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Saying I love you on Valentine’s Day … with a spinal tap

Parkinson’s disease study at OHSU includes husband-and-wife teams committed to finding a cure

Nothing says Happy Valentine's Day like a spinal tap.

Note to editors: Several of the Portland-area and Oregon couples participating in the study are available for interviews.

At least that's the view of Glen and Kris Hostetter, who are among several couples that are part of a special five-year study on Parkinson's disease at Oregon Health & Science University.

The study, called the Parkinson’s Progression Markers Initiative, is funded and being led by The Michael J. Fox Foundation. It is being conducted at 24 of the top Parkinson’s research centers in the United States, Europe and Australia. The study's goal is to find "biomarkers" of Parkinson's disease — which someday may lead to identifying the disease earlier in people, tracking its progression and ultimately finding better treatments or a cure for the disease.

To do its work, the study needs participation from people in the early stages of Parkinson's disease. Males over 55 and females over 65 without Parkinson's disease are also needed to serve as healthy “controls” for researchers to study.

And at OHSU, several of the people who are participating are husband-and-wife teams.

It's not a small commitment.

The study requires participants to undergo various clinical and cognitive tests and provide periodic samples of blood, urine and spinal fluid.

That's what Glen and Kris Hostetter, of Vancouver, Wa., were doing on Valentine's Day 2012 — getting their spinal taps to provide spinal fluid for the study.

Like other healthy spouses in the study, Kris Hostetter said it was an easy decision for her to participate.

"My feeling was I couldn't do anything to stop Parkinson's," she said. "But if I could do something to help future people affected by Parkinson's, that was kind of my calling."

Kris added that she isn't frightened of needles and the spinal tap only causes "slight discomfort." After her husband was diagnosed with Parkinson's — in October 2010 — the important thing was to support him in whatever way she could.

"I really don't want Glen to go through this by himself," she said. "If I can do something for him, I will."

Dr. Penny Hogarth, M.D., is the principal investigator at OHSU's Parkinson Center of Oregon for the study. The Parkinson Center of Oregon is part of the OHSU Brain Institute.

At first, she wondered how difficult it would be to find people to enroll in the study. Recruiting people for clinical studies is always challenging. This study tests no possible treatments for Parkinson's; it is only trying to learn more about possible biomarkers.

Hogarth especially worried how difficult it might be to find people who would be "healthy controls" for the study.

"We thought it was going to be quite hard to recruit healthy controls," Hogarth said. "It hasn't been nearly as hard as we thought."

Four of the people who are participating as healthy controls in the study are spouses of people with Parkinson's who are also participating, Hogarth said. In addition, one couple is participating in which both partners are healthy controls.

"The biggest motivator for healthy controls to participate is if they know somebody, they care for somebody," Hogarth said. "And the fact that we are talking to people at the very beginning of their diagnosis is when their motivation – and that of their immediate family — is highest to do whatever they can for future research.

"The common thing people say is: ‘Being told that I have this disease, or that my spouse has this disease, makes me feel a loss of control. And participation in this research makes me feel I'm wresting control back from the disease. And I wanted to do something to show support for my partner.’ It's a way of expressing love and support at a time that is often particularly challenging for people — when they just have been diagnosed with Parkinson's disease."

The Parkinson’s progression markers study began at OHSU in 2010. It will continue at least through 2015, although data from the study are already being analyzed.

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