The Parkinson’s and Movement Disorders’ clinic at Neurology Associates
Parkinson’s disease is a slowly progressing, degenerative disease that is associated with symptoms such as tremor or trembling of the arms, jaw, legs and face, stiffness or rigidity of the limbs and trunk, bradykinesia (slowness of movement), postural instability or impaired balance and coordination.
The Parkinson’s and Movement Disorders’ clinic at Neurology Associates is trained in the diagnosis and treatment of various movement disorders. We believe in a team approach of personalized, focused care centered on the relationship between you and your neurologist.
New patients should expect a comprehensive evaluation and thorough assessment aimed toward making a quick and accurate diagnoses. If indicated, laboratory testing, or brain imaging can be arranged. Once a diagnosis is established, we are happy to provide ongoing care to design and optimize medication treatment in collaboration with your other physicians.
Parkinson’s disease is a condition that can affect different aspects of your life, including your mobility, mood, and sleep. We work with a highly trained and dedicated team of specialists that are all focused on helping you live better with Parkinson’s.
The Parkinson’s and Movement Disorders’ clinic at Neurology Associates is focused on ADLs (activities of daily living), diet, exercise, as well as physical, occupational and speech therapies. Physical therapy can optimize your mobility, physical activity and exercise, and safety. An occupational therapist can help you stay active and independent in your daily activities. Speech therapy can provide recommendations and treatment if Parkinson’s is affecting your speech or swallowing.
If you have learned you have Parkinson’s disease (PD), you may have a lot of questions and concerns.
What is Parkinson’s disease?
Parkinson’s disease (PD) is a neurological condition, which means it affects nerve cells in the brain. In PD, there is a loss of nerve cells that make dopamine. Dopamine is a chemical messenger that passes between nerve cells to help control muscle movement and balance. The symptoms of PD begin to occur when the level of dopamine in the brain drops too low. PD usually begins around age 60, but it can develop in people as young as 20. PD is not fatal.
How is Parkinson’s disease diagnosed?
There are no definitive lab tests or brain scans for PD. So, it is vital—both for peace of mind and for medical treatment—to be diagnosed by a physician experienced in treating the disease. Neurologists, especially those specifically trained in Movement Disorders, can make a diagnosis and prescribe a course of action based on the latest knowledge.
The diagnosis is made by the history and the examination.
What are the symptoms of Parkinson’s disease?
The main symptoms of PD include tremor (shaking), muscle stiffness, slow movements, and loss of balance. However, the symptoms can vary a lot from person to person, both in the kind of symptoms and how severe they are. Some people have only one symptom, while others may have more. PD is a progressive disease. Over time, the symptoms can change slowly and may become more severe. Not everyone with PD experiences the same symptoms. Symptoms can appear gradually. They may affect one side of the body more than the other. About 60% of patients experience resting tremor. Symptoms often begin with occasional trembling of one hand. The trembling gradually becomes constant. The tremor can progress to the other hand and to the legs. Occasionally, it can affect the face. The most frustrating symptoms often are those related to slowed movements. Patients often have trouble dressing, using eating utensils and taking care of their personal hygiene. They also may have difficulty rising from chairs, turning over in bed or getting in or out of cars. The progression of the disease varies among patients. For some, the disease will progress slowly over 20 to 30 years. For others it will progress much faster. Drugs can usually postpone the most difficult symptoms. Patients can function at a good level for many years.
Cardinal Manifestations
- Tremor, predominant when extremity is at rest
>75%, first motor manifestation
>unilateral, distal limb (arm); single finger
> “pill rolling” or to-and-fro
>felt internally fore visible
- Rigidity
>stiffness due to involuntary increase in muscle tone
>all muscle groups
>increase resistance to passive movement
- Akinesia
>most disabling, all patients, worsens
>general: delayed initiation, slowed movements, fatigue with repetitive movement, decreased dexterity, freezing
>specific: masked facies, decreased blink, slow eye movements, soft speech, slurred speech, drooling, small handwriting, short steps, decreased arm swing
- Postural Instability
>last to appear
>most disabling, least treatable
>not a single factor: combination including changes in postural adjustment, loss o of postural reflexes, rigidity, and akinesia
What are the other symptoms that can occur in Parkinson’s disease?
Thinking abnormalities
- Prodrome may occur including changes in mood or personality
- Mental status remains relatively intact early in the disease in the majority of patients
- Mild abnormalities may be present such as visuospatial impairment, difficulties shifting attention, slowed thinking and slow responses
- Dementia may occur
>If it is present at the onset of symptoms or early in the disease, the diagnosis is likely not PD but instead Alzheimer’s disease, diffuse Lewy body disease, progressive supranuclear palsy, or Creutzfeld-Jakob disease
>Dementia does, however, occur in PD in 20-30% (3rd leading cause of dementia after Alzheimer’s disease and stroke-related dementia)
>Visuospatial, perceptual motor tests are abnormal
>Language, delayed recall memory are not impaired
>Many develop what is indistinguishable from Alzheimer’s disease later in course
>Risk factors for the development of dementia include older age, masked facial expression at the onset of disease, depression, hallucinations, slowness being more prevalent than tremor
Dysfunction related to the eyes
- Generally preserved visual function in PD
- There may be blurred vision, difficulty reading from weakened convergence of the eyes
- There is a decreased eye blinking rate
Face, mouth, and throat dysfunction
- Mask-like, staring expression may be present
- Speech may be monotonal, low in volume, muffled;
- The first syllable of words may be repeated (called pallilalia), or words may be rushed together
- Excessive saliva may be present in 80%-this is due to decreased transfer of saliva to the pharynx
- Swallowing problems can occur late in the disease
- A change in the ability to smell and thus taste may be an early sign
Musculoskeletal Deformities
- Deformities of hands and feet are common
- In the hand there may be deviation of the hand at the wrist in the direction of the 5th finger with, flexion of fingers where they meet the palm and at the last joints of the fingers with extension of middle joint of the fingers (this is called a striatal hand)
- In the feet there may be extension of the great toe extended, while the other toes curl downward
- There may be cramping (dystonia) or spasms
- Curvature of spine may also occur
- Swelling in the feet and legs may occur due to immobility
Pain and Sensory Symptoms
- Pain and sensory complaints are common (50%)
- Pain may be cramping, stiffness, or result from a pinched nerve, arthritis
- Numbness, burning, tingling may occur in PD at any stage
Autonomic Dysfunction
- Nearly all PD patients experience during the course of the disease
- Constipation is common and sometimes serious
>This occurs due to the disease, poor diet and fluid intake, reduced activity level, and the drugs used to treat PD
- Hesitancy of urination, or an urgency, with increased frequency of urination may occur
- Sexual dysfunction may also be present and include a loss of libido, or impotence in men
- Episodic sweating may occur and be quite severe in some cases
- Blood pressure changes may occur including lowered blood pressure, or too low blood pressure when standing leading to near fainting and fainting (orthostatic hypotension)
- Weight loss is a problem in a majority of PD patients
Skin Problems
- Chronic seborrhea may occur
- Greasy skin, especially in the face
- Redness may also be present
- Scaly patches in skin creases can occur
Behavioral Abnormalities
- Depression
>Most common psychiatric problem in PD
>It occurs in 25-40% of patients
>This is more than a reaction to having a chronic disease
>It is likely endogenous in nature
>This symptom can occur in 15-25% of PD prior to motor symptoms (>1yr)
>It is more prevalent in PD than other chronic illnesses such as rheumatoid arthritis
>The presence of depression does not correlate with the degree of motor symptoms
>The depression may be mild to moderate
>It can be permanent and chronic or relapsing-remitting
>It is not associated with sex, age, duration of disease, or medications
>It can affect sleep and cognition and be a cause of loss of appetite
>During the times the medications have worn off (motor fluctuations) the depression may come out and then improve when the medication kicks in
- Specific Parkinsonian Personality
>There is inconclusive evidence for the existence of such a personality type
>Individuals who are more passive, anxious, moody, insecure, morally rigid, or prudish are said to show a tendency to develop PD
- Anxiety
>This symptom is extremely common in PD
>Its presence may worsen tremor, freezing, and extra movements (dyskinesias)
>It may also interfere with sleep and appetite
>Some patients may develop a fear of walking due to the thought that they will fall, there may be a fear of being alone/open places, being in crowds, leading to social withdrawal
- Panic attacks
>These are a sudden, extreme enhancement of anxiety
>The unexplained fear occurs with palpitations, sweating, heat waves, dry mouth
>These attacks may coincide with “off” periods when the medicine is not working
Sleep Disorders
- Often patients have what is termed paradoxical sleep, that is being asleep during the day but awake at night
- Additionally, there may be sleep disruption due to nighttime stiffness, tremor, foot spasms and leg cramps, or leg movements
- Vivid dreams, even night terrors can occur
- The sudden uncontrollable occurrence of sleep (sleep attacks) may occur as a result of the disease which may be worsened by certain medications
- Uncontrolled yawning may also occur in some patients
Psychiatric symptoms
- A wide spectrum of disorders may occur including:
>illusions: misperceiving something real for something else
>hallucinations: perceiving something is present out of the blue
>delusions: fixed thoughts unfounded in reality
>agitation, aggression, confusion may also occur
- These symptoms occur in 8-15 % of PD patients
- Elderly, impaired cognition, longer duration of disease, and drug treatment increase risk of these disorders
- These symptoms may be triggered by drugs, infection, trauma
- They generally occur in a later stage
- The presence of hallucinations and delusions are the most common cause for nursing home placement
- The presence of these disorders limits optimal medication treatment
- Prior to having frank hallucinations, patients may experience the sense of something being present in the periphery of their vision.
- Visual hallucinations are the most common; auditory hallucinations are rare
- Visual hallucinations may be human, whole/partial, colorless, dressed/naked, normal or distorted
- The hallucinations may be rarely threatening, but are more likely benign or welcome
- Animals, insects may also be seen
- The hallucinations may occur at night, day, or both; they may seem very real
- Delusions that are paranoid, accusatory in nature may occur
What is the cause of Parkinson’s disease?
The cause of the majority of sporadic (non-familial) cases of PD is unknown. There are numerous theories that are presently being evaluated, however, at present all remain speculations. Researchers suspect that both genetic and environmental factors are involved. Parkinson’s disease is due to a gradual loss of cells in an area deep within the brain. Called the substantia nigra, the area produces a chemical called dopamine. Dopamine is needed to transmit signals within the brain. Loss of dopamine causes the nerve cells to fire out of control. This leaves patients unable to control their movements. No one knows why these cells die. Scientists are exploring several theories. These include chemical reactions within the body, exposure to toxic substances, certain genetic factors and accelerated aging.
What are the treatments for Parkinson’s disease?
Since we do not know the cause of PD, there is no cure. Unfortunately, at this time, there are no known drugs that slow the progression of the disease. Thus, the only reason at present to begin therapy is to reduce disability from the disease. Your symptoms and overall health will determine if, when, and the best treatment program for you. Once you begin treatment, you and your doctor will evaluate how you respond and “fine tune” the treatment as needed. Treatment for the symptoms of PD is usually successful, especially in the early years. However, treatment does not stop the progress or cure the disease.
Experts believe that a comprehensive approach to treatment is the most effective. This approach includes early diagnosis, exercise, good nutrition and medications. Surgery can help control the symptoms in those who do not respond well to medication.
Many people depend on the help, comfort and information they get from PD support groups. These groups are also among the first to learn about research and new treatments.
What are the treatment options?
Your healthcare team is dedicated to making sure you are getting the best care possible. Parkinson’s disease is a condition that continues over a long time but there are many ways to manage it, especially with the aid and support of one or more of the experts on your team.
People with PD have different needs, and at different times. Of course, your doctor and nurses are always available to you, but there are also others trained in special skills, who can help, when you need them. You may never call on some of the people, but it is comforting to know that they are ready to help you.
You—first and foremost, being an active partner with your team will help you get the best possible care.
How can you be an active partner in your care?
- Be honest. Let your team know if you have concerns or are having trouble following the treatment plan.
- Ask lots of questions. Have each person explain how he or she can help you and when you should ask for their help.
- Make sure you understand. If you’re not clear about something, ask to have it explained in a different way.
- Keep a notebook. Use it for questions and answers, as well as to keep track of the names and phone numbers of your team members. If writing is difficult, use a tape recorder.
- Bring an extra pair of ears. A friend or family member can help you remember important information.
Primary Care Physician—You must keep on top of all other health issues with your primary care physician. This includes regular preventative care and health maintenance.
Movement Disorder Specialist—A neurologist specifically trained in treating the kinds of symptoms typical of PD, such as tremor and muscle stiffness.
Neurosurgeon—Medical specialist who performs operations on the brain, which is sometimes suggested when severe symptoms of PD do not respond sufficiently to medication.
Social Worker—A trained professional who provides counsel and help with emotional and family problems and can connect you with people who may assist with specific concerns, such as financial planning
Psychiatrist or Mental Health Counselor—Someone to talk with, who can give you expert advice if you feel depressed or anxious.
Occupational Therapist—A specialist trained to evaluate and help alter your home to make sure it is safe, and who can offer tips, devices, and aids to make it easier to move around and handle your daily activities.
Physical Therapist—A specialist trained in using exercise to condition muscles and help improve posture, balance, and walking
Speech Therapist—A specialist trained to help with speech and communication, and problems with swallowing.
Dietitian—A specialist who helps design an appropriate diet, including any special adjustments needed because of specific PD medications.
Caregiver—The person who provides care to those who need supervision in the home or elsewhere, may be a professional but is often a family member.
Exercise and Physical Therapy.
Eating a well-balanced diet helps maintain patients’ general health and strength. Exercise helps preserve muscle tone and strength and improves mobility. Swimming and walking are especially helpful. Some doctors recommend physical therapy or muscle-strengthening exercises.
Medications
Dopamine agonists: These agents work by imitating the effect of dopamine, which allows nerve cells to keep sending messages to each other. They may be the first treatment for early PD, helping people keep up normal activities by helping control body movements that have begun to slow or become irregular. With long-term use, dopamine agonists may lose their effectiveness and may cause problems in motor function (how you move). For this reason, other medications are often used instead of, or together with, dopamine agonists.
Pramipexole or Mirapex
Ropinirole or Requip
Pergolide or Permax
Bromocriptine or Parlodel
Cabergoline
Levodopa: Levodopa (with carbidopa to prevent side effects) is a drug that changes into dopamine in the brain. It is usually combined with carbidopa to prevent levodopa from breaking down too quickly. It is one of the most effective treatments. It helps replenish the supply of dopamine in the brain. Disease progression and drug use may result in problems in the duration of action of the medication and fluctuations in its beneficial effect.
Selegiline: Also known as deprenyl. It can delay the need for levodopa and also be given with levodopa to prolong the response. It inhibits the activity of the enzyme that breaks down dopamine in the brain.
COMT inhibitors: These medications are taken with levodopa. They block the enzyme that breaks down levodopa before it can reach the brain.
Entacapone or Comtan
Tolcapone or Tasmar
Anticholinergics: These agents are mostly used to improve tremor. These drugs block the neurotransmitters that counter the action of dopamine.
Procyclidine or Kemadrin
Trihexyphenidyl or Artane
Benztropine or Cogentin
Amantadine: An antiviral drug that can be used alone in early stages of the disease or later with levodopa.
Surgery
Surgery is an option for those who have not responded well to drugs. Pallidotomy and thalamotomy can reduce specific symptoms for some patients. These surgeries destroy a small group of cells in areas of the brain that cause tremor. In deep brain stimulation, a device like a cardiac pacemaker is implanted into the brain. The electrical brain stimulation blocks the signals that cause tremors and other signs of the disease.
Coping With The Diagnosis
With your doctor telling you that you have PD, you may feel a lot of different emotions. Learning more about emotions connected with PD and how others with PD have coped can be encouraging and inspiring.
What are some ways you can cope with PD?
There are many ways, different for each person, of living a good life with PD. You will discover many of these ways on your won, but to start off your thinking, here are some valuable thoughts and tips that people who have PD have shared. Dealing with changes in your life is very personal, so it’s important to find the ways that are useful and comfortable for you. You may want to use some of these ideas right now, and others sometime in the future.
- Reach out to a social worker or counselor. You may find it helpful to talk to someone outside of your family and friends who can listen sympathetically to feelings and concerns you need to express.
- Join a local PD support group where people may be dealing with many of the same problems you are.
- “Chat” online with other people with PD.
- Look to others. People with PD who are active in public life can be a source of inspiration and help you maintain a positive attitude.
How do you tell others about your PD?
When to share information about your PD is entirely up to you. However, letting others know you have some advantages. One is the people won’t misinterpret the visible changes in you. The other is that people who are aware of your PD can help keep you and your surroundings safe.
Is depression common in people with PD?
Yes, as stated above, people with PD experience depression years before PD has even been diagnosed. Depression is a physical condition which can be causes by a chemical imbalance in the brain. It can be caused by PD itself or may be triggered by the stress of being diagnosed with PD. Be sure to tell your physician if you experience any of the following symptoms of depression for more than two weeks:
- Difficulty sleeping
- Loss of appetite and energy
- Lack of motivation and sex drive
- Feelings of hopelessness
- Thoughts of suicide
Parkinson’s Disease Support Groups
Living with Parkinson’s disease can be hard for you and your loved ones. You may want to learn more about the disease, its symptoms and treatments. You may also want to talk to other people who live with Parkinson’s disease. Parkinson’s disease groups can help you. They can teach you about Parkinson’s disease and give you support. Many of these groups have local chapters around the country. Please look to these groups for Parkinson’s disease information and support.
Parkinson’s Disease Foundation (PDF)
This group teaches patients and the public about PD. They help search for a cure. They also find ways to make living with PD easier. This group can refer you to local chapters and support groups. Their Web site has news about PD and an “Ask the Expert” feature.
1-800-457-6676
www.pdf.org
American Parkinson Disease Association (APDA)
This group teaches patients and provides support. They also inform the public about PD through events and fund-raisers. This group has many chapters and can refer you to local support groups.
1-800-223-2732
www.apdaparkinson.org
National Parkinson Foundation (NPF)
This is the largest group for people with PD and their loved ones. They can teach you about PD and tell you about new research, events, and support groups. This group also provides caregivers of PD patients with helpful tips and real-life stories. The Web site for caregivers is: www.parkinsonscare.com.
1-800-327-4545
www.parkinson.org
Michael J. Fox Foundation for Parkinson’s Research
Michael J. Fox has PD. He started this group to teach patients and caregivers about living with PD. Their Web site and newsletter can keep you up-to-date on PD research, news and events.
1-800-708-7644
www.michaeljfox.org
People Living With Parkinson’s (PLWP)
This Web site supports patients. It offers chat rooms, message boards, and PD facts.
www.plwp.org
The Parkinson Alliance (PA)
This group supports PD research. Their Web site includes news and updates on research and events. This group provides links to other PD sites.
1-800-579-8440
www.parkinsonalliance.net/home.html
The Parkinson’s Web
This Web site links you to private groups, government aid, and health centers. It can connect you to support groups for PD patients and families.
www.pddweb.mgh.harvard.edu
Parkinson’s Action Network (PAN)
PAN raises money to find a cure for PD. Their Web site provides updates on all efforts related to PD.
1-800-850-4726
www.parkinsonsaction.org
Family Caregiver Alliance (FCA)
This group helps people who care for patients at home. Their Web site provides online talks, support, and news on public policy. They also offer help on how to provide long-term care.
1-415-434-3388
www.caregiver.org
National Alliance for Caregiving (NAC)
This group supports caregivers and the health care workers who help them. They also teach the public about issues facing caregivers today.
1-301-718-8444
www.caregiving.org
National Family Caregivers Association (NFCA)
This group teaches caregivers and offers support. They also inform the public about caregiver issues. Their goal is to inform caregivers on how to help patients keep a good quality of life.
1-800-896-3650
www.nfcacares.org
The Michael J. Fox Foundation
The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today.
http://www.michaeljfox.org/index.cfm
TEAM FOX
Team Fox was launched in January 2006 as a way for The Michael J. Fox Foundation to support the heroes all over the country who already had made it their personal mission to find uniquely creative and fun ways to raise funds for Parkinson’s research. Team Fox provides guidance, tools and resources for the thousands of amazing people all over the world who are walking, running, baking, party planning, paddling, pedaling, and dancing to raise funds and awareness for Parkinson’s research.
http://www.teamfox.org/