MAY 31, 2013 | Menlanie Brandabur, MD, MDS, Clinical Director, The Parkinson’s Institute | When a person is given a diagnosis of Parkinson’s Disease or a related form of parkinsonism, he or she begins an unwelcome and complex journey that will most likely last the rest of his or her life. Ideally, the physician who presents this diagnosis will be well-equipped, in terms of knowledge, compassion and personality, to help the patient and family along that journey.
Ideally, the MD or DO who gives the diagnosis will turn out to be just the right person and will help to guide the patient and family though the process of understanding and accepting the initial diagnosis and then modifying the treatment according to the changes that occur over the course of the disease.
So how does a person find the doctor who is most qualified to play such an important part in the management of their PD?
Usually, the patient first goes to the primary care provider (PCP) with a complaint such as tremor, shoulder pain, or difficulty walking. The PCP may diagnose PD and start treatment or refer the patient on to a neurologist or to a PD care center for diagnosis and treatment. Sometimes, the patient lives in an area where neurologists are in short supply, obliging the PCP to provide treatment. In response to this, some professional organizations are implementing training programs to help PCP doctors learn to manage PD. One such program was developed by the New Jersey Academy of Family Practice.
Most often, patients are referred to a general neurologist or Movement Disorders specialist. A neurologist is an MD Doctor of Medicine) or DO (Doctor of Osteopathy) who has had special training in disorders of the nervous system; brain, spinal cord and nerves, including PD. The doctor learns to care for persons with PD, as well as other maladies such as headaches, stroke, Multiple Sclerosis, Alzheimer’s disease and epilepsy. Neurologists completing an accredited training program in the US should be Board Eligible or Board Certified. Many neurologists provide excellent care for PD patients and take the time to answer their questions and provide support to the patient and family.
In some cases, this does not happen. Patients may be given the initial diagnosis by a busy neurologist who does not have time for a lengthy discussion. Since a general neurologist sees patients with a variety of neurologic disorders, he or she may not be able to keep up with recent developments in the field of PD medicine. The patient may be told “You have PD. Here is a prescription, come back in a year.”
This can be a devastating experience and can severely hamper the process of learning to accept the diagnosis and begin appropriate therapy. An initial encounter like this tends to make the patient and family members distrustful of the diagnosis and the entire diagnostic process and may trigger a series of further consultations, going from doctor to doctor trying to get a “better” diagnosis.
So, what should one look for in a doctor to care for the person with PD? Ideally, this person will be a neurologist with a strong interest in Parkinson’s disease.
Sometimes, the best option will be a Movement Disorder Specialist (MDS). An MDS is a neurologist with 1-2 years of additional training in PD and other movement disorders. In effect, this is a doctor who specializes in the care of PD patients. There may be many advantages in consulting with a PD specialist. Even a single visit may more firmly establish the diagnosis of PD or a related condition and provide an opportunity to ask questions and to learn about additional treatment and research options. Establishment of an ongoing relationship, even once or twice a year, will insure that the treatments may be updated and new concerns dealt with. To find a MDS close to you, call the PDF number:
The leaders and members of your local support group may also be a good source of information about PD specialists.
Remember, no matter what training and certification the doctor has, there are some qualifications that are desirable in any doctor. In addition to knowledge about the diagnosis and treatment, the doctor should be able to really listen to the patient and to apply creative problem-solving to the various issues that can arise as the disease progresses. The patient can help by following instructions to the extent possible, giving honest feedback as to results, and preparing lists of current medications and questions prior to each visit. The doctor can provide education, compassion and assurance that they will accompany the patient on the PD journey.