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Living Well with HSP - Hereditary Spastic Parapernesis

By Helen Kienlen

Published by UNiversity of Illinois at Chicigo

While some would consider HSP - otherwise known as Hereditary Spastic Parapernesis - to be disabling, I will not allow it to stop me from accomplishing goals in my life.

The symptoms of HSP generally manifest through progressive loss of mobility and frequent falls, but I am determined that it will not rob me of my mobility. In the past few years, I have witnessed persons with HSP who have varying levels of mobility. Some find walking in the park to be a challenge, or daily tasks more and more difficult. Others are very afraid of engaging in tasks in which they may fall, or they succumb to depression, with an attitude of "I can't do anything!"

Yet a person with a mobility problem or HSP has to remember that he or she has many abilities, and that it is imperative to nurture and develop these abilities. For example, when I initially experienced symptoms of HSP in my adult years, I made the important change of committing myself to a daily exercise routine, and have found that I have been embraced by a new family at the gym. However busy I am, I have discovered how important it is that I make time for exercise.

Because of my new family at the gym, I have gained balance, strength, flexibility, and more generally, the ability to keep moving. I never wanted to exercise, mainly because I have been tired after work. But after many hours spent on exercise, I knew that I could never fully give it up. Though I have not encountered immediate benefits, such as an adrenaline rush, with time I have realized more energy, better balance, as well as looking and feeling better. I am convinced that everyone - and especially those with these diagnoses - should start an exercise or physical therapy regime a few times per week.

Despite one's challenges in life, living a vibrant and healthy life is possible with will and determination. Take one positive step forward to achieving that life this new year.

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