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Tags >> Managing PD

Kara LaMarre, Support Group Facilitator for the Alpena Parkinson Support Group and Debby Orloff-Davidson, MPF CEO

Living alone has its advantages. There's no one to clean up after. You can do as you please when you please. There is a downside however, especially if you have to deal with issues associated with Parkinson's disease, such as freezing and falls.

At our recent Annual Facilitator Training Program, a panel of five individuals gave their insight into living alone as safely and as independently as possible with Parkinson's disease. Peggy, Doug, Jeannie, Jonathan, and Nona, who live in both urban and rural areas, provided practical ideas for persons living in their home without the benefit of having a companion to aid them when a need arises.

Doug has organized his house - and himself - to conserve energy and perform tasks. He has motion sensors that turn on lights in each room as he enters. He hangs a tennis ball from the ceiling in the garage, so when he pulls his car in and the tennis ball touches the window, he knows he has parked correctly. He eliminates the need for daily cleanup of the bathroom sink by using an electric shaver and toothbrush while taking his shower. Doug also uses plastic cups and bottles to avoid problems with breakage. Doug feels strongly that organization and planning ahead greatly reduce incidences that may cause problems for him.

Peggy spoke of safety concerns not only for her as a person with Parkinson's disease but as a woman living alone as well. Keep records in case of emergency, such as contact information, a listing of medication including time you take them and dosage, as well as contraindicated medications. Peggy is also very active in her community with volunteer, genealogy, library and civic obligations. If Peggy doesn't show up, someone is looking for her.

Wearing a medical identification bracelet or carrying a card helps to identify what condition(s) one has. Local fire and police departments, Councils or Commissions on Aging and hospitals have developed programs to provide appropriate emergency care at home. When a rescue team is called, it is important to have easily accessible information about your condition in order to assist you quickly. The Petoskey area Retired Senior Volunteer Program (RSVP) promotes the Vial of Life program. An individual fills out a form with vital medical and emergency information and places it in a magnetic holder that attaches to the refrigerator. Many individuals have contacted their local law enforcement, emergency medical service or 911 operations to provide them with information so responders are made aware of the caller's Parkinson's or live alone status. A strong recommendation from the entire group was to familiarize yourself with what services your local community provides to those with special needs.

Other tips for emergency situations include keeping a phone in each room or a cell phone in a fanny pack, preprogrammed with important contact numbers. Inform others of your schedule so they can take action if they have not seen them in accordance with your daily routine. Nona and Jeannie stated a family member or a friend is usually checking in with them with a friendly phone call. Neighbors keep a watchful eye on them which is helpful most of the time!

Everyone agreed that you need to arrange with someone to be your advocate, whether this is a family member, a friend, or a professional. A Durable Power of Attorney (DPOA) is a legal document that dictates that a designated advocate or successor advocate shall have power to make care, custody and medical treatment decisions for you in the event you become unable to participate in medical treatment decisions.

Home safety is important to everyone. An in-home safety assessment can be performed by an Occupational Therapist with an order by your physician. Lucy Kenyon, OTR, from MidMichigan Health Park in Mt. Pleasant, encouraged everyone to investigate the variety of equipment available through medical supply companies and catalogs. She noted that bathrooms can be the most dangerous rooms in the house in terms of falls. Equipment such as shower chairs, toilet risers, commodes with arms and legs, grab bars, non-skid mats, and hi-low tote bars can be very helpful. It is important to eliminate clutter and furnishings, such as area rugs, coffee tables and electrical cords, which would promote falls.

If you do not have someone to help you to dress, a variety of dressing aides can be purchased such as a dressing stick, reachers, and grabbers, elastic or coiled shoe laces, and long or fold-up shoe horns. Velcro can be used in place of buttons and snaps. Many people wear pullover shirts and pants with elastic waistbands.

Getting up from a chair or getting out of bed can be problematic. It is important to sit in firm chairs with arms. Placing cushions on the seat or a raised platform under the chair legs to raise the height can be helpful. Frames can be placed on the bed to assist in getting out of bed. In this way, you can rise without the assistance of another person. A Physical Therapist can make recommendations to help you to move from one position to another.

Being able to take care of finances is also important. If handwriting is a problem, the computer can be useful. Some people have their checking account on their computer. Signature stamps can also be purchased.

Being centered and promoting a feeling of calmness helps Jonathan deal with his disruptions from P.D. If he is having difficulty with symptoms such as freezing, gaining control over his emotions helps him to deal with the problem he is experiencing. Creating the inner peace to contend with symptoms rather than reacting to them is very important.

There were many suggestions for dealing with freezing episodes, which seemed to be one of the most problematic symptoms to cope with while alone:

  • Try stepping or rocking backwards then forwards.

  • Step over an imaginary line

  • Count to 10

  • Say "MARCH" to yourself

  • Sing

  • Throw something on the ground to step over, such as a popsicle stick

  • Do a "primal scream"

  • Grit your teeth

Getting out, staying active and involved in the community also helps. Each of the panel members is active in his or her respective community. They all noted that you need to reach out to others, keep busy and cultivate your sense of humor. "Remember that you can't do it all - just do what you can. You have to let go of some things."

Problem solving areas that you might find challenging can result in helpful solutions. It was not possible at this session to discuss all the areas in one's life that could be challenging if you live alone, such as shopping and meal preparation, or countering "alone-ness." Identifying what are the problems and methods to attack them in order to maintain independence and safety as well as a sense of well-being is the first step. Seeking out others to help directly or to suggest ways to manage comes next. As several people on the panel said, "never be too proud or afraid to ask."

P.S. All of the above can apply to those living with others as well. We invite you to send other tips to the MPF office so they may be included in future issues of The Messenger. If you would like a copy of a Durable Power of Attorney or Home Safety Checklist, please contact the MPF offices at (800)852-9781.

MPF SERVICES

Over the years, the Michigan Parkinson Foundation has been diligently working towards meeting the needs of people affected by Parkinson's and their families. Two programs have been in operation to assist people with the practical aspects of living with Parkinson's disease.

The Medication Assistance program is designed to help people who do not have prescription coverage as a part of their health insurance and for those who are struggling with medication costs. MPF provides limited funding, currently $250 per year, for Parkinson's medication and will provide information on other sources of assistance. Contributors to the Shawn Bolton Medication Assistance Fund aid people in this needed program.

The Adult Day Care Services Assistance program serves to subsidize the cost of an individual attending a day care program, providing the family members with some needed respite and the person with Parkinson's with a safe environment out of the home. MPF will cover up to $360 per year for the individual to participate. MPF can provide the facility with educational material and is planning further training programs in the near future to ensure that people with Parkinson's receive the best care possible. There are no financial restrictions on the ability to obtain this funding.

By calling the Michigan Parkinson Foundation, people interested in learning more about Parkinson's disease can obtain up to- date information about PD and care issues. Those seeking referrals to neurologists who are interested in treating people with PD and answers to other issues will be able to obtain information about resources in their local area. The toll-free line is (800)852-9781.

 

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Dr. Kelvin Chou, MD, Associate Clinical Professor of Neurology, Director, Deep Brain Stimulation Clinic and Co-Director, Movement Disorder Clinic, University of Michigan Medical Center; and Member, MPF Professional Advisory Board. Anonymous Family. Deborah M. Orloff, MPH, BSN, RN, Chief Executive Officer, Michigan Parkinson Foundation.

Over the years, one of the major concerns we at the Michigan Parkinson Foundation continue to hear is the fear people with Parkinson's have regarding hospitalization. A traumatic experience in itself, the inability of those hospitalized to receive Parkinson medications as prescribed makes this experience even more difficult. We have read articles in other newsletters about difficulties encountered and even the need to avoid emergency rooms. Others, on a more positive note, focus on how to handle the hospital situation.

Dr. Kelvin Chou (University of Michigan), and his colleagues wrote an article which was featured in NPF's Parkinson's Report as well as the Messenger, (Fall 2008, pp. 6-8), answering 5 frequent questions about hospitalization. Since then, the Michigan Parkinson Foundation's Professional Advisory Board sanctioned a 4- page form created by the Parkinson's Resources of Oregon and Oregon Health & Sciences University ("Critical Information for Caring for the Parkinson's Patient") which we are encouraging people to complete prior to their hospitalization so they can explain to hospital staff what their needs are. Yet, the problem continues.

The National Parkinson Foundation commissioned neurologists at their Centers of Excellence to review articles and studies relating to the effect of hospitalization on people with PD. Dr. Chou was part of this effort and the results were published in the journal, Parkinsonism and Related Disorders (Aminoff, et. al, Management of the hospitalized patient with Parkinson's disease: Current state of the field and need for guidelines. 2011, pp. 139-145). A White Paper was written, focusing on the need for education of hospital staff about the care of the person with PD while hospitalized.

In this article, we report the success of one family in working with hospital staff to care for the hospitalized person with PD. As the story unfolds, Dr. Chou comments on each aspect, from preparation for the emergency room to what happens during the hospitalization. It is the intent of the Michigan Parkinson Foundation to work towards furthering the knowledge base of health professionals to enable the person with Parkinson's to receive optimal care, regardless of the setting.


Mr. and Mrs. X were very satisfied with their care during a brief hospital stay at a local hospital. It could have turned into a discouraging situation had they not been able to work out a compromise with health professionals with whom they dealt.

Mrs. X has had PD for over 20 years and is, as she puts it, very meticulous about her medication schedule. She needs to maintain a very strict every 3-hour schedule while awake, or else she goes into an "off period" (becomes very slow and rigid) and consequently she has carefully constructed a comprehensive method of insuring that she takes her medication on time.

During the summer, she was treated on an outpatient basis for a bladder infection. Despite treatment, symptoms persisted and were severe enough to result in her having to go to the emergency room. Her husband accompanied her. What is very striking is their preparation to go to the ER. The system she has developed helps her to feel a measure of control over managing her condition which at times can be overwhelming.

    1. Mrs. X has a form on her computer where she enters all of the pertinent information about her medications and conditions that are important. She carries a copy of this in her wallet and also places it in a small "cosmetic bag." At right (next page) is what her record looks like. Note that there are additional instructions at the bottom.

    2. In this cosmetic bag, she also has a 2-day supply of all of her medications, plus one extra dose. Because she needs to take her medications frequently, she uses a pill container that is actually intended to hold a week's supply, but she places one dose in each compartment for the entire day. There is an extra compartment where she places a back-up dose - just in case. Her pill containers are filled every other week, allowing her to have a 2-week supply. Mrs. X carries a 2 day supply with her at all times.

    3. In order for her to ensure she takes her medication on time, she uses a watch with an alarm which she sets to go off every 3 hours. Just in case, she sets it 10 minutes early to allow for a window. In her cosmetic bag, she also has a form that she checks off each time she takes her medications.


Commentary: The preparation of Mrs. X is to be commended. Such preparation is important not only for the emergency room, but for clinic visits as well. Being organized helps the physician focus on the patient and the patient's complaints, rather than spending time figuring out which medications the patient takes. Knowing your medications or having a current list also decreases the likelihood of mistakes.


Once at the ER, her husband explained to the staff that she needed to take her medications on time, showing them her medication system. The staff allowed him to help administer the pills to her. Mrs. X had various tests and it was determined that she needed to be hospitalized for IV therapy treatment.


Commentary: Based on the review of the medical literature, it is clear that patients with PD are admitted more often to hospitals and frequently have longer hospital stays than the general population. However, what is most interesting is that PD symptoms by themselves are not common reasons for hospitalization. In fact, the most common reasons for hospital admission among PD patients are pneumonia or other infections (such as urinary tract infections), elective procedures (such as a knee replacement or hip replacement), cardiac problems (such as heart attacks), gastrointestinal disorders (such as nausea, vomiting and diarrhea), and lightheadedness with standing causing fainting spells, strokes, and changes in thinking and memory. PD is often treated by a neurologist in the clinic, so hospital staff are often unfamiliar with PD symptoms and PD medications. You will be surprised how much more you know about your disease than the people you interact with in the hospital. Be prepared to re-educate the staff as you are transferred from the emergency room to your hospital room.

 

Once admitted to her hospital room, accompanied by her husband, Mrs. X was interviewed by a nurse. The couple explained that she had a strict schedule of several medications which had to be taken at specific times, and described the timing of the medications. They found out that one of the medications was not on the formulary, and the hospital couldn't provide it. Additionally, the nurse informed them that, because of staffing, it would be difficult to maintain such a strict administration schedule.


Commentary: These are common problems encountered in the hospital. Often, PD medication schedules may be changed to match that of other required medications (such as antibiotics) or to better accommodate a nursing schedule. This is often because nurses have to take care of many patients, and making medication times similar between patients allows for more efficient administration. There is also often a one hour window before and after a scheduled timing of medication that is allowed in hospitals. This flexibility is there just in case there is an emergency that the nurse or hospital staff has to address. Finally, hospitals may not stock your brand of medications. All of these changes may result in greater risk for wearing off for the PD patient. If you need a strict administration schedule or if you need your own brand of medication, some hospitals may allow you to keep your own medications at the bedside as long as it is drawn exactly from what was written on the bottle.

 

Anxious about the whole process, Mr. and Mrs. X asked if it would be allowable for her to keep her own medications at the bedside. This was not allowed. Again, they stressed that Mrs. X had to take her medications precisely, explaining the anxiety this caused and the consequences of on-off symptoms.

The nurse called in her supervisor, who said she understood what they were saying, "but the rules won't allow for us to deliver your medications as precisely as you want." However, she did call in the Pharmacy supervisor. Again, Mr. & Mrs. X discussed the dilemma.

After some discussion, the staff nurse made a suggestion that solved the problem. Mrs. X's medications would be brought in and stored by the staff. The nursing staff brought Mrs. X each dose one hour before the medications were due. Mrs. X could see the medications and this allayed any anxiety she had. She took her medications at the precise time she needed them, with help from her husband if necessary, and informed nurse when she had taken the pills.

This strategy gave both the X's and the hospital staff a zone of comfort. Mr. X concluded that any person with PD admitted to a hospital needs another person to advocate for him/her and who understands the fear of being without timely medications.


Commentary: Although the hospital would not let Mrs. X keep her own medications at the bedside, she did not give up and continued to try and find a solution that would work for her and the hospital staff. The lesson here is Hard work now = Less work later. The person with PD knows when medications wear out and often becomes compulsive about taking medication. Hospital staff, on the other hand, do not realize that many people with PD fear that they will never get out of the "off" time. Putting in the effort initially to educate staff and get what you want (Hard work now) will result in a less anxious stay with little off time (Less work later). Convince nurses that giving medications to you on a strict schedule (Hard work now for them) will result in fewer calls for assistance because of immobility or anxiety later (Less work later for them). Persevere and find a compromise. This allows everyone to win. Try to apply the Hard work now = Less work later principle the next time you need to be hospitalized and hopefully you too will have a successful outcome.

 

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By: Kelvin L. Chou, M.D., Michael S.Okun, M.D., Hubert H. Fernandez, M.D., Diane Breslow, MSW, LCSW, Joseph H. Friedman, M.D.

Most people with Parkinson's disease will need to be hospitalized at some time. Hospitalization can be stressful for various reasons. The neurologist who takes care of you and manages your Parkinson's disease medications may not have privileges at the hospital where you are admitted. The hospital physicians and nursing staff may not know a lot about PD. If you undergo surgery or other invasive medical procedures, you may not be able to take any medications until the surgery or procedure is complete.

It is important for the patient and the caregiver to plan and anticipate what is likely to happen. This article will answer five of the most frequently asked questions about hospitalization for people with Parkinson's disease.

1) When I am in the hospital, why don't I always get my medications on time?

Hospitals and hospital pharmacies have their own dosing schedules. A medication written for "TID (three times a day)" may be given at 7 AM - 3 PM - 11 PM or some other standard schedule. Many hospitals may have a policy that permits nurses to give medications at times different (generally, one hour before or after) from the scheduled time. This policy is a practical compromise because nursing staffs are busy and each nurse cares for multiple patients. Such a policy provides nurses time to complete their scheduled duties and allows flexibility in case of emergencies on the ward. As a result, it may seem that patients with Parkinson's disease receive their medications at random times.

How can such a situation be remedied? First, make sure that the drug schedule, with specific times, is written into the doctor's orders. Check that the physician knows when it should be given. Bring with you the complete list of your medications with the correct dosage. Talk with your nurse about the importance of receiving your medications on time. Explain that, without the medications, you can be immobile or uncomfortable and that the medications allow you to move around independently. You may know more about Parkinson disease than the doctor and the staff, so it is your responsibility to help them understand your situation. While you will still need to be somewhat flexible, sharing your knowledge can alleviate many problems. The staff wants patients to be well cared for during their stay.

2) Why can't I take my own medications in the hospital? Why do they substitute some medications for me?

The nursing staff must have control of your medications. This is a safety issue and is standard hospital policy.

Some patients may be taking medications that are not stocked in that hospital's pharmacy. In such situations, the hospital physician may have to prescribe substitute medications. If you want to take your own medications, bring them from home in their original bottles and give them to the nurses, who will dispense your medications. In some hospitals and outpatient surgical facilities, the doctor can write an order for patients to take their own medicines under supervision.

3) My mother has Parkinson's disease and was recently hospitalized. However, she seems to be moving much worse in the hospital than at home. Why is that?

Several explanations are possible. When patients with PD are hospitalized with an infection of some kind, whether it is the common cold, pneumonia, or a urinary tract infection, they often feel their PD symptoms are worse. Increased tremor or more difficulty walking may be noted. When the infection is treated, their symptoms generally improve.

Patients with PD who have an infection can experience more difficulty with swallowing, so that food goes down into the lungs, causing an "aspiration pneumonia," which may further impair swallowing ability. A speech pathology consultation can be useful to formally assess swallowing and make dietary recommendations. Additionally, a respiratory therapist consultation for "chest PT" may help patients mobilize the sputum and make it easier to cough.

Another possible cause of worsening symptoms is the addition of new medications. Common offenders include certain antipsychotic drugs or antinausea drugs commonly prescribed in hospital settings. Other medication may be substituted.

All patients with PD should be as active as possible in hospital. Moving around not only tones muscle, it allows faster recovery and prevents decomposition of the skin from staying in one position for too long. You may have no choice if your doctor orders you to bed rest; then, physical therapy should be ordered. Some patients may also need rehabilitation at a rehabilitation hospital or a nursing facility before being discharged home.

4) My husband has Parkinson's disease and became confused in the hospital last time he was there. How can I prevent this?

Any infection in a patient with PD can tip a patient "over the edge" mentally, or adversely affect motor function. New medications, especially for pain, frequently result in disorientation and memory problems. Lack of sleep, IV machine alarms and hallway lights can also contribute to a confusional state. Nurses regularly enter the room overnight to take vital signs, give medications, or check on a patient. For some, especially the elderly with intermittent confusion at home, being in a different and unfamiliar environment may tip them into a delirious state. The combined effects of anesthesia and medications to treat incision pain following surgery also can cause confusion.

Confusion often disappears once the underlying cause is treated, whether it is the infection or problems with medications. Frequent reassurance, support and comfort may be all that is needed. Confusion can sometimes lead to aggression, refusal to take pills, hallucinations or delusions. Physical restraints may be necessary to prevent self-injury. Some hospitals have bed or wheelchair alarms to alert nurses when patients wander; other facilities may use a sitter. If there are psychotic symptoms such as visual hallucinations, clozapine (Clozaril) and quetiapine (Seroquel) are the only antipsychotics to be used for most patients with PD.

In very severe cases of confusion with hallucinations and behavioral changes, physicians may temporarily discontinue dopamine agonists, MAO inhibitors, amantadine, benzodiazepines and pain medications. Treatment with carbidopa/levodopa and either clozapine or quetiapine will usually result in improvement. Later, patients may slowly be titrated back onto previous doses.

5) I had deep brain stimulators (DBS) placed two years ago. I now need to have knee replacement surgery. Will the doctors know how to take care of me?

Many medical professionals and hospitals still may not be familiar with this treatment. There are a few things you and your doctors should be aware of. First, if you have had DBS surgery, you can only get a MRI of the brain, and it must be done with something called a head-receive coil. You cannot get a MRI of any other part of the body, because the DBS device can become heated and damage the brain tissue during MRI. Radiologists performing a brain MRI can learn of certain precautions from the FDA. Additionally, your stimulator's voltage should be turned down to 0 before the MRI. Only a programmer experienced with MRI should supervise the procedure.

An electrocardiogram (EKG) may be important if you happen to have cardiac problems before, during or after surgery. But the stimulators may interfere with the EKG. Bring your portable Medtronic Access Device or Access Review Device (or a magnet that comes with the device) to turn off your stimulator in the hospital. Know how to turn your stimulators on and off before going to the hospital, or having any type of surgery. Similarly, if you need a brain wave test - an electroencephalogram (EEG) - or will simply be monitored during an inpatient or outpatient procedure, know how to turn that device off.

Most anesthetics are safe for individuals who've had DBS. However, some precautions need to be taken when using electrocautery, which stops bleeding during surgery and could potentially reset your stimulator to its factory settings. Only bipolar electrocautery is recommended (with grounding placed below the level of the device). If your neurologist is on staff at the hospital where you are getting surgery, ask him or her to confirm that your stimulator is on and that the correct settings are reset following surgery. Otherwise, schedule a follow-up appointment with your neurologist to recheck your settings soon after discharge from the hospital.

The above tips and scenarios should help aid minimize problems for patients with PD who are hospitalized. Some symptoms do worsen following general or local anesthesia. There are patients who have reported feeling as if they never return to their baseline. Generally, local anesthesia is thought to be safer than general anesthesia. If you have problems with thinking and memory, have them evaluated prior to surgery as they may deteriorate.

Finally, it is important to discuss with close family members what you would like done in case of a life-threatening emergency. They and the medical staff should know your medical wishes. You should choose an advocate who can ask questions and act as your spokesperson. If you have a living will or a durable health care power of attorney, those documents should be brought to the hospital and placed in the medical chart.

The checklists below are useful tools to take with you to the hospital: one for you and one for your doctor/nurse.You can assist them with lessening some of the stress of your hospital stay; this, in turn, can help other patients with PD later on.

 

Information Checklist for Hospital Stays

General Points to be Aware of When Entering the Hospital

  • Provide a list of your medications with exact times, frequencies and dosages. Share your knowledge about PD, including on-off fluctuations and the importance of taking medications at specific time intervals.
  • Bring medication in original bottles.
  • Know which drugs can worsen the symptoms of PD
  • Research study participants should provide information about experimental drugs. Inform the study coordinators that you are in the hospital.
  • Speak up when medications are wearing off.
  • Do not take medication on your own. Unless you have prearranged permission, the staff should administer all medication.
  • Tell the staff if you have a (DBS) implant. Bring the access review or magnet device to turn the stimulator on and off.
  • Inform your neurologist that you are in the hospital. Provide your neurologist's phone number of your neurologist to your hospital doctor.
  • Be mobile, especially during prolonged stays! Walk around as much as possible. Inquire about physical therapy or occupational therapy.

If you have difficulty swallowing:

  • Sit up while eating.
  • Ask for a speech-swallowing therapist.
  • Alert staff that your medications may need to be crushed and administered through a tube. Make sure medications are administered one hour prior to meals or feedings, especially if medications are crushed.
  • There is a dissolvable form of carbidopa/levodopa called Parcopa® that can be given by placing on the tongue.

Factors that may make your symptoms worse:

  • Failure to get medications at specific times and coordinated with meals.
  • Certain dopamine blocking drugs can worsen symptoms. If absolutely necessary because of hallucinations or behavior, only quetiapine (Seroquel) or clozapine (Clozaril) should be used.
  • Anxiety, stress, and sleep deprivation
  • Urinary tract, lung, or other infections (and antibiotics)
  • Provide Advance Directives: Power of attorney for health care and living will. Choose an advocate who can ask questions and act as your spokesperson. Make sure this person is aware of your medical wishes so he or she can assist in speaking for you if needed.

 

Information Checklist for Your Nurse and Doctor When You Enter the Hospital

 

  • Name of your Parkinson's disease (PD) neurologist.
  • Phone Number of your PD neurologist.

The following are some suggestions to make the hospitalization of this person with PD smoother:

  • Parkinson's disease medications often need to be given at specific times of the day. When writing medications in the orders, please use specific times (e.g. 8AM, 11AM, etc.).
  • Patients with PD should resume medications immediately following procedures, unless vomiting or severely incapacitated.
  • If there is confusion, consider urinary or lung infections.  Also, pain medications or benzodiazepines may be potential causes.

 

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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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