Managing Parkinson's Disease
Parkinson's Disease (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.
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.
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.
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.
Jay M. Gorell, MD, FAAN (1941 - 2005)
Dr. Gorell was Past 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