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What is it like living with parkinsons?

Parkinson’s disease is a progressive nervous system disorder that affects movement. Symptoms start gradually, sometimes starting with a barely noticeable tremor in just one hand. Tremors are common, but the disorder also commonly causes stiffness or slowing of movement.

In the early stages of Parkinson’s disease, your face may show little or no expression. Your arms may not swing when you walk. Your speech may become soft or slurred. Parkinson’s disease symptoms worsen as your condition progresses over time.

Although Parkinson’s disease can’t be cured, medications might significantly improve your symptoms. Occasionally, your doctor may suggest surgery to regulate certain regions of your brain and improve your symptoms.

Friends and family can be your best allies in dealing with Parkinson’s. They’ll listen and offer support. But the cooperation of coworkers, neighbors and others you interact with daily is also important.

What are the early signs of Parkinson’s disease?

Early signs and symptoms of Parkinson’s disease can be subtle and occur gradually. Affected people may be slow to acknowledge that they have symptoms of Parkinson’s disease. Symptoms often begin on one side of the body and usually remain worse on that side, even after symptoms begin to affect both sides.

Early signs and symptoms of Parkinson’s disease may include:

  • Tremor. A tremor, or the shaking of a limb when at rest, is a common early sign of Parkinson’s disease. Tremor often starts in a hand. You may rub your thumb and forefinger back and forth, known as pill-rolling tremor.
  • Slowed motion (bradykinesia). Over time, Parkinson’s disease may slow your movement, making simple tasks difficult and time-consuming. Your steps may become shorter when you walk. It may be difficult to get out of a chair. You may drag your feet as you try to walk.
  • Rigid muscles. Muscle stiffness may occur in any part of your body. The stiff muscles can be painful and limit your range of motion.
  • Impaired posture and balance. Your posture may become stooped, or you may have balance problems as a result of Parkinson’s disease.
  • Loss of automatic movements. You may have a decreased ability to perform unconscious movements, including blinking, smiling or swinging your arms when you walk.
  • Speech changes. You may speak softly, quickly, slur or hesitate before talking. Your speech may be more of a monotone rather than with the usual inflections.
  • Writing changes. It may become hard to write, and your writing may appear small.

What causes Parkinson’s disease?

In Parkinson’s disease, certain nerve cells (neurons) in the brain gradually break down or die. Many of the symptoms are due to a loss of neurons that produce a chemical messenger in your brain called dopamine. When dopamine levels decrease, it causes abnormal brain activity, leading to symptoms of Parkinson’s disease.

The cause of Parkinson’s disease is unknown, but several factors appear to play a role, including:

  • Your genes. Researchers have identified specific genetic mutations that can cause Parkinson’s disease. However, these are uncommon except in rare cases with many family members affected by Parkinson’s disease.
  • Environmental triggers. Exposure to certain toxins or environmental factors may increase the risk of later Parkinson’s disease, but the risk is relatively small.
  • Your age. Young adults rarely experience Parkinson’s disease. It ordinarily begins in middle or late life, and the risk increases with age. People usually develop the disease around age 60 or older.

How is Parkinson’s disease diagnosed?

No specific test exists to diagnose Parkinson’s disease, so doctors may rely on medical history and a neurological examination to make a diagnosis. Imaging tests and lab tests may help rule out other conditions that can cause similar signs and symptoms.

Neurological examination. The doctor will assess your posture, your walking ability, coordination, muscle rigidity and tremors, eye movement, and speech and facial expression. Based on this examination, your doctor can determine if you have signs of Parkinson’s disease.

Imaging tests. Brain scans such as CT scans, MRI scans or PET scans may be used to check for abnormal brain structures or brain changes associated with Parkinson’s disease and conditions with similar symptoms.

Laboratory tests. These tests may be used to help exclude conditions other than Parkinson’s disease.

What are the stages of Parkinson’s disease?

Parkinson’s disease often progresses through stages over several years. Although the disease may progress differently for each person, stages may include:

Stage 1

Symptoms on just one side of the body, usually with tremor in one hand, arm or leg. Friends and family may notice changes in posture, walking and facial expressions.

Stage 2

Symptoms affect both sides of the body. Tremor may get worse, cause trouble walking and impose limitations on your speech and movements. Daily tasks may take longer to complete.

Stage 3

Loss of balance and slowness of movements makes it difficult to walk or stand. Tremor or shaking can worsen. Speech may become difficult to understand. Writing and eating also becomes compromised.

Stage 4

Severe symptoms significantly limit your ability to stand, walk, eat and communicate. 24-hour nursing care often becomes necessary in the late stages of the disease. Mental symptoms may include anxiety, confusion, stress and hallucinations.

Stage 5

Cachexia, or general physical decline, indicates late-stage Parkinson’s disease. You’ll require a wheelchair or be unable to move or communicate. Symptoms at this stage can also include difficulty swallowing, bladder problems or bed sores.

What are the complications of Parkinson’s disease?

Parkinson’s disease is often accompanied by these additional problems, which may be treatable:

  • Thinking difficulties. You may experience cognitive problems (dementia) and thinking difficulties (mild cognitive impairment). These symptoms usually occur in the later stages of Parkinson’s disease. Such cognitive problems aren’t very responsive to medications.
  • Chewing and swallowing problems. You may develop problems with chewing and swallowing as your condition progresses.
  • Sleep problems and sleep disorders. People with Parkinson’s disease often have sleep problems, including waking up frequently throughout the night, waking up early or falling asleep during the day. People may also experience rapid eye movement sleep behavior disorder, which involves acting out your dreams.
  • Bladder problems. Parkinson’s disease may cause bladder problems, including being unable to control urine or having difficulty urinating.
  • Blood pressure changes. You may feel dizzy or lightheaded when standing due to a sudden drop in blood pressure (orthostatic hypotension).
  • Smell dysfunction. You may experience problems with your sense of smell. You may have difficulty identifying certain odors or the difference between odors.
  • Fatigue. Many Parkinson’s disease patients experience fatigue, especially later in the day. Fatigue may improve with exercise.
  • Pain. Some people with Parkinson’s disease develop aching muscles, intense muscle cramps or dystonia.
  • Sexual dysfunction. Some people with Parkinson’s disease notice a decrease in sexual desire or performance.
  • Constipation. Many people with Parkinson’s disease develop constipation, mainly due to a slower digestive tract.
  • Depression. You may experience depression, sometimes in the very early stages. Depression can be due to the chemicals that control emotions becoming out of balance, or in reaction to the stresses of coping with Parkinson’s disease.

How is Parkinson’s disease treated?

There’s no cure for Parkinson’s disease. Therapy focuses on treating your symptoms and improving your quality of life. Parkinson’s disease treatment options may include:

  • Medications. Medications, such as carbidopa-levodopa, help relieve many PD symptoms, but they don’t slow or stop disease progression. Some medications cause side effects such as nausea, dizziness or lightheadedness.
  • Therapies. Your doctor may recommend speech or occupational therapy to address Parkinson’s symptoms.
  • Surgery. In some cases, surgery may be appropriate if you have Parkinson’s disease.
  • Lifestyle modifications. Making healthy lifestyle choices by exercising, eating healthy and getting enough rest may help you manage symptoms.

It can be challenging to deal with Parkinson’s disease treatment side effects. You may need to try different medications and work closely with your doctor to manage side effects.

Medications for Parkinson’s disease

Drugs to treat Parkinson’s disease in the early stages often include:

  • Carbidopa-levodopa. Your doctor may initially prescribe carbidopa-levodopa, a standard drug for treating Parkinson symptoms such as tremors, muscle stiffness and difficulty walking. This drug can help restore dopamine levels in the brain.
  • Dopamine agonists. Instead of replenishing dopamine, these medications mimic dopamine effects. They are sometimes used alone in early stage Parkinson’s disease and sometimes with carbidopa-levodopa.

Other medications that may help treat Parkinson’s disease include:

  • MAO B inhibitors. These medications include selegiline and rasagiline. They help prevent the breakdown of brain dopamine.
  • Catechol O-methyltransferase (COMT) inhibitors. Entacapone is an example. These drugs help keep dopamine levels high.
  • Anticholinergics. These drugs, including trihexyphenidyl, benztropine and ethopropazine, decrease the activity of the neurotransmitter acetylcholine and help control tremors and muscle rigidity.

As the disease progresses, symptoms usually become more severe and problematic, requiring stronger medications such as:

  • Amantadine. Used to reduce involuntary movements (dyskinesias) caused by carbidopa-levodopa therapy.
  • Apomorphine. This rescue medication is a fast-acting injection for temporarily improving movement symptoms, usually when your medications wear off.

Therapies for Parkinson’s disease

Along with medications, therapy can help manage Parkinson’s disease symptoms. Therapy may include:

  • Exercise. Exercise may help reduce muscle stiffness, low blood pressure, constipation, depression and fatigue.
  • Physical therapy. Can help you learn exercises to improve posture, walking and daily activities.
  • Occupational therapy. Teaches you how to adapt tools and utensils to manage daily tasks.
  • Speech therapy. Exercises can strengthen muscles involved in speaking and improve your breathing and voice projection.

Surgery for Parkinson’s disease

When Parkinson’s medications aren’t enough, surgery may be an option, including:

  • Deep brain stimulation. This surgery implants electrodes into the brain that are connected to a small device called a generator that can be externally programmed. The device stimulates the brain in a way that helps ease symptoms.
  • Pallidotomy. Also called pallidectomy, this procedure aims to improve dyskinesias as well as tremors by surgically destroying a small portion of the globus pallidus (a structure located deep in the brain).
  • Thalamotomy. Similar to pallidotomy, this surgery destroys a portion of a structure located between the cerebral cortex and the midbrain (thalamus).

Lifestyle and home remedies for Parkinson’s disease

Make healthy choices in your daily life to help manage Parkinson’s disease symptoms, including:

  • Begin an exercise program soon after diagnosis. Research shows exercise can improve muscle strength, balance and daily functioning. Tai chi may also help improve balance and prevent falls.
  • Improve sleep. Make sure your bedroom is cool and relaxing. Use toilets, outside noise or pain to disrupt your sleep as little as possible.
  • Eat more fiber. This can help prevent constipation, which is common with Parkinson’s disease.
  • Avoid protein interactions. Protein can interfere with how well carbidopa-levodopa works. If you experience an increase in symptoms after eating protein, talk to your doctor.

Ask your doctor which vitamins and supplements may help your symptoms. Some research has shown coenzyme Q10, creatine and vitamin D may provide some benefits. However, consult your doctor before taking supplements.

What’s the long-term outlook for people with Parkinson’s disease?

Parkinson’s disease is chronic and progressive. That means symptoms continue and worsen over time. The specific prognosis depends on the individual:

  • Age at diagnosis. The younger you are when diagnosed, the slower the disease tends to progress.
  • Symptoms at diagnosis. If signs and symptoms are primarily on one side of your body at diagnosis, the disease will likely progress more slowly.
  • Response to treatment. If initial medications are effective at relieving symptoms, disease progression may be slower.

On average, life expectancy for Parkinson’s disease is similar to that of people without the disease. However, in the late stages, Parkinson’s disease may cause complications such as choking, pneumonia or falls that can lead to death.

Coping and support for Parkinson’s disease

Learning you have an irreversible, progressive disease can be devastating. You may struggle with your emotions as you deal with the diagnosis. Consider these tips:

  • Learn all you can about Parkinson’s disease. Knowledge is power when it comes to managing symptoms, understanding treatments and working with your health care team.
  • Reframe your perspective. Accepting change can help you move beyond grief and anxiety.
  • Focus on what you have. Concentrate on the abilities you do have and modify activities so you can remain independent.
  • Simplify chores. Adjust your expectations for housework and other tasks rather than trying to maintain your previous standards.
  • Plan meaningful activities. Schedule activities for times when you usually have the most energy and least symptoms.
  • Seek support. Talk with family, friends, clergy or others about your struggles and triumphs.
  • Consider a support group. Support groups connect you with others who understand what you’re going through. Your doctor, a social worker or a local Parkinson’s disease group can help.
  • See a therapist. If you feel overwhelmed, find a therapist who can help you learn how to cope with the lifestyle changes brought on by your disease.
  • Protect your relationships. Involve your loved ones in counseling to help prevent misunderstandings.

Caring for someone who has Parkinson’s disease can be stressful. Seek help from family, friends and local support groups. Make time for yourself, and avoid feeling isolated or guilty.

Conclusion

Living with Parkinson’s disease presents many challenges, but there are treatments and lifestyle changes that can help manage symptoms and improve quality of life. While there is currently no cure, research is ongoing to find better treatments and possibly a cure one day. With medication, therapy, surgery, support and lifestyle modifications, many people with Parkinson’s are able to live active and fulfilling lives for many years after diagnosis.