It doesn’t sound like a lot to ask. But for 30-year-old James Thiessen even his simple dreams seem out of reach. “I want to be able to play ball with my son longer than five or 10 minutes,” the Altona man said.
Diagnosed with the primary processive form of multiple sclerosis in early 2008, playing ball is not something he can do for longer than a few minutes at this point.
MS is an inflammatory disease of the central nervous system. In most cases people with MS will suffer a variety of symptoms, and will also have relapses or periods of time when they seem to recover.
However, the primary processive form, which about 10 per cent of MS patients have, does not have any recovery time. Instead it is a gradual progression of the disease. The best a patient can hope for are periods of leveling off of disease activity. A treatment called CCVSI or Liberation treatment founded by an Italian doctor is giving Thiessen hope.
Thiessen plans to go to Costa Rica in November for the treatment which opens up blocked or narrowing veins in the neck and upper chest. However, the treatment, which is not yet available in Canada, comes with a hefty price tag. James and his wife Loretta say they’ll need close to $18,000 for the trip.
James said the disease has progressed a lot since being diagnosed. In fact two years ago, he was wrestling larger truck tires into position at his job at a local tire shop. Now there are days when he can’t walk across the yard. He has no feeling in his fingers tips or hands, and is legally blind in one eye. “I can’t even walk to the end of the street,” he said.
It was the loss of eyesight that first brought him into the world of specialists who ended up diagnosing MS. James said it was shocking to receive the news. “I have the worst form of (MS),” he said. “I don’t have relapses (when) I get better.”
Realizing that life with his young family, (he has a three and a six-year-old son), was about to change dramatically wasn’t easy. “It took a long time to get my head around it,” he said. “I don’t like it but there’s nothing I can do about it.”
That’s why the trip to Costa Rica shows such promise. Many people have had great improvement from the procedure, and James is hoping for the same. In addition to improving his family life, he’d like to make a contribution. “I’d like to get back to work,” he said. “That is the main thing I miss, having a purpose to my day.” Even getting the feeling back in his fingers or being able to be on his feet longer would make a big difference.
Although the government has been slow to fund the Liberation treatment, James has broached the topic with his doctors, some who support it. He said the MS Society is dragging their feet when they should be promoting it. “Yes, there’s risks,” he admits. “I’m willing to take them.”
Both James and Loretta said their children have adjusted. “They’re very accepting and very understanding,” Loretta said.
Right now, the family is living on a tight budget. His wife Loretta works to put food on the table, while his disability covers the mortgage and medications.
That’s why financial help for the trip is necessary. Although they had originally planned to go to Poland for the treatment, Costa Rica became a more viable option. Not only was it more affordable, but he could get in more than a year before he could in Poland.
The treatment itself costs $13,000 which includes two weeks, time in hospital, a hotel, ground transportation and 12 days of rehab.
