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Living the Challenge: Parkinson's Disease
In 2005, when Maureen Gile was 35, a stiff finger prompted her to see her physician. She had lived with the stiffness for about a year. Maureen also noticed her movements were slower than usual.
“The middle finger on my left hand would lock up and become stiff,” Maureen said. “I thought I had arthritis.”
Maureen’s primary care physician, Medical College of Wisconsin internist Ann Maguire, MD, MPH, conducted a few tests, and then referred Maureen to Serena Hung, MD, Medical College of Wisconsin neurologist and movement disorders and Parkinson’s specialist for a neurological evaluation.
“I had gait, finger dexterity and other tests to rule out certain disorders,” Maureen said. “During the testing, I was surprised to find that I couldn’t tap my toes on the ground.”
During a neurological evaluation, Dr. Hung reviews medical history and conducts a physical exam. She also performs standard tests, including the Unified Parkinson’s Disease Rating Scale. “The scale helps assess body movements – tremor, rigidity and slowness of movement (bradykinesia) – that suggest Parkinson’s disease,” Dr. Hung said. “There are no blood or imaging tests to diagnose Parkinson’s. We conduct tests to rule out other things before we say someone has Parkinson’s disease.”
Dr. Hung informed Maureen she had young onset Parkinson’s disease. “I think I was in shock,” Maureen said, “I didn’t know what Parkinson’s was.”
Damaged Brain CellsParkinson’s disease is a chronic, progressive disorder that occurs when certain nerve cells in the brain die or become impaired. Normally, these cells produce a chemical called dopamine, which allows coordinated function of muscles and movement. If most of the dopamine producing cells become damaged, symptoms of Parkinson’s appear.
Parkinson’s affects one in 100 people older than age 60. On average, it begins at around age 60. When Parkinson’s disease occurs in people younger than 40, it’s called “young-onset Parkinson’s disease,” estimated to occur in 5 percent to 10 percent of people diagnosed with Parkinson’s. An estimated 1.5 million people in the United States are living with the disease.
“Studies suggest damage to dopamine receptors in the brain has been going on for five to 10 years by the time symptoms develop,” said Bradley Hiner, MD, Medical College of Wisconsin neurologist and movement disorders and Parkinson’s specialist. “This disease creeps up on you; it’s very sneaky.”
Comprehensive TeamBecause Maureen receives care in the Parkinson’s and Movement Disorders Program, she has the full support of a multidisciplinary team that includes neurologists, nurses, occupational and physical therapists, speech-language pathologists, physiatrists (physicians who specialize in physical medicine and rehabilitation), rehabilitation psychologists, clinical psychologists, neuropsychiatrists, neuropsychologists, social workers, a registered dietitian and chaplains.
All team members focus on Parkinson’s disease and other movement disorders such as essential tremor, dystonia, spasticity and Huntington’s disease.
“In our monthly performance improvement team meetings, we discuss ways to improve our program,” said Karen Blindauer, MD, Medical College of Wisconsin neurologist and movement disorders and Parkinson’s specialist. “Team physicians also meet weekly to discuss challenging cases, helping each other with diagnosis and treatment.”
“We offer the highest level of experience and expertise in the region, with three neurologists who specialize in movement disorders and Parkinson’s disease, along with support staff that, bar none, are the best at what they do,” Dr. Hiner said. “Within a patient’s first visit, we can tell them if they have Parkinson’s or another movement disorder, the disease stage and the best course of treatment. Our team is skilled in diagnosing Parkinson’s and other movement disorders that are often misdiagnosed and mismanaged elsewhere.”
Planning Care TogetherWhen Maureen learned of her diagnosis, Dr. Hung spent time explaining the disease as well as treatment options.
“Dr. Hung and I talked about different types of medication,” Maureen said. “I also learned more on my own and began seeing signs I hadn’t noticed before. For example, my handwriting was getting a little sloppy.”
Maureen began taking one medication and is now taking three. She continues to see Dr. Hung every six months. Many factors are considered when prescribing medication for someone with Parkinson’s, according to Dr. Hung. These include the degree of symptoms, age, lifestyle and possible long-term complications. “Dr. Hung always asks how my medication is working and if we should try anything else,” Maureen said. “Our decision-making is mutual; I never feel rushed, and she answers all my questions in a way I can understand.”
Maureen participated in a clinical trial conducted by Dr. Blindauer. The study was done to determine if a Parkinson’s medication could be used effectively in smaller doses.
“I think it’s really important to get involved,” said Maureen, who is now taking the study medication along with her other medications to control symptoms.
In 2008, Maureen began attending the Young Onset Parkinson’s Support Group for people in their 30s, 40s and 50s. “It's nice to get the perspective of other young people who have this disease,” Maureen said. “Sadly, I may be the youngest in the group.”
The group is run by Vicki Conte, Parkinson’s and Movement Disorders Program coordinator, who is responsible for patient and family education and support. Conte coordinates six Parkinson’s disease support groups offered by Froedtert &The Medical College. She also offers resources for people with Parkinson’s disease, and helps plan an annual Parkinson’s symposium for the community.
Treatment Options“There’s no cookie cutter treatment for Parkinson’s; each person has different quality-of-life goals,” Dr. Hiner said. “One patient may ignore a symptom, while another will find the symptom to be a problem in his or her daily life. Our job is to provide information to help patients make informed decisions about treatment.”
A wide range of treatment options is available.
Medication. A number of medications are available to relieve symptoms of movement disorders, and many patients respond well to drugs that reduce muscle rigidity and tremor, and improve speed and coordination of movement.
“Medication treats symptoms, but it does not slow progression of the disease,” Dr. Blindauer said. “We tailor a medication strategy for each patient, looking at predominant symptoms, severity of symptoms, a patient’s age, other health issues and preferences for medication. Together, we come up with a treatment plan and then monitor a patient, so we can make adjustments.”
Lifestyle changes. For patients with mild symptoms, a program of regular exercise, a healthful diet, adequate sleep and stress reduction may be recommended. “We know an exercise program may slow the progression of the disease,” Dr. Hiner said. “Exercising can motivate patients to be more active in their care.”
Neurorehabilitation. As Parkinson’s disease progresses, patients may have difficulty walking, talking or doing even simple tasks. To help minimize or compensate for functional changes, specially trained physical therapists, occupational therapists and speech-language pathologists work with patients to promote the highest possible level of independence.
In addition to being a movement disorder, Parkinson’s disease is a sensory disorder. A person may perceive he or she is walking and speaking normally, but others may see a shuffling walk and find it hard to understand what the person is saying.
“It’s a gradual process, and a person doesn’t realize gait or voice is changing,” said Jessica Doine, DPT, physical terapist. “Speech problems and walking difficulty can lead to poor self-esteem and social withdrawal.”
“About 90 percent of people with Parkinson’s disease end up with voice or speech problems,” said Laurie Dulitz, MS, CCC-SLP, speech-language pathologist. “The voice becomes hoarse, breathy, strained, slurred and mumbled. If you ask people to talk louder, they may think they’re screaming, when they’re talking at a normal level.”
“Move Big, Think Loud” therapy addresses sensory issues by teaching patients a new relationship between efforts to move and talk and actual movements and voice.
Dulitz uses Lee Silverman Voice Treatment® (LSVT), an effective therapy to help people with Parkinson’s and other movement disorders. LSVT focuses on increasing vocal loudness. Dulitz also works with patients who have swallowing problems caused by Parkinson’s disease.
Doine provides physical therapy for Parkinson’s patients who have walking and balance difficulties. People may think they are walking normally, when in fact, they’re taking tiny steps. Doine encourages patients to “think big” to improve gait and balance. She also assesses how patients are using canes or walkers to ensure they avoid falling.
Occupational therapist Bill Reinhard, OT, helps patients improve daily living activities, such as writing, managing medications, preparing meals and driving.
“Neurorehabilitation is individualized,” Doine said. “We evaluate each patient to determine issues and the level he or she wants to return to.”
Emotional support. Because patients with movement disorders often have emotional and psychological needs, they may see a neuropsychologist who assesses cognitive problems and identifies ways to help patients relearn or compensate for impaired neurological functions. Patients may also see a neuropsychiatrist or clinical psychologist who assesses and treats cognitive, emotional and behavioral problems.
Botulinum toxin injections. Approved by the Food and Drug Administration to treat painful muscle spasms associated with Parkinson’s disease and other movement disorders.
Surgery. Patients with Parkinson’s disease that cannot be controlled by medication or who experience intolerable side effects from medication may be candidates for a surgical procedure called deep brain stimulation (DBS). The major symptom that improves after DBS is tremor, followed by muscle rigidity or stiffness. Froedtert & The Medical College have the only program in the area to offer DBS surgery.
“About 5 percent to 10 percent of patients meet the criteria for DBS surgery,” Dr. Blindauer said.
Christopher Sheridan, BS, RN, program manager, Parkinson’s and Movement Disorders Program, works with Medical College of Wisconsin neurosurgeon Brian Kopell, MD, in the DBS program. Sheridan interacts with patients and talks about DBS to support groups and at seminars in the community. He also launched the DBS Support Group.
Parkinson's ResearchPatients in the Parkinson’s and Movement Disorders Program have the opportunity to participate in clinical trials involving DBS, new medications and treatment methods.
Froedtert & The Medical College participate in the Parkinson Study Group (PSG), a non-profit group of Parkinson’s disease experts from medical centers in the United States and Canada. Drs. Hung, Hiner and Blindauer are PSG members.
“We conduct drug, genetic, biochemical and other studies for Parkinson’s that aren’t done anywhere else,” Dr. Hiner said. “Clinical trials are part of our mission as an academic medical center,” Dr. Hung said. “Patients like to participate in clinical trials – and while they may not see the benefit right away, they understand trials help advance the science of treating Parkinson’s.”
The following Parkinson’s studies are under way at Froedtert & The Medical College:
Parkinson’s Research. The Organized Genetics Initiative (Progeni) Study examines genes that have been identified in patients with Parkinson’s disease who have a parent, child or sibling who has or had Parkinson’s disease. This study is in collaboration with the PSG.
The Molecular Markers study is trying to determine if there is a difference between the genes of an early Parkinson’s disease patient and a patient who does not have Parkinson’s.
The Effects of Coenzyme Q10 Study, in collaboration with the PSG, is determining if taking the enzyme Q10 will slow the progression of Parkinson’s disease.
The Using ANS for DBS study is evaluating a new system for DBS to reduce the symptoms of Parkinson’s disease.
For more information on clinical trials for Parkinson’s disease, visit our clinical trials area.
Today, Maureen doesn’t let Parkinson’s disease get in the way of her active life. While she used to run to stay fit, last year she made exercise a regular part of her life. In fact, she ran in two half-marathons and two 5K events. Maureen also likes to incorporate her enthusiasm for running into fund-raising opportunities. A current effort is a ride/walk for Parkinson's that will take place this fall.
“Maureen is very motivated,” Dr.Hung said. “The fact that she has a full-time job, exercises and is raising two children speaks to her strengths.”
Resources
For reliable information about Parkinson’s disease, Serena Hung, MD, recommends the following sites:
• wemove.org (We Move™)
• nih.gov (National Institutes of Health)
• parkinson.org (National Parkinson Foundation)
Learn more about the Parkinson’s and Movement Disorders Program at Froedtert & The Medical College of Wisconsin. Also, read “Moving Forward,” a blog by Drs. Blindauer, Hiner and Hung.
The Victory Summit
The Parkinson’s and Movement Disorders Program will co-host the Davis Phinney Foundation’s Victory Summit on Saturday, Oct. 10, at the Milwaukee Marriott West in Waukesha. The Summit encourages discussion of innovative and progressive research related to improving quality of life for people with Parkinson’s disease. For more information, call 414-805-8326 or visit davisphinneyfoundation.com.
Source: Froedtert Today Date: May 2009 |
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