If you’re interested in digging beneath the surface of spasticity, you’ll want to visit a great website created by Paul Chapman, who lives on Vancouver Island.

In 2000, after spending 25 years working for IBM, Paul and his wife were living their retirement dream, sailing part-time in the Bahamas. But that year Paul started to have symptoms that had his doctors initially believing he had MS. As it turned out, what he actually had was a rare malformed blood vessel which caused inflammation and demyelination in his spinal cord below C6. The blood vessel was repaired by surgery, but the spinal cord injury left him with partial paralysis of his legs.

After spending more than four months in various hospitals, Paul returned home and continued his rehabilitation through home exercise and visits from a physiotherapist. By early 2001, he was able to walk about 10 feet without assistance, but not without considerable pain from a badly cramped hip muscle. And just as he regained the ability to walk, spasticity became an issue, greatly affecting Paul’s leg muscles and balance as well as resulting in spasms.

Answers were elusive, and it soon became frustratingly clear to him that resolving his spasticity was far from a simple process. A graduate of the nuclear physics program at the University of Toronto’s Engineering School, Paul decided to dust off his research skills, beginning a long process of investigating spasticity.

“I had, and continue to have, excellent care from my doctors and physiotherapists,” says Paul. “But I found that the information I got from all available sources was sketchy, inconsistent, non-definitive and somewhat speculative in many cases. I wasn't satisfied that I was getting sufficient coordination of treatments to overcome this complex condition. I’m stubborn and I don't give up easily when something is getting me down.”

Slowly but surely, Paul worked to control his spasticity, experimenting with different drugs, exercises, massage and other therapies, aids, chairs, and beds. Today, Paul’s spasms are gone, and although he’s still somewhat restricted by excessive tone in his muscles, his ability to walk has improved to the point that he can now manage about half a mile with a cane and his wife at his side. Everything he’s learned in the process is now available online.

“My website is a compilation of information I collected since I found out in 2001 what spasticity was,” says Paul. “From the beginning, I began to put together a picture of how spasticity is caused by the SCI. This I call ‘The Spasticity Model’. When I understood what causes the various symptoms, I was able to understand possible treatments for them. I started out simply trying to understand how to stop my worsening spasticity. But after I formulated the model, I started to put the information into the computer and organize it to make sense. Later, I realized that it could be useful to others. Organizing the data that I collected and putting it into the computer came as second nature to me because of my IBM experience. Learning how to put it into a website was then fairly straight forward.”

There is a wealth of information at Paul’s website, from graphic depictions of The Spasticity Model to descriptions of his exercise and stretching regimes, and other therapies for specific symptoms. “I’ve benefitted from building the website because it’s forced me to think through my treatment program, especially my exercises,” says Paul. “It also gave me something useful to do. I hope to get a lot of feedback which I can use to improve the site. I’m hoping also to offer it to the MS Society, since my condition is very similar to the demyelination that occurs with MS. I may make it more generally available after that if it proves useful to people. If I can help one other person, it will be well worth the effort.”

Don’t expect Paul’s website to remain static. He remains highly motivated to keep making progress and solving his remaining problems with excessive muscle tone. And he’s optimistic that new drugs, such as Famprydine SR currently undergoing clinical testing by Acorda Therapeutics, will also help him and others. As developments take place, Paul will post them on his website.

Visit http://members.shaw.ca/spasticity/ for more information.