Extraordinary people

An update: Jackie Christensen and Evan Balasuriya keep reaching, achieving, pushing

 

 

Kingfield author takes her plight with Parkinsons to another level

Jackie Christensen keeps pushing forward and she keeps pushing back. She keeps pushing forward into a future filled with her husband and two sons, and back against the Parkinson’s disease that continues to erode her ability to live life as she would like to.

Kingfield’s Christensen first appeared in the pages of the Southwest Journal in March of last year, talking of her belief that her Parkinson’s might have been triggered by exposure to harmful pesticides and toxic industrial waste. At the time, she was working hard to finish a book about what it’s like to deal with PD (Parkinson’s disease) in the first year after diagnosis.

Today, “The First Year – Parkinson’s Disease: An Essential Guide for the Newly Diagnosed” is on sale in stores around the country.

“I tried to write it as if I were talking to somebody about my own experience and have it be very conversational and informal,” she said. “Relating to each other as peers.”

PD is a slowly progressive disorder affecting movement, muscle control and balance. It causes stiffness in muscles, slowness, tremors and difficulties when initiating movements, among other things. The disease is chronic, meaning it persists over a long time, and progressive, meaning symptoms worsen over time. Christensen has early-onset PD, the less common form.

Secrets and pride

Christensen says her book is written so that people who have early-onset PD, as she does, as well as those who have the more common late-onset version, can get help in understanding some of the issues they’ll confront in that first year after diagnosis.

“The time construct is sort of artificially superimposed on top of it,” she said. “People will have had Parkinson’s for a long time before they get diagnosed.”

She experienced symptoms for a year and a half before being diagnosed with early-onset PD, a form of the neurological disease thought to be genetic.

Christensen says one of the biggest decisions the newly diagnosed face is “who to tell and how to tell someone, especially since a lot of people when they’re first diagnosed may not have real noticeable symptoms. If you have a tremor, it’s harder to get by with not telling.”

She said one reason people try to keep their diagnosis a secret is because “if you have a job, some employers do use either the symptoms or the perceived symptoms of a disease as an excuse to get rid of somebody. Which is unfortunate, but I personally know a number of people who’ve been through that. Mostly it’s pride, I think, and not wanting people to feel sorry for you.”

Taking the fight to another level

Christensen’s own battle with PD takes a new turn on Jan. 17, when she undergoes a deep brain stimulation operation in Cleveland, Ohio. The operation

According to the Web site for the National Institute for Neurological Disorders and Stroke, “Deep brain stimulation (DBS) is a surgical procedure used to treat a variety of disabling neurological symptoms – most commonly the debilitating symptoms of Parkinson’s disease (PD), such as tremors, rigidity, stiffness, slowed movement and walking problems. The procedure is also used to treat essential tremor, a common neurological movement disorder. At present, the procedure is used only for patients whose symptoms cannot be adequately controlled with medications.

“DBS uses a surgically implanted, battery-operated medical device called a neurostimulator – similar to a heart pacemaker and approximately the size of a stopwatch – to deliver electrical stimulation to targeted areas in the brain that control movement, blocking the abnormal nerve signals that cause tremor and PD symptoms.”

Said Christensen, “I have sworn I would never do it [have DBS], just because it creeped me out so much. I know that there are no nerves in my brain, but the notion of having to be awake while somebody’s poking wires in my head, it just creeped me out.”

She said that though she has some concerns about some of the potential side effects of the operation, including increased speech difficulties and compulsive behaviors, she’s willing to go ahead.

Seeking relief

“I’m taking essentially toxic levels of medication, and if it was working at that level it might be one thing, but it’s not really working any more,” she said.

If the DBS is a success, she might be able to reduce her medication and her symptoms might well be diminished. She said that data providing odds of obtaining relief following the surgery is skimpy and often comes from those who are trying to convince people to have the operation (such as those who make the brain implants).

“I have a friend in a support group who had this surgery several years ago and had, I think, nine operations that first year because of infections and other problems, but he’s glad he did it. He considers that a success. I wouldn’t consider that an unqualified success,” she said with a bit of a laugh.

“Having even some relief from the dyskinesia and the rigidity, for me, would definitely be a good thing. Being able to potentially cut down on my medication would be a good thing.”

According to the American Heritage Dictionary of the English Language, dyskinesia is “an impairment in the ability to control movements, characterized by spasmodic or repetitive motions or lack of coordination.”

“There’s no guarantees, and it’s certainly not a cure,” said Christensen, “but I figure if it can buy some time until something better comes along and allow me to participate in my sons’ lives while they’re still kids, it’s worth the risk. ”

 

Uptown man plans seventh tsunami relief trip to Sri Lanka

 

He’s here, he’s there, Evan Balasuriya appears to be everywhere. Sometimes he’s in Uptown, where he operated the Sri Lanka Curry House for nearly 25 years, raising funds to return to his native land. Sometimes he’s back in Sri Lanka, where a tsunami rose up from the Indian Ocean and destroyed thousands of lives on Dec. 26, 2004.

Balasuriya has been back to his native country six times since the deadly wall of water took 216,000 lives worldwide, most of which were claimed in India and Sri Lanka. He grew up in southern Sri Lanka, the son of a government doctor.

When we first covered Balasuriya’s story (“Wave of Relief,” January 19, 2005), he was preparing for his first visit there to help tsunami victims.

“You are helpless so far away,” he said then. “You see everywhere you grew up, people are dead. You are mad because you’re helpless. So then you’re sad because you can’t do anything. Then I decided I’m going to do something about it.”

Indeed.

There and back again Š and again

In his half-dozen trips, he and the 113 volunteers he has taken with him have built 54 homes in the village of Veevara (population 400). They’ve served over 10,000 meals, built a community center and shower stalls, as well as repaired a handful of homes that survived the tsunami.

When the energetic 63-year-old talks about how much he has accomplished so far, it can almost appear that the end of his mission is in sight.

“I have 11 more homes to build. Then I’m done with the whole village,” he said. “Eleven more homes to build and about 20 homes that just need some repair work, and we shall need to paint the homes.”

He needs to raise about $83,000, he said, so that he and a handful of volunteers can return to Sri Lanka to do the work.

Certainly not something that can be done in a weekend, but it appears to be doable. But then he ups the ante.

“My goal was to somehow finish the project by the first anniversary, which is December 26, but that’s very, very difficult,” he said. “But that was my dream.”

Though he acknowledges that he’s not likely to realize that portion of his dream, he quickly adds that finishing up the rebuilding of Veevara is only one of his dreams.

Sweet dreams and hard realities

“There’s so much work to be done,” he said. We went down south about four weeks ago; there are so many villages that need to be done. In fact, the village right next to my village is a huge village; my goal is to go work [there].”

That village of a thousand people will take more than a million dollars to rebuild and repair, he said.

“It’s totally devastated,” he added.

First, however, he needs to finish up Veevara by building 11 more concrete-block homes; each costing about $3,000 a piece. By American standards, that’s an astoundingly small amount of money. But he says he can build a 500-800-square.-foot home, with a living room, two bedrooms and a kitchen with the money.

There are several drawbacks to the homes: most don’t have running water or electricity, and they all have asbestos sheet roofs.

“We talked to construction guys and they said [the asbestos] is safe if you don’t tear it so that there’s dust,” he said. “We were worried about the kids, but they said it’s safe.”

He said part of the $83,000 (of which only $2,000 has been raised thus far) would be used to provide each house in Veevara with an electric fan to help ward off bothersome flies.

“I feel so bad for the children,” he said. “We got rid of some flies by moving the garbage, but they keep coming.”

Long-term dream

Eventually, Balasuriya wants to get a small café going in Uptown, next to the Uptown Theater, where the food of his homeland can be served up to take-out customers.

“I wouldn’t be working there, but I can get some cooks I can get from Sri Lanka, and do a little take-out place and get that place to raise more funds,” he said. “When people come to take out food, they can drop off a dollar or two.”

That might sound like a far-fetched dream from someone else, but coming from Balasuriya, who will be making his seventh trip to Sri Lanka in a matter of days, it sounds realistic.

He said he believes he will finish the Veevara project by Jan. 29: the anniversary of his first trip back to Sri Lanka after the tsunami.

There’s no stopping now, he said. There’s so much work and so little of it being done by the local government.

“Hardly any work is being done because of government infighting,” he said. “It’s the usual. I mean, there’s no work [being done].”

None, perhaps, until he returns.