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.
I was diagnosed with HSP several years ago. I see a specialist once every 6 weeks as well as a physiotherapist who specialises in neurology. I keep to a regular exercise plan of riding an exercise bike as well at stretches and toning exercises. A believe a positive attitude and active lifestyle will stop its progression. I also have a horse which I ride approx. fortnightly or when I can as now juggling family life. But have had my own horse since I was 8 years old, and now realising it is a great exercise for your core (great for HSP).
I was sick with the Flu last year and therefore was very lethargic and very inactive for four weeks. I found myself very stiff and walked very very slowly, which showed me that regular exercise is so important. I find it very hard in the colder months and when I am tired as I suffer from leg cramps, stiffness, and a very uncomfortable sensation of pain shooting up my legs (particular my left) from the arch in my foot to my hip. This happens most nights. I find taking Magnesium supplement daily helps with good night sleep.
Both my children are a wonderful help, always helping carry things, helping me out of the car, helping around the house. I am very grateful of such wonderful friends and family.
Hi Jacqui so lovely to have met you and yes you are a very positive person. I must find out what magnesium you take. How wonderful that you can do your horse riding, have a lovely time on your holiday.
Jacqui I have had HSP for 26 years. I started riding the exercise bike and also swimming. That seemed to keep things under control. I did that for 16 years and worked as a plumber. I had to retire 10 years ago – trying to balance myself I could not do. I was lucky I was working in a workshop prefabricating water meters for multi story buildings I did not have to walk very far. Going back a few years I had trouble sleeping, my legs were giving a lot of trouble, I was awake till 2 and 3. I had been taking Baclofen 25mg, 2 a day, Lyrica 150, 2 a day, Magnesium +D3 Total Calcium a spoon of coconut oil. The legs, I don’t have any problem sleeping now, since stopping work sitting around I was still riding the bike but now I find it awkward getting on, but you have to keep at it. cheers
Hi Jacques.
You sound like you are doing amazing. I was diagnosed with HSP about 18 years ago and still trying to find answers of what to do exercise wise etc.
Hello Jacqui, I come from Suzhou city China. I am a patient with HSP. I am very depressed by walking, and it brings pessimism to my family. Nice to see you living so healthy.
Yes Jacqui – you are an amazing young woman, juggling a family with everything else you do
And what most of you would not know is that Jacqui also suffers from MS – as her father all I ever want to do is fix this disease – sadly I am unable to do that at present – however she is a role model and inspiration for me in how she deals with her daily challenges – she never stops smiling and always has a very positive attitude