by Oliver Groom
about the author:
Oli Groom is 31 years old with Duchenne Muscular Dystrophy. He lives independently in New Zealand, loves music and his cats, too. He can be reached at Oli.Groom@FamilyFriendsAndDuchenne.org
The Next Best Thing
My name is Oliver, I am 31 and I have Duchenne. I was born in 1992 and I currently live in Kerikeri, which is a small town in the far north of New Zealand. I enjoy life here and it is great for me because my family and support network are nearby.
I was diagnosed at 5yrs old with Duchenne muscular dystrophy (DMD) after many blood tests and exams. It took a long time to get diagnosed because doctors didn’t take Mum seriously, thinking she was a hypochondriac.
I lost the ability to walk at 9 and started to use a power chair from then. The wheelchair was a positive thing for the most part because I was falling over every day and could not walk far.
School was fairly easy until I needed a teacher’s aid/carer. Then I started to get ignored or avoided by other students and even some friends.
At high school, it got worse because l had to spend some time in the special education/ learning enrichment center – e.g. for physio, lunch or the toilet (which was the only one I could access).
At the time I was the only student that had a purely physical disability. Compounding the situation was the fact that people treat wheelchair users like we are stupid or not worthy of respect. This meant I was lonely, had very few friends my age and never really felt part of my peer group.
I finished high school with NCEA level 3 in 2009.
After school, I did intend to study music production, however the degree I wanted would require me to relocate to Auckland. We thought it was possible, but moving was not practical due to the lack of funding for my care.
So I continued working on my self-taught music production skills, eventually releasing an album in 2013. I have always been interested in psychology, so I studied mental health and addictions in 2016 obtaining a certificate.
I had always wanted to live independently of my parents, but making that happen was a long and difficult process.
In my situation now, it actually works because I have the use of a family trust house with low rent and the support of my best friend Nicole. She is a nurse and has been my primary caregiver for 10+ years. She has done many hours of voluntary care helping when no one else would make up for the deficit in the funding for care.
Without these fortunate circumstances, I would be in residential care and the nearest suitable facility is a 4hr drive away from family and friends (and my cat).
I have personal experience with employing and managing carers, living independently, traveling with a disability, dealing with hospital appointments and life with DMD.
I would like to make use of my life experiences to give perspective and advice to other people in a similar situation.
Duchenne is currently incurable but knowledge is the next best thing.
