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Symptoms of Parkinson's Disease (PD) may interfere with people's ability to function effectively on a daily basis. Occupational Therapy, Physical Therapy, and Speech and Language Pathology are health disciplines that help people to prevent problems from occurring and to treat difficulties people are having. They can offer you strategies to improve your function or adapt to changes that are imposed by Parkinson's symptoms. Family members can also be involved in learning techniques to make life easier. Typically, a referral by a physician is needed in order to have these services covered by health insurance. It is also necessary to see under what circumstances your health plan provides coverage.

Communication Impairment in PD: Speech and Language Pathology

Speech, language, voice and swallowing disorders are common problems in patient's with moderate to significant PD. Very often the first sign of significant PD is reduced voice power and increased rate of utterance. As the duration of PD increases communication impairment also becomes more complex. Additional communication problems may include poor precision and strength of speech sound pronunciation and reductions in expressive language complexity. Further some patients will experience slowing of mental functioning and memory loss that will also impact language formulation and expression. If these communication impairments become dominant in everyday activities then the patient will begin to withdraw from necessary daily communication activities . Patients may decide to refrain from answering the phone or initiating telephone calls or maintaining conversations. This communication disability can seriously isolate patients and make it difficult for them to function in their families and with caregivers.

The speech and voice communication impairment symptoms in PD are identified by speech-language pathologists as a stereotypic cluster identified as "hypokinetic dysarthria". In general, PD patients will eventually exhibit:

  • Weak and diminishing voice power.
  • Sudden increased rate of utterance.
  • Reduced range of motion of the speech gesture.
  • Monotone and monoloud speech intonation.
  • Poor initiation in speech utterance.
  • Stuttering-like fluency symptoms.

These symptoms of communication impairment can be treated by speech-language pathologists to provide exercises that will allow the patient to reduce the negative effects on overall speech intelligibility. PD patients can improve their communication with treatment, practice and a willingness to work hard to compensate for the neuromuscular impairment in PD.

Swallowing disorders in PD can be significant and should also be evaluated and treated by speech-language pathologists. Because the neuromuscular deficits in PD also affect the muscles of swallowing, patient precautions, x-ray evaluation procedures and treatment may be necessary. Patients may experience difficulty in chewing certain foods sufficiently, choking on liquids or poor passage of food into the esophagus. These swallowing difficulties can also be remedied with exercises and diet recommendations provided by the speech-language pathologist.

Finally, the possible reduction in mental functioning in PD patients has become an increasing concern. These cognitive difficulties include slowing of mental response, short-term memory limitations, slowing word retrieval, time and space disorientation, reductions in expressive language complexity and length, and diminished emotional affect. These problems should also be addressed by the speech-language pathologist in concert with social workers and caregivers.

Evaluating and treating the communication impairment of PD patients while complex, it is rewarding, because improved functioning is possible with speech-voice-language and cognitive rehabilitation.

Contributed by Richard Merson, Ph.D., Speech and Language Pathologist, Beaumont Hospital, Royal Oak Michigan
Chairman, MPF Professional Advisory Board, Member MPF Board of Directors

Occupational Therapy

Occupational therapists (OT) - Occupational therapy is a health care/rehabilitation profession. OT's work with people of all ages, who are experiencing difficulties with leading independent, productive, and satisfying lives. The goal of an occupational therapist is to assist individuals with performing their activities of daily living. People with Parkinson's Disease may need the help of an occupational therapist for many different reasons. While one person may need help learning various strategies to manage their tremors, another may need help with feeding skills, and yet another may need to learn various coordination exercises to maintain functional use of their hands, and someone else may need a home evaluation so the therapist can make recommendations on equipment needs and home safety, the list is endless. The treatment is individualized to your needs which is based on your goals for therapy as well as the therapists evaluation. If you have lost some independence due to your Parkinson's Disease consult your physician regarding occupational therapy.

Contributed by:
Sue Vergilio, O.T.R., St. John Macomb Hospital
Past Member, MPF Professional Advisory Board

Physical Therapy

Some symptoms of Parkinson's disease may include tremors, rigidity or muscular stiffness, and bradykinesia or slowness of movement. These symptoms can cause you pain, a decrease in range of motion in your joints, neck and back, a change in your posture and difficulty moving.

When you experience these problems, your balance and mobility may be affected. You may have difficulty walking and may even start to fall. If any of these occur, you may benefit from visiting a physical therapist. First you need to see your physician for a referral.

When you see a physical therapist, you will have a thorough evaluation. The P.T. will examine your range of motion, strength, coordination, balance, posture, functional mobility skills and your gait, or ability to walk.

One the evaluation is completed, recommendations may include assistive devices such as a cane or walker and a comprehensive exercise program designed especially for your needs. You will also be instructed on the importance of daily exercise or activity to help maintain or improve your quality of life.

Contributed by: Stacey Turner, R.P.T., St. John Macomb Hospital, Warren, MI
Past Member, MPF Professional Advisory Board

Mental Health Issues

The recognition and management of mental health issues is an important part of maintaining a high quality of life for all people. Common issues experience by people with Parkinson's and their families include depression, anxiety, acute confusional states, and dementia. Depression may cause sadness, loss of interest, guilt, lack of energy, insomnia and the inability to experience pleasure. Anxiety may be due to medical problems, pain, or be an understandable reaction to life's circumstances. Medical illness and medications are common causes of acute confusion. Finally, chronic confusion (or dementia) can be seen in some people with later stage Parkinson's Disease. Proper diagnosis of each of these conditions is important because treatment will improve the quality of life.

If you are experiencing any difficulties such as a change in mood or thinking, or anxiety, please discuss this with your physician. It is possible that medications prescribed for P.D. or other illnesses can cause some of these symptoms. You may need to have your medications adjusted. After exploring if there are any physical issues or medications that contribute to your mental health changes, you may receive a referral for further consultation.

Contributed by:

Mark Ensberg, M.D., Michigan State University School of Human Medicine, East Lansing, MI
Member, MPF Professional Advisory Board

 

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Deep Brain Stimulation

The United States Food and Drug Administration approved the use of deep brain stimulation (DBS) in the subthalamic nucleus (STN) and globus pallidum (Gpi) in March of 2002 for the treatment of medically refractory Parkinson's disease (PD). In contrast to the thalamic DBS, which controls only the tremor of PD, both STN and Gpi DBS stimulation are able to ameliorate all cardinal symptoms (tremor, bradykinesia, and rigidity) of PD. There is an impression that the STN stimulation appears to be superior to the Gpi stimulation, but thus far, no prospective randomized data exist for comparison of the two sites.

Not all people with P.D. require surgery. In fact, the vast majority do not require surgical intervention. Prospective candidates must have a diagnosis of P.D., have undergone optimization of medication regimen or who are intolerant to medications due to side effects, not experience significant disability or who have moderate to severe dementia..

Improvements are seen in disabilities related to either "off" period symptoms (tremor, rigidity, bradykinesia, muscle cramps associated with off-dystonia etc) that are responsive to Sinemet, or "on" period symptoms (e.g., dyskinesia) that are induced by dopaminergic drugs. When such symptoms threaten one's independence or livelihood, the risks associated with surgical interventions are often justified.

DBS surgery is a time consuming and tedious procedure that requires extensive cooperation from an awake patient during the surgery. Often the benefits of surgery are delayed and require more frequent postoperative visits for stimulator adjustments. Thus, prospective patients should be in good medical, physical, and mental condition to tolerate the surgery and postoperative care.. Optimal outcome requires significant effort from the patients. Therefore those patients with untreated or under-treated mental illnesses (e.g., depression, schizophrenia, etc.) are excluded from the surgery.

Surgery

STN DBS surgery is often performed bilaterally. Both sides are usually implanted at the same time. In somewhat frail patients, each side is performed separately often months apart for recovery from the initial surgery.

On the day of surgery, a stereotactic frame is placed on the patient's head under local anesthesia. The patient then undergoes MRI and CT examination of the head with the frame in place. The surgeon will use the information obtained from the imaging studies to plan a surgical target. This imaging step takes approximately 1 hour (it may be variable depending on the surgeon). Following the studies, the patient will be moved to the operating room. The patient will be placed in lounge chair position in the operating room. Hair will be shaved and under a heavy sedation, two small burr holes will be placed on the skull. Microrecording system will be mounted to the head frame and the surgeon will perform mapping of the brain to accurately localize the brain target. This process may take 2 to 3 hours. During this part, patient is awake and will be asked to report various sensations and movements. Once the localization is completed, then permanent electrodes are placed into the brain targets. The electrodes are then anchored to the skull and the wounds are closed. The frame is then removed and the patient discharged from the operating room. The patient usually spends 1 or 2 days in hospital for test stimulation and postoperative MRI imaging. The patient is readmitted after 1 week and under general anesthesia, battery packs will be placed under the collarbones. After an overnight stay, the patient will be discharged for convalescence. Programming of the DBS will begin 1 month after the surgery. Adjustments of electrical stimulation and medications are usually made on a monthly basis until optimum setting is achieved. The implanted batteries usually last 5 years depending on stimulation parameters.

Outcomes from STN DBS

The surgery has been shown to be effective for all of the "off" symptoms of PD that were responsive to preoperative Sinemet. Rigidity, bradykinesia, tremor and gait difficulties improve by 40 -60 % in many studies. There is often a marked decline in "on/off" fluctuations, total duration of "off" periods, and "off" dystonia or painful leg spasms. The surgery also decreases the severity of "on" dyskinesia. Most patients experience approximately 50% reduction in PD medication intake. It is generally ineffective in improving "on" state function (i.e., If a patient was wheelchair bound before the surgery even at the best of times, then one would not be walking independently after a successful surgery).

Outcomes from Gpi DBS

The benefits of the surgery are similar to those of STN DBS. The degree of improvement appears to be somewhat less than that of STN. The "off" symptoms have been shown to decrease from 20 - 45%. Improvement in "on" dyskinesia appears to be greater with Gpi than STN DBS. Patients generally require the same amount of medications after the surgery as before the surgery. Also the battery use appears somewhat greater with Gpi stimulation than STN. The only real advantage of Gpi stimulation over STN DBS appears to be in the postoperative DBS programming, which is less problematic with Gpi than STN.

Risks of Surgery

Most DBS procedures are associated with a 1 - 2% chance of devastating intracranial hemorrhages. These hemorrhages are usually lethal or, if one survives, lead to permanent severe neurological deficit including coma, hemiplegia and language impairment. The surgeries are also associated with a 5 - 10% rate of less severe complications including those related to hardware (e.g., infections and breakage). One of the most common transient side effects of surgery is postoperative confusion. This is present in up to 40% of the patients in the immediate postoperative period. It is frightening to unprepared family members, because the patient can be quite agitated, confused and hallucinating. This is short-lived usually lasting 2- 3 days but can last up to weeks. Most patients experience some degree of tingling, numbness, muscle contractions, visual blurring, or lightheadedness associated with stimulation. These stimulation-induced side effects are usually well controlled by adjustments in stimulation parameters. Rarely, a patient will show severe sensitivity to stimulation manifested by violent involuntary movements of extremities, similar to dopa-induced dyskinesia but more severe (hemiballism). Again, this side effect is usually stimulation-induced and can be controlled with alteration in stimulation parameters. These patients will require a slower increase in stimulation parameters than the usual PD patients.

Rarely, DBS stimulation has been shown to worsen existing depression - it is usually associated with stimulation of the electrode in the deeper brain structure and corrected by using an alternate electrode. Permanent cognitive decline is rare except in those with existing dementia or in the most elderly patients. Temporary blunting of affect and a slightly withdrawn personality are often seen in the first 3 months of surgery but permanent changes are rare.

Other Considerations Family and social supports

For the most successful surgical outcome, a strong and committed family and social support is mandatory. Patients are often elderly and frail and require close supervision and assistance postoperatively. Temporary rehabilitation or nursing home facilities may be necessary. Also in contrast to other surgeries, the beneficial effects of surgery are obtained with resumption of electrical stimulation. Optimization of electrical stimulation of DBS requires multiple monthly visits to the physician's office for programming sessions. These sessions are usually very short visits where various electrical stimulation parameters are adjusted but can last several hours especially the very first programming. Medication adjustments are usually made at each programming session. Since the patients are usually debilitated, extensive family or social support are needed to realize the postoperative care.

Economic Considerations

STN and Gpi DBS procedures are approved by the FDA and covered by Medicare and thus by other US insurers. Due to the significant costs associated with the medical devices implanted, in excess of $30,000.00, the insurance co-payments can be significant and should be investigated before the surgery. Also expenses associated with frequent trips to the physician's office associated with programming should be considered before the surgery.

The most important consideration is the patient's expectation of the surgical benefit. It is important to have a realistic expectation of the surgery to avoid postoperative disappointments despite a successful surgery. It is important to recognize that no two patients are the same and therefore postoperative benefits are not the same. Equally important is recognizing the risk associated with surgery. Too often patients are only concerned with the anticipated benefits and ignore the risks. For this reason and others, a frank discussion of surgical benefit and risks should take place with the medical team and the patient and his or her family.

Taken from MPF The Messenger Newsletter, June 2002
Frederick Junn, M.D., Neurosurgeon, Oakwood Hospital - Dearborn, MI
Member, MPF Professional Advisory Board

 

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Contributed by: Michigan Parkinson Foundation and MPF Professional Advisory Board

Overview

Since the 1960s, much research and study has contributed to the development of new treatments for Parkinson's disease. Although there is no cure, a variety of medications are available to control symptoms. Rehabilitation therapies are frequently used to improve function. Mental health consultation may additionally be called into use. For some, if medication management is no longer effective, surgical options are a possibility. Some people opt to enter research studies.

As the symptoms of Parkinson's disease vary from individual to individual, so does the treatment. What works for one individual, may not work for the next. The one constant is that treatment changes over time. Each person with P.D. needs to be individually evaluated with a regimen developed specifically to meet his or her needs. Family involvement is very helpful. Recommendations will change over time, as P.D. is a progressive disorder, and treatment will depend upon the person's symptoms. Finding a physician who is knowledgeable about the treatment of P.D. and with whom you can communicate is essential in effectively managing your Parkinson's disease. Learning how to monitor your responses to medication and other therapies is an important role the person with P.D. and family needs to learn. Dealing with Parkinson's disease requires patience and a good working relationship with the health care team.

Staying Healthy

Your overall health is important in maintaining optimum wellness. A healthy lifestyle contributes to your sense of well-being and is your first line of defense against illness. Managing the symptoms of Parkinson's disease can be a "career" in itself and you may overlook general health concerns. Care partners may also neglect their own health needs when a family member has care needs.

Here are ten healthy living tips:

  • Have routine health check-ups.

  • Exercise regularly.

  • Be on the alert for signs of stress and learn ways to manage them before distress takes over.

  • Eat a well-balanced diet.

  • Get adequate sleep and relaxation.

  • Maintain connections with others and the world around you.

  • Stay as active and involved as you can.

  • Be the "captain of your ship," by finding a competent physician with whom you can relate.

  • Learn to ask for help from others.

  • Educate yourself on your condition - knowledge is power.

  • Keep a sense of humor.

 

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Akinetic-rigid syndrome: A syndrome, or collection of systems, consisting of lack of movement (akinesia) or reduced movements (hypokinesia), slow movements (bradykinesia), and stiffness or rigidity (involuntary resistance to movement). The rigidity is of a type called cogwheel rigidity.

Basal ganglia: A group of nuclei, or clusters of nerve cells, near the base of the brain that is important in regulating both movements and emotions.

Bradykinesia, hypokinesia & akinesia: Bradykinesia means slow movements. Hypokinesia means reduced movements and generally refers to making smaller movements than intended, such as the small steps seen when a Parkinsons patient walks, or the small size of a Parkinsons patient's handwriting (called micrographia). Akinesia means lack of movement.

Cogwheel rigidity: " A type of rigidity in which, when a patient's limb is moved by the examiner, it resists and gives way in small, step-like movements as if it was being controlled by a cog-wheel.

Dopamine: One of a number of chemicals used by nerve cells as neurotranmitters. Messages are carried electrically along individual nerve cells but signalling from one nerve cell to another is usually accomplished by releasing a neurotransmitter chemical. Dopamine is the main neurotransmitter of the nerve cells which die off in Parkinson's disease.

Dysarthria:  soft voice or inarticulate speech.

Dyskinesia:  Abnormal writhing movement of voluntary muscles.

Dystonia:  Involuntary spasms of muscle contraction that cause abnormal movement and posture.

Epidemiological studies: Statistical studies of the occurence of diseases in populations and environments.

Familial Parkinsons: Some unusual forms of Parkinson's disease run in a few families. Abnormal genes have been identified in some of these families, but abnormalities in these genes are NOT found in most patients with Parkinson's disease. Alpha-synuclein and parkin are the proteins coded for by genes identified as being abnormal in some familial forms of atypical Parkinson's disease. Normal alpha-synuclein is also the major protein in Lewy bodies, the pathologic inclusions found in typical Parkinson's disease. The normal functions of alpha-synuclein and parkin are not yet clearly established.

Freezing:  Temporary inability to move.

Levodopa:  Levodopa was the first major breakthrough in the treatment of Parkinson's disease.  Levodopa is used by the brain to produce the chemical dopamine, which is deficient in persons with PD. The neurotransmitter is converted by the neurons in the brain into dopamine, which is stored within the cells until needed by the body.

Neurodegenerative Disease: A disease in which nerve cells in the brain or spinal cord (central nervous system, CNS) progressively die or degenerate.

Neuron:  a cell that generates or conducts electrical impulses to carry information from one part of the brain to another.

On-off phenomena:  sudden, unpredictable changes in motor performance by people on levodopa therapy.

Parkinson's Plus diseases: These are neurodegenerative diseases which cause the akinetic-rigid syndrome or parkinsonism PLUS additional symptoms not usually seen in Parkinson's disease. These diseases are progressive supranuclear palsy or PSP, corticobasilar ganglionic degeneration or CBGD, and multiple system atrophy or MSA, which includes Shy-Drager Syndrome, olivopontocerebellar atrophy or OPCA, and striato-nigral degeneration.

Pathology of Parkinson's disease: Examination of brain tissue from Parkinson's disease patients under the microscope shows loss of the dark-colored dopamine-producing nerve cells in the substantia nigra pars compacta and appearance of Lewy bodies, abnormal small round clumps of protein and other materials which are rarely seen except in Parkinson's disease.

Postural reflexes: Postural reflexes are the involuntary movements people automatically make to maintain their balance when standing and walking. Impairment of the postural reflexes causes poor balance and a tendency to fall.

Resting tremor: Tremor is a rythmic movement or shaking of any part of the body. The tremor of Parkinson's disease is called a "resting tremor" because it is present when a limb is at rest and may be reduced or go away when the limb is held up or otherwise used by the patient. Most other types of tremor are reduced or absent when the limb is at rest and relaxed.

Striatum: A region of the brain made up of two nuclei, or clusters of nerve cells, the globus pallidus (which means "white ball") and caudate (which means "tailed"). These two nuclei are part of a group of nuclei called the basal ganglia, which is important in regulating both movements and emotions.

Substantia nigra: This literally means "the black substance" and is a region in the brainstem (where the spinal cord joins the brain) where there is a group of dopamine-producing nerve cells, which appear darker than the surrounding tissue. The dopamine-producing nerve cells are in the pars compacta (meaning "compact or dense part"). There is another part called the pars reticulata ("speckled part").

Edwin B. George, MD, PhD., Wayne State University School of Medicine, 2003

 

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When you visit your neurologist, there are several things that regularly occur: forms to fill out, lots of questions and, usually, a neurologic examination.

Do you ever wonder what neurologists are really doing to you during your physical exams and what they are looking for?

In general, the neurologic exam concentrates on several specific areas: mental status, cranial nerves, motor function, sensation and reflexes.

Depending on whether it is your first visit or a routine follow-up visit, the exam's length and complexity may vary. It actually begins before you realize it!! The neurologist checks the forms you filled out to see if the handwriting is small or shaky, then closely observes you during the initial interview - is there a lack of facial expression, a lack of movement of one arm or leg, a tremor and is the voice loud or indistinct? Often the diagnosis of Parkinson's disease is reached within the first minute or two the neurologist is in the room.

Then the neurologic examination begins. Although the exams performed by different neurologists vary widely, and also from one visit to the next, there are certain things a neurologist checks to determine the diagnosis (is it Parkinson's disease?) or to see how well you are responding to medication.

Mental Status: During the interview, and often with additional questioning, us¬ing standardized tests of cognitive function, the neurologist assesses your memory, concentration skills, language skills and orientation.

Gait: Usually you are asked to walk back and forth, on your toes and heels, then in a straight line. Observing whether you swing your arms normally or not may provide an early tip-off to the diagnosis of Parkinson's disease. You may be pushed or pulled to see how well you can maintain your balance (postural stability). You also watched to see if you have trouble rising from a chair and whether you stand straight or stooped.

Cranial Nerves: The cranial nerves are those that supply the eyes, face, ears, mouth/tongue and neck. A lack of facial expression (masked facies) may be noted, but there can be certain abnormalities that indicate a diagnosis of something other than typical Parkinson's disease (an inability to normally move the eyes, for example).

Motor Function: During this portion of the examination, your doctor checks your strength, pulling or pushing your arms and legs, comparing one side of the body to the other, and seeing if there is a difference between the upper and lower limbs. Your doctor will also move your arms and legs while you relax, to decide if there is increased tone or stiffness. (In Parkinson's disease we are looking for "cogwheeling," which is a type of stiffness with a "ratchety" feeling.) The speed of your movements is also examined: you are often asked to hold your arms in front of you and rapidly move them from "palm up" to "palm down," something called "rapid alternating movements." Additional maneuvers may be performed, such as finger tapping and repetitive "hand opening-closing," looking for bradykinesia (slowness of movement). The speed of these rapid movements often helps in making the diagnosis. It is important to note whether the abnormalities are worse on one side or the other.

The search for tremor actually continues throughout the entire time with your doctor. A tremor observed while a person is sitting quietly is known as a resting trem¬or and is the most typical type seen in PD. Often, this tremor is visible while you are walking, and is also called a "pill-rolling" tremor, named after the movement that an old-time pharmacist would make as he created a pill between his fingers. Tremor can also be seen with certain activities (holding objects, writing, etc.), and may or may not be seen in PD. Often you are asked to hold your arms outstretched, or to touch your finger to your nose.

Sensation: The sensory exam consists of being poked with a pin, lightly brushed with cotton/tissue, or asked whether you feel a vibrating tuning fork, or if a finger or toe is moved upward or downward. Again, the physician wants to know whether you feel these sensations equally on both sides of the body and whether it differs between how it feels in your feet/hands (distal sensation) or closer portions of the limbs (proximal sensation). This portion of the exam is probably the least important in the diagnosis of PD. However, certain abnormalities might be clues to a different neurologic disorder.

Reflexes: Here the doctor observes how your limbs react to being tapped with a reflex hammer (deep tendon reflexes). In particular, are the responses equal on both sides and are they increased or decreased in a particular pattern? Another very important reflex commonly tested is the plantar reflex, when the bottom of your foot is stroked unpleasantly to see what direction your toes move. This is one of the most important tests in neurology. If the toes move upward in a specific way, it is known as a "Babinski sign." This is not usually seen with PD, but may indicate another disorder.

The neurologic examination remains the most accurate way to diagnose Parkinson's disease, coupled with the history that you give. Testing is generally not required to make a diagnosis, but is occasionally ordered to rule out a different diagnosis, if there are unusual features noted during the exam. Remember: the length of the neurologoc exam may vary from visit to visit, with the initial consultation generally being the most extensive examination, and follow-up visits being shorter. When it is only a brief office visit, only a few things may be tested to decide if medication is helping, or if changes are required. While the examination is very informative and can usually result in a definite "yes" or "no" to the question of whether you have PD, some of you may have experienced exams where the neurologist is not certain and asks you to return in a few months or a year to see if your physical exam changes.

Despite all the advances that have been made in the field of neurology, the examination remains essential.

Neurologist Dr. Glen Ackerman, M.D., is a past Chairman of the Michigan Parkinson Foundation Professional Advisory Board and is a cur¬rent Member. He is Assistant Professor of Neurology, Michigan State University School of Human Medicine and School of Osteopathic Medicine, and is Head of its Movement Disorders Clinic.

 

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Frequently Asked Questions (FAQs) on Social Security and SSI Disability

Source: J.B. Bieske bieske8100@sbcglobal.net
Business or Firm: J.B.Bieske and Associates
Address
: Box 1007 Warren, MI 48090
Phone
: (586) 977-8100
Description
: FAQs regarding SSI Disability Claims
Category
: Text
DATE STAMP
: 08-Mar-04
Source Event
: Attorneys Forum (08-Mar-04)

WHO IS ELIGIBLE FOR SSI BENEFITS? ??

A person with a physical for mental condition which prevents him/her from working on a full-time basis A person need not be physically confined to a bed or wheelchair to receive benefits.

A retired person on a pension from a Company, which has paid into a Social security program, may apply for Social Security Disability benefits.

A person receiving Workman's Compensation is eligible to apply.

A person receiving disability from a private insurance company is eligible to apply.

HOW DO I APPLY?

Go to any Social Security office or call (800) 772-1213 for request an information packet and to schedule an interview. Review the information packet and bring the requested information to the interview.

During the interview, your work and health history will be presented and reviewed. At he conclusion of the interview, if you choose to do so, a disability claim will be initiated on your behalf.

Over the next few months, the Social Security Administration will evaluate the information you provided, along with additional information solicited from your physicians, clinics and/or hospitals.

During that period, you and/or your physician(s) may be asked for additional information. You may also be required to undergo a physical exam by a Social Security Administration-certified physician.

A decision will be made, usually within 120 days, to approve or reject your claim. You will receive a written notice of the decision.

WHEN DO I NEED AN ATTORNEY? 

If your initial claim is rejected, you should contact an attorney to assist in fling an appeal. Usually this requires a submission of a legal brief and a judicial review.

It is possible to win a legal appeal on a disability claim many years after a person has stopped working. Disability benefits are received by persons who are also receiving:

  • A retirement pension
  • Worker's Compensation benefits
  • Disability benefits from a private insurance company

HOW ARE ATTORNEY'S FEES AND EXPENSES PAID?

Most attorneys in this area are compensated with a portion of the past due (lump sum) benefits, which is not paid until the case is won (contingency).

Usually, attorney's fees are a percentage of the past due (lump sum) benefits, and only if the appeal is successful. Expenses are generally low in cases of this type. Confirm payment terms with the attorney in your initial discussion.

 

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  1. Understanding Parkinson's Disease (PD) And Its Care
    1. Generalities
    2. What This Guide Is and Isn't,
    3. Getting the Best Medical Care for Your PD
    4. Goal of Symptomatic Treatment of PD
  2. Treatment and Functional Issues - Medications for PD
    1. Anticholinergics
    2. Amantadine
    3. Dopamine Agonists versus Sinemet® as Initial Treatment
    4. Dopamine Agonists
    5. Sinemet® (levodopa-carbidopa)
    6. Dopamine-mediated Side Effects
    7. Wearing-Off Effects
  3. Functional Issues in PD
    1. Freezing and Falling
    2. Speech and Swallowing
    3. Occupational Therapy
    4. Constipation
    5. Urinary Difficulties
    6. Sexual Function
    7. Depression
    8. Sleep Disturbances
    9. Dementia
  4.  Surgery for PD

 

  1.  
    1. Understanding Parkinson's Disease (PD) And Its Care

      1. Generalities

        PD is a disorder of some parts of the brain that control movement. One major area of involvement is the substantia nigra, in the rear part of the brain (midbrain). It is there that, for reasons we are still trying to discover, nerve cells in PD stop functioning normally and some cells die prematurely. Because of the usual slow worsening of PD, there are still enough working nerve cells to be able to respond to medications and surgical treatment for a long while.

        We'd all like to prevent continued loss of nigral and other nerve cells in PD with "neuroprotective" medication treatment, and several groups in Michigan are involved in a long-term NIH study of such potentially useful drugs. However, results of such studies will take several years to be known, and our concern here is to address the practical, symptomatic treatment of PD for patients whose illness has interfered with work- and/or home-related activities most of the time. This covers the spectrum of disability we'd call moderate-advanced.

      2. What This Guide Is and Isn't

        This is a general review of current concepts and practices regarding PD evaluation and treatment. Inevitably, statements made will reflect personal opinions and approaches, not buttressed here by citations from the medical literature. The statements must not be taken as reflecting what is happening to any particular person medically, or what's best for a particular person's treatment, now or in the future. The offering of this guide is not "practicing medicine" via informational exchange by website. The practice of medicine occurs when an individual consults a physician to obtain a diagnosis and treatment plan specifically for him or her. That's not what this guide can or should do, and it is no substitute for an individual consultation or an ongoing medical relationship between a doctor and a patient.

        Medication doses or dose ranges are best dealt with at the individual doctor-patient level, addressing the need presented by particular clinical situations. The effects of treatment can vary enormously, and much telephone and clinic time is spent sorting out risks, benefits, side effect possibilities, alternate treatments, etc. This is the art of medicine. The desire to help people drives the passion.

      3. Getting the Best Medical Care for Your PD

        The best model for care of any chronic medical disorder is to have a trusting, working relationship between patients, caregivers, doctors, nurses and other health professionals. Practically, this means having patients benefit from the expertise of the medical team and having the medical team benefit from the experience of patients as they try to create an effective treatment plan together. It means having as frequent contact between these individuals as is really needed to optimize care. This may be by phone calls, clinic visits and, in some instances, by e-mail or letters. It will vary, depending on the needs of patients and the needed availability of the medical team. The following points, through many years of experience, are most important:

        • Get the right diagnosis and treatment. There are various forms of parkinsonism, aside from PD itself, which may evident early on, or only with the passage of time (e.g., multiple system atrophy [MSA], progressive supranuclear palsy [PSP], vascular parkinsonism [due to strokes]), and others. Such other illnesses may require various studies to diagnose or different treatments to be most helpful. A neurologist with expertise in movement disorders is best poised to make a definitive diagnosis and recommend treatment in this field, especially when the answers are not straightforward. Seek out such an opinion if your general doctor or neurologist cannot either make a diagnosis or, after a reasonable period of time and trials of treatment, can't help enough. However, don't assume that having a medication side effect means either that the doctor doesn't know what you have, or doesn't know how to treat it.
        • Get enough time with the doctor or nurse to review details of how you're coping with daily activities in light of the anti-PD medication and other drug(s), doses and their timing, that you're taking. For those who are getting deep brain stimulation (DBS) as well, careful review of the electrical settings is also critical.
        • Patients and caregivers often misunderstand verbal treatment directions, especially those that are complex. Be sure that you have understandable, written instructions.
        • Important reasons for drug treatment "failure" may be that too little was either prescribed or taken. The latter may be because the timing of doses was impractical or ineffective, or that side effects may have developed and not brought to the attention of the medical team.
        • You need to learn about PD to be a full partner in your care. Good doctors welcome that. There are several well-written books and pamphlets on the subject; ask the Michigan Parkinson Foundation staff about them. The internet can be helpful, but remember that it's a worldwide, uncensored bulletin board, not a "truth machine", so that what you get can span the gap between potentially misleading or unsubstantiated claims to truly high quality reviews of our current understanding of PD and its treatment. Among the latter are offerings on the websites of the Parkinson's Disease Foundation, National Parkinson Foundation and the American Parkinson's Disease Association.
        • Remember, it's your life and you should live it to the fullest possible extent. PD is not your life, but some hurdle to cope with courageously, getting the help you need from loving family, friends, your religious community, health professionals and others. People want to see you do well. Speaking personally, nothing is more gratifying than to see patients make small gains or great strides as they live a meaningful life.
      4. Goal of Symptomatic Treatment of PD

        What is the goal of treatment in PD? It is the individualized crafting of a plan of care that allows each patient to get and maintain the best function that he/she can with few or no side effects of therapy. Because each plan is individualized, the ultimate functional outcome will vary, depending on the severity of the illness, as well as patients' ability to benefit from, and to tolerate, adequate doses of medications, DBS (if appropriate), as well as physical, occupational and speech therapy. We need to be realistic about what is achievable, and this may have to be revised as time goes on. Generally, we offer as few drugs, and as little of them, as patients need to be as functional as possible. Whenever possible, new drugs are introduced at low doses, and at a suitable, individualized pace, in order not to give more than is needed, as well as to limit potential side effects.

        Not every symptom can, or needs to be, treated. Some symptoms are relatively minor, particularly when considering whether an otherwise effective treatment plan would have to be overhauled, complicating daily life unduly for unclear potential benefits. This is an important part of the cooperative realism that patient and doctor must discuss.

    2. Treatment and Functional Issues - Medications for PD

      1. Anticholinergics

        These drugs include Artane® (trihexyphenidyl) and Cogentin® (benztropine). They are useful for treatment of tremor of a hand or foot at rest, i.e., when supported, not when raised up or during action. They give little or no benefit for bradykinesia (slow movement), muscular rigidity (stiffness), or gait imbalance.

        Neither drug should be used in those with dementia (loss of memory, other cognitive function), or in those with glaucoma, prostate enlargement, visual blurring, rapid heartbeat, or excessive constipation.

        If a patient develops mental confusion, with or without visual hallucinations (seeing visions), while on them, they may need to be discontinued.

      2. Amantadine

        The drug is used either as a mild agent to help tremor, bradykinesia and rigidity, or to decrease choreic (jerky) limb dyskinesias (involuntary movements) due to excessive dopaminergic (dopamine-promoting) medications. Amantadine is usually well-tolerated, though it can cause foot or leg edema (swelling) and a leg rash that looks like a red roadmap, called livedo reticularis. Among demented individuals, it alone can be responsible for mental confusion, and/or hallucinations.

      3. Dopamine Agonists versus Sinemet® as Initial Treatment

        Recent data suggest that dopamine agonists (dopamine-mimicking drugs), may be used before Sinemet® (levodopa-carbidopa) to get adequate motor benefit, and that such benefit can persist in many patients for years. Moreover, unlike with Sinemet®, drug-induced motor fluctuations ("wearing-off" or "on-off" impairment of mobility between doses) are less likely with the agonists. For this reason, if a patient's condition permits it, an agonist may be a better initial choice than Sinemet®. However, more severely disabled patients may need Sinemet® from the start. Most patients with advanced PD will need both an agonist and Sinemet® (see below).

        There are data that suggest that there may be a neuroprotective action of Requip® and Mirapex®, but this is an area of controversy. Further research is needed.

      4. Dopamine Agonists

        These drugs act on nerve cells in the brain that respond to dopamine, the major signaling chemical (neurotransmitter) that is low in PD. By stimulating the dopamine receptor (signal receiver), dopamine agonists act as though they were dopamine, and they activate the nerve cells they stimulate. In so doing, they improve motor function. However, they are not as powerful as Sinemet®.

        The agonists were developed over many years, with Parlodel® and Permax® introduced earlier, and Requip® and Mirapex® becoming available more recently. All are potentially effective drugs, depending on whether a particular patient can tolerate enough medication to improve mobility adequately. The agonists have not often been tested directly against one another in clinical trials, but have either been tested against placebo (no effective drug) alone, or as additions to a Sinemet® regimen. One has a general impression of rough equality of efficacy among the agonists, if adequate doses of drug can be given, but it is possible that some patients may benefit from one or another to a greater extent. Only individual trials of medications with patients can establish that, however, and if a particular agonist is effective enough, it is unwise to try another. If sufficient side effects appear, though, a trial of a different agonist may be warranted. Any of the agonists may produce side effects, often having a similar dopamine-mediated motor and mental character (see 6, below).

      5. Sinemet® (levodopa-carbidopa)

        This drug is accepted as the gold standard for symptomatic PD treatment, i.e., the most powerful one against which clinical effectiveness can be measured. Its introduction by the late Dr. George Cotzias and colleagues in 1967 was a watershed event in neurology, and one which brought great hope and functional benefit to patients with PD everywhere.

        It used to be that nearly every patient with PD was begun on Sinemet® as soon as the diagnosis was made. However, many movement disorders neurologists today reserve that treatment for patients whose mobility, dexterity and tremor we judge will not be sufficiently responsive to either an anticholinergic, amantadine or an agonist, either by mental comparison of our experience with that of other patients, or after a trial of these other drugs sequentially. This is because many patients may benefit adequately from either an anticholinergic, amantadine or an agonist for several years, without the risk of motor fluctuations ("wearing off" or "on-off" effects, between Sinemet® doses) that levodopa treatment typically produces after several years of treatment.

        In practice, as PD advances, most patients will need Sinemet® at some dose to function well. It will often be gratifying to them and to caregivers to see significant improvement, allowing more activities and independence to occur.

      6. Dopamine-mediated Side Effects

        Following patients on Sinemet® or agonists involves balancing the doses needed for adequate mobility against the possibility of inducing dopamine-mediated side effects. Such effects may include:

        • Drowsiness. This can be a dose-limiting side effect, i.e., one which prevents giving as much medication as would be needed to fully treat motor issues in PD. For that reason, it's best to review whether drowsiness is related to giving higher doses of Sinemet® or an agonist, or whether drowsiness is related to too little social interaction. If it is the latter, efforts to get the patient to be more active are very worthwhile.
        • Nausea and vomiting. Taking the drug in mid-meals or with small snacks is the simplest solution. If this isn't successful, a trial of domperidone (available in Canada), about an hour before taking the drug, may eliminate the problem.
        • Lightheadedness (near-fainting) on standing. Decreasing the drug dose and taking one's time when standing, and holding onto solid support, are often helpful. If not, try another drug that is tolerated.
        • Rapid heartbeat. This uncommon side effect should be evaluated by an internist or cardiologist, and may require either reducing or discontinuing an anti-PD drug.
        • Dyskinesias (involuntary bodily movements). These come in two basic varieties: 1) those jerky (choreic) excessive movements that occur after dopaminergic drug(s) (most often Sinemet®), and which almost always mean that too much medication has been taken; and 2) those dystonic (twisting, tightening) movements that occur before the next (most often Sinemet®) dose is due.
        • Jerky, choreic dyskinesias can be controlled either by reducing Sinemet® prior to such episodes, watching for the re-emergence of PD slowing and related disability, and considering adding an agonist to maintain mobility, or by adding amantadine to the existing Sinemet® regimen. It is a fine clinical judgment about which of the anti-PD medications a patient is taking is/are responsible for the side effects seen, requiring frequent phone and/or clinic contact to regulate.
        • Dystonic dyskinesias can often be controlled by increasing the dopaminergic medication a patient is taking before the dystonic episode occurs.
        • Confusional (disorientation), hallucinatory (unreal visions) or delusional (unreal beliefs). Control of these symptoms will, most often, require reducing the number, types and doses of anti-PD medications (e.g., anticholinergics, Eldepryl® (selegilene), others). During this time, adequate medication needs to be taken to maintain mobility, while considering the use of anti-psychotic agents [e.g., first, Seroquel® (quetiapine), then Clozaril® (clozapine)], depending on the severity and frequency of hallucinations and delusions. In some cases, working on these issues closely with a knowledgeable psychiatrist can be of great value.
      7. Wearing-Off Effects

        During the early stages of PD, patients don't notice a difference in motor function between medication (usually Sinemet®) doses. However, in moderate-advanced PD, an increasing number of patients will. They may become slower, stiffer and less coordinated, more tremulous, and have more gait imbalance before the next dose is due. If such disabilities are marked, they may not be able to get out of a chair, get dressed, bathe, or do other activities of daily living without help. Falling may be more likely at such times. This is distressing and potentially dangerous and needs to be dealt with.

        Several choices are available. Though it is possible to increase each Sinemet® immediate release dose (i.e., 10/100, 25/100, 25/250) and/or to decrease the interval between doses, that is not what is preferred. This is because we wish to decrease the likelihood of Sinemet®-related side effects (see above), and to reduce later motor fluctuations. It is possible to add controlled-release Sinemet® (i.e., 25/100CR, 50/200) to the existing immediate-release Sinemet® regimen, but, again, it is desirable to limit total daily levodopa, if possible. This may not be possible in individual cases, however, and the giving of both immediate- and controlled-release Sinemet® is certainly a viable and valuable option for many patients.

        With these issues in mind, it's often best to consider the use of a COMT inhibitor (Comtan® [entacapone], Tasmar® [tolcapone]), or an agonist. COMT inhibitors extend the duration of levodopa (but not agonist) action by preventing breakdown of brain dopamine. Comtan® is easy to use as individual 200 mg tablets, given at the same time as Sinemet® doses, matching the times of the day when wearing-off occurs. The recent incorporation of Comtan® into one pill with Sinemet® (Stalevo®) is suitable for those patients with wearing-off of all Sinemet® doses, but doesn't allow dose-by-dose individuation that using Comtan® alone permits.

        Tasmar® is a highly effective COMT inhibitor, but came under special FDA guidelines when several patients died as a result of unmonitored liver injury. For this reason, Tasmar® may be used only when other medications have been found to be ineffective or not tolerated. If used, blood studies of liver enzymes (SGPT) must be done every two weeks, and even values just above normal must be taken as grounds for discontinuing the drug. There is no such issue with Comtan®.

        The agonists are often helpful in treating wearing-off effects because their duration of action is relatively long (4-6 hours, depending on the drug).

    3. Functional Issues in PD

      1. Freezing and Falling

        Freezing is the sudden loss of the ability to walk forward. It may occur during a wearing-off episode (more commonly) or not, and may or may not be associated with a greater likelihood of falling. At such times, patients may recover if they either focus mental attention on walking, try marching in place or to either side, or get verbal or physical support to walk from someone else.

        Falling is to be feared and avoided, if possible. Hips, arms, pelvises, necks, etc. can be broken and may not be repairable to restore adequate function. Heads can be injured, producing blood clots in or over the brain, requiring surgery.

        Staying mobile, however, is essential. Whenever possible, patients should walk, within their own limitations. Others who can do more, physically, should.

        Certainly, safe mobility must be maintained, whether that is achievable with some combination of medical, physical, occupational or surgical treatment. If these treatment modes alone cannot fully succeed, some form of physical support [i.e., cane, walker, scooter, or holding onto someone or some immovable object(s)] has to be used.

      2. Speech and Swallowing

        These issues are dealt with in detail elsewhere, but several general points are worth making. Communication with others is so important that it may be best to consult with a speech pathologist working with your doctor to optimize your individual function if you cannot be understood. Similarly, swallowing function needs to be evaluated in those patients who are choking on liquids or solids.

      3. Occupational Therapy

        This important area of expertise is offered to patients who need special help to do activities of daily living, including standing, balancing, gait training, bathing and other bathroom activities, feeding, and others. Occupational therapists work well with others in the medical team to optimize function, offering individualized treatment programs.

      4. Constipation

        This is very common, especially among those with moderate-advanced PD. It is because of an illness-related abnormality in the nerves supplying the bowel. It can be made worse by the use of anticholinergic drugs, and these may need to be discontinued if constipation poses a serious problem.

        Patients often benefit from a high fiber diet, increased liquid intake, exercise, and the use of over-the-counter stool softeners. Frequent laxatives or enemas should be avoided, if possible, but these measures need to be discussed with a treating physician.

      5. Urinary Difficulties

        Patients will often notice an increased urgency to urinate, as well as an increased urinary frequency. In men, this may exaggerate ongoing symptoms of prostate enlargement, and such issues need to be clarified with urological consultation. Generally, it is useful to limit fluid intake after supper, and the use of either Ditropan® (oxybutynin) or Detrol® (tolterodine) may be considered.

      6. Sexual Function

        Impotence (impaired erection) in men may occur in PD, as it does in nearly all cases of multiple system atrophy (MSA). One needs to consider the potential role of medications (e.g., beta-blockers, anti-anxiety drugs, anti-depressants, others), and of depression itself, when impotence occurs. Both men and women may experience a decrease in libido, independent of depression.

      7. Depression

        Depression is common among those with advancing PD, affecting as many as 30-50% over the course of the illness. There is often a loss of pleasure in usual activities, decreased desire to socialize, a loss of interest in sexual activity, insomnia, weight loss or gain, increased irritability, and, sometimes, a lesser ability to concentrate and perform other usual mental functions. Think about the possible presence of depression when these symptoms appear and go on for weeks or months. They rob people of the joy in life they otherwise might have and appear to make the motor portion of PD worse.

        It is a common clinical experience that, unless depression is adequately treated with medication at least, and often also with some form of counseling, full responses of PD patients to their medications will not occur. So, not only should depression be treated on humanitarian grounds, but also to help the PD itself. Many experienced non-psychiatrists manage depression well, but some instances are best co-managed with a psychiatrist.

      8. Sleep Disturbances

        Some PD patients will have vivid dreams and/or insomnia because of one or more of their anti-PD medications. Such sleep disruptions may not only awaken the patient and his/her partner, but can also make it impossible to get all the rest that's needed to recuperate enough to do the next day's activities well or at all. In such circumstances, consider with your doctor reducing or eliminating late evening anti-PD medication dose(s).

        We need to realize that some patients will require nighttime doses of anti-PD medication(s) to get out of bed to go to the bathroom, or simply to turn comfortably in bed to rest well. Obviously, this is another individual clinical decision to make, and one that may need revision over time.

        Several years ago, it was reported that some patients may have "sleep attacks" (unheralded, sudden, irresistible sleep episodes) when taking agonist drugs. This remains an area of controversy since it isn't clear that such "attacks" haven't occurred because of another ongoing sleep disorder (e.g., due to excessive daytime sleepiness, depression, other medication effects, etc.). However, although there may be variable explanations for "attacks", the potential occurrence of dangerous sleep episodes (e.g., when driving a vehicle) makes it important to be aware of such a possibility. In my view, a physician should not hesitate to prescribe an otherwise potentially beneficial agonist or other anti-PD drug, and both doctor and patient should be vigilant about this uncommon, possible issue. As with many other therapeutic issues in PD, this needs thorough, individualized attention in a medical setting.

      9. Dementia

        Dementia (loss of acquired cognitive function, including memory) can occur in about 30% of PD patients over the course of the illness. It is not inevitable.

        When dementia occurs, it is important to try to identify the cause, as some 5-10% are potentially reversible, partly or fully. The list of potentially reversible causes includes hypothyroidism (low thyroid), vitamin B12 or folate deficiency, syphilis, subdural hematoma (blood clot over the brain), communicating hydrocephalus (impaired circulation of spinal fluid), and others. Studies to identify these disorders include blood tests (for thyroid [TSH and perhaps others], B12, folate, RPR or VDRL [syphilis], MRI or CT scan of the brain) and, perhaps, a spinal fluid examination for those whose dementia is rapidly advancing or otherwise atypical. Correcting the abnormalities, medically or surgically, will follow.

        The same diagnostic studies, and perhaps others, may be needed to establish the cause of other forms of dementia. Some causes cannot be reversed, including:

      • stroke(s) affecting areas of brain that cause, not PD itself, but both vascular parkinsonism (i.e., signs that mimic the motor effects of PD), often other neurological signs of disability, as well as dementia. Strokes are often seen in brain MRI or CT scans. The consultant neurologist will often want studies done to try to learn why the stroke(s) occurred, in an effort to prevent further damage. Such studies often include MRI of the brain, carotid Doppler ultrasound, echocardiographic ultrasound and EKG. Patients are often placed on aspirin or other medications.
      • Alzheimer's disease is seen more commonly among PD patients with dementia than among non-PD dements. We believe that the two illnesses have shared genetic and/or environmental risk factors, though these have yet to be discovered. There is no specific test (e.g., MRI, PET or SPECT scan, blood or spinal fluid test) that can make the diagnosis during life, and a determination is made by excluding other possibilities. Though AD is irreversible, some mildly-moderately affected patients may benefit cognitively and socially by anticholinesterase medications, such as Aricept® (donepezil), Exelon® (rivastigmine), Reminyl® (galantamine), or other agents.
      • Dementia with Lewy Bodies is a disorder of some PD dements that causes hallucinations when patients are not taking anti-PD drugs, causes variability in cognitive function even within parts of a day, and is progressive. It may appear relatively early in the course of PD, when motor disability is minor. Some patients may temporarily worsen if placed on anti-psychotic medications. Some may benefit from Reminyl® or other anticholinesterase medications.

Whatever the cause of dementia, its management should include having the patient live in a caring, safe, clean and comfortable environment. If possible, living at home is most desirable and least disruptive. Ideally, family, friends or paid help may share the burden of care. If this is not possible, moving a patient, with or without his/her spouse, to an assisted care facility should be considered. If this is unrealistic, a patient may be placed in a nursing home that family members determine provides good care. Often, an experienced social worker will be immensely helpful in reviewing realistic care options and in helping to implement them; most often, these professionals are associated with larger healthcare organizations. Moreover, the Michigan Parkinson Foundation (1.800.852.9781) and the Alzheimer's Diesease and Related Disorders Association (1.800.337.3827) are invaluable resources for caregivers of PD patients who face these difficult challenges.

  1. Surgery for PD

    The advent of functional surgery for PD, especially deep brain stimulation (DBS) of the subthalamic nucleus, has been a major advance in treatment for the right patients in the right medical setting. The subject is covered at length elsewhere, but several points are worth emphasizing:

    • Appropriate patients should be selected. 1) Current evidence suggests that only those who have typical PD will have successful results, not those with atypical forms of parkinsonism. 2) Functional motor improvement is likely only among those who have clear responses to dopaminergic medication. 3) Patients without dementia must be selected because dementia may worsen if present pre-operatively. 4) Patients selected must be willing and able to work with members of the medical team to help regulate both electrical and medication doses in order to optimize their function. They must be full partners in their care. 5) Patients who are selected for surgery need to be in adequate general health. That is, they should not have significant cardiac disease, crippling arthritis, cancer, or other severe conditions pre-operatively.
    • The timing of surgery is important. DBS is something that is offered to patients who have not been able to either fully benefit from, or to tolerate, anti-PD medications, after adequate trials of drugs, including combinations of medications at various doses.
    • The surgical team must have sufficient skill and experience to be able to offer patients and caregivers adequate likelihood of success without undue risk.

Jay M. Gorell, MD, FAAN
President and Former Chairman, MPF
Professor in Neurology, Wayne State University School of Medicine

William T. Gossett Chair in Neurology
Head, Division of Movement Disorders
Department of Neurology
Henry Ford Health System
Former Chairman, Board of Directors
Michigan Parkinson Foundation

 

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Medication management is the cornerstone of treatment for Parkinson's disease. One thing to keep in mind is that medications work best with all other aspects of treatment. It is a supportive therapy, not a cure. You need a treatment plan that takes into consideration a number of factors that work to overcome Parkinson's symptoms. Medications work best when used in combination with rehabilitation therapies and general health measures, such as proper diet, stress management, exercise, and so on..

There are several forms of medication management: The medications used today work in several different ways.

  • Slow progression of the disease. Currently the dopamine agonists have been shown to have some effect in this area.

  • Restore the lost nerve cells. This is a research focus at present, but no agent has been found to be effective to accomplish this task.

  • Treat active Parkinson's symptoms:

    • agents that are dopamine replenishing (Sinemet®)

    • Dopamine releasing (Amantdine®)

    • Dopamine enhancing (dopamine agonists)

    • Increase dopamine absorption

Advancing Parkinson's

When does treatment with medications begin? What agents should be used first?

When one should start taking medications depends upon the individual: how much the symptoms interfere with lifestyle.

What medications should be used first?

It is currently agreed that Sinemet® should be avoided initially. Other medications, such as the agonists, are preferred first. This depends, however, on what your initial symptoms and disabilities are, and how old you are. For example, younger people with Parkinson's may be treated initially with the anticholinergics, such as Artane or Cogentin for tremor. Older people may be started initially on the agonists.

Similar to the treatment of most disease states, the optimal drug therapy for Parkinson's disease is both individualized and based on numerous factors. The choice of medication takes into consideration patient response, short and long-term side effects, possible drug interactions, presence of other medical and psychiatric conditions, as well as prescription insurance coverage.

Tips in taking your medications.

  • Get all the information you can about medications that are prescribed from your doctor, pharmacist or health care professional.

  • Make sure that you doctor is aware of ALL the medications you take, including over the counter medication, herbals, vitamins, etc.

  • Ask questions, as given below, about your medications and how to take them - and keep notes.

    • What is the name of the medication, the dose, and when do you take it.

    • How do you take your medication, such as the time of day, with or without meals.

    • What can you expect from your medication? What kind of symptom relief is to be expected and when? In one day; in two days? How long do you wait before you call you doctor to know if your medication is working as expected? When you start some medications, it may take a while to build up to a "therapeutic dose." You may be started on a low dose and gradually build up to the level you need in order to manage your symptoms adequately.

    • What happens if you miss a dose, or forget to take it at the allotted time? This greatly depends on the medication - so don't assume from one medication to the next.

    • Anticipate situations that may happen to you and ask the doctor how to handle that situation.

    • What side effects are usual for each medication? If you have the side effect, what do you do? When do you call the doctor?

    • You need to recognize side effects. What will the side effect look like?

    • Learn the terms used to describe the side effect, such as dystonia (involuntary movement resulting in a sustained posture of the affected limb, often associated with painful muscle spasms), dyskinesia (abnormal involuntary writhing movement) nausea, vomiting, headaches, ataxia (loss of balance), on-off, discolored urine.

    • What do you do if you experience a side effect?

    • Is there anything you can do to avoid having a side effect?

Are there other medications I need to avoid when taking Parkinson's medications?

Several medications should not be taken when you are on Parkinson's medications. You need to inform health professionals about this, particularly when hospitalized, in a nursing home, or in an emergency room. Some medications frequently used in these settings could create problems for you. Here is a listing that you can print off - put a copy in your wallet.  need to post list of medications

If I am experiencing problems, such as if I have symptoms that are not relieved by the medication or I have fluctuating symptoms, how can I effectively communicate with my physician?

It is not unusual that you may be having symptoms at home and when you have your office appointment, the symptoms are not readily apparent. Your health care provider may not actually see the difficulties you experience. It is a good idea for you to keep a diary for 3 days prior to your office visit, or at times you are experiencing difficulty.

Your health care provider will want to know:

  • What are your symptoms?

  • When your symptoms start?

  • How long your symptoms last?

  • When do you take your medications (with or without meals)?

  • Are you experiencing any stress or anxiety, or are you sick (any special situations you notice)

  • Write down the symptoms you have to keep track of them, including tremor, falls, dyskinesia, and ESPECIALLY when you take which medication, when you sleep (how long), when you eat, and what foods are you eating?

icon Click here for a form you can use to monitor your response to medication and symptoms.

How can I remember to take my medications?

There are several tips that people use to remember to take their medications at the correct time. Here are a few:

  • use medication boxes (you can purchase them at your pharmacy or ask your doctor)

  • use a timer or alarm

  • leave cues in the house, such as notes, or leave the medicine bottle near your phone

  • keep a calendar

  • associate taking your medication dose with your normal daily activities

How important is scheduling?

  • You want to develop a regular schedule and stick as close to it as you can.

  • If you're feeling good, don't take less.

  • Look at what your medication is designed to do - you're not always trying to treat the acute problem. Keep a routine of when you are taking your dose, realizing that you will have ups and downs. Taking more is not always better. Symptoms may fluctuate and your response to medications may fluctuate over the course of the day and from day to day.

  • One of the biggest problems is not being able to count on your medication working to control symptoms all of the time.

You need to "get tough" - try not to let changes affect you. Continue to function in a manner you're accustomed to. DON'T GIVE UP.

There may be challenges when you are initially started on a medication, when your medications are adjusted or when a medication is to be discontinued.

Other Tips:

  1. Make sure you take the entire dose of your medication. Drink a full glass of water with each dose.

  2. When you go out, take a dose of medication with you so you will not be caught without it if you are away from home longer than expected.

  3. Store your medication in a clean, dry place that is not too warm or too cold. Don't leave your medication in a glove box during the summer.

Other information on medications:

Medication Assistance Programs

Contributed by:

Richard Berchou, PharmD, Wayne State University School of Medicine
Member MPF Professional Advisory Board
and
Debby Orloff, MPH, BSN, RN
Chief Executive Officer, Michigan Parkinson Foundation

 

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