Hello, I’m Margaret. My husband, Brendon, who has had HSP since about 2002, and I joined the HSP Research Foundation not long after it went online.
I grew up in a small village in New Zealand, attended high school in the nearby city, obtained a degree at Victoria University (Wellington) and taught secondary school Mathematics for a few years.
Brendon and I moved to Australia with our young son when we were in our twenties. We had no inkling of a condition like HSP until Brendon started developing issues with his walking when he was in his early fifties. Eventually HSP was diagnosed. Older members of his family, on both sides, could not remember anyone with any similar problems and we have had to come to the conclusion that his HSP is a “sporadic” occurrence. We are grateful that our son shows none of the signs that, we can, with hindsight, now recognise were there for some time in Brendon before diagnosis.
Initially HSP didn’t affect our life very much at all and in 2008 we were still able to travel to France with little difficulty. But by 2014 we were having so much trouble getting around together I asked Brendon to get a walker and he discovered his fear that people would “look” at him was totally unfounded. By 2016 he had acquired a small electric scooter and our world changed. Visits to Bunnings were now a breeze! In due course we also bought a more robust scooter that Brendon uses to get around our block. This carries everything from boxes of weeds to building materials to the grocery bags, and took such a beating we needed to replace it after 18 months! It was very useful as Brendon designed, sourced materials and labour and project managed the building of my vegetable enclosure.
HSP has had a significant impact on our life together. We have to change our expectations of what we can do. In spite of the many changes we have made to our home I am not sure that we will be able to stay here for ever, as I would hope to do. I have had to learn patience – I cannot rock up to a train station 2 minutes before the train is due. Getting a disabled person and his scooter on to a train takes a tad longer!
Brendon’s attitude to his HSP is very important in our life. He always focuses on what he CAN do, not what he can’t do and as his HSP continues to worsen, and my energy and strength are diminishing as well, we will both need to draw on his positivity.