Pausing Parkinson's: Movement may help slow disease

Copied from The Northwest Parkinson’s Foundation Weekly News Update

Symposium will discuss exercise, stress reduction
Candace Chase

Daily Inter - Joe Jackson, brother of famed basketball coach Phil Jackson, grew up in an active family. He remains active even now, as he lives with Parkinson’s disease, a chronic and progressive movement disorder.

“My physicians say it’s going very slow; I’m lucky that way,” said Jackson, 70. “I try to exercise frequently. The one thing that’s correlated with slowing it down is exercise.”

Jackson, a clinical psychologist and former Flathead Valley resident, kicks off “Moving Together with Parkinson’s” at a two-day event that starts Friday at 9 a.m. at the Red Lion Hotel Kalispell. It continues Saturday with another full slate of speakers selected to educate, encourage and inspire patients, caregivers and medical providers.

Lois Wagner, one of the organizers, said Parkinson’s statistics remain unclear due to the difficulty of diagnosis. The disease includes many manifestations, including tremors, slowness of movement, rigidity, impaired balance and coordination.

The cause remains unknown but involves the malfunction and death of vital nerve cells in the brain. Symptoms range from mild to severe, with onset usually after age 60 — although some younger people, such as actor Michael J. Fox, also develop Parkinson’s.

“In our support group, we have the full range of ages and abilities and disabilities and the effects of the illness,” Wagner said. “We have people in wheelchairs, and we have people who have just come from work.”

Wagner, a nurse whose father had the disease, organized a Parkinson’s support group with her friend Inga Myers, a Parkinson’s patient. The group meets at The Summit at 3 p.m. on the second Wednesday of each month.

The upcoming symposium represents the first large gathering of experts initiated here by this support group. The group worked in partnership with the American Parkinson’s Disease Association and The Summit.

The symposium will feature Dr. Susie Ro, a neurologist movement specialist, as well as specialists in daily living problems, physical therapy, art and music therapy, massage and more.

Beginning at 9 a.m. Friday, Jackson will open the symposium with a three-hour session on mindfulness-based stress reduction. He developed his stress-reduction program based on meditative techniques for mindfulness popularized by Jon Kabat-Zinn.

“Because most stress comes from worry about the future or worry about the past, we need to learn to live in the moment,” he said.

Now a resident of Charlottesville, Va., Jackson taught stress reduction in Virginia for about eight years, including working with the University of Virginia football team. A former valley resident, he and his wife still maintain a summer home in Rollins.

Jackson has a history in this area that began with his family’s cabin on the Middle Fork of the Flathead River near Hungry Horse.

“It was a stable part of my childhood,” he said.

Jackson earned a doctorate psychology from the University of Texas and has extensive clinical practice as well as university teaching experience. His children were born in the Flathead Valley, where he practiced for 10 years.

He was diagnosed about three years ago with a form of Parkinson’s that does not involve noticeable tremors. He said people might notice that he has stiffness or rigidity.

“It’s one of those diseases — as everyone who has had it knows — that starts years before it’s diagnosed,” he said.

“Little things started to change. Like I thought I had more saliva than I thought I should. My writing was starting to get cramped, and my voice was starting to get a little hoarse. I had no objective reasons for that.”

Like many patients, Jackson researched his symptoms on the Internet and found they correlated to Parkinson’s. His general practitioner confirmed the diagnosis.

Although his disease has progressed very slowly, he monitors changes while continuing the active lifestyle that has always defined his life.

“My brother is Phil Jackson, so we’re a sports family. Sports was just part of our life, so I was active and still am,” he said.

“I’m a little stiffer than I used to be, but I’m not sure if that’s age or Parkinson’s.”

Jackson points out that it’s called a dis-ease, which speaks to the discomfort inflicted on the patient as well as the family. He found mindfulness techniques helped with the stress of dealing with a chronic disease like Parkinson’s.

“Maybe it slows down Parkinson’s a little,” he said. “I felt like if people had some techniques and methods, at least they could use those to ease the stress. This is the first class I’ve taught for Parkinson’s patients.”

Jackson teaches body scanning, yoga poses and meditative focusing on the breath. These techniques train people to focus more effectively in the present moment and stay there.

“They’re going to get a three-hour program where they get a chance to experience coaching and being mindful under different conditions,” he said. “If they want to continue it, we’ll give them resources to do that.”

Meditation and mindfulness practice have given Jackson an inner serenity, although he said he still occasionally feels self-consciousness fumbling for his wallet in front of a long line at the grocery store.

“But I’m not focused on what will happen in two years or what will happen in three years,” he said. “It’s helped me not be too nervous. I meditate daily, and I do stretching exercises to stay focused.”

Along with Jackson’s stress reduction session, the Friday symposium features Ro speaking on “Moving with Parkinson’s” at 1:30 p.m. and Lydia Skoog, ADPA coordinator, at 3:30 p.m. presenting “Living with Parkinson’s: The Daily Issues.”
University of Montana assistant professor Laurie Slovarp, a specialist in language and speech pathology, starts the Saturday session at 9 a.m. with “Coping with Speech and Swallowing Problems.”

Physical therapist Julie Bless speaks at 10:15 a.m. on “Bringing Motion to Life,” followed at 11:30 a.m. with massage therapist Lacie Angel presenting neuromuscular massage techniques.

The afternoon sessions are:
n 1:30 p.m. — Natalie Norrell, counselor and art therapist.
n 1:30 p.m. (concurrent with the above) — Care Partners Session facilitated by Wagner and Skoog.
n 3:15 p.m. — Jenna Justice, music therapist.
n 4 p.m. — Marisa Roth, dance instructor and owner/director of Northwest Ballet Co.
Wagner prefers that people pre-register by calling Skoog at (800) 233-9040, although they may register each morning between 8:30 and 9 a.m. A donation of $20 is requested for the American Parkinson’s Disease Association.