HOW IS PARKINSON'S DISEASE TREATED?

Overview.
Staying Healthy.
Medications.
Surgical Options for Parkinson’s Disease
Rehabilitation Therapies

Overview

Over the last twenty years, 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.

Medications

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 (Comtan®)

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.

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?

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:

For information on research trials: http://clinical trials.gov
For information on cost of medications: www.costco.com (go to pharmacy)

Medication Assistance Programs

www.needymeds.com
www.state.me/uus/dhs/beas/medbook.htm
www.phrma.org

Surgical Options for Parkinson’s Disease:

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 Messenger, June 2002
Frederick Junn, M.D., Neurosurgery Associates – Oakland, Royal Oak, MI
Member, MPF Professional Advisory Board

Rehabilitation Therapies

Symptoms of Parkinson’s disease 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:

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
Member, MPF Professional Advisory Board

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
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
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