Our newsletter, now named "NewsLink" has been published continuously since 1997. All available issues are published here. Browse through them using the links at the bottom of the page, or use the "search..." box above to find items of interest.
I joined the HSP Support Group a year or so ago and have greatly benefitted from email advice from Ian Bennett (who pointed me in the direction of FES stimulation, more about that later). I also benefitted from reading HSP Newslink which has given me important information about my condition and many inspiring stories by HSP sufferers to which I can strongly relate. So I thought my own experiences might similarly be of use to someone; here they are.
I never knew I had HSP till I was 50 (I'm 63 now). As a boy I was a good long-distance runner and a keen cyclist. When I was 15 I did a 1,000 miles cycle tour with a friend during the school holidays.
Article by Lindsay McCall from the United States Para-Equestrian Association with excerpts from Rebecca Hart.
“My parents were both amazing throughout my childhood,” recalled Rebecca Hart. “They never let me think of myself as a disabled kid. It was as simple as ‘Katie (my sister), Jordan (my brother), get on your coats, Becca get on your braces we are going to go.’ My parents never made it a big deal, it was just one more thing to do in preparation to leave.”
Born with Hereditary Spastic Paraplegia (HSP) in Pittsburgh, Pennsylvania, United States, Rebecca’s childhood mimicked most children’s. She participated in multiple sports including ballet and gymnastics, went to school, and she was always looking forward to trying something new. Rebecca noted, “As a small child I thought that I would grow out of HSP. Every time I tried a new sport or hobby I thought if I at least put on the uniform, I would dance or tumble like everyone else.” As Rebecca continued to mature she found a friend in her father Terry. “My dad has the same disease and it has been great to have an ally. He was always the most positive person growing up and he was able to relate to me like no one else could because he had gone through it too. He knew the challenges of having HSP as a kid and worked to reduce them. He understood the late night muscle cramps and the taunting that can happen at school. He taught me to be the bigger person and not allow the other children’s words to affect me. For the most part they didn't, but it could be exhausting to be at school and constantly have your disability pointed out to you and shoved in your face. Luckily my sister went to the same school. She is my best friend, mild-mannered and wickedly smart. She gave me tactics to handle those situations and in return she taught me confidence. My mom and dad taught me the importance of being proud to be an individual; they told me everyone can be "normal" it takes guts to be unique."
Her positive outlook and confident attitude were just two attributes that began to shape Rebecca into a future Paralympic athlete. Rebecca explained, “I was always a bit of a perfectionist. If I started a hobby or sport I didn't just want to be respectable or stand in the back row of the recital. I wanted center-stage and I wanted to be the best.”