Hi there, my name is Merron, I’m 55, and now live at Encounter Bay with my husband (Jeff) and daughter (Kerry), a beach side town south of Adelaide. We made a decision to sell up and retire here a few months ago, to give ourselves a change in life style. My diagnosis of HSP was made approximately 12 years ago. Initially it took some convincing for me to see a doctor but thought I should after a number of people asked me if I had a sore leg because I seemed to be limping.
The eventual diagnosis for me ‘opened a can of worms’ so to speak, as our daughter is severely physically disabled and, aged 22 at the time, had had a series of potential diagnoses. Now there was some explanation as to what was happening to her as well, even though her physical condition is much worse than mine.
I walk slowly and carefully, so as not to trip when out and about, support with a shopping trolley is useful, pushing Kerry in her wheelchair helps, and holding onto my husband’s arm also works. We both see a neuro physio a couple of times a year to keep up to date with stretching and exercise.
I have no other family members with HSP, and have been through genetic testing of the 4 most common genes but was unsuccessful in finding any answers.
We enjoy catching up with our son Ben and his wife Carli and our grandies Bailey and Andie. Since moving to Encounter Bay we have friends and family come to visit and stay over. My husband enjoys lawn bowls and more recently we have bought kayaks so we can exercise, in the great outdoors together. A lot of our time is spent caring for our daughter and giving her the best quality of life we can offer and balancing time for ourselves, with the help of other care workers.
Since joining the HSP community, I have found it provides a great source of information and it has put me in contact with other people who share similar experiences as myself. Whilst I try to maintain a positive attitude, I find that some days it just doesn’t happen. I then remind myself that we all have good and bad days and that tomorrow will definitely be a better one.
We have been with u all the way babe, and will continue to do so. We will always be here for whenever you may need us.
All our love Sooz and Grayz
I too am 55. I was diagnosed at age 16. I have an older sister who is also affected. I can no longer stand alone (for more that a few seconds) or walk without assistance. I use crutches but for the past year rely mostly on a wheelchair……as does my sister. It is extremely frustrating but I have a wonderful husband and three children who are loving and supporting. None of my children or four grandchildren are affected nor is my sister’s daughter, her four children and two grandchildren. We are from a family of seven children and have 33 cousins and there’s nobody but us two who have HSP. I live on the Darling Downs in Queensland.
Hi Merron, Thanks for sharing.
I’m new to the HSP thing but have other relatives diagnosed & have good support. I was wondering where you were diagnosed & which Neurophysio you see as I live in the Southern SA too & professionals who understand HSP aren’t exactly easy to find!
Appreciate your sharing Merron and looking forward to meeting you all at the HSP Adelaide Gathering this January. Your story has encouraged me to get back into see a Neuro Physio ASAP! Thanks Suzie 😛