Getting a diagnosis of Parkinson’s disease can be shocking and overwhelming. It is a chronic degenerative condition that can be challenging to live with since it affects your movement. Because the symptoms and disease progression are different for different people, it’s hard to know exactly what to expect.
Communicating with your doctor
One of the most important parts of getting good medical care is communicating with your doctor and health care team, so you can make smart, informed decisions about your health. That includes getting detailed information about your condition, how it can be treated, what the possible side effects of different treatment options are, and what you can do to improve your quality of life. It also includes information about coping with your diagnosis and treatment, both emotionally and physically.
Important questions to ask
Here are a few key questions to ask your doctor during one of your early visits. These will help you find resources to manage your symptoms and get the support you need to keep your life as normal as possible for as long as you can.
In addition to getting treatment from a neurologist, are there other support groups I can tap into?
Many people find it helpful to join a support group to help manage the physical and psychological effects of the day-to-day realities of Parkinson’s disease. It is not hard to find a support group in your area. They are organized all over the country by many different organizations.
Support groups vary in size and format, so don’t feel discouraged if it takes more than one try to find a suitable group. If you aren’t interested or can’t leave your home, there are also online groups and forums that can help reduce the isolation that can come with Parkinson’s disease. Ask your doctor or health care provider, if you need help finding groups in your area.
Where can I find a movement disorder specialist?
People with Parkinson’s disease often benefit from many different specialties on their care team. One specialist that can help you manage your condition is a movement disorder specialist. Movement disorder specialists help treat tics, tremors, and other involuntary muscle movements that can interfere with your daily life. People with PD can benefit from movement disorder specialists at any stage of treatment.
What other specialists can help manage my care?
The physical, psychological, and quality-of-life effects of PD are often best managed using a team approach. Your medical team will likely include a neurologist, primary care provider, and an internal medicine specialist. To help you handle specific symptoms and better manage your day-to-day life, it can also be useful to work with occupational and physical therapists, mental health counselors, and a registered dietician.
Where can I find reliable information on Parkinson’s disease?
There is no cure for Parkinson’s disease, but there are many treatments that can help improve your symptoms and delay the progress of the disease. The combination of medication and other treatments that work best for you depend on your specific symptoms as well as your total health history.
Available treatments include:
Prescription medications: Prescription medications often include levodopa, MAO inhibitors, and/or anticholinergics. Levodopa is often the first-line treatment for people with PD. It increases the neurotransmitter dopamine in the brain. MAO inhibitors affect how fast dopamine is cleared from the brain. Anticholinergics affect a different neurotransmitter in the brain and can sometimes help reduce PD tremors.
Surgical treatment, including deep brain stimulation: Surgery is generally reserved for people who are in the later stages of the disease or who don’t improve with medication, therapy, and other lifestyle changes.
Over-the-counter medications and supplements: There is a lot of ongoing research about how effective alternative medicines and supplements can be in reducing PD symptoms. Some supplements might be able to help, but some can actually cause harm, including vitamin E supplements, although dietary vitamin E (found in whole grains, avocado, nuts, and vegetable oil) is good for your body. Be sure to inform your doctors about any supplements you are taking, since they can often interfere with prescription medications.
Besides medication, how else can I manage the disease?
There are multiple lifestyle choices and home remedies that you can incorporate to help improve your PD symptoms.4,5
Exercise: Exercise can benefit people at every stage of PD to enhance or maintain balance, endurance, flexibility, and strength. Studies show exercise can improve your symptoms no matter what you exercise you do.
Alternative medicine: Tai Chi, massage, meditation, yoga, Alexander technique, and pet therapy can all help with balance, flexibility, and emotional stability that can sometimes be challenging for people with PD.
Nutrition: Maintaining a healthy diet is important, and adding plenty of liquid, fiber, fresh fruits, and vegetables, and healthy fats to your diet can help constipation that can affect people with PD and improve your overall health.
Is it normal to feel depressed?
Yes! Researchers have found that 40 to 50 percent of people with Parkinson’s are depressed. Other brain and mood symptoms include anxiety, sleep disturbances, and behavior changes. Getting a difficult diagnosis can make people feel sad or worried, but this kind of depression is more prolonged and more serious.
Researchers believe that the underlying changes in the brain that cause PD might also cause depression. In fact, some people think that depression might be an early sign of Parkinson’s. Medication, mental health counseling, and support groups can all effectively treat this kind of depression, so be sure to tell your doctor how you feel.
Are there clinical trials I can take part in?
Yes! The U.S. government National Institutes of Health maintains an ongoing database of all the clinical trials taking place around the country, at ClinicalTrials.gov. You can search by disease, trial status, age group, and location.
The Michael J. Fox Foundation offers an online clinical trial matching tool that helps PD patients connect with studies that need participants.
Centerwatch is an information service for patients and providers that helps match participants with clinical studies.
The Parkinson’s Study Group is the largest non-profit cooperative of accredited Parkinson’s centers in North America. The organization plans, prioritizes, and conducts clinical trials around the country as well as maintaining a searchable list of past and current trials on its website.
Will I die from this disease?
No! Parkinson’s is not a fatal disease. But it does affect your quality of life, and it gets worse over time. As James Beck, vice president for scientific affairs at the Parkinson’s Foundation, explains, “People who are healthy when diagnosed will generally live about as long as other people in their age cohort. It is not a death sentence.” Some of the complications of PD can be serious, however. The CDC rates complications from PD as the 14th leading cause of death in the U.S. Most of the Parkinson’s-related deaths occur because of pneumonia, which is more of a risk as people lose their ability to swallow and can inhale food.8 It’s important to start treatment early and to get support to keep living a healthy, active lifestyle as long as possible.
Where can I get more information and resources?
There are many patient advocacy and research organizations that maintain current, accurate information and patient-education resource libraries. These include:
The Parkinson’s Foundation Library is a curated collection of downloadable PDFs, links, and proceedings from research summits.
The Michael J. Fox Foundation offers multiple educational resources, from webinars to Q&As to curated publications.
The American Parkinson Disease Association maintains an education and support webpage featuring downloadable publications, webinars, Q&A opportunities, and links to local resources and support groups.
Remember, you are not alone!
Parkinson’s is a relatively common disease, with 60,000 Americans diagnosed every year. According to research conducted by the Parkinson’s Foundation, approximately 930,000 people will be living with Parkinson’s in American by 2020. That number is expected to increase to 1.2 million by 2030. Approximately 15% of people who get Parkinson’s have a family history of the disease.
Parkinson’s Disease. The Mayo Clinic. Updated June 30, 2018. Available at https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055 Accessed March 14, 2019.
Talking to your doctor. National Institutes of Health. US Department of Health and Human Services. Updated November 27,2017. https://www.nih.gov/institutes-nih/nih-office-director/office-communications-public-liaison/clear-communication/talking-your-doctor Accessed August 15, 2018.
Parkinson’s support groups. The Michael J. Fox Foundation for Parksinson’s Research. Available at https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?support-groups Accessed March 27, 2019.
Treatment. Reviewed by Chauncey Spears. Parkinson’s Foundation. Available at https://www.parkinson.org/understanding-parkinsons/treatment Accessed March 27, 2019.
Diagnosis & Treatment. The Mayo Clinic. Updated June 30, 2018. Available at: https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/diagnosis-treatment/drc-20376062 Accessed March 27, 2019.
11 complications of Parkinson's disease. Reviewed by Nancy Carteron. Medical News Today. Updated October 19, 2018. Available at: https://www.medicalnewstoday.com/articles/323399.php Accessed March 27, 2019.
Lana Burgess. How does Parkinson's disease influence depression? Medical News Today. Reviewed October 27, 2017. Available at: https://www.medicalnewstoday.com/articles/319831.php Accessed March 27, 2019.
Roni Caryn Rabin. How Do You Die of Parkinson’s Disease? January 13, 2017. New York Times. Available at: https://well.blogs.nytimes.com/2017/01/13/how-do-you-die-of-parkinsons-disease/ Accessed March 27, 2019.
What is Parkinson’s? Reviewed by Dr. Ahmad Elkouzi. Parkinson’s Foundation. Available at: https://parkinson.org/understanding-parkinsons/what-is-parkinsons Accessed March 27, 2019.