The Next Best Thing

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

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.