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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… Continue reading Suzie

Hi, my name is Jacqui. I am married to an awesome cowboy. We have our own business, running livestock and selling meat in the Yarra Valley in Victoria. I am involved in the children’s school: on the Advisory Team, Parents and Friends committee, working in the tuckshop and the class rooms which I really enjoy.… Continue reading Jacqui

I had a full career as an able-bodied actor for over 20 years, performing in everything from classics to musicals, and TV shows including Prisoner, Blue Heelers, Big River, Pygmalion, Buddy and Hotel Sorrento. I also worked as the main promotional voice-over artist for the ABC in Melbourne and have directed festivals for Melbourne Fringe,… Continue reading Kate

Hi, I’m Tracy. I had a normal upbringing and school life in Melbourne’s outer eastern suburbs prior to the mature age onset of HSP, as mine was. As a young child and into my teenage  years, I enjoyed training for and playing Netball – a legacy which our two daughters have carried on. I was… Continue reading Tracy

Hi, my name is David. I grew up in Canberra. I have led a somewhat normal active life, but HSP has now very much slowed me down. When I was about 15 I had surgery on my right foot to treat a condition known as Pes Cavus. I didn’t understand at the time what it… Continue reading David

Hi there, I’m Sharon and have had HSP symptoms all my life, having many “medically guessed” diagnoses over the years such as Clicky Hips, Cerebral Palsy and Spina Bifida. Finally in my early 50’s, I got myself genetically tested and tested positive to the SPG3A gene. Mind you though, Spina Bifida was always easier to… Continue reading Sharon

Hi, I’m George, 48 years old and was diagnosed with Hereditary Spastic Paraparesis back in December of 2013. I have had back problems for the last ten years. Initially when i had back problems I used to get Spasticity in my lower back on most occasions that prevented me from going to work for a… Continue reading George

My name is Sharyn. I’m originally from NZ having arrived way back in 1979! It was always my intention to move back there but work, children, pets and life in general have seen me enjoy a lovely life in Sydney near Manly Beach.   Ironically, my 24 year old daughter, having always said that I… Continue reading Sharyn

Has anyone been to a speech pathologist?