Hello, I was born in Taipei, Taiwan.  I first discovered I had a problem back in the 1980’s when I owned a small chain of restaurants.  My first venture into entrepreneurship, after receiving couple of Graduated Business Degrees from Canada’s McGill University. My first problem was with my arms.  I would be carrying something and suddenly my arms just lost their strength.  There were more subtle hints of the problem because being a certified ski instructor with the Canadian Ski Instructors’ Alliance, I skied and taught almost every weekend during the ski season.  

I was a proficient professional skier, but there were conditions I had great difficulties with, such as powder and spring slush. I was great on hard pack icy condition, which was quite common out East, but in the occasional powder and spring slush, my leg muscles just did not live up to expectations.

In 1985, I sold my restaurant business and moved to Asia.  In 1987, during my routine medical check in Hong Kong, my Physician noticed a distinctive fasciculation and an alarmingly high CPK.  Later he told me, with the high CPK, he was worried that I had a "silent" heart attack, but from the shape of my body, he suspected some sort of atrophy of my muscles. By chance, he referred me to a neurologist that he had met recently.

The neurologist took an EMG and ordered a biopsy and concluded that I had Spinal Muscular Atrophy, and suggested that I consult with McGill’s own neurological center, when I return to Canada.  It was during this time, my brother George commented that whatever complaints I raised; he was experiencing the same.

I did visit 2 neurological centers in Montreal and after batteries of tests, I was still waiting for their official opinion. Fortunate for me, ALS was never mentioned as a possibility, probably because a couple of years had passed from my first visit to the neurologist in Hong Kong to my subsequent visits in Canada and I was still skiing. I am sure I was the only person living in Asia, with a season pass in Bromont Ski Center in Quebec, Canada.

In the meantime, George and his wife, Susan, partners with the Houston law firm, Fulbright & Joworski, led to a chance meeting with a Dr. Yasu, a known Neurologist based in Houston. Through Dr. Yasu, George met with a battery of Neurologists and finally, Kennedy disease was confirmed -- including an honored meeting with Dr. Kennedy himself in Minnesota. By association, I diagnosed myself as having Kennedy disease as well, even though I never underwent DNA testing.

In 1991, I fell in love with the climate of Southern California and bought a duplex in L.A. County for investment purpose. I knew from my brother, we had to prepare ourselves, as the disease progressively wore us down.

I knew the cold Canadian climate was out and so was the hot, damp Southern Asian climate. Also, a career change was in order. I had to seek something other than structured line management, which meant I had to concentrate more on being an independent contractor, working in several areas where I have some expertise. These happened to be in Real Estate, Appraisal of Businesses and Consulting of officers/owners of companies.

I now live in one of the small duplexes that started out as an investment. It is very small and compact but everything foreseeable is done to help me cope with my handicap. For example, I have no elevation within my house, even in my yard nothing that is over ½ inch in height. Even my bathroom is planned for with a raised toilet and shower with grips, etc. to help me with my daily living.

With God’s will and support from friends, family, including my clients, I live a very full and active life, in spite of my frequent falls, but luckily no broken bones to date. To get around, I rely on an ultra light electric mobility unit. (If you'd like to find out more about this unit, please go to the KDA site home page and click on the scooter picture!  The company that distributes them is giving the Kennedy's Disease Association $100.00 for each one purchased when the person was referred from this site.)  

I would love to hear from any one and promise to join the biweekly chat on a regular basis.

E-mail Paul Liu: beesofreepaul@aol.com