Ryan’s Life: A Clinical Trial

With Sue and I both sick last week we worried Ryan would catch it from us. I’m happy to say that this didn’t happen! Our precautions, with disinfecting, sanitizing, and everyone wearing breathing masks worked. It was awful to go through this process but at least we have confidence it works. 

Aside from a lingering dry cough, I’m completely better.  Unfortunately Sue developed a sinus infection (non-contagious) secondarily. She began a course of antibiotics yesterday to hopefully knock it out. I hope they begin making her feel better quickly so she will be comfortable over the weekend.

I began to think about the last time Ryan was really sick with an infection. It was over the holidays in December 2010 when hospitalized for pneumonia for almost two weeks. It’s more than remarkable, given his condition, that he has gone over two years — two years and two months, to be exact — without a serious infection. He has worked so hard to stay healthy.

That’s not to say he hasn’t had a go of it with urinary tract infections (UTI) during that time. He has. The good news is we seem to have figured out the formula of drugs and therapies to greatly reduce, and hopefully eliminate, the frequency of occurance. At least it seems that way. He hasn’t had a UTI in over four months now.

The next area I want to pour myself into correcting is his slow, yet progressive, loss of bone density. There are drugs that are proven to help by not only maintaining bone health, but actually increasing it. This is always an option and I’ll keep it in mind. Optimally though, I’d like to do this through physical therapy and keep the medications to a minimum.

The RT-300 FES Cycle has done much to reduce the demise. All the while providing health benefits in other areas; like cardiovascular health. The work he does on it has probably helped more than anything else he does. It’s an important part of his overall well-being and is a mainstay in his therapy regime. Funny, this therapy is considered “experimental” an remains in clinical trial, but to me it is legitimate. The result speaks for itself.

And really, isn’t Ryan’s recovery the epitome of an experimental clinical trial?

So the next thing on the therapeutic horizon that I want to incorporate goes by many names; dynamic acceleration, whole-body vibration therapy, and dynamic motion training are the most common. I learned about this from the Osteopathy Doctor at Children’s Hospital. This technology has existed for over fifty years. It was most notably advance by the Russian Space program and later refined by NASA to combat bone density loss in outer space (zero gravity). Every space shuttle mission since the mid-1990’s has used it during (to extend the mission) and after their flights. Olympic athletes, ballet dancers, and NFL teams, like the Denver Broncos, are using it because the benefit extends beyond just increasing bone mass, even down to the hormonal level.

It is a simple, yet expensive, mechanical therapy that has now found its way into the scientific community. As basic as it sounds, based on Newton’s Second Law of Motion (Force = Mass x Acceleration), it is actually quite complex because it relies on precise frequencies (Hertz or Hz, which is cycles per second) and amplitude. There is an ever-growing body of research from highly reputable sources that shows it works, and not just for bone density. It works for many systems in the body!

The short answer is, Ryan can greatly benefit from this technology.

Pending approval from Ryan’s Special Needs Trust Fund, I’ll make the purchase with the hopes that the trust is fully replenished through personal donations and fundraising events. I’ll set it up as a targeted fundraiser, then track the progress on this website for all to see. This seems the way to go and everyone tells me they appreciate knowing the progress toward a goal.

In an upcoming post I’ll share my research with you, but I’m still gathering information. Yes, I’m going to do it, but I need to take the time and gain the knowledge to do it in a way that benefits Ryan the most. Adequate is not good enough! Every drop of efficiency and effectiveness must be exploited to do it right. I also want to show you that I do my homework when your donations are given for Ryan’s care and treatment.