Who should be on your CARE TEAM?

If you or a loved one is diagnosed with Parkinson’s disease, the first important task is to choose a care team. But how?  It’s often helpful to visualize yourself at the center of a circle, surrounded by a team of expert supporters and caregivers. The experts at the Johns Hopkins Parkinson’s Disease and Movement Disorders Center provide tips on who should make up your team. It’s important to keep in mind that you’re all in this together, managing a progressive, chronic disease. Key players to look for include:

  • Neurologist – A neurologist or movement disorders specialist is the foundation of your medical team. This is the person you see periodically to assess disease progression and to prescribe and adjust medications over time.  That said, you still need your regular physician for normal health concerns, even those that may be related to your condition. See your family doctor for regular checkups and tests, and for help managing secondary symptoms of Parkinson’s disease, such as constipation or sleep issues.
  • Physical Therapist – Research shows that exercise can slow the progression of Parkinson’s disease. But while staying active is always wise, a physical therapist can be an important team member.  Some therapists have specialized training in working with individuals with Parkinson’s. You can ask your doctor for a referral to a physical therapist trained in LSVT BIG therapy, a specialized program that helps retrain muscles.  A personal trainer with expertise in working with people affected by Parkinson’s disease can also be a smart idea. The Parkinson’s Wellness Recovery and Power Up programs take a similar approach to LSVT therapy.
  • Speech and/or Occupational Therapist – Over time, patients with Parkinson’s disease encounter problems with speaking and swallowing. A speech therapist can be helpful, using LSVT (Lee Silverman Voice Treatment) therapy or Speak Out. These vigorous vocal exercises help patients with Parkinson’s recalibrate their voice tone and loudness, both of which can be diminished by Parkinson’s.  An occupational therapist can also help you assess your home for safety. Occupational therapists can suggest assistive devices and train you in their use. This will help you remain independent and self-sufficient as long as possible.
  • Mental Health Specialist  – Nearly half of patients with Parkinson’s disease will experience depression and/or anxiety, so it’s wise to have a mental health specialist on your team. Our patients are frequently referred to our movement disorders psychiatry clinic. Depression and anxiety sometimes need long-term treatment, while other times, these conditions can be addressed and resolved with short-term treatment. These treatments include talk therapy, medication or both. Ask your doctor for advice and/or referral.
  • Other Specialists – There are other specialists that you may or may not need to consult during your Parkinson’s journey. For example, you may need to see a gastroenterologist. – People with Parkinson’s disease may also get dysautonomia, in which some normally automatic functions — in this case, your digestive system — are disrupted. Dysautonomia can lead to constipation and other gastrointestinal issues, so you may want or need to see a specialist. Another referral may be to an ophthalmologist for vision problems associated with Parkinson’s disease, such as double vision.
  • Care Partner – As your Parkinson’s begins to advance, you may need a companion to assist with medications, activities of daily living and safety.
  • Support Group – It’s important to know that you are not alone with your diagnosis.  A support group will provide camaraderie and advice that will help to get you through your day.