Hearing the words, “You have Parkinson’s,” is life changing. For some, a Parkinson’s diagnosis may mark the end of a long and frustrating search to explain a collection of different and seemingly disconnected symptoms. For others, a Parkinson’s diagnosis is a complete shock, filled with feelings of disbelief and despair. For everyone, a Parkinson’s diagnosis brings a new and unexpected journey.
Parkinson’s is not life-threatening, but it is progressive. This means that symptoms and effects of Parkinson’s will change and get worse over time. Parkinson’s is also very complex and can affect almost every part of the body, ranging from how you move to how you feel to how you think and process. When you are first diagnosed, the sheer amount of information and the uniqueness of each person’s experience of Parkinson’s can be incredibly overwhelming.
In this article, we help you navigate to the right information so you can get started on your path to living well with Parkinson’s.
Since no two cases of Parkinson’s are ever exactly alike, Parkinson’s can be very difficult to diagnose. Some people experience a journey of months and even years as they visit different specialists to determine what is causing early and often seemingly disconnected symptoms like constipation, depression, foot cramping or shoulder pain.
Physicians determine you have Parkinson’s after reviewing your medical history, self-reported symptoms and a clinical examination conducted by a neurologist or a movement disorder specialist.
A Parkinson’s diagnosis requires you have two out of three primary motor symptoms:
- Tremor (shaking, usually of the arm, leg or chin, while at rest)
- Rigidity (stiffness)
- Bradykinesia (slow movement)
To support the Parkinson’s diagnosis, your healthcare provider will also look for other symptoms:
- Micrographia (small handwriting)
- Reduced facial expression (mask-like face)
- Decreased arm swing or leg drag on one side of the body while walking
Symptoms such as shoulder pain, depression, sleep problems, constipation and loss of sense of smell can begin long before any of the motor symptoms appear. Because symptoms like these can be subtle at first, they are not always evident or meaningful before diagnosis. It is common after a Parkinson’s diagnosis to look back and realize symptoms had been coming on gradually for months or even years. Often people explore other treatment avenues for early symptoms, like physical therapy or even surgery for pain, only to discover later it was actually connected to Parkinson’s.
Since doctors diagnose other medical conditions using sophisticated technology, many are surprised to learn a Parkinson’s diagnosis is based on your medical history and a simple examination. While your healthcare provider may take other steps, such as order blood and urine tests, check copper levels and order a brain scan, such as an MRI or CT or DaTscan that measures dopamine, these tests do not a Parkinson’s diagnosis. They are used to either confirm the diagnosis or determine if another medical condition is causing your symptoms.
At diagnosis, the doctor’s receptionist said, ‘Congratulations! You have the best incurable disease you can get.’ She was referring to the fact that there is so much life ahead yet to be lived; it’s not a death sentence. That moment set the tone for the course of my illness and how I choose to live my life. —Dennis (with wife Judy)
Soon after diagnosis, you will begin exploring the wide range of treatments available to help manage symptoms of Parkinson’s. Since Parkinson’s looks different for everyone, no two treatment paths will be the same. Treatment typically includes some combination of medication, exercise and rehabilitation strategies like physical and speech therapy to manage symptoms and give you the best possible quality of life. Non-medical therapies are just as important as medication. These therapies can treat or prevent many symptoms affecting movement, speech and your ability to do daily life and work activities.
In the last decade, research studies and clinical experience have upgraded the importance of exercise for people with Parkinson’s from a “nice to have” activity to an essential way to help manage symptoms and maintain quality of life. Exercise helps or even improves everything from your mood to your fatigue to muscle stiffness to tremor and constipation.
There are many different types of medications that can help manage symptoms of Parkinson’s. Medications often involve trial and error to find the combination that works for you, which will continue to change and evolve over time. Sometimes medications can impact other symptoms of Parkinson’s or cause frustrating side effects, so it is important to communicate closely with your doctor. Often adjusting the dosage or changing the medication can help.
Who Gets Parkinson’s?
Parkinson’s is second only to Alzheimer’s as the most common neurodegenerative disease in the United States, affecting between 1 million to 1.5 million Americans. There are more people living with Parkinson’s in the U.S. than the number of people living with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease (ALS) combined.
An estimated 50,000 to 60,000 new cases of Parkinson’s are reported annually in the U.S. alone. Between 7 and 10 million people are estimated to be living with Parkinson’s around the world.
Most people living with Parkinson’s are older than 65 and about 60 percent are male. About one in 100 people over the age of 60 have Parkinson’s, while there are fewer than one in 1,000 people under the age of 50 living with Parkinson’s. Fifteen percent of people with Parkinson’s are under age 50 and only five percent are under age 40. Typically, individuals under the age of 50 and diagnosed with Parkinson’s are referred to as having young onset Parkinson’s (YOPD).
There is no known cause of Parkinson’s, nor have scientists identified a set of characteristics that accurately predict if someone will develop it. Discovering a biomarker, a biological characteristic that can predict if someone will develop a certain condition is a current focus of ongoing research.
What causes Parkinson’s?
The complexity of the brain has made the search for the underlying causes of Parkinson’s difficult. There is currently no known cause of Parkinson’s, though scientists and researchers believe a unique combination of genetics, environment, lifestyle and other factors are at play for each person who develops it.
Some people with Parkinson’s may have a genetic connection and will often have someone else in their family with Parkinson’s. Others may point to specific environmental factors, such exposure to pesticides, or lifestyle factors, like head trauma, that they believe influenced their developing Parkinson’s.
When does Parkinson’s Start?
Many people live with Parkinson’s for years before being officially diagnosed. Early symptoms are called pre-motor symptoms and effects like constipation, depression and loss of smell can begin anywhere from a few months to multiple decades before a diagnosis or more visible motor symptoms like tremor appear. Looking back after diagnosis, some people can pinpoint the onset of their Parkinson’s or recognize seemingly disconnected symptoms that in hindsight were really the start of what they can now identify as Parkinson’s symptoms.
For younger people with Parkinson’s or those without the more classic symptoms of tremor, rigidity (stiffness) and slow movement, the diagnosis can be more difficult and take longer to confirm.
Parkinson’s is complex, multifaceted and not to be faced alone. Putting together a strong care team among your family and community, friends and mentors in the Parkinson’s community and various healthcare professionals will help you best manage symptoms and enjoy the best possible quality of life.
A care team can range from your family members to your acupuncturist, and include just about everyone in between! Since Parkinson’s impacts each person so differently, your care team will be unique to you and it will change and evolve as your symptoms do the same. Healthcare providers, complementary therapy specialists and even emotional well-being professionals should all be considered as you evaluate who best fits on your personal care team.
Physical Healthcare Providers
A neurologist specializes in conditions of the brain. He or she can confirm your diagnosis and establish an appropriate treatment plan.
A movement disorder specialist is a neurologist with additional training in movement disorders. Movement disorder specialists are much more familiar with Parkinson’s and may be able to make a diagnosis sooner. They also know more about current research and treatment options and will recognize when to refer you to experts who can help address specific aspects of Parkinson’s, such as a sleep specialist for sleeping troubles and a speech and language therapist to improve your speech and swallowing.
If you don’t have a movement disorder specialist close to home, seek out an empathetic neurologist who is experienced treating people with Parkinson’s and who will listen to you and your family, work with you to define your needs and goals and be open to your suggestions and ideas as an active participant in your own treatment plan. If your team doesn’t include a movement disorder specialist, you’ll want to be more informed and prepared to advocate for the treatment and services you need from healthcare providers not necessarily specialized in Parkinson’s.
Your primary care physician (PCP) will also be very important over the coming years. He or she will help you stay healthy with regular check-ups and will complement your neurologist in treating non-motor symptoms. Your doctor will typically manage your medications and refer you to additional healthcare professionals as needed.
Other routine medical providers like your optometrist, dentist and obstetrician/gynecologist for women will continue to be essential parts of your care team and should be informed about Parkinson’s as well as the symptoms you are experiencing.
Establishing a broader medical team early builds a network of specialists who will become familiar with you and your symptoms and be with you as things evolve over time. Connecting with rehabilitation specialists will be essential at all stages of Parkinson’s, even early on or when symptoms are mild. Rehabilitation specialists include physical therapists, speech therapists and occupational therapists. Your rehabilitation team can help prevent or delay problems, minimize the impact of symptoms and maintain daily functioning as Parkinson’s progresses.
Depending on your symptoms, you may also consider adding other, more medically-based specialists to your care team. These could include a sleep specialist to assist with problems sleeping or a neuropsychologist to help with changes in how you think and process, such as making decisions or retrieving the right word in conversations.
Complementary Therapy Providers
Complementary therapies are intended to be used together with traditional, more medically-minded approaches to managing Parkinson’s symptoms. A nutritionist can help you be more intentional about your diet to ensure you are getting the right nutrients you need. There have been research studies demonstrating how acupuncture can help symptoms ranging from balance and walking to pain, fatigue and feelings of anxiety and depression, so you may consider adding an acupuncturist to your care team.
Since exercise is so important for people living with Parkinson’s, your personal trainer or various exercise instructors, like your yoga or tai chi teacher or a boxing coach, can all be considered essential members of your care team.
Emotional Well-Being Providers
In addition to your physical healthcare team and complementary therapy providers, professionals who focus on emotional health and well-being can be very helpful. Counselors, social workers and psychologists are trained to assess emotional difficulties and to work with you and your doctor to promote good mental health. They can help you cope and stay positive.
These professionals can also help you manage stress that can make Parkinson’s symptoms worse, causing additional strain on you and your family. They serve as guides, helping you to respond with resilience to changes you hadn’t anticipated. Professional support and guidance can help you and your family cope with the tough times when they come.
Since Parkinson’s affects everyone differently, the specific ways you choose to live well will be unique and will change over time. However, a positive attitude, staying engaged in your own health, consistently exercising and making a commitment to take action are steps everyone living with Parkinson’s can take to live well right now.
Research and personal experience of people living with Parkinson’s continue to show the incredible impacts simple lifestyle changes like stress reduction, getting enough sleep, a healthy diet rich in nutrients and exercise can have on not just your quality of life, but the actual experience of Parkinson’s symptoms like tremor, depression and fatigue. Research also suggests exercise may even help protect the areas of the brain affected by Parkinson’s from getting worse (a phenomenon known as neuroprotection), which may slow the progression of Parkinson’s.
Here are some overall tips to take action after being diagnosed to live well with Parkinson’s:
- Listen. Start to pay more attention to your body and report any changes to your healthcare team. Listen also to family and friends who may see changes in you.
- Think holistically. Holistic health means that you look at the whole body and take an integrated approach. Every part of you is connected to and influenced by the other parts of you, so it is important to address Parkinson’s through the whole picture of lifestyle, diet, exercise, stress management, relationships, and personal and spiritual care and growth.
- Be informed. Learn how personal and lifestyle habits can impact the symptoms of Parkinson’s. The more you know about Parkinson’s, the more empowered you’ll feel to form useful habits to combat your symptoms. For instance, physical activity is important at all stages of Parkinson’s. However, a regular exercise program will take time and energy from other aspects of your life. Knowing which activities to keep or eliminate will maximize the positive impact of the choices you can control.
- Be prepared. Organize your healthcare documents and other information important to your medical team. Prepare for your medical appointments in order to get the best results from your time with the doctor.
- Be your own best advocate. Ask for a referral to a rehabilitation therapist if you haven’t received one. Talk with your healthcare team about your goals and concerns. Make them aware of areas you want to improve. For instance, if using a keyboard has become difficult, ask your doctor about strategies to improve hand function. If you seek treatment early and are specific about symptoms or problems that are making everyday life frustrating, you’ll help your doctor tailor the most effective treatment plan for you.
- Prioritize the symptoms you can change. This may mean taking medicines on time to limit symptoms or beginning rehabilitative therapy to improve posture or volume of your voice. It will mean starting or renewing your commitment to daily exercise and may also include changing your lifestyle to promote overall health by losing weight, stopping smoking and eating a healthy diet.
- Learn to live with the symptoms you can’t change. Although a combination of medications, complementary therapies and lifestyle changes will help you manage Parkinson’s symptoms, symptoms will still show up in different ways in your life. Start to learn different ways to live with the reality of symptoms as you manage them or ways to manage those symptoms that may be less responsive to the various therapies. For instance, if a bothersome tremor doesn’t always respond to medications, try reducing the anxiety that can make tremor worse. Practicing deep breathing relaxation techniques and intentionally reduce stress as other ways to help manage tremor.
- Be engaged. Seek out support from people with whom you feel comfortable sharing your thoughts and concerns. Your support system may include people you trust, such as specific family members, friends or individuals from church or work. Support groups can be helpful, as are group exercise classes and gathering with small groups of other people living with Parkinson’s who encourage and inspire you.
- Stay positive. A positive attitude keeps the focus on what you can do, not what you can’t. It fosters hope. If you’re having a bad day, search for unique daily victories and remember tomorrow will bring another opportunity to live well.
- Learn about clinical research trials that may be available to people with early Parkinson’s. Many researchers seek to understand the impact of medicines in the early stages before any other medicine has been started, and they are always looking for participants. Another especially important area of research is the study of neuroprotective or therapies that can slow or potentially even stop the progression of Parkinson’s. While participating in a research trial is not for everyone, you may be empowered by participating in the latest research and by potentially advancing the science of Parkinson’s for the greater community. Learn more online at clinicaltrials.gov and foxtrialfinder.org.
Every Victory Counts® manual for living well with Parkinson’s