PD INDEX: An Index to Parkinson's Disease Information on the Internet

USING THE INTERNET TO FIND A PHYSICIAN TO TREAT PARKINSON'S DISEASE
A PD Index article by Phil Tompkins

Can information on the Internet be used to find a physician who treats Parkinson's disease? Before addressing this question, a prior question needs to be answered: what type of physician is needed?

For people who have not been diagnosed it's best to consult an expert. Parkinson's disease, especially in its early stages, can be difficult to diagnose. There is no medical test for PD. There are other conditions that look like PD, and these must be first ruled out.

A primary care physician (internist or family physician) who has experience with many patients with PD may be able to determine a correct diagnosis. However, primary care physicians will often refer patients with suspected PD to a neurologist. Note that not all neurologists treat PD. A neurologist with expertise specifically in Parkinson's disease or in movement disorders, a sub-specialty of neurology that includes PD, may be needed, especially in difficult to diagnose cases.

Once a diagnosis of PD has been determined, treatment may be provided by an experienced primary care physician, by a general neurologist, or by a movement disorders specialist. An experienced primary care physician should be able to handle cases of PD that are not unusual. For less frequently occurring problems or manifestations of PD or for PD in its advanced stages, a specialist would be better. Some patients receive continuing treatment for PD from a primary care physician while consulting a specialist on an infrequent schedule or as needed.

A primary care physician may be the only choice if it is very difficult to travel to a specialist. Inconvenient location is not a strong consideration. PD progresses slowly. Once a treatment regimen has been established, visits to a specialist for treatment need not be frequent. One visit every three months is normal.

Note that there is, in my opinion, no great loss medically if PD goes undiagnosed for a while or if one starts out with less than optimal medication. Current PD medicines do not delay the neurodegeneration which is at the core of the disease, but only suppress symptoms.

With all this in mind, let's consider the usefulness of the Internet in finding a physician.

One good way to find a physician is to ask other persons who live in the same area about their physicians. Persons with PD can be contacted via various Internet channels of person to person communication (click on highlighted words for details). Persons with PD can also be found via support groups. If there is a support group in your area, there may be an on-line reference to it. Support groups are listed by some of the national or regional PD organizations. If your area is covered by a regional organization, you might simply look up their phone number and then try calling them.

The International Tremor Foundation, which is concerned with essential tremor, not Parkinson's disease, provides an on-line list of movement disorder specialists by U.S. state. It is incomplete, and I do not know to what degree, but it is the only such list I have found. I have found no other national physician directory, either on the Internet or on paper, that lists movement disorders specialists, much less all the neurologists or primary physicians who treat Parkinson's disease. There are national physician directories, such as the ones provided by the AMA and the American Acacemy of Neurologists, but they do not show that level of detail at which the movement disorders sub-specialty or an interest in Parkinson's disease would be indicated.

To find Parkinson's disease or movement disorders specialists, clinics and programs at the nearest academic or research institution, see the PD Index directory of PD clinical services at universities, university hospitals, and research institutions in the U.S.

There are local on-line physician directories that may be useful. Most of these are functions within the web sites of hospitals or health systems. This means that, unless you already happen to know the URLs, you must first find the hospital or health system web sites. A web site that lists all the hospitals in the U.S. by state and provides links to many individual hospital web sites is HealthStreet.com. It is a little cumbersome to use. Another site, the list of hospital links from the Mass achusetts General Hospital web site is convenient to use but incomplete.

Some state hospital associations have web sites that link to hospitals in their respective states. The Massachusetts Hospital Association has in addition a list of links to other state hospital associations. If your state's hospital association is shown there, you can check whether it has links to hospitals.

Other links to hospital web pages may be found in state or regional Internet directories like the Western Massachusetts Web Guide, which lists by category the links to web pages of every person, business, etc. in the western part of the state, provided that they were submitted to the directory for inclusion in the list.

Once you are at a hospital's web site, you can use its "find a doctor" function, if there is one. Otherwise (or also) search or navigate the web site to look for any clinic or program in Parkinson's disease or movement disorders.

So the answer to the question is "it depends". You may have good luck and find what you are looking for quickly, or it may be vastly more convenient to simply open your phone book to the yellow pages and look up neurologists or your local hospital's physician referral service and try calling them.

June 2000.

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