- Limb-girdle muscular dystrophy
- Interviews
Tony's interview
How did all start?
Started having a hard time getting up from a sitting position, also climbing stairs became very difficult. Then my arms became extremely week.
Do you already have a diagnosis? How long did it take you to get it?
Yes I'm diagnosed with Limb Girdle Muscular Dystrophy type 2A. It took about 2 years for them to diagnose me.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I had very bad scapula winging , it became very difficult to wash my hair. So the operation done is called scapulothoracic arthrodesis.
What has been the most useful thing for you so far?
The scapulothoracic arthrodesis, and I had a bilateral heel cord lengthening because of losing my leg muscles so quick I was having a lot of falls.
What have been your biggest difficulties?
Biggest difficulties is most deffintly not being able to do the things with my child that a lot of people take for granite.
How has your social and family environment reacted? Have your social or family relationships changed?
My family and friends treat me normal now and that is deffintly how I want it to be they know if I need help that I have learned to ask. It was hard for them at first.
What things have you stopped doing?
Just some physical activities that I know I can't do any more. But I always try things new and old, I just do them a little different.
What do you think about the future?
I'm ready for what ever comes.
So far, which years have been the best years in your life? What have you done during them?
The last 6 , having a child
What would you like to do if you didn’t have your condition?
I wanted to be a piolt in the airforce.
If you had to describe your life in a sentence, what would it be?
My life is difficult at times, but full of happiness and love.
Finally, what advice would you give to a person in a similar situation?
Don't be afraid to talk about it or ask questions.
