- 10 Things Your Doctor Won’t Tell You About Parkinson’s Disease
- Parkinson’s Disease
- Cutting-Edge Surgical Program
- Internationally Renowned Research
- Make an Appointment
- Parkinson’s Disease
- Prevalence and Incidence
- Common Symptoms
- Medical Treatment
- Experimental Research
- Secondary Parkinsonism
- Center of Excellence Network
- Apply to Become a Center of Excellence
- Parkinson’s Outcomes Project
- Get Expert Care Today
- Help Us Expand the Network
- Florida Parkinson Foundation Center of Excellence
10 Things Your Doctor Won’t Tell You About Parkinson’s Disease
4. Exercise is crucial in maintaining quality of life. “A lot of doctors are still not telling patients about exercise,” says Larry Kahn, 55, a retired tax attorney in Atlanta who was diagnosed in late 2010. “I went to three doctors, and none of them told me about vigorous exercise,” he says.
Kahn went to a support group, where members suggested intense exercise to manage his Parkinson’s. It made a huge difference. “I boosted the exercise, and my mental attitude has improved quite a bit,” he says, adding that with medication and exercise, he feels more in control. His routine includes yoga, tai chi, boxing, Zumba, and strength training. In 2014, Kahn founded the PD Gladiators, a nonprofit devoted to combating Parkinson’s disease with vigorous exercise (he serves as the group’s CEO).
Studies back up his exercise claims: A study review published in the Journal of Aging and Physical Activity found that exercising for an hour two to four times a week leads to positive effects on quality of life.
5. Finding the right Parkinson’s support group can be invaluable. Garateix’s doctor suggested she find some support, which she says becomes important. She was just 42 when she was diagnosed, so she says it took some time to find a group that was the right fit and that she could relate to. Many people are diagnosed after age 60, and in one group, their major concern was how to pick up their grandchildren easily, she recalls. She didn’t want to dismiss the concern, but she couldn’t relate.
“Now I’m in a support group with women around my age,” she says. “That makes a world of difference.” They understand her challenges, such as her concerns about career, for instance, while many of the older retired people did not.
Here are details about how to get started if you are seeking a support group.
6. Physical therapy can help with Parkinson’s symptoms. “A lot of doctors reserve physical therapy for patients who already have impairments,” says Kahn, the exercise advocate. But he says a good physical therapist can help design an exercise program and monitor symptoms.
Research on physical therapy and its effect on Parkinson’s symptoms has produced conflicting findings, partly because different researchers study a wide range of physical therapy programs. In a roundup of recent research, experts at the National Parkinson Foundation say they still believe physical therapy has benefits. Some recent studies that found no benefit researched ”low-dose” PT, among other limitations, so it may not have been frequent or intense enough to reap benefits, experts say.
RELATED: Home Remedies to Help With Parkinson’s Symptoms
7. Informing family and friends will help in the long run. “I kept it from my parents for a year,” says Garateix. “I didn’t want to be a burden on my family.” She also valued her independence. But as she and others learned, having a well-informed circle of family and friends helps them be prepared for future situations when you do need help. “You have to learn how to negotiate your independence,” she says. Her dad always took her luggage to the car, for example, and she wanted to do it herself. So they finally had a heart-to-heart, and she told him, “You have to let me manage and let me figure out what I can and can’t do.” She also learned to pick her battles. Now she sometimes takes her luggage to the car, but says ”most of the time I let him do it.” She also learned that it’s important for family members to feel like they’re helping.
8. Your doctor can fill family and friends in on your condition. “I think doctors need to have a session with the family,” Garateix says. “The doctor can give the family a reality check about what lies ahead.”
For instance, she says if family members know beforehand about the gambling and other obsessive-compulsive issues that can occur as side effects of certain Parkinson’s medicines, they can be alerted to the warning signs.
9. Not all Parkinson’s disease symptoms are neurological. Parkinson’s ”is a lot more than just shaking hands or stiffness,” says Ribaudo. It can affect many body parts. According to The Michael J. Fox Foundation, there can be many non-motor symptoms, including speech and swallowing problems, constipation, and mood and sleep issues.
10. Take ownership of your diagnosis and feel better. ”Take ownership of your situation by learning about Parkinson’s disease and how you can live well with it,” says Kirk Hall, 67, a retiree in Denver who writes the blog Shaky Paws Grampa.
Educating yourself has many benefits. “This will enable you and your care partner to take an active role in the management of your condition,” he says. That includes knowing about symptoms, discussing changes and medications, and always asking your healthcare providers if you have any questions.
Doctors say many people die with Parkinson’s, not from it. But as symptoms worsen, they can cause life-threatening problems. So taking control of the situation is excellent advice, says Betsy Vierck, 70, of Denver, a patient advocate and medical writer who was diagnosed in 2006. “Once you’re diagnosed with Parkinson’s, it’s a lifetime commitment,” to adapting and changing as the need arises, she says. which can have great payoffs.
The disease ”is going to change, so you have to change the way you adapt, what kind of medications you take, and a lot of your social and home environment to adjust to all those changes,” she says. “I had to relearn walking mechanics.”
Despite the fact that Parkinson’s disease slowly worsens over a number of years, we now have effective medications that act on the dopamine system and allow patients to do well for a significant period of time. One of the best medications for the disease is called levodopa, which gets changed to dopamine in the brain and significantly improves symptoms. Other treatment options include dopamine agonists, COMT inhibitors, and MAO-B inhibitors, all of which help to enhance dopamine transmission in the brain. Early in the disease, medications may work well, but as time goes on patients may find the effects don’t last as long. They will feel slow, stiff, and many will develop dyskinesias or abnormal, involuntary movements. When people start experiencing these symptoms despite taking medications, deep brain stimulation surgery (DBS) is often recommended. DBS involves placing electrodes in precise locations of the brain. The electrodes are connected to a wire that runs underneath the skin to a battery in the chest. When electrical stimulation is delivered to the brain, the tremor improves. It’s like a pacemaker for the brain, instead of the heart.
Cutting-Edge Surgical Program
Our Surgical Therapies Improving Movement (STIM) program includes one of the largest deep brain stimulation centers in the Midwest region. We have a multidisciplinary evaluation program for potential surgical candidates including members from neurology, neurosurgery, psychology, psychiatry, speech pathology, radiology and social work. In addition, we are home to internationally-renowned researchers who are studying the underlying causes of Parkinson’s disease as well as new treatments. For those who qualify for the surgery, neurosurgery works closely with rehabilitation for patients who may need physical, occupational and speech therapy. DBS helps to relieve motor symptoms such as stiffness, improves the ability to move and may also reduce the severity of tremor. And whereas levodopa causes additional dyskinesias over time, DBS has been found to relieve them. Another benefit of DBS is that since electrical stimulation is constantly delivered to the brain, patients experience an increase in their “on” time – when motor function is good, while “off” times – when motor function is poor, are typically shorter and milder than before surgery.
Internationally Renowned Research
In addition to offering comprehensive care and cutting edge treatments for Parkinson’s disease, we are also conducting clinical trials on agents that may slow down the disease’s progression. We excel in bringing this cutting-edge research to the care of our patients. The National Institutes of Health has awarded our program with a grant to perform studies in individuals with Parkinson’s disease, looking at levels of chemicals in the brain and how they relate to motor and non-motor symptoms. We are also researching why some patients with the disease who take medications may have impulse control disorders, and how we can predict whether or not someone will develop significant thinking and memory problems.
Make an Appointment
To make an appointment to discuss Parkinson’s Disease or another movement disorder, call 734-764-6831.
Parkinson’s disease is a progressive disorder that is caused by degeneration of nerve cells in the part of the brain called the substantia nigra, which controls movement. These nerve cells die or become impaired, losing the ability to produce an important chemical called dopamine. Studies have shown that symptoms of Parkinson’s develop in patients with an 80 percent or greater loss of dopamine-producing cells in the substantia nigra.
Normally, dopamine operates in a delicate balance with other neurotransmitters to help coordinate the millions of nerve and muscle cells involved in movement. Without enough dopamine, this balance is disrupted, resulting in tremor (trembling in the hands, arms, legs and jaw); rigidity (stiffness of the limbs); slowness of movement; and impaired balance and coordination – the hallmark symptoms of Parkinson’s.
The cause of Parkinson’s essentially remains unknown. However, theories involving oxidative damage, environmental toxins, genetic factors and accelerated aging have been discussed as potential causes for the disease. In 2005, researchers discovered a single mutation in a Parkinson’s disease gene (first identified in 1997), which is believed responsible for five percent of inherited cases.
Prevalence and Incidence
It is estimated that 60,000 new cases of Parkinson’s disease are diagnosed each year, adding to the estimated one to 1.5 million Americans who currently have the disease. There were nearly 18,000 Parkinson’s disease-related deaths in the United States in 2003. While the condition usually develops after the age of 55, the disease may affect people in their 30s and 40s, such as actor Michael J. Fox, who was diagnosed at age 30.
A partial list of famous people with Parkinson’s:
- Muhammad Ali, boxer (boxing-induced)
- Johnny Cash, singer
- Michael J. Fox, actor
- Estelle Getty, actress
- Billy Graham, evangelist
- Pauline Kael, film critic
- Deborah Kerr, actress
- Janet Reno, former U.S. Attorney General
- George Roy Hill, 81, director
- Michael Redgrave, 77, actor
- Pope John Paul II, 84, pope
- Terry-Thomas, 79, actor
- Tremor or the involuntary and rhythmic movements of the hands, arms, legs and jaw
- Muscle rigidity or stiffness of the limbs – most common in the arms, shoulders or neck
- Gradual loss of spontaneous movement, which often leads to decreased mental skill or reaction time, voice changes, decreased facial expression, etc.
- Gradual loss of automatic movement, which may lead to decreased blinking, decreased frequency of swallowing and drooling
- A stooped, flexed posture with bending at the elbows, knees and hips
- Unsteady walk or balance
- Depression or dementia
Presently, the diagnosis of Parkinson’s is primarily based on the common symptoms outlined above. There is no X-ray or blood test that can confirm the disease. However, noninvasive diagnostic imaging, such as positron emission tomography (PET) can support a doctor’s diagnosis. Conventional methods for diagnosis include:
- The presence of two of the three primary symptoms
- The absence of other neurological signs upon examination
- No history of other possible causes of parkinsonism, such as the use of tranquilizer medications, head trauma or stroke
- Responsiveness to Parkinson’s medications, such as levodopa
The majority of Parkinson’s patients are treated with medications to relieve the symptoms of the disease. These medications work by stimulating the remaining cells in the substantia nigra to produce more dopamine (levodopa medications) or by inhibiting some of the acetylcholine that is produced (anticholinergic medications), therefore restoring the balance between the chemicals in the brain. It is very important to work closely with the doctor to devise an individualized treatment plan. Side effects vary greatly by class of medication and patient.
Developed more than 30 years ago, levodopa is often regarded as the gold standard of Parkinson’s therapy. Levodopa works by crossing the blood-brain barrier, the elaborate meshwork of fine blood vessels and cells that filter blood reaching the brain, where it is converted into dopamine. Since blood enzymes (called AADCs) break down most of the levodopa before it reaches the brain, levodopa is now combined with an enzyme inhibitor called carbidopa. The addition of carbidopa prevents levodopa from being metabolized in the gastroinstenal tract, liver and other tissues, allowing more of it to reach the brain. Therefore, a smaller dose of levodopa is needed to treat symptoms. This advance also helps reduce the severe nausea and vomiting often experienced as a side effect of levodopa. For most patients, levodopa reduces the symptoms of slowness, stiffness and tremor. It is especially effective for patients that have a loss of spontaneous movement and muscle rigidity. This medication, however, does not stop or slow the progression of the disease.
Levodopa is available as a standard (or immediate) release formula or a long-acting or “controlled-release” formula. Controlled release may provide a longer duration of action by increasing the time it takes for the gastrointestinal tract to absorb the medication.
Side effects may include nausea, vomiting, dry mouth and dizziness. Dyskinesias (abnormal movements) may occur as the dose is increased. In some patients, levodopa may cause confusion, hallucinations or psychosis.
Bromocriptine, pergolide, pramipexole and ropinirole are medications that mimic the role of chemical messengers in the brain, causing the neurons to react as they would to dopamine. They can be prescribed alone or with levodopa and may be used in the early stages of the disease or administered to lengthen the duration of effectiveness of levodopa. These medications generally have more side effects than levodopa, so that is taken into consideration before doctors prescribe dopamine agonists to patients.
Side effects may include drowsiness, nausea, vomiting, dry mouth, dizziness and feeling faint upon standing. While these symptoms are common when starting a dopamine agonist, they usually resolve over several days. In some patients, dopamine agonists may cause confusion, hallucinations or psychosis.
Entacapone and tolcapone are medications that are used to treat fluctuations in response to levodopa. COMT is an enzyme that metabolizes levodopa in the bloodstream. By blocking COMT, more levodopa can penetrate the brain and, in doing so, increase the effectiveness of treatment. Tolcapone is indicated only for patients whose symptoms are not adequately controlled by other medications, because of potentially serious toxic effects on the liver. Patients taking tolcapone must have their blood drawn periodically to monitor liver function.
Side effects may include diarrhea and dyskinesias.
This medication slows down the activity of the enzyme monoamine oxidase B (MAO-B), the enzyme that metabolizes dopamine in the brain, delaying the breakdown of naturally occurring dopamine and dopamine formed from levodopa. When taken in conjunction with levodopa, selegiline may enhance and prolong the effectiveness of levodopa.
Side effects may include heartburn, nausea, dry mouth and dizziness. Confusion, nightmares, hallucinations and headache occur less often and should be reported to the doctor.
Trihexyphenidyl, benztropine mesylate, biperiden HCL and procyclidine work by blocking acetylcholine, a chemical in the brain whose effects become more pronounced when dopamine levels drop. These medications are most useful in the treatment of tremor and muscle rigidity, as well as in reducing medication-induced parkinsonism. They are generally not recommended for extended use in older patients because of complications and serious side effects.
Side effects may include dry mouth, blurred vision, sedation, delirium, hallucinations, constipation and urinary retention. Confusion and hallucinations may also occur.
This is an antiviral medication that also helps reduce symptoms of Parkinson’s (unrelated to its antiviral components) and is often used in the early stages of the disease. It is sometimes used with an anticholinergic medication or levodopa. It may be effective in treating the jerky motions associated with Parkinson’s.
Side effects may include difficulty in concentrating, confusion, insomnia, nightmares, agitation and hallucinations. Amantadine may cause leg swelling as well as mottled skin, often on the legs.
For many patients with Parkinson’s, medications are effective for maintaining a good quality of life. As the disorder progresses, however, some patients develop variability in their response to treatment, known as “motor fluctuations. During “on” periods, a patient may move with relative ease, often with reduced tremor and stiffness. During “off” periods, patients may have more difficulty controlling movements. Off periods may occur just prior to a patient taking their next dose of medication, and these episodes are called “wearing off.” Uncontrolled writhing movements, called dyskinesias, may result. These problems can usually be managed with changes in medications. Based upon the type and severity of symptoms, the deterioration of a patient’s quality of life and a patient’s overall health, surgery may be the next step. The benefits of surgery should always be weighed carefully against its risks, taking into consideration the patient’s symptoms and overall health.
Neurosurgeons relieve the involuntary movements of conditions like Parkinson’s by operating on the deep brain structures involved in motion control – the thalamus, globus pallidus and subthalamic nucleus. To target these clusters, neurosurgeons use a technique called stereotactic surgery. This type of surgery requires the neurosurgeon to fix a metal frame to the skull under local anesthesia. Using diagnostic imaging, the surgeon precisely locates the desired area in the brain and drills a small hole, about the size of a nickel. The surgeon may then create small lesions using high frequency radio waves within these structures or may implant a deep brain stimulating electrode, thereby helping to relieve the symptoms associated with Parkinson’s.
This procedure may be recommended for patients with aggressive Parkinson’s or for those who do not respond to medication. Pallidotomy is performed by inserting a wire probe into the globus pallidus – a very small region of the brain, measuring about a quarter inch, involved in the control of movement. Most experts believe that this region becomes hyperactive in Parkinson’s patients due to the loss of dopamine. Applying lesions to the global pallidus can help restore the balance that normal movement requires. This procedure may help eliminate medication-induced dyskinesias, tremor, muscle rigidity and gradual loss of spontaneous movement.
Thalamotomy uses radiofrequency energy currents to destroy a small, but specific portion of the thalamus. The relatively small number of patients who have disabling tremors in the hand or arm may benefit from this procedure. Thalamotomy does not help the other symptoms of Parkinson’s and is used more often and with greater benefit in patients with essential tremor, rather than Parkinson’s.
Deep Brain Stimulation (DBS)
DBS offers a safer alternative to pallidotomy and thalamotomy. It utilizes small electrodes which are implanted to provide an electrical impulse to either the subthalamic nucleus of the thalamus or the globus pallidus, deep parts of the brain involved in motor function. Implantation of the electrode is guided through magnetic resonance imaging (MRI) and neurophysiological mapping, to pinpoint the correct location. The electrode is connected to wires that lead to an impulse generator or IPG (similar to a pacemaker) that is placed under the collarbone and beneath the skin. Patients have a controller, which allows them to turn the device on or off. The electrodes are usually placed on one side of the brain. An electrode implanted in the left side of the brain will control the symptoms on the right side of the body and vice versa. Some patients may need to have stimulators implanted on both sides of the brain.
This form of stimulation helps rebalance the control messages in the brain, thereby suppressing tremor. DBS of the subthalamic nucleus or globus pallidus may be effective in treating all of the primary motor features of Parkinson’s and may allow for significant decreases in medication doses.
Embryonic stem cell research is a promising field that has created political and ethical controversy. Scientists are currently developing a number of strategies for producing dopamine neurons from human stem cells in the laboratory for transplantation into humans with Parkinson’s disease. The successful generation of an unlimited supply of dopamine neurons may offer hope for Parkinson’s patients at some point in the future.
Research currently being explored utilizes embryonic stem cells, which are undifferentiated cells derived from several day-old embryos. Most of these embryos are the product of in vitro fertilization efforts. Researchers believe that they may be able to prompt these cells, which can theoretically be manipulated into a building block of any of the body’s tissues, to replace those lost during the disease’s progression.
There is hope that adult stem cells, which are harvested from bone marrow, may be utilized in a similar way to achieve results. Fewer ethical questions surround this sort of research, but some experts believe that adult stem cells may be more difficult to work with than those from embryos. Either way, the scientific community is nearly unanimous in arguing that research efforts and potential breakthroughs will be negatively impacted if they are not allowed to work on both types of stem cells.
Human studies of so-called neurotrophic factors are also being explored. In animal studies, this family of proteins has revived dormant brain cells, caused them to produce dopamine, and prompted dramatic improvement of symptoms.
This is a disorder with symptoms similar to Parkinson’s, but caused by medication side effects, different neurodegenerative disorders, illness or brain damage. As in Parkinson’s, many common symptoms may develop, including tremor; muscle rigidity or stiffness of the limbs; gradual loss of spontaneous movement, often leading to decreased mental skill or reaction time, voice changes, or decreased facial expression; gradual loss of automatic movement, often leading to decreased blinking, decreased frequency of swallowing, and drooling; a stooped, flexed posture with bending at the elbows, knees and hips; an unsteady walk or balance; and depression or dementia. Unlike Parkinson’s, the risk of developing secondary parkinsonism may be minimized by careful medication management, particularly limiting the usage of specific types of antipsychotic medications.
Many of the medications used to treat this condition have potential side effects, so it is very important to work closely with the doctor on medication management. Unfortunately, secondary parkinsonism does not seem to respond as effectively to medical therapy as Parkinson’s.
The AANS does not endorse any treatments, procedures, products or physicians referenced in these patient fact sheets. This information is provided as an educational service and is not intended to serve as medical advice. Anyone seeking specific neurosurgical advice or assistance should consult his or her neurosurgeon, or locate one in your area through the AANS’ Find a Board-certified Neurosurgeon online tool.
Center of Excellence Network
The Parkinson’s Foundation Center of Excellence status is the most respected and sought-after designation in the movement disorders field, with each center required to meet rigorous clinical, research, professional education and patient care criteria.
Centers of Excellence:
- Provide expert care to more than 193,500 people with PD
- Set the highest standards of care worldwide for people with PD
- Advance research to improve the lives of everyone with Parkinson’s treated at centers and beyond, and for future generations
- Provide patient education programs, community outreach programs and specialized Parkinson’s training for healthcare professionals
The Parkinson’s Foundation brings the Centers of Excellence together annually for a “Center Leadership Conference” to provide updates on care and research initiatives. Every center must re-certify after five years to ensure requisite standards of care.
Apply to Become a Center of Excellence
Currently, the Parkinson’s Foundation is not accepting applications for the Centers of Excellence designation. For more information, please contact Clarissa Martinez-Rubio at [email protected]
Parkinson’s Outcomes Project
Nearly half of the Parkinson’s Foundation Centers of Excellence participate in the Parkinson’s Outcomes Project — the largest clinical study of Parkinson’s funded by the Foundation which tracks over 13,000 people living with the disease over time to identify which treatments and therapies provide the best outcomes.
Get Expert Care Today
Search for a Parkinson’s Foundation Center of Excellence or call our Helpline at 1-800-4PD-INFO.
Help Us Expand the Network
Only 10 percent of those diagnosed with Parkinson’s receive the best care from health professionals who specialize in this complex disease. The Center of Excellence network is an important part of the Parkinson’s Foundation goal to ensure the other 90 percent of patients have access to expert care, so they can live better lives.
For more insights on this topic, listen to our podcast episode “Parkinson’s Foundation Center of Excellence: What Does it Take and What Does it Mean?”
Florida Parkinson Foundation Center of Excellence
Request an Appointment Online or call 352-294-5400 for more information.
Dr. Jankovic, board certified in psychiatry and neurology, specializes in movement disorders and Parkinson’s disease. His clinical interests include movement disorders, Parkinson’s disease and related neurodegenerative disorders.
The Parkinson’s Disease Center and Movement Disorders Clinic at Baylor College of Medicine has long been recognized as one of the world’s leading clinical and research institutions with primary focus on Parkinson’s disease and other movement disorders.
The PDCMDC, founded in 1977 by Joseph Jankovic, M.D., provides an unparalleled setting for expert and compassionate care, research and education, with the ultimate goal of finding the cause and cure for neurodegenerative and movement disorders, such as Parkinson’s disease, progressive supranuclear palsy, multiple system atrophy and other atypical parkinsonian disorders as well as hyperkinetic disorders such as tremors, dystonia, tics and Tourette syndrome, chorea and Huntington disease, Wilson disease, myoclonus, tardive dyskinesia, restless legs syndrome, ataxia, spasticity and a variety of disorders of motor control. Patients are referred to the PDCMDC from all over the world because of internationally recognized expertise and cutting-edge, innovative therapeutic approaches, including novel pharmacotherapy, botulinum toxin injections, deep brain stimulation and other surgical treatments, and personalized treatments tailored to the patient’s specific needs.
Our highly regarded movement disorders fellowship program has trained numerous physicians and researchers, many of whom have become internationally recognized leaders in the field of movement disorders. The clinic’s 12,000 patient visits per year and a database of more than 35,000 individual patients and videos provide a powerful resource for effective recruitment into clinical trials and other research studies. The PDCMDC has been recognized as the Center of Excellence by the Parkinson’s Foundation, Tourette Association of America, and the Huntington’s Disease Society of America.
The PDCMDC, located on the 9th floor of Baylor St. Luke’s Medical Center at the McNair Campus, includes academic, clinical, laboratory and administrative facilities, as well as the Experimental Therapeutics Center, which provides a setting for clinical research into novel medical and surgical therapeutic interventions. The PDCMDC is also world renowned for its basic and translational science research conducted at the Laboratory for Integrative Functional Genomics in the Duncan Neurological Research Institute. The clinical findings and scientific discoveries at the PDCMDC have resulted in over 1,000 peer-reviewed publications and 50 different books. The location of the PDCMDC in the hub of the Texas Medical Center, the world’s largest medical complex, allows for easy access to many other clinical and research facilities and fosters fruitful collaboration with scientists at Baylor and at other clinical and research institutions.
Read more about us and look through our annual reports for a recap of our center’s accomplishments and highlights by year.