Building a Parkinson’s Care Team
Editor’s Note: The following has been excerpted, with permission, from The Parkinson’s Journey: Building a Care Team, published by The Michael J. Fox Foundation for Parkinson’s Research (MJFF). Real World Health Care invites our readers to visit MichaelJFox.org to help you and your loved ones navigate life with Parkinson’s.
As a person living with Parkinson’s, your needs for care can vary and evolve as the disease changes. Here are some of the people who can make valuable contributions to your care and well-being.
Movement Disorder Specialist
A movement disorder specialist is a neurologist with additional training in Parkinson’s disease (PD) and other movement disorders. This type of doctor typically has extensive knowledge of Parkinson’s therapies and ongoing research.
Because they have so much experience treating PD, movement disorder specialists are often best equipped to tailor a plan of care for you and your specific needs. Some people may wait to see a movement disorder specialist until later in their disease course. However, seeing this specialist early in your treatment could help you plan for your care in the future, prepare for potential changes in your Parkinson’s and adapt to these changes as they happen. Movement disorder specialists also can connect you with clinical studies to help scientists learn more about Parkinson’s and how to treat it.
Even if you have been treated for Parkinson’s for some time, you may want to consult a movement disorder specialist to:
- Review your current medications and recommend adjustments if needed.
- Assemble a team of health care professionals who will work together to determine the most appropriate treatment for your changing condition.
If you live in a rural area or have difficulty traveling, it may be challenging to find or visit a movement disorder specialist. One option might be to travel to see a movement disorder specialist once or twice a year and follow up with a local general neurologist or primary care doctor more frequently. Technology, too, may help. Ask your doctor or support group about telemedicine opportunities. Any time spent with a specialist may be helpful.
Allied care professionals include physical therapists, occupational therapists, speech therapists, counselors and nutritionists. As members of your treatment team, they can help you manage many symptoms and other aspects of living with Parkinson’s.
Involving these professionals early in your experience with PD can help you continue to do the things you want to do. Research shows that working with allied care professionals may help prevent or delay some difficulties as Parkinson’s progresses. For example, these therapists can help you move better, manage your daily activities and prevent falls.
- A physical therapist (PT) can help you maintain or improve mobility and manage certain types of pain by working with you on exercises for walking and balance, strength, and range of motion. A PT can also design an exercise program for your specific symptoms and abilities.
- An occupational therapist (OT) helps people with activities of daily life, such as self-care skills, education, work and social interaction. An OT will help someone with PD prepare for, and adapt to, changes in their disease. An OT can teach you the best ways to move from sitting to standing, for example, or what to do if you find yourself freezing or losing balance.
- A speech therapist can help you maintain and improve communication skills. Many people with Parkinson’s have difficulty communicating because they speak softly or in a monotone, or they slur words. A speech therapist can help you with this and with other issues. For example, as Parkinson’s progresses, swallowing can become more troublesome and can pose a choking risk when eating. Speech therapists can teach you ways to chew and swallow to ease symptoms.
- A therapist/counselor can help people with Parkinson’s disease manage depression, anxiety and other emotional changes that are common non-motor symptoms. They can also help you prepare for conversations or situations that may arise with a Parkinson’s diagnosis, such as telling your employer or children about your disease.
- Eating well is important for overall good health. A nutritionist/dietitian can help you evaluate your diet and make changes, including helping you plan menus and make shopping lists. Many people with Parkinson’s experience issues like unwanted weight loss or constipation, which can be managed with dietary changes. A nutritionist/dietitian can work with you to develop an individualized nutrition program.
When a person is diagnosed with Parkinson’s disease (PD), someone who is close to them — whether their spouse, child, parent or friend — usually becomes their primary care partner.
Care partners take on many responsibilities, from accompanying a loved one to doctor appointments to managing more household responsibilities. For the most part, care partners do not need special medical training. What’s important is establishing a partnership — a mutual understanding of what kind of help with daily tasks and emotional support the person with Parkinson’s wants and needs as the disease impacts your routines and lives.
It’s essential, too, for care partners to take care of themselves. Parkinson’s progresses slowly, and the role of the care partner can last for decades. Care partners need to take time out to renew their energy and stay healthy.
In MJFF’s free guide You, Your Loved One and Parkinson’s Disease, Lonnie Ali, wife of Muhammad Ali and member of The Michael J. Fox Foundation Founders Council, offers guidance for fellow Parkinson’s disease caregivers.
You are an active member of your care team. Educate yourself about Parkinson’s disease and talk with your doctor and loved ones to identify helpful health care professionals, decide on treatments and connect with research studies.
Establishing a comfortable, open and productive relationship with your health care providers is important for your overall care. In choosing any provider, your major considerations should be how much they know about Parkinson’s and how well they listen.
Because Parkinson’s involves a wide range of symptoms including movement- and non-movement-related issues, over the course of your life with Parkinson’s you may wish to work with a variety of health care providers in addition to the doctor who primarily treats your Parkinson’s.
Care teams are made not only of medical professionals. Care partners play an essential role in the health and well-being of people with Parkinson’s. And you, the person with the disease, are in the driver’s seat — gathering and guiding the players.
The Michael J. Fox Foundation for Parkinson’s Research has an ambitious goal – find a cure and go out of business. Donations go directly to the Foundation’s high-impact research programs to speed better treatments and a cure for the millions of families impacted by the disease. Together, we can end Parkinson’s at MichaelJFox.org.
The medical information contained in this article is for general information purposes only. The Michael J. Fox Foundation for Parkinson’s Research has a policy of refraining from advocating, endorsing or promoting any drug therapy, course of treatment, or specific company or institution. It is crucial that care and treatment decisions related to Parkinson’s disease and any other medical condition be made in consultation with a physician or other qualified medical professional.