LGMD “Spotlight Interview”
Country: South Australia
LGMD Sub-Type: LGMD Type 2i / R9 Dystroglycan-related
At what age were you diagnosed?
I was diagnosed with muscular dystrophy when I was just 2 years old. It wasn’t until I was 21 that I found out I had LGMD Type 2i. Or R9 now as the name has been changed.
What were your first symptoms?
The very first symptom my mum noticed was that I could not hold my head up when I was in a baby walker.
Plus, I was not crawling when others my age were. I just struggled a lot; physically.
The symptom that I first noticed was when I could not keep up with other kids. I just wasn’t as fast as they were, but it never bothered me! I knew I was different, and I was okay with that.
Do you have other family members who have LGMD?
My twin sister also has LGMD2i, but there’s no other known cases of it being in the family line.
What do you find to be the greatest challenges in living with LGMD?
I struggle with losing my independence. It keeps getting further and further out of reach as I deteriorate over time. As with living. Will I ever be able to reach my dream job? Am I going to meet the man of my dreams? How long left can I continue doing the things that I love?
One of my other challenges in living with LGMD is that all too often people only see my wheelchair. They don’t see the person sitting in it. I’m working hard to change this by raising awareness through my community and wider. Showing and explaining that people with a disability are human too. We have the same wants and needs as everyone else.
What is your greatest accomplishment?
Wow, I feel like I want to copy and paste my resume here. Ha ha!
I’ve done a lot of study over the years, as I have changed career paths. I spent at least 10 years studying architecture and interior design and decoration. However, I have since changed career paths, I’m now getting involved in counseling and looking into Art Therapy. I have probably done a total of 20 courses over the years. Some of these courses are only day courses, don’t panic! I have also done a lot of volunteering. Plus, being an advocate to those who struggle to speak out. I have been involved in making my beach wheelchair accessible. By fundraising money for beach wheelchairs and beach mats. Also worked hard for a Changing Places facility. And so much more.
Over the years I’ve done some public speaking at events and forums, worked closely with the city Council and have been to Parliament House. I have been invited to events and forums and won awards. I even have my own business. Is just the tip of the ice burg!
How has LGMD influenced you into becoming the person you are today?
Oh, it most definitely has influenced me! The things I do today are because of my LGMD. I don’t think I’d be the same person today if it wasn’t for this.
I’m a lot more patient, open minded and down to earth, understanding that everything doesn’t come without challenges. I appreciate the things that I can still do, like drawing or painting, knowing one day I may lose that ability too. But I will always have a strong mind. I may lose the ability do things physically, but I have a strong healthy mind and I’m going to use it to the day I die!
I guess I have always had a strong desire to help people. Knowing a little bit of help and go a long way. I’m getting into counseling, and maybe Art Therapy to help those in need.
What do you want the world to know about LGMD?
Well, that is easy. LGMD SUCKS!! Limb-girdle muscular dystrophy is a condition that causes muscle weakness. Your muscles waste away, you can’t gain or increase any strength. Your muscles just continue to deteriorate over time, which can make life extremely difficult. No amount of exercise or weightlifting will help me build muscle like your average Jo. It’s the kind of condition that will always get worse with time. There’s no cure, or drugs to help.
It makes life hard to live especially when places are not wheelchair accessible. It’s just one hurdle after another!
If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do?
I would hug my mum and my brothers. I lost the ability to hug years ago! I would also hop, skip, and jump! I think I would be lost. I wouldn’t even know where to begin, or what to do!