Parkinson's Support Group helps residents cope with the disease

Local residents who have Parkinson’s disease (PD), or a loved one who has it, meet once a month for support and advice at Christ the King Lutheran Church in Fallbrook. The Fallbrook Parkinson’s Support Group formed earlier this year (as an extension of the North County Parkinson’s Support Group in Vista) and met at the home of Shirley and Bob Fender, but quickly outgrew the space with the participation of roughly 40 people.

Parkinson’s is a neurological condition in which a large number of brain cells that produce dopamine are either damaged or dead. (Dopamine is a brain chemical that helps nerve cells control muscle movement.) The lack of dopamine prevents control of the patient’s movements leading to tremors or trembling in arms, hands, face, jaw, and legs. It can also cause stiffness, or rigidity, slowness of movement, impaired coordination and balance, and postural instability.

The Fallbrook Parkinson’s Support Group is a good source for information and assistance as well as moral support for dealing with the effects of the disease on both the people who have it as well as their families. Each meeting includes a speaker on a topic pertinent to the group.

The guest speaker on Oct. 24 was Jennifer Oeding, PhD, who is serving as the interim director of the Parkinson’s Association’s Minds and Motion Health Services at its San Diego office, among other duties. A clinical psychologist, Oeding specializes in health psychology and her passion is “working with people coping with illness and their families.”

“Illness changes our lives,” she said. PD has no set stages Oeding explained, saying that in the movement disorder society, the rating scale for its progression is a bar graph with up and own movement. That is why “[we] cannot predict the future” when asked if they can tell how long until someone can’t take care of themselves.

There are too many factors and each person is different in how PD affects them. Symptoms can be more physical, or cognitive, or vocal depending on the individual. Sixty percent of people with PD have depression; 60 percent of them have anxiety and some also have impulse control issues. This is why working with a neurologist is a struggle to find the balance of what works for each person.

Because a person with Parkinson’s experiences varying degrees of difficulty caused by the illness, which can change from day to day, he is constantly coping and readjusting to his condition and changes in medication. Oeding offers support, giving the patient tools to cope with PD.

Oeding is developing an in-house research department that will study how group therapy and integrated medicine impact the progress of PD. She is looking into non-pharmaceutical and non-invasive procedures to help people with PD. The study group, which she hopes to start by spring, will require participants to have a two hour session with her at the start, then monitoring for two years with periodic cognitive tests. It will be open to people at any age and any stage of progression.

The psycho-social services available to people with PD include medical counseling, support groups, physical therapy and neurologist visits. Oeding promotes physical exercise to cope with stress; she said, “Exercise is incredibly beneficial...it doesn’t always improve symptoms but helps maintain them, increasing one’s quality of life.”

She reminded her listeners of the old adage about skills and abilities, “If you don’t use it, you lose it.” Oeding also talked about people with PD whose tremors go away when they are doing an activity they are passionate about like playing the piano, and people who have trouble walking but have a steadier gait when walking a dog.

On the other hand, she told them, “Make sure you have real expectations of what exercise looks like with PD.” She said just movement is exercise for some of them. Focused exercises are important as in practicing turning in three steps, retraining the body how to move without falling. Those people with difficulty standing can try chair yoga whereas those with lesser problems can benefit from Tai Chi classes.

A member of the support group stated there “is only one Tai Chi instructor in town and he only offers an advanced class.” So, someone else said that there are instructional videos for Tai Chi. [The Parkinson’s Association has a video library that loans out (by mail) DVD’s including Tai Chi for Seniors.]

Oeding said, “I encourage you to stand up, get blood flowing, even with a walker; getting blood circulating is good for you.” She added that just as people’s physical condition declines from lack of exercise, their brains need exercise too. Working the brain for mental stimulation can be done with crossword puzzles, sudoku or just reading and learning new knowledge. Keeping one’s mind active by engaging in conversations is also good she said.

Communication with and between doctors is also very important. Oeding recommended that seniors sign releases with each of their doctors so that the doctors can send the patient’s medical files to each other. She stressed that they need to be an advocate for themselves by bringing all their medical information with them as well as written out questions to their appointments.

When a person with PD is having surgery, having an advocate like a nurse practitioner oversee their care is a very good idea. Anesthesia is a big deal for PD patients who need to be very careful with the kind that is given to them. It is also a good idea to keep (and read) the paperwork that comes with their drugs as it lists all the contraindications that doctors may not be familiar with when they prescribe the medication.

Oeding suggested they have a meeting with their pharmacist to double check all their medications looking for the interactions between them. “A good pharmacist is an amazing resource,” she said.

She also said that it is really important to keep diagnosis and medication information in one’s wallet in case of emergency. Medical alert bracelets or necklaces, indicating medications and doctors’ phone numbers, are also helpful to wear.

In the caregivers’ group session after the presentation, they talked about handicapped parking stickers, license plates and placards. Information shared included that people with the handicapped designation can not only park in spaces with the wheelchair symbol but also next to a green curb (which indicates limited time parking) for as long as they wish, and in an on-street metered parking space at no charge.

Also, gas stations must refuel a disabled person’s vehicle at self-service rates unless the service facility has only one employee on duty. The California issued placards can also be used in some other states (like Washington and Colorado). Travelers can check with the DMV in the states they will be visiting to see if they need to apply for a temporary handicapped parking permit there.

To learn more about the support group, contact Shirley Fender at (760) 723-8887. The group usually meets the fourth Friday of the month at 10 a.m. Due to the holidays, the next two meetings will be on the third Friday, Nov. 21 and Dec. 19. The meetings are held in the fireside room at Christ the King, 1620 S. Stage Coach Lane.

The North County Parkinson’s Support Group meets at the Gloria McClellan Senior Center, 1400 Vale Terrace Dr. in Vista, on the second Wednesday of each month from 10 a.m. to noon. They also have a monthly featured speaker followed by breakout groups to support one another as PWP’s (persons with Parkinson’s) or as caregivers. Additional social opportunities include annual events such as the Parkinson’s Association’s Fight Parkinson’s Step by Step 5K event, a July picnic, and a holiday luncheon. For more information, call Vista chair Paul Dawson at (760) 497-1200.

The Parkinson’s Association, located at 8555 Aero Dr. in Kearney Mesa and http://www.parkinsonsassociation.org, can be reached at (858) 273-6763 for assistance.