Carlita Judge

"I wish I could take it away so she wouldn't have to suffer like this," says Jim Judge.

In 1985, Carlita Judge sat quietly at her kitchen table in Iowa writing a letter to her daughter Jill. The words that came from the pen in her right hand were smaller than usual. She tried to continue, but noticed that she just couldn't form all the letters with her hand.

"We didn't have a clue into what was happening at the time," says Jim Judge, Carlita's husband. "We went to see our family physician right away and he sent us to a neurologist. We thought that possibly Carlita just had some issues with the nerves in her hand."

But the problem Carlita was experience was anything but simple. The specialist diagnosed Carlita with Parkinson's disease.

"I remember asking the physician what Parkinson's was," says Jim. "We started to do some research on our own and began to understand how serious this condition was."

Parkinson's disease is a brain disorder. It occurs when certain nerve cells in a part of the brain called the substantia nigra degenerate and eventually die. Normally, these cells produce a vital chemical known as dopamine. Dopamine allows smooth, coordinated function of the body's muscles and movement. When approximately 80 percent of the dopamine-producing cells are damaged, the symptoms of Parkinson's disease appear.

During their time in Iowa, Carlita received care at a regional Parkinson's center three or four times a year. The Judges lived with the disease and tried to manage the symptoms with medications.

Seeking answers

In 1996, the couple retired and later moved south to enjoy the weather in Fountain Hills, Arizona. But Carlita's symptoms continued to worsen.

"We decided to go to Mayo Clinic and see a neurologist," says Jim. "At that time, Carlita's disease had progressed to a point in which she was experiencing almost all of the symptoms. She was falling three to four time a day, even though I was beside her as much as possible. I had to stand close to her and hold her so she wouldn't fall. She had severe tremors and had lost control of many of her bodily functions. She also had severe eyesight problems.

The Judges had heard about deep brain stimulation (DBS) for Parkinson's disease and wanted to get additional information. In DBS, a pacemaker-like unit is implanted in the chest wall and transmits electrical impulses to tiny electrodes placed in a structure deep within the brain that controls many aspects of motor function. This procedure can help with symptoms of the condition.

The Judges met with Virgilio Evidente, M.D., a neurologist at Mayo Clinic, to discuss the options. After several months of testing it was determined that Carlita was a candidate for the procedure. For patients with symptoms affecting both sides of the body, like Carlita, two successive surgeries are performed that target both the right and left motor centers of the brain.

Carlita had the initial procedure on April 2004. She was in the hospital for two days following the surgery. The second surgery was performed one week later. While the procedure was a success, DBS can help control the symptoms of Parkinson's disease but not the progression. Carlita still required constant care.

Caregiver stress

The years of caregiving were taking a toll on Jim, who felt constant concern for his wife. "Through all this I just feel so bad for her," he says. "I wish I could take it away so she wouldn't have to suffer like this. It really takes a toll on you over time with the stress and worry. As more and more of the duties of daily living fall to the caregiver, the heavier it gets. I have fought depression for years and to have this additional strain to worry about your loved one, you start looking for someone to blame."

Following the DBS procedure, Mayo Clinic in Arizona contacted Jim about a new study that was being developed. Researchers were exploring the biological and emotional effects of stress on adult caregivers. The study focused on older caregivers, specifically spouses of patients with disabling neurological disorders such as Parkinson's disease. Jim enrolled in the 8-week stress-reduction course that centered upon refining attention-based skills through meditation.

"Family caregivers suffer from the symptoms of depression at more than twice the rate of the general population. If that caregiver is a spouse, current research shows that they experience a rate of six times that amount," says Jennifer Bortz, Ph.D., a neuropsychologist at Mayo Clinic in Arizona and the principal investigator in the study.

Dr. Bortz, study co-principle investigator Teri Pipe, Ph.D. and a multidisciplinary team of experts hope to use the information from this study to develop a refined course to help patients, family members, and professional staff caregivers in the future.

The course helped Jim focus his thoughts and control some of the stress in his life. "What this course has done for me is bring me to the present moment," he says "Dealing with things that are happening now, not to focus on the future or the past. The course helped me immensely. This course helps you with the life you are living and teaches you the tools to relax anytime your stress level climbs."

Jim draws from his experience as a former human relations manager and long term caregiver to offer understanding and help to other caregivers regardless of the stage of progression of the disease. He served as co-chair for the Fountain Hills Parkinson's support group and started the Fountain Hills caregivers support group in January of this year.

"We focus strictly on the needs of the caregivers, regardless of age, affliction or disease of the person for whom they give care," says Jim. "We try to help caregivers recognize stress and how to deal with it most effectively. We don't have all the answers, but the meetings provide an opportunity for people to express themselves with others who truly understand what they are experiencing and to realize their situation is not unique. The most important thing people need to understand is there is help out there."