This document has been prepared to help you become more informed about Parkinson’s disease. It is designed to answer questions about Parkinson’s and how it may progress. Included are some suggestions on how to prepare for the Parkinson’s journey.

 

What is Parkinson’s disease?

Parkinson’s disease (PD) is a disorder of the brain, caused by a degeneration of the cells which produce dopamine in the substantia nigra area. It is not known why the cells are damaged or destroyed, although there are many theories. It is possible that genetics and the environment work together to cause Parkinson’s. Much more research is needed to completely understand how, why, and when this disorder occurs.

The symptoms of Parkinson’s appear when over half of the dopamine-producing cells are lost. Dopamine is a brain neurotransmitter which sends signals from one nerve cell to another. It affects the parts of the brain which control smooth, voluntary movements such as walking, writing, throwing a ball, or buttoning a shirt.

Dopamine is also essential for involuntary movements including control of blood pressure and bowel function. Loss of dopamine can also affect mood and thinking. Movement is controlled by dopamine, a chemical that carries signals between nerves in the brain. When cells that produce dopamine die or are damaged, Parkinson’s symptoms appear. Parkinson’s is a complex condition.

 

What are the symptoms of Parkinson’s?

The loss of dopamine can cause a variety of motor (movement) symptoms, including:

  • Tremor (shaking)
  • Muscle stiffness (rigidity)
  • Slowness of movement (bradykinesia)
  • Impaired balance

Other symptoms may also occur, such as:

  • Small handwriting
  • Soft speech
  • Stooped posture
  • Reduced facial expression
  • Shuffling when walking

In addition to the motor symptoms, you might notice non-motor symptoms, including:

  • Constipation
  • Sleep disturbance
  • Bladder urgency and frequency
  • Dizziness on standing
  • Fatigue
  • Depression: feeling sad, having less energy or losing interest in activities
  • Anxiety
  • Memory or cognitive problems

People with advanced Parkinson’s disease may encounter additional symptoms resulting from a combination of the disease’s progression and the medications used to manage it. The most common symptoms are hallucinations (seeing, hearing, smelling, feeling, or tasting things that are not really there, including animals or people). Very occasionally, some people experience delusions (having thoughts that are not real). Hallucinations and delusions are more common in people who have had the disease for a longer period of time and may be side effects of certain medications (Parkinson’s UK, n.d.).

If you experience symptoms associated with Parkinson’s, contact your doctor. Early assessment and diagnosis can help you manage Parkinson’s or identify other conditions that may be causing the symptoms.

 

Is Parkinson’s the same for everyone?

No. Each person with Parkinson’s is unique and may experience different symptoms. However, since Parkinson’s is a progressive condition, symptoms will usually worsen over time and new ones may appear. It is difficult to estimate how quickly or slowly Parkinson’s will progress in each person. It may progress more quickly in people who are older when the symptoms first began. Parkinson’s may progress less quickly when the main symptom is tremor, especially when it starts on one side of the body.

 

How is Parkinson’s treated?

Currently, there is no cure for Parkinson’s disease. However, many of the motor symptoms can be treated with medications. Medications used to treat the symptoms either replace the lost dopamine or mimic the action of dopamine in the brain. Medications can alleviate the symptoms, but do not slow the progression of Parkinson’s. As the symptoms change, medications may need to be adjusted. Non-motor symptoms may be treated by other types of medications. However, Parkinson’s can be challenging to manage because some treatments for non-motor symptoms can worsen the motor symptoms. It is important to discuss treatment options with your neurologist.

Some people with Parkinson’s may benefit from Duodopa® therapy (an intestinal pump administering a gel mixture of levodopa and carbidopa, which provides steadier and more prolonged “on” periods) and brain surgery (often known as deep brain stimulation or DBS). Surgical treatment for Parkinson’s can be beneficial for some people. Surgery is not a standard treatment for everyone, but can be considered after drug therapy has been tried. Talk with your neurologist to determine whether you might be a candidate for surgery. A comprehensive assessment will need to be done before a decision is made.

Although medication plays an important role in managing symptoms, the most promising evidence on living well with Parkinson’s is through physiotherapy and exercise. Exercises that are high in effort, amplitude, and specificity have been shown to have a neuroprotective effect in the brain and thus, may potentially slow down the progression of the disease.

 

What are the stages of Parkinson’s?

Although progression is not the same for everyone, knowing the typical stages of Parkinson’s can help one cope with changes when they occur. The stages are determined based on severity of symptoms and the limitations imposed on daily activities (Hoehn & Yahr, 1967):

Stage 1: Mild symptoms appear that are usually confined to one side of the body only, in addition to changes in posture, walking pattern, and facial expressions.

Stage 2: Symptoms start to appear on both sides of body. Daily tasks may become more difficult.

Stage 3: Mid-stage Parkinson’s, where impaired balance and slowness of movement become more apparent. The person remains independent, but may experience symptoms that impair daily activities, such as dressing, washing, and eating.

Stage 4: Symptoms become more severe, and the person requires assistance for walking/standing and daily activities. The person is unable to live independently.

Stage 5: Advanced and debilitating stage where a wheelchair is required and there may be a need for long-term care in a facility if receiving adequate care at home is not possible. Multiple motor and non-motor symptoms are present.

 

How will I know when Parkinson’s has progressed?

Although everyone is different, there are signs that Parkinson’s is progressing. You may find that it takes longer or more effort to perform daily activities, such as getting dressed. Tremor on one side of your body may now appear on both sides. You may notice significant changes in the way you walk, from slowness to a shuffle. Symptoms may be worse one day and not the next. You may notice that you need to take your medications more frequently, or require higher doses or a combination of medications to control your symptoms.

It is important to be aware of changes and tell your doctor when you notice them. Ask your carepartner or family if they have noticed changes, such as difficulty hearing you talk. Involve healthcare professionals, such as speech pathologists or home care workers, to help you manage the daily challenges of Parkinson’s.

 

How long will I live with Parkinson’s?

Depending upon your age at onset, how you manage the symptoms, and your general health, you can live an active life with Parkinson’s. In most cases, one’s life is not shortened. However, as you age and as the disease progresses, there will be increased risks and secondary impairments. For example, impaired balance can lead to falls; swallowing problems, if not managed, can lead to pneumonia. Parkinson’s is known as a chronic (long term) condition that will require ongoing monitoring and management to maintain one’s quality of life.

 

What about other health conditions?

Parkinson’s will not exclude you from the possibility of developing other health concerns. Distinguishing between normal aging, Parkinson’s symptoms, and those of another condition can be challenging. For example, memory or concentration changes can be a side effect of medications, a non-motor symptom of Parkinson’s, or a separate condition. Ensure you are working with healthcare professionals who are knowledgeable about Parkinson’s, especially with the need to follow your medication routine. It is important to maintain a healthy lifestyle (e.g., good nutrition, staying active and socially engaged).

 

What approach can I take?

Learn as much as you can about Parkinson’s. Parkinson Society British Columbia (PSBC) has many resources to help you manage the condition. Reducing stress in your life will make a difference. Join a Parkinson’s support group, or participate in any of the many Parkinson’s-specific exercise listings on PSBC’s website. Staying as active as possible and maintaining a positive attitude is important. Humour can also be a great stress reducer. Many people find that a creative activity, such as painting, singing, playing an instrument, dancing, or writing poetry helps. Even if Parkinson’s affects your balance, you can still have a balanced life!

 

What do I need to know to plan my life?

Take stock of your life and communicate with those who are close to you (carepartner, family, friends).

  • Work options. Discuss options with your employer, such as adaptive technology or reduced workload. If it becomes necessary, find out if retiring early is an option. Many people who reduce their workloads find they are better able to focus on managing their Parkinson’s (i.e., more time to keep physically fit).
  • Finances. Will your benefits/medical plan cover drugs and other expenses, such as speech therapy? Do you have a retirement and/or pension plan? Do you qualify for disability insurance or the disability tax credit? Contact disability professionals before reducing your work hours to determine if this will affect the amount of eligible funding.
  • Legal and health planning issues. Discuss power of attorney and advance care planning with your family now. Discuss what quality of life means for you. By talking about these issues now, you can impact your care in the future. *Information on advance care planning varies from province to province.
  • Care issues. Seek the care of a neurologist or movement disorder specialist. Together you can develop a care plan that will meet your needs. Monitor your symptoms and communicate any changes so adjustments to medications can be made.
  • Home adaptations and equipment. An occupational therapist assessment may be needed to help evaluate your mobility and determine whether adaptive devices and home equipment can help you maintain your independence for as long as possible.
  • Personal choices. As Parkinson’s progresses, you will be faced with making choices about your life. Symptoms and medications can affect your ability to drive safely. Knowing this may happen and planning for it can make the decision easier.

 

What do carepartners need to know?

If you are a carepartner or family member, Parkinson’s will affect your life, too. Learn as much as you can. Carepartners often believe they will remain healthy and always be able to provide care. However, carepartners may burn out and become ill themselves.

Take care of yourself: Continue to enjoy your own interests; take time to relax; maintain a healthy lifestyle, including exercise and good nutrition; and consider using services, such as home care. Have an “emergency plan” in case you become ill and build a network of support. Contact Parkinson Society BC for information about Parkinson’s and a referral to a support group.

 

How do I begin the Parkinson’s journey?

The Parkinson’s journey will be different for everyone. To help you stay the course, think about what is important to you. Some things to consider may include:

  • How will you manage your Parkinson’s symptoms?
  • How will you minimize side effects of medications?
  • How will you maintain your emotional wellbeing?
  • How will you ensure you continue your work or hobbies?
  • How will you maintain relationships with family and friends?
  • How will you maintain your independence?

Whatever you choose, maintaining your quality of life on a daily basis is important.

 

Where can I find information?

Contact Parkinson Society British Columbia by calling us at 1-800-668-3330 toll-free or 604-662-3240, emailing us at info@parkinson.bc.ca, or visiting our website: www.parkinson.bc.ca.

 

Sources

AAN Guideline Summary for Patients and their families: Diagnosis, prognosis, and treatments for newly diagnosed Parkinson Disease.

AAN Guideline Summary for Patients and their families: Screening and treatment for depression, dementia, and psychosis with Parkinson Disease.

Hoehn, M. M. & Yahr, M. D. (1967). Parkinsonism: Onset, progression, and mortality. Neurology, 17(5). 427-442. DOI 10.1212/WNL.17.5.427

Parkinson Foundation: Stages of Parkinson’s: www.parkinson.org/Understanding-Parkinsons/What-is-Parkinsons/Stages-of-Parkinsons

Parkinson’s UK (n.d.). Hallucinations and delusions – as a side effect. www.parkinsons.org.uk/information-and-support/hallucinations-and-delusions-side-effect

 

The contents of this document are provided for information purposes only, and do not represent advice, an endorsement or a recommendation, with respect to any product, service or enterprise, and/or the claims and properties thereof, by © Parkinson Canada 2020.


Last updated: September 20, 2023