30 years from now. Worry about that later. Right now hopefully and probably isn’t too bad for you. Nothing has really changed, you’ve just gotten a name for it.

4. Plan something you can do now. Why wait? Many people put off doing things because they think they don’t have time, but they don’t have time not to! The problem is that they don’t make time. If a diagnosis of muscular dystrophy is good for anything, it’s good for creating some urgency with the fun life things. Focus your energy on planning something fun like a trip or an outing instead of worrying about the disease.

5. Find others in the same situation. The beauty of Facebook, Twitter, and the rest of the internet is that it’s fairly easy to find people who are in the same situation as you. Contact your local Muscular Dystrophy Association office and see if there are support groups or events you can attend. Gravitate towards the positive people. You’re not alone.

Hopefully these tips will help you in the moments now where you are overwhelmed. If not, come back to them later. And of course feel free to contact me if you have any questions!

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