About Parkinson’s

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What is Parkinson’s?

Newly Diagnosed

Young Onset Parkinson’s

Advanced Stages

Parkinson-Plus Syndromes

Living with Parkinson’s disease is a journey encompassing many stages and challenges. It involves adapting to your diagnosis, recognizing life changes, maintaining independence while striving to live well, and understanding when to seek help. A wide range of emotions is normal and some days will be easier than others.

As the disease progresses, some changes may be necessary. Lifestyle is a personal matter requiring thought and consideration. You may find it helpful to discuss possible changes with your loved ones who might be most affected.

As the disease progresses, knowledge becomes a powerful tool. Stay in control of Parkinson’s by understanding your problems and seeking help. At Parkinson Society British Columbia, we have resources to support you every step of the way. Regardless of where on the journey you, your partner, or your family member are, you are not alone.

Senior women and her granddaughter talking in living room

What is Parkinson’s disease?

What is Parkinson's disease?

An Overview [brochure]

Parkinson’s disease (PD) is a progressive, neurodegenerative disorder caused by a loss of the cells that produce dopamine in an area of the brain called the substantia nigra. Dopamine is a brain neurotransmitter that sends signals from one nerve cell to another. It affects the parts of the brain that control smooth, voluntary movements, such as walking, writing, throwing a ball, or buttoning a shirt. Dopamine is also crucial for regulating involuntary functions, such as blood pressure and bowel function. The symptoms of Parkinson’s typically appear when over half of the dopamine-producing cells are lost.

In addition to the motor symptoms of PD, the loss of dopamine also causes a number of non-motor symptoms, including depression, anxiety, sleep problems, fatigue, pain, cognitive difficulties, and more. Many non-motor symptoms may even manifest many years prior to an official diagnosis of Parkinson’s.

It is not known why the dopamine-producing 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.

How is Parkinson’s diagnosed?

There are no specific brain scans or laboratory tests to confirm the diagnosis of Parkinson’s. Neurologists diagnose it with a careful evaluation of a person’s medical history and a physical examination. Tests may be done to rule out other conditions that resemble Parkinson’s.

Is there a cure?

At the present time, there is no known cure. Medications primarily help control the symptoms of Parkinson’s. However, many people live full, productive lives. With the treatment options now available, life expectancy for someone with Parkinson’s is similar to someone without the disease. Each year, more and improved treatments are being introduced.

The most powerful non-pharmacological treatment available for Parkinson’s is exercise. Many new studies are being published every year about its neuroprotective benefits. In fact, exercise is the only method of symptom management proven universally effective and essential for all people with Parkinson’s.

Who develops Parkinson’s? How prevalent is it?

There are approximately 100,000 people with Parkinson’s in Canada, approximately 17,500 (Ministry of Health, 2023/24) in British Columbia. Around 10-20% of individuals are diagnosed with Parkinson’s before the age of 50; of this group, 50% are diagnosed before age 40. This is known as Young Onset Parkinson’s Disease. Parkinson’s is usually diagnosed between the ages of 55 and 65, with 60 being the average age of diagnosis. Parkinson’s affects 1% of adults over the age of 65 and is slightly more common in men.

Is Parkinson’s genetic?

A genetic cause of Parkinson’s appears in only a very small number of cases, approximately 5-10%. Where it may appear to run in families, researchers are looking at environmental factors shared by the family or community, in addition to examining potential genetic links. The vast majority of cases of Parkinson’s disease are from unknown causes.

What are the symptoms?

The most common motor symptoms are:

  • Resting tremor – repetitive shaking movements occurring in the arms and/or legs at rest. (Tremors are the first symptom to appear in about 70% of people with Parkinson’s.)
  • Rigidity – increased stiffness in muscles and joints.
  • Bradykinesia – slowness of movement, including all actions, such as walking and writing.
  • Lack of coordination – postural impairment or loss of balance.

Other symptoms include:

  • Hypomimia – reduced facial expression, making a person appear uninterested or sad when they are not.
  • Hypophonia – speaking in a very soft voice. This may involve deterioration in the rhythm and quality of the voice.
  • Micrographia – small, cramped handwriting.
  • Sleep issues – including insomnia, REM sleep behaviour disorder, and daytime sleepiness.
  • Cognitive and mood changes, including:
  • Depression
  • Anxiety
  • Forgetfulness and confusion
  • Impulse control disorders, such as compulsive gambling or shopping
  • Dementia and hallucinations
  • Delusions
  • Urinary problems
  • Pain
  • Constipation

How does Parkinson’s progress? What can be expected?

Early symptoms generally occur gradually, but progress more rapidly in some people than others. If someone has a tremor, it may begin to interfere with daily activities, and other symptoms may appear.

Parkinson’s is a progressive disorder, meaning the symptoms may worsen over time, though the rate of this progression is different for each person. There is no way of knowing how slowly or quickly Parkinson’s may progress. Parkinson’s is, however, described as the most slowly progressing neurological disorder.

Does Parkinson’s affect mental health?

Mental illness is a term used to describe a disruption in the balance between mind, body, and spirit, and a change in one’s mental or emotional well-being. Psychological symptoms of Parkinson’s are considered to be as important as the physical symptoms.

Some people feel there is a stigma associated with mental health issues and some may still feel that psychological symptoms are an example of personal weakness. Do not allow these preconceptions to stop you from talking to your healthcare professionals and getting the help you need!

Note to caregivers:

  • Some caregivers report that the psychological changes that can accompany Parkinson’s are more difficult to deal with than the physical changes. It is therefore even more important for caregivers to look after themselves.
  • Adapted from Mind, Mood and Memory, published by the National Parkinson Foundation.

If it’s not Parkinson’s, what else could it be?

There are many causes of tremors and other symptoms associated with Parkinson’s disease and it may take time to make an accurate diagnosis. A neurologist who specializes in movement disorders is the best person to make or confirm a diagnosis. The following information describes other disorders that may be confused with Parkinson’s.

Many of the conditions described in this section are extremely rare.

Essential Tremor (ET)

  • Sources: International Essential Tremor Foundation, The Mayo Clinic
  • Essential Tremor is a chronic neurological condition characterized by involuntary, rhythmic tremor of a body part. The most frequently affected areas of the body are the hands, arms, and head, followed by the voice, tongue, legs, or trunk.
  • ET is considered a slowly progressive disorder, although for some people it may be relatively non-progressive and the tremor may be mild throughout life. Essential tremor isn’t caused by other conditions and it is a common movement disorder.
  • Medication is a common treatment and many people with ET benefit from drug therapy; however, not everyone is a candidate for the medications used to treat ET.
  • Surgery may be suggested to treat ET, but individuals are carefully selected as possible candidates for surgery, and surgical intervention is usually reserved for patients with severe, disabling tremor.
  • Finally, lifestyle changes, as well as physical and occupational therapy, may help individuals better perform tasks that are affected by ET.

Medication-Induced Parkinsonism

  • Some common medications can cause Parkinson’s-like symptoms. Medications frequently associated with the development of Parkinsonism (the name given to a group of disorders with similar features, including four primary symptoms: tremor, rigidity, slowness of movement, and postural instability) include antipsychotics, metaclopramide, reserpine, tetrabenazine, and some blood pressure medications, such as cinnarizine and flunarizine. Fortunately, the symptoms usually abate within weeks to months after discontinuing the problem medication.
  • This is one reason why it is very important to inform the medical staff in a hospital or clinic that you have Parkinson’s and what medications you are taking. A Medication Card, which may be obtained from Parkinson Society British Columbia, is a very useful tool for keeping track of your medications. The card contains a clear message regarding medications that must not be taken by a person with Parkinson’s.

Vascular Parkinsonism

  • Multiple small strokes can cause Parkinson’s-like symptoms. People with this disorder are more likely to have gait difficulty rather than tremors, and are more likely to have symptoms that are worse in the lower limbs rather than the upper limbs. Some will also report the abrupt onset of symptoms or give a history of a step form of symptom development (symptoms get worse, then plateau for a period, then get worse again). Treatment is the same as for Parkinson’s disease, but the results are often not as positive.

Parkinson’s-Plus Syndromes

  • Parkinson-plus syndromes are a group of neurological conditions that are similar to Parkinson’s disease, but have unique characteristics. These syndromes can be hard to diagnose because the symptoms mimic other conditions. Read more about these syndromes here.

Newly Diagnosed

How can I get in touch with someone about the next steps for my/my partner’s/my loved one’s new diagnosis?

Parkinson Society British Columbia has a number of resources and services available to support you in your Parkinson’s journey. You can email us at info@parkinson.bc.ca or call us at 1-800-668-3330 to set up a consultation.

How can I connect with people in similar situations for support?

Parkinson Society British Columbia facilitates New Diagnosis support groups for individuals who have been diagnosed in the last two years, as well as support groups for caregivers.

It is common for newly diagnosed individuals to feel a wide variety of emotional reactions, ranging from denial to relief to isolation, and it may be helpful to talk with others who are facing similar challenges. Support groups provide an atmosphere of mutual trust and support to help you live a full life with Parkinson’s.

If you are interested in attending a New Diagnosis support group meeting, please contact us at info@parkinson.bc.ca.

Find A Support Group

Quick Links

  • You Are Not Alone [brochure]
  • Understanding Parkinson’s and Moving Forward [booklet]
  • Adjusting to a New Diagnosis | Courtney Doherty, RCC [videos]
  • Newly Diagnosed Series [videos]

Young Onset Parkinson’s Disease (YOPD)

What is Young Onset Parkinson’s Disease?

Young Onset Parkinson’s Disease (YOPD) is defined as a diagnosis of Parkinson’s disease before the age of 40, although some studies include subjects up to age 50. Around 10-20% of individuals are diagnosed with Parkinson’s before the age of 50; of this group, 50% are diagnosed before age 40.

How does Young Onset Parkinson’s differ from later-onset Parkinson’s?

A small proportion of people with YOPD are at increased risk of having an inherited form of Parkinson’s.

Symptoms of YOPD usually progress much slower, with individuals often able to continue living a full life after diagnosis, including holding a full-time occupation, taking part in activities (such as sports), and even in some cases, giving birth to healthy babies.

The needs of those with YOPD differ from those with later-onset Parkinson’s. Younger individuals face unique challenges in their journeys. Being diagnosed with a chronic, progressive neurological condition in the prime of life is likely to be a very emotional experience. You may be at a stage where you have young children and are working full-time, and now have a Parkinson’s diagnosis on top of these life stressors. Parkinson Society British Columbia has resources and support for you to turn to.

Quick Links

  • Young Onset Parkinson’s Disease Webinar Series [videos]
  • Advice for the Newly Diagnosed from People with YOPD [booklet]
  • Young Onset Parkinson’s Disease Support Groups [Community Care Directory]

Advancing Stages

What can I expect in advancing stages of Parkinson’s?

The Parkinson’s journey is different for everyone. As the disease progresses, it is recommended to develop a specific care plan to meet your needs. You may find that you require more assistance with mobility, personal care, and other aspects of your daily routine. Medications may become less effective in treating all symptoms. In the advancing stages of Parkinson’s, care is focused on safety, comfort, and providing the best possible quality of life.

Quick Links

Parkinson’s Plus Syndromes

What are Parkinson’s-Plus Syndromes?

Parkinson’s-Plus Syndromes are a group of conditions that cause similar symptoms associated with Parkinson’s disease, in addition to other unique symptoms. These conditions with similar symptoms to Parkinson’s disease, known as Parkinsonism, may be confused with Parkinson’s, resulting in more time needed to make an accurate diagnosis. A neurologist who specializes in movement disorders is the best person to make or confirm a diagnosis.

The Parkinson’s-Plus Syndromes described below are rare. More information on the following conditions can be found on the website for the National Organization for Rare Disorders.

Progressive Supranuclear Palsy (PSP)

Early development of balance problems, frequent falls, rigidity or stiffness of the trunk of the body, and (eventually) eye movement problems can be symptoms of PSP. Symptoms usually begin after age 50 and progress more rapidly than those associated with Parkinson’s disease.

The most characteristic eye movement abnormality is called vertical gaze paralysis, making looking up and looking down very difficult. People with PSP may experience frequent falls while walking down stairs because they cannot look down. Dementia, depression, and alterations in mood may develop later in the disease. Speech therapy, physical therapy, and antidepressants may alleviate symptoms. While there is no specific treatment for PSP, some Parkinson’s medications may provide some symptom relief.

See the Society for Progressive Supranuclear Palsy.

See the Progressive Supranuclear Palsy Society of Canada.

Corticobasal Degeneration (CBD)

The least common cause of symptoms similar to Parkinson’s is CBD. It often affects one side far more than the other, and may progress more rapidly than Parkinson’s disease. The initial symptoms of CBD usually develop after age 60 and include asymmetric bradykinesia (uncontrolled movement focusing on one side or the other), rigidity, limb dystonia (abnormal, prolonged, and repetitive muscle contractions that may cause twisting or jerking), balance problems, and speech/language problems. There is often marked and disabling apraxia (the loss of ability to carry out an intended movement, even though there is no weakness or sensory loss in the arm or leg).

There is no specific treatment for CBD. Supportive treatment such as botulinum toxin for dystonia, antidepressant medications, and speech and physical therapy may help. Levodopa and dopamine seldom offer benefit.

Multiple System Atrophy (MSA)

MSA is a neurodegenerative disease of unknown cause. Initially it may be difficult to distinguish from Parkinson’s disease, but it is far less common and progresses more rapidly. The average age of onset is in the mid-50s. Symptoms include one or a combination of the following: bradykinesia, poor balance, abnormal autonomic function, rigidity, or difficulty with coordination. Abnormalities of autonomic function include impotence, low blood pressure upon standing (orthostatic hypotension), excessive or reduced sweating, and constipation.

There are three different subtypes of MSA:

  • Striatonigral degeneration (SND) is characterized by Parkinson’s symptoms, but without much tremor and with poor response to Sinemet.
  • Shy-Drager syndrome is characterized by Parkinson’s symptoms and autonomic abnormalities.
  • Olivopontocerebellar atrophy (OPCA) may involve a lack of coordination and clumsiness which affect balance and gait.

See the Multiple System Atrophy Coalition.

Dementia with Lewy Bodies (DLB)

This disorder is characterized by early dementia, prominent hallucinations, changes in cognitive functioning throughout the day, and symptoms similar to Parkinson’s disease. Other symptoms include difficulties with attention, problem solving, planning, and with recognizing figures and images.

See the Lewy Body Dementia Association.

Additional Resources

Here are other resources that individuals diagnosed with either PSP, CBD or MSA can access:

Parkinson Society British Columbia (PSBC) aims to offer support to all those affected by Parkinson’s disease, which extends to Parkinson’s-Plus Syndromes. Although we may not have all the answers, we have heard many of the questions and will help find more information.

Resource Centre

Access 400+ helpsheets, brochures, booklets, and videos, featuring prominent Parkinson’s researchers and experts on a wide variety of topics, to support your understanding of the disease.