Back in the old-fashioned medical days, it was common to people to stick with the same doctor for a good chunk of their lives. Before medicine became more specialized, a family doctor may have ushered a baby into the world, administered vaccinations, made house calls with a black bag equipped with stethoscope, tongue depressors, hypodermic needles, etc., and provided care and counsel as the child grew into adulthood. In fact, these physicians came to know entire families and the medical histories of each person—and having those relationships and information added to the quality of personal care each member received. Those were the days.

Now there are specialists for every step along the cradle-to-grave journey through life. Not just doctors, but there are also Physician Assistants (PA’s), Nurse Practitioners (NP’s), Registered Nurses (RN’s), Physical Therapists (PT’s) and others who are licensed to meet needs that used to routinely fall into the family doctor’s lap. Instead of relying on a long-term relationship with one doctor and his in-office nurse, patients today see a multitude of different clinical professionals over the course of a lifetime. It’s entirely possible that when these professionals meet with a new patient, they may not have access to a patient’s records from a previous practice, nor are they direct communication with other medical personnel who have seen or are currently seeing the patient. Therefore, they depend on the patient for his or her medical history, and may otherwise be treating the patient in isolation of other information or collaboration.

It’s not unusual for a person with Essential Tremor (ET) to have to try various medications or combinations of medications, only to find they are not effective or have undesirable side effects. A determined ET patient may, over a period of several years, turn from one doctor to another and another. Meanwhile, they are increasingly frustrated and hopeless as treatments fail, and as they find themselves telling their story all over again for what feels like the umpteenth time, waiting for signs that this time the doctor truly gets what they’re going through and has a better solution.

 

Who’s on your Essential Tremor care team?

If you or a loved one has a progressive neurological movement disorder called Essential Tremor (ET), who first diagnosed it? An internist? Family practice doctor? Neurologist? Movement disorder specialist? Have you seen more than one doctor since you were diagnosed? Have any of your professionals spoken with you about a team approach to ET?

The Editor-in-Chief of Brain & Life, the official magazine of the American Academy of Neurology, writes:

The concept of team-based care, introduced to the field of medicine more than 20 years ago, has become more widely adopted for neurologic patients over the past several years. It recognizes that multiple health care personnel treat you or your family member and that the most favorable health outcomes occur when everyone works in concert….While team-based care encourages all health care professionals to do what they have been trained to do best in their field of expertise, it also encourages patients to take an active part in their care.[i]

Further on in the issue, there’s an article relating the experiences of two neurology patients, their caregivers at home, and their team members who play various roles and coordinate with each other: neurologist, physiatrist, nurse, physical therapist, occupational therapist, social worker, dietician and others. While not every person with ET may need such concerted care, the simple fact of coordinated care that tends to the whole person offers best possible outcomes on many levels, not just physical. This approach also offsets the feelings of helplessness, isolation and not being understood that can accompany the need to be well attended to as tremors worsen.

It’s important to start with yourself as team captain. In your area, is there a doctor/neurologist who is particularly knowledgeable about tremors and their impact on a person’s inner and outer quality of life? Finding such a person isn’t always possible, and takes some energy and determination—qualities that can be sapped by tremor-related difficulties—but the search is worth it. Since medication only helps about 50% of ET cases, such a doctor can help to identify other ways in which life can be easier, and help connect with or refer to appropriate support services with which the doctor will stay in teamwork. Large medical or academic centers may have more services on tap than a rural hospital that serves a small town, but with the internet becoming more and more medically interactive, it may be possible to tap into online resources, including personal consultations, videos, seminars, support groups, etc.

As poet/motivational speaker Mattie Stepanek puts it, “Unity is strength…when there is teamwork and collaboration, wonderful things can be achieved.” It is far from wonderful to have to cope with ET, but sharing the challenge with a team of experienced, caring problem-solvers and cheerleaders, even two or three, can go a long way to lighten the load. And maybe even generate wonderful things.

NOTE: This content is solely for purposes of information and does not substitute for diagnostic or medical advice. Talk to your doctor if you are experiencing pelvic pain, or have any other health concerns or questions of a personal medical nature.

[i] Avitzue, Orly. “Captains of Care,” Brain & Life, Feb./Mar. 2020, p. 5.