Tuesday, September 10, 2013

Highlights of The Inland Northwest Hope for Parkinson's Conference, 2013 (Part three)

Holy Moly, here we are at post three on the Spokane Parkinson's conference, and we are only up to late morning! We have arrived at the third panelist of the "Making Your Medicines Work for You" segment, Physiotherapist Leo Norfleet, Dr. of Neuro-kinetics.  Norfleet has been working on a Parkinson's-targeted therapy program for the past twelve years.

"Hold on!" I hear you say,  "Therapy isn't medicine." But therapy is exercise. Exercise is a way to tap into the body's own pharmaceutical factory, producing "trophic" chemicals, cell growing substances in the brain. As for the panel topic, "Making Your Medications Work" Dr. Jay Alberts has shown vigorous exercise can improve symptoms 30% or more after a month of regular sessions.  Or as Norfleet put it "Exercise is essential, because it's about moving."

Moving well starts with good posture, described by Norfleet as "Ears over shoulders, shoulders over hips". When rising from a chair, rely on your strongest muscles, those in your legs, not those in your hands. Lean forward and push off using legs and toes. He also talked about pacing and endurance, noting that Parkinson's requires both fast and slow exercise. In addition, exercise should require full range of motion, and should aim for both strength and flexibility.
Working out when you are "on" will lead to better results and minimize your risk of injury.

Norfleet also had advice for care partners. Where possible, avoid pulling a person with PD. This leads to tug of war. He advises leading the person with Parkinson's with their hand on the care partner's shoulder. This fits with my experience. When troubled by freezing, I have been able to walk by following my wife and concentrating on stepping in her foot steps. This is a thought that leads neatly to the next speaker, Psychologist Jennifer Van Wey.

Dr. Van Wey, who specializes in geriatric psychology, spoke on "Finding a new path". Her fundamental idea is that psychologically, the person with Parkinson's and their  care partner need to be treated as a unit. One person may get Parkinson's, but the effects ripple through all they are involved with, their care partner most profoundly. So her talk was aimed at the "Unit". Complexity again.

The two who make up the unit may react differently to the news of diagnosis. One may be energized or relieved to have the trouble identified and categorized. The other may be frightened and feel helpless. She asserted that each person will deal with Parkinson's according to their nature, but that common feelings shape reactions to disease. People with Parkinson's do not want to be defined by their disease. Care partners did not sign up for their role (except in the broadest sense, where they have made marriage vows.) The different reactions can lead to friction. Partners need to set  the pattern for healthy coping skills early, as they form the template for behavior down the road.

Dr. Van Wey emphasized numerous times that the fundamental coping skill was honest talk, communication within the unit. The talk must in general be guided by reciprocity and respect of differences. And what is there to talk about? Plenty. Among the changes the unit faces in the patient over time will include slowness in movement, difficulty in speech, difficulty in grooming, changes in sexual desire and practices. Care partners will experience changes in the role they play in the relationship, reactions to the progression of disease in their partner, and fatigue from the extra responsibility. For the unit to adjust successfully, these things have to be made manifest to each partner through talk.

Advice for caregivers was to try to blend the new role with the old role as spouse. Both partners need to accept the "Bad" thoughts that may come. They are inevitable as thoughts, but not as outcomes. When things do go badly, look to the wider circle of care. Doctors, family and support groups are all  there to help.

Cues to seek help include two that demand attention. If your partner is not sleeping well, the unit is headed for trouble.  If your partner no longer does the things they formerly enjoyed, beware.

What to ask for when you need help. Consider changes in meds, working with a psychologist, taking part in research aimed at your particular problem.

That ends part three of this series. I hope to have part four up tomorrow.

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