Psychosocial Interviews

On my website DuchenneMen, I'm conducting a new interview/survey on Psychosocial care aspects for adults with DMD. In most Duchenne care guidelines I've seen Psychosocial sections increasingly appear. The mental health side of DMD has only recently been explored and over 30% of those with DMD have mental health issues.

For everyone with this condition there are always down days in amongst the positive days and having someone to talk to may be very beneficial if you're an adult. I've never had professional counselling or anything like that and I feel it may have helped, especially during massive transition periods like losing the ability to walk and after a troubling time in intensive care at age 16 to 17.

Most adults with DMD have had to develop their own coping strategies to deal with constant loses of ability. Whether it's a network of friends, work or any number of things that get us through each day.

If you have DMD and are 17+ and would like to take part please email me at thebig_ian_g@btinternet.com.

Here's the questions;


Psychosocial Interview 

Name(optional):

Age(required):

1) Have you ever received counselling for DMD or any other related things?

2) If you did was it helpful?

3) If you haven't received this kind of care what do you do when you're having a bad time mentally? (Music, Friends network, playing games and talking to other health professionals etc.)

4) What are the things that most concern you about Duchenne's especially in your near future?

5) Do you think those with DMD living into adulthood should receive psychosocial care or counselling?

6) Would health professionals be best suited to provide this care or for instance a FaceBook group of fellow adults with DMD that invites health professionals in occasionally?

7) What other overlooked things should be included in adult care of DMD?

8) New treatments appear on the horizon but are generally aimed at those who can still walk, do you find this difficult mentally?