Coeur d'Alene support group hosting upcoming events for patients, families, caregivers

On and off. 

In the world of Parkinson's disease, "on" is often used to communicate that medication is working and symptoms are under control.

"'Off' is when your symptoms are not necessarily controlled, and every Parkinson's patient's 'off' is somewhat unique to them," Jennifer Martin, a drug representative from Abbvie Pharmaceuticals, said March 6 during a Coeur d'Alene Parkinson's Support Group meeting at the Coeur d'Alene Elks Lodge.

"I've heard some say that they just get really weak, they're tired, anxious," Martin said. "The cardinal symptoms are the tremors, the sickness, the slow mobility. It's important to understand 'on' and 'off' because that's actually what we use in the clinical trials to measure efficacy of medication."

Martin spoke to the support group to share information about Vyalev, a subcutaneous pump that releases Parkinson's medication similar to an insulin pump for those living with diabetes. Approved by the U.S. Food and Drug Administration, this new medication distribution option is designed to help people who have trouble managing their symptoms or struggle with traditional medication.

A main focus of the Coeur d'Alene Parkinson's Support Group is for attendees to share their experiences, emotional support and glean information from others about how they are coping, living and thriving with Parkinson's.

"If you've met one Parkinson's patient, you've met one Parkinson's patient because everyone's symptoms are so different," Coeur d'Alene Parkinson's Support Group Vice President Willynne Fenton said.

Founded in 2006 and a nonprofit since 2012, the support group is for people with Parkinson’s, their families and caregivers. Meetings are held in a casual setting normally the first Thursday of every month from 1 to 2:30 p.m. at the Elks Lodge, 1170 W. Prairie Ave. Speakers from the medical community are often in attendance.

Mark Derry of Coeur d'Alene has been living with Parkinson's for 12 years. He is the only one in his family he knows of to be diagnosed.

"(It helps) just to know there's other people that are like me," said Derry, who has been to the support group meetings a few times. "I can come in here, I can stumble around and shake around and be like everyone else. Even though they're different, the symptoms, we're all the same with the same problem."

The Coeur d'Alene Parkinson's Support Group also hosts a Women with Parkinson's Support Group the third Thursday of every month from 1 to 2:30 p.m. at MacKenzie River Pizza, 405 W. Canfield Ave., Coeur d'Alene; the Caregivers' Support Group, which meets throughout the year; Moving to the Music exercise sessions the second, third and fourth Thursdays of the month from 12:15 to 1 p.m. at the Elks Lodge; and Music and Wellness, led by a music therapist to help Parkinson's patients increase the volume of their voices and aid with the clarity of their speech. Music and Wellness meets on the second, third and fourth Thursday of the month from 11:30 a.m. to 12:15 p.m. at the Elks Lodge.

Music and Wellness and Moving to the Music will be held today and March 27.

Women with Parkinson's will next meet Thursday.

Bardenay Restaurant and Distillery will support the Coeur d'Alene Parkinson's Support Group with a fundraiser April 21 from 5 to 9 p.m. by donating 20% of all proceeds to the nonprofit. A Living Well with Parkinson's speaker event is also set for May 2, more information to come.

Info: cdaparkinsons.com

    Jennifer Martin, a drug representative from Abbvie Pharmaceuticals, speaks about a subcutaneous pump that releases Parkinson's medication similar to an insulin pump for diabetes March 6 during a Coeur d'Alene Parkinson's Support Group meeting at the Coeur d'Alene Elks Lodge.