My name is Ken and I have had HSP probably all my life, wearing out the toes on school shoes and the front part of my tennis shoes obviously as a result of HSP. My father and his mother clearly had HSP but were never diagnosed and died without knowing the reason for their walking and other difficulties. The disease is hereditary within our family as I have three cousins with HSP.
I am retired and have lived in Brisbane all my life. However, while working I was lucky enough to travel extensively both for work and personally. Living with HSP has been a challenge needing to be careful not to stumble or fall when the front of my foot hits a rise in the footpath for instance. I have played tennis since I was 7 and still play although a bit slower. I have run Bridge to Brisbane, Gold Coast half marathons among others and while still able to run, I now avoid organised events for fear of being bumped and knocked off balance.
By way of background, I worked in the Finance industry where I met Helen and we have been married for almost 39 years. Fortunately, HSP did not stop me from working but in the last few years I needed to let my colleagues know about HSP so that they would not be concerned about my walking – don’t think anyone thought I was drunk and just hope a policeman never asks me to walk the straight line.
My progression with HSP has been slow perhaps due to the exercise I do and I am determined not to let HSP stop me from doing things. My weekly regime:
Monday – Walking/running the dog 5 to 7 kms, 30 minutes boxing at the gym followed by 2 hours of tennis
Tuesday – Walking the dog, 45 minutes at the gym
Wednesday – day of rest but may walk the dog over shorter distance
Thursday – 30 minutes of High Intensity Interval training at the gym, walking the dog
Friday – walking the dog.
Saturday and Sunday – a visit to the gym on either day depending on other commitments over the weekend
A mate, who still works, and I may play an hour of tennis 2 days a week depending on his commitments.
So how does Helen live with me and HSP. Helen says “I consider myself fortunate as Ken’s condition is not as severe as others and understand his desire to maintain his exercise regime – yes he has regular sessions but he will go to the gym or go for a run with the dog at other times. He plays 9 holes of golf with a mate once a month. I keep telling him to make sure he lifts his knees so he doesn’t fall. I am mindful of his HSP and the probability of the progressive worsening so we have a desire to travel while we can without him needing walking aids.
One thing we need to understand is the implications of the NDIS as Ken turns 65 next year and while he does not have a need at present, this may change so it is important to understand what we may need to do prior to his next birthday”.
Helen and I have attended a number of gatherings with other HSPers and value the opportunity to share experiences with others face to face. I encourage people in the HSP community to get together when the opportunity arises, even if only a small group or a one on one over a coffee, drink or meal.