“Watching Dad go from this brilliant, articulate teacher who just loved the classroom, to a man confined to a wheelchair with trouble speaking and no control over movement, is very hard, particularly from the adult child perspective,” says Betsy Kammerdiener, a Memorial Hospital chaplain. “You can’t fix it.”

Betsy has been helping her father deal with Parkinson’s disease for many years and has found ways to cope. She remembers his diagnosis. “The symptoms I noticed were the shaking, the inability to articulate, the stiffness, the change in facial expression. He couldn’t seem to use his face to express his feelings.”

Parkinson’s is a degenerative disease caused by the death of nerve cells in the substantia nigra, a small center in the brain that produces the dopamine that controls ease of motion. “Often, people start with a shuffling of the feet or a very mild tremor,” says Dr. Matthew Kodsi, a local neurologist. “This nerve center has a significant reserve, so symptoms don’t become visible until as much as 80 to 90% of the area is damaged.”

The diagnosis is made by examination rather than by a blood test or images of the brain. Parkinson’s exhibits a few classic symptoms, both physical and cognitive. “In Parkinson’s, the tremor you see is very characteristic; it’s called pill-rolling. It looks like the patient is rolling a pill in their hand at a particular rate,” Dr. Kodsi explains. “Other characteristics include a flat, emotionless face; a slow, shuffling walk; rigidity – all those things tell you it’s Parkinson’s.” Some cognitive symptoms also occur with Parkinson’s. Thought processes slow just as the body slows. Parkinson’s-associated dementia is similar to the memory problems seen in Alzheimer’s, and there is a higher risk of depression with Parkinson’s.

“The question is the old argument of genetics versus environment,” Dr. Kodsi explains. Certain genes are shown to be related to Parkinson’s and some gene mutationsare clearly linked to the disease. At the same time, studies indicate that environmental exposure to chemicals, pesticides, and certain metals may contribute to the cause. For example, statistics show a higher incidence of Parkinson’s among welders.

 

Since the nerve cells that die are those that produce dopamine, the chemical that smoothes movement, all treatment goals for Parkinson’s patients focus on replacing dopamine.

“Some drugs act like dopamine, some are converted by the body to dopamine, and others prevent the breakdown of dopamine,” says Dr. Kodsi. “Treating Parkinson’s is very much an art form. Every case is different, and no one combination works across the board.”

Long-term side effects from these drugs concern physicians treating Parkinson’s. One older Parkinson’s drug may cause extra movement, called dyskinesia, after about ten years of treatment. Patient age is a consideration when deciding on the most appropriate treatment.

In addition to medicines, surgery is becoming an increasingly viable option. Deep Brain Stimulation (DBS) was introduced in theory in the late 1980’s and is now a more common surgical alternative.

“The concept is to address a possible imbalance,” Dr. Kodsi says, “If an area is too active, surgeons may be able to tone it down by damaging it, or by stimulating it to disrupt the activity.” A wire is placed in the tissue of the imbalanced area of the brain. The wire is attached to a stimulator and battery pack much like a pacemaker. The stimulator gives off a steady electrical pulse that interrupts the excess activity. It can be turned on or off as necessary, and frequencies can be adjusted to relieve symptoms for the patient’s comfort. The procedure is still being fine-tuned to determine how different brain centers react in order to give the best results.

Vitamin supplements are also an area that some patients pursue. According to Dr. Kodsi, the value of vitamin supplements for treatment of Parkinson’s disease is still not clear. “The theory is that nerve cells are damaged by oxidation, and supplements with antioxidant properties might help in treatment,” Dr. Kodsi says. “Unfortunately, multiple studies have shown only a small benefit. Since benefit is marginal and cost of these supplements is high,they are not very widely used at this time.”

 

Efforts are ongoing to produce neuroprotective drugs that might slow the degeneration of nerves in the substantia nigra. Unfortunately, few successful compounds have been discovered.

Gene therapy offers a promise of success, but it is still in the experimental stages.   The goal is to boost production of a key protein that might increase dopamine levels or slow the disease process. “Scientists use a toned down virus that won’t cause an infection, place a gene in the virus that makes a specific protein, and then insert the virus in a target area in the brain,” Dr. Kodsi explains. “The hope is that the gene will go from the virus to cells in the brain and turn on production of the desired protein.”

A patch that feeds a dopamine agonist (a drug that acts like dopamine) into the system is a new development for Parkinson patients who struggle with keeping their dosages even. “Every time you take a pill, the level of the drug in the body will eventually peak and then fall,” Dr. Kodsi says. “To help smooth out these peaks, multiple drugs are being combined in single pills. The patch will help with that, too.”

A study released in February of 2007 suggests that an enzyme in the brain called GST pi can be measured as a possible indicator of susceptibility to Parkinson’s. The role of this enzyme in the brain is to protect cells from death from environmental toxins like pesticides or cell suicide, called apoptosis. The study, conducted by researchers at St. Jude Children’s Research Hospital, proposes measuring GST pi levels as a way to evaluate an individual’s propensity for developing Parkinson’s disease.

“Patients must learn to deal with complicated medication regimens,” Dr. Kodsi explains. “They are usually very in-tune with their disease and know that if the tremors pick up, they have to take the next dose of their medicine or a half dose. Most patients learn to adjust their dosages to take care of themselves.”

Exercise has been proven in studies at Mayo Clinic to reduce the severity of symptoms and tohelp patients gain some measure of confidence and muscle control.

Patients can also gain benefit from eating foods high in antioxidants. These include berries, fruits, a wide variety of colorful vegetables, and whole grains.

 

Because the disease, at this time is incurable, Betsy Kammerdiener advises family members to look for familiar things and tolearn new ways to connect with a loved one as the disease progresses. “My dad had this really dry sense of humor. He was great with one-liners, and every once in a while that part of him still comes through and we say, ‘That’s a Dad-sighting!’”

Learn to ask for help. “If you are the main caregiver, you need to reach out for support from other family members and friends. Since I live closest, I am most involved with the care of my dad, but my brother and sister want to help in any way they can, and I keep them in touch. It helps me to talk to others who know and love Dad. I also have cousins all over the country I can call anytime.”

 Betsy encourages caregivers to build a network of support - family members, friends, health care professionals, and spiritual counselors. “Support groups can be very helpful,” Betsy says.

Other practical advice for caregivers:

·    Know the doctors. Go to appointments so you know the regimens and have current information.

·    Be sure your family member has a living will.

·    Be authorized as Power of Attorney and Healthcare Power of Attorney