Posted - February 2018 in Community Members

Greg and Suzie

I am living in Canberra with my husband Greg and dog Jesse. I was diagnosed with HSP SPG 7 in October 2016. I was living a really full life very involved with my children at their school in all their activities.


I was having spasms in my right side of my face, eye and throat in 1991 at the age of 33 yrs. I was diagnosed with generalized dystonia and ataxia. My mobility become impaired over a couple of decades and I wasn’t able to get a neurologist to correctly diagnose me.


I had genetic testing after 22 years of no answers to why I was struggling to walk and balance in 2016. I have two Sons Chris and Matthew 35yrs and 37yrs and so far they are showing no signs of HSP.


I spend my life helping others in many different ways. At the moment I am caring for my mother who is paralyzed and non verbal after two strokes. I also have great delight caring for my grandchildren Behati 4yrs, Leo 2yrs and Chelsea 6 months old. I couldn’t do any of this without the help of my supportive, loving husband Greg.


We enjoy Cruising as a way of total relaxation on a regular basis with the help of a scooter to help me get around the large Ships. I am living each day in the moment and believe in staying positive and having a grateful heart. I enjoy meeting other people living with HSP as it gives you a sense of belonging and understanding as I am able to get around some of the states in Australia.

Suzie and Greg… just cruising!

I find the Hereditary Spastic Paraplegia Australian Support Group on facebook very helpful with many of the members willing to share their strength and experience with the NDIS, Genetic testing, and methods of coping. I feel privileged to have met many members face to face at the state gatherings and I now call them my friends.  😛


Comments on this story

  1. Iveta posted at 9:00 pm on 29 July 2018Reply

    Hello Suzie, you seem to have a lot going on with looking after your mum and grandkids. My husband David has HSP. He too does the best he can every day. He still goes to work and tries to help around the house as much as he can. He uses a walking stick to help him get around. David is also waiting to hear if he is accepted to be a part of a Gnome Study in Perth WA which will hopefully shine more light on HSP. I think it is great that you had the chance to meet other people with the same illness. It helps to share your story and the knowledge and experiences with others. Thank you for sharing your story. Take care and keep on cruising!

    Kind regards Iveta

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