Parkinson's patients pull together

MAT-SU -- Four years ago, Lory Betts noticed a slight tremor in her hands. She was 49 years old and life was moving fast, perhaps too fast. She worked in Anchorage, commuting from Wasilla, and traveled frequently out of state to support a family member who was battling cancer.

At first the tremors were only an annoyance, something she could almost ignore during those early hectic days but, as time passed, her condition worsened and in 2002, at age 52, Betts was diagnosed with Parkinson's disease.

Normally a disease associated with old age, Parkinson's remains a medical mystery, which is now beginning to strike younger and younger age groups.

Betts said she was often frustrated by how little the medical profession knew about Parkinson's. She wanted someone to just explain what was happening to her body, why she was losing control of her hands and what she could do to fight it.

While difficult to identify in the early stages, Parkinson's is a nervous disorder that erodes the body's ability to control muscle movement. Symptoms often include loss of facial expression, head and hand tremors, slurred speech and lowered voice. Depression is also a common side effect.

Betts said she wanted to meet with others who were facing Parkinson's. There were no Parkinson's support groups in the Valley, so she drove to the Anchorage to meet with a support group at the Anchorage Senior Center.

The commute, however, wasn't easy for Betts or other Valley residents who battle Parkinson's and this fall they began meeting informally at Mat-Su College to share with one another their stories and struggles.

Betts' difficulty in finding a local support network for Parkinson's patients was not unique. According to Dave McIntire, board member for the Washington-based Northwest Parkinson's Foundation, there are only six Parkinson's disease specialists serving five Northwest states, including: Alaska, Washington, Oregon, Idaho and Montana.

McIntire estimates that roughly 70,000 people suffer from Parkinson's in those states and there are 1.5 million people, nationwide, who have the disease.

"I was kind of angry for a while," Betts said in a phone interview Monday, "because I thought someone should have been able to give me complete information."

Two years ago, the Northwest Parkinson's Foundation collaborated with Spokane Parkinson's Resources to address Parkinson's awareness and education by providing monthly closed-circuit television broadcasts to educate Parkinson's patients and their caregivers in the Northwest states.

The live programs are filmed in Spokane, Wash., featuring special speakers, therapists and physicians who field questions from viewers, often thousands

of miles away, through interactive conferencing equipment.

Due to the extreme shortage of Parkinson's specialists, McIntire said the live broadcasts were necessary in order to provide services and expertise in rural places such as Alaska.

"We have speech and swallowing specialists and government advocates," McIntire said. "The conferences allow patients the opportunity to directly

ask questions about their condition."

In September, Betts organized the informal Parkinson's meetings at Mat-Su College into the Mat-Su Parkinson's Disease Support Group. Between five and 10 people now gather at Mat-Su College, between 1 p.m. and 2 p.m. on the third Monday of each month, to discuss issues.

The meetings follow the live teleconference broadcasts in room FSM-109 and are open to the general public.

Betts said Parkinson's can be very embarrassing for people who don't want to admit they have a disease. She said it is especially hard for those who are active and working because they begin to lose control of their bodies and sometimes may appear to be drunk or on drugs to people who don't understand the symptoms of Parkinson's.

"It's one of those diseases that often go undiagnosed," Betts said. "There are just little things that start it out. I started out having a hard time making my coffee and the tremors are the most annoying part, because if you stop and have nothing else to think about you can sometimes control them."

Betts said the meetings let her know she is not alone in her struggle, and she encouraged anyone with questions about the group to call her at 373-5679.

"We have people with their faces freezing, and slurred speech," Betts said. "One guy said he feels like everyone treats him like the village idiot and Parkinson's is forever, unless you get healed by God or they find a cure. At these meetings, though, you get a sense of solidarity and friendship."

Contact Joel Davidson at joel.davidson@frontiersman.com.