Parkinson's disease is degenerative neurological disorder resulting from nerve cells in the brain not producing enough of the chemical dopamine, which regulates movement. Parkinson’s disease develops gradually, often starting on one side of the body as a slight tremor in one hand, for example. As the disorder progresses, the trembling may spread to both sides of the body and be accompanied by other symptoms such as muscle stiffness, slowing of movement, and deterioration in balance and coordination. A minority of those with Parkinson's will eventually experience dementia as their disease progresses, including loss of memory and other cognitive functions.
If you or a loved one has been diagnosed with Parkinson’s disease, it’s important to know that you’re not alone. Recent research suggests that more than one million people in the United States and more than five million worldwide currently live with Parkinson's disease. It is more common in men than in women and while it affects about one in 100 people over the age of 60, it can also impact some younger adults.
Still, there is much we don’t know about the disease. In some cases it may be caused by genetics, although even if you have someone in your family with Parkinson’s disease, the risk remains small. Exposure to toxins in the environment, such as herbicides and pesticides, may also play a role in causing Parkinson’s, but again the risk appears small. Despite the questions that remain unanswered, there is hope. While there is no cure for Parkinson’s disease yet, there are a number of treatments and lifestyle changes that can substantially reduce or delay the onset of symptoms and help you enjoy a full life.
Parkinson’s disease affects people differently. Not everyone will experience all the symptoms of Parkinson’s and the progression of the disease can also vary greatly from person to person. There’s no way to predict which symptoms you will get or when you will get them. Most of the symptoms of the disease involve the disruption of motor functions (muscle and movement). However, lack of energy, pain, and changes to mood and memory can also occur as part of the disease.
In most cases, symptoms begin gradually and may include both primary and secondary symptoms of Parkinson’s disease.
Primary symptoms of Parkinson’s disease
- Tremors are the most well-known symptom of Parkinson’s disease and often occur in the hands, fingers, forearms, feet, mouth, or chin. Typically, tremors take place when the limbs are at rest as opposed to when you’re moving.
- Slow movement (Bradykinesia) – manifests as a slowness in voluntary movement such as standing up, walking, and sitting down. This happens because of delayed transmission signals from the brain to the muscles. This may lead to difficulty initiating walking, but in more severe cases can cause “freezing episodes” once you’ve begun walking.
- Rigidity – otherwise known as muscle stiffness, affects the limbs and trunk and often produces muscle pain that increases during movement.
- Poor balance – happens because of the loss of reflexes that help posture. This causes unsteady balance, which can often lead to falls, as well as poor coordination.
Secondary symptoms of Parkinson’s disease
In addition to the major symptoms, Parkinson's disease is often accompanied by secondary symptoms that may develop due to problems with how affected brain cells and nerves control the muscles. Again, not everyone with Parkinson’s will necessarily develop all or even some of these symptoms.
Secondary symptoms include:
- Difficulty showing facial expression, such as smiling or frowning.
- Handwriting may become small, cramped.
- Speech may become slow, whispery, or slurred.
- Trouble chewing or swallowing, risk of choking; excessive salivation, drooling.
- Difficulty with fine movements such as tying shoe laces or buttoning shirts.
- Loss of bowel and/or bladder control; constipation.
- Emotional changes such as anxiety, depression, fear, or isolation.
- Excessive sweating, sexual dysfunction, aches and pains.
- Scaling, dry skin on the face or scalp.
- Sleep problems, including waking up frequently during the night or suddenly falling asleep during the day.
- Cognitive problems (dementia), hallucinations, or loss of intellectual capacity, usually in the later stages of Parkinson's disease.
There are no lab tests that can definitively diagnose Parkinson's disease. Your doctor will diagnose Parkinson's disease based on your symptoms and a neurological exam that will likely include testing your reflexes and observing things like muscle strength throughout your body, coordination, balance, and other details of movement. It’s a good idea to make a list of all the symptoms you’re experiencing, even those that may seem unrelated, along with all medications you’re taking, in order to provide your doctor with as clear a picture as possible.
Your doctor may also perform tests—blood or urine tests, CT or MRI scans—to rule out other conditions that may be causing your symptoms, such as nerve dysfunction or narrowing of the spinal canal.
Parkinson’s Disease Screening Questionnaire
If you think you or a loved one may have Parkinson’s disease, this questionnaire can help. If you answer yes to several of the questions below, you should make an appointment with your doctor or visit a movement disorders specialist.
Have you or your loved one:
- Been getting slower in your usual daily activities?
- Is your handwriting smaller?
- Is your speech slurred or softer? Do you have trouble arising from a chair?
- Do your lips, hand, arms and/or legs shake?
- Have you noticed more stiffness?
- Do you have trouble buttoning buttons or dressing?
- Do you shuffle your feet and/or take smaller steps when you walk?
- Do your feet seem to get stuck to the floor when walking or turning?
- Have you or others noted that you don't swing one arm when walking?
- Do you have more trouble with your balance?
- Have you or others noted that you stoop or have abnormal posture?
Source: The Michael J. Fox Foundation
While there is no cure for Parkinson’s disease, there are several medications and other types of treatment available that can be effective in addressing the symptoms of the disease.
Commonly used medications for Parkinson’s disease
- Levodopa/Carbidopa (Sinemet) - This is a combination of levodopa (which converts in the brain to dopamine, the chemical that patients with Parkinson’s disease lack) and carbidopa (a chemical that helps the levodopa reach the brain). In Europe, levodopa is combined with a similar substance, benserazide (Madopar). Levodopa works very well for controlling symptoms for most patients but can cause some side effects, especially after several years. Its effectiveness also tends to decrease after several years.
- Entacapone (Comtan) - This is a medication that helps Sinemet work better when it starts to lose its effectiveness. It is also available together with levodopa and carbidopa in a combined product called Stalevo.
- Dopamine agonists - These include ropinorole (Requip) and pramipaxole (Mirapex), medications designed to enhance your body’s natural production of dopamine by stimulating your brain to produce more. They do not have as much risk of long-term side effects as levodopa, and they have less chance of losing effectiveness over time. However, they can cause dizziness and hallucinations, especially in the elderly or in patients with dementia. These factors make the agonists more suitable medications for younger patients. There is some theoretical evidence that the agonists may slow the progression of Parkinson’s disease, but scientists have not proven this definitively. Other side effects can also include swelling, sleepiness or compulsive behaviors such as hypersexuality, gambling, and eating.
- Monoamine oxidase inhibitors - These include selegiline (Eldepryl and Zelapar) and rasagaline (Azilect). These are less commonly used types of medication that increase the amount of dopamine available in the brain. They can be very helpful in a small number of patients with Parkinson’s disease. These medications often have fewer side effects than the dopamine agonists but can be harmful when used together with certain other medications, especially some types of antidepressants. Patients can also develop critically elevated blood pressure when combining these medications with certain types of foods.
Surgical treatment for Parkinson’s disease
There are some surgical options for patients with Parkinson’s disease, the most common of which is known as Deep Brain Stimulation (DBS). This form of surgery involves placing a wire into the brain connected to a pacemaker-type device implanted just below the skin in the chest. DBS may help to reduce the severity of muscle rigidity, tremors, and slowness of movements. It can also help stabilize medication fluctuations. As with any surgery, DBS does involve risks, including the risk of infection.
Certain self-help strategies and lifestyle changes may help improve symptoms and make living with Parkinson's disease easier.
- Learn all you can about Parkinson’s disease. The more you know, the more control you’ll feel and the better you’ll be able to cope with symptoms.
- Reduce stress. Stress can make many Parkinson’s disease symptoms worse, so it’s important to use relaxation techniques and other ways to manage your stress
- Physical therapy is often recommended by doctors and almost always beneficial.
- Avoid isolation. Reach out to family and friends. Join a support group for patients with Parkinson’s disease that can unite you with other people facing the same challenges. This can greatly help with feelings of isolation and depression that affect many Parkinson’s patients.
- Exercise can also greatly ease symptoms, as well as reduce stress and boost your mood. Research shows that patients with Parkinson’s disease who exercise regularly do better than those who don’t. Any type of physical activity that raises your heart rate can be beneficial.
Exercise tips for people with Parkinson’s disease
- Before starting an exercise regime, you should always check with your doctor.
- Pursue physical and occupational therapy.
- Exercise your face and jaw whenever possible.
- Practice bending, stretching, and breathing exercises.
- Try exercising in bed; it may be easier than on the floor.
- Build your walking skills, even if that means having to hold onto something.
- Try exercising in the water; it is easier on the joints. Many fitness centers, hospitals, colleges, and YMCA’s or YWCA’s offer water exercise programs.
Parkinson’s disease and depression
As many as 50 percent of people with Parkinson’s disease struggle with depression at some point, and that can seriously affect their overall health. In fact, recent research by the National Parkinson Foundation found that depression may be the single most important factor in determining the health of someone with Parkinson’s disease.
If you or a loved one with Parkinson’s disease exhibit symptoms of depression, it’s important to report them to your doctor and take steps to address the problem. Receiving treatment for depression can make it easier to handle the other challenges of Parkinson's disease. There’s a lot you can do to change how you feel, boost your outlook on life, and improve your overall health and well-being.
Safety tips for Parkinson’s disease:
These safety tips can help lower your risk of falls or other accidents due to poor balance and coordination:
- Ask your doctor to arrange a home safety evaluation.
- Use grab bars in the tub and shower.
- Use a bath chair or stool in the shower.
- Keep your floors smooth but not slippery.
- Store supplies in easy to reach cabinets.
- Make sure stairwells are well lit.
- Get nightlights for bathrooms and hallways.
- Keep walking areas free of clutter.
- Wear low-heeled, comfortable shoes when walking around. Avoid walking in slippery socks and slippers.
- Make sure carpets are fully tacked to the ground, and avoid throw rugs.
Tips for diet and eating with Parkinson’s disease
A common symptom of Parkinson's disease is difficulty chewing or swallowing food, while an upset stomach can be a side effect of some Parkinson’s medications.
- Cut foods into smaller portions to avoid choking and to encourage digestion.
- Remain upright for 30 minutes after eating.
- For upset stomachs linked to medication, try eating a small amount of non-protein based food before taking medication.
- Protein may block your body’s ability to absorb levodopa (Sinemet), so you may need to avoid taking this medication within 30 minutes before to 1 hour after eating meat or other high-protein foods.
Dementia is a less common feature of Parkinson’s disease. A number of people with Parkinson’s disease will develop Parkinson’s disease dementia. Parkinson’s patients who experience hallucinations and more severe motor control problems are at risk for dementia. For those patients with Parkinson’s disease who go on to develop dementia, there is usually at least a 10- to 15-year lag time between their Parkinson’s diagnosis and the onset of dementia.
Signs of dementia in Parkinson’s patients include:
Parkinson’s disease dementia is different from a similar disorder, known as Lewy Body Dementia (or Dementia with Lewy Bodies). Lewy Body Dementia is characterized by fluctuations in alertness and attention, recurrent visual hallucinations, and Parkinsonian motor symptoms like rigidity and the loss of spontaneous movement. In this disorder, cognitive problems such as hallucinations tend to occur much earlier in the course of the disease and often precede the difficulties with walking and motor control.
Is the dementia caused by Parkinson’s disease or something else?
Indications that dementia may be caused by something other than Parkinson’s disease include agitation, delusions (strongly held false beliefs), language difficulties, and early onset of memory symptoms. If these factors are present, your physician can test for other possible causes of dementia, such as a Vitamin B-12 deficiency or an underactive thyroid gland. Depression is also common in Parkinson’s patients and can mimic dementia by causing similar symptoms.
Additionally, Alzheimer’s disease and Parkinson’s disease are both common in the elderly, especially in those over 85. Therefore, patients with Parkinson’s who develop dementia may develop Alzheimer’s dementia as well. If a patient with established Parkinson’s disease develops signs of Alzheimer’s dementia, he or she will probably benefit from medications for Alzheimer’s dementia as well. The similarities in symptoms between Parkinson’s disease, Lewy Body Dementia, and Alzheimer’s disease, can make it difficult to determine the cause of the symptoms. Thus, obtaining a thorough consultation with a neurologist may be necessary to make a definitive diagnosis and establish an appropriate plan of care.
Caring for someone with Parkinson's disease can be a rewarding as well as challenging experience. It will likely involve adapting to new challenges over time as the disease progresses or new symptoms emerge.
- Become informed. Learn as much as you can about Parkinson’s disease and how it is likely to affect your loved one specifically, given his or her health history, age, and lifestyle.
- Communicate openly and provide reassurance, especially in the early stages following diagnosis, that Parkinson’s disease is only slowly progressive in most patients, does not shorten life expectancy, and that your loved one can still live a full life.
- Establish a medication and dietary schedule. Some Parkinson’s disease medications need to be taken promptly at specified times before or after meals, so it can help to establish a regular routine for meal and medication times.
- Help your loved one find alternative means of transport if he or she has to give up driving. That may involve researching public transportation, ride sharing, or community shuttle services.
- Learn to use the Heimlich maneuver to dislodge food stuck in the throat if your loved one has trouble chewing and swallowing food. It could be life-saving.
- Modify tasks. Allow your loved one to do things for him- or herself even if it takes longer. If necessary, break tasks that involve fine motor skills into easier steps and focus on success, not failure.
- Exercise together. Exercising is vital for the health and state of mind—of both of you. Take a class together or simply enjoy a walk outside.
- Look after yourself. Take regular breaks to avoid caregiver burnout, maintain social ties, and seek out opportunities to relax and have fun. Talking to others in similar situations can be very helpful.
Resources and References
Helpguide’s Yellow Pages
Resources for public assistance, social services, and other health and human services.
Parkinson's Disease Foundation – Includes several interesting features, including 'Ask the Expert' for specific questions and answers about the disease; and Caregiving and Family Support to help you find regional, national and Internet groups and support organizations. (Parkinson's Disease Foundation)
Parkinson's Disease Patient Information – Provides information about Parkinson's disease, current events, publication and video, fellowships and grants. (American Parkinson's Disease Association)
Medline Plus: Parkinson's Disease – A resource list of online articles and publications about Parkinson's including links to information about current research, specific medication and treatment regimens, support organizations and general information. (National Library of Medicine / National Institutes of Health)
Parkinson's Diagnosis Questions – Answers key questions on how to deal with a diagnosis of Parkinson’s disease. Site also offers many other resources for those with Parkinson’s and their loved ones. (The Michael J. Fox Foundation)
Support for Parkinson’s disease
Worldwide Education and Awareness for Movement Disorders – Provides a searchable international directory of support groups for people with movement disorders, including Parkinson’s disease. (WeMove)
Support in the US – Find care centers, support groups, and other resources in the US. (National Parkinson Foundation)
Support in Your Area of the UK – Offers a directory of support groups in the UK and a helpline 0808 800 0303. (Parkinson’s UK)
Parkinson's Australia – Offers links to state organizations that provide support and services. (Parkinson’s Australia)
Parkinson Society of Canada – Regional offices provide resources and support in Canada. (Parkinson Society Canada)
Caring for someone with Parkinson’s disease
Caring for Someone with PD – Tips on early-, mid-, and late-stage caregiving. (National Parkinson Foundation)
Caring for Someone with Parkinson's – Offers guidance for caring for someone with Parkinson’s disease or Parkinson’s disease dementia. (Parkinson’s UK)