What is Parkinson’s Disease?
Parkinson’s is a complex brain disease and everyone’s Parkinson’s journey is different. More than 100,000 Canadians live with Parkinson’s and 30 more are diagnosed every day.
What is Parkinson’s Disease?
Parkinson's Disease is a progressive neurological disorder that primarily affects movement. It occurs when certain nerve cells in the brain, specifically those responsible for producing dopamine, become impaired or die. Dopamine is a chemical messenger that plays a crucial role in coordinating smooth and controlled muscle movements.
What are the symptoms of Parkinson’s?
Parkinson’s is commonly characterized by its motor symptoms. But many people experience other changes that are often not identified as symptoms of the disease.
MOST COMMON (MOTOR) SYMPTOMS
Tremors
Slowness and stiffness
Impaired balance
Rigidity of the muscles
OTHER (NON-MOTOR) SYMPTOMS
Fatigue / excessive daytime sleepiness
Soft speech
Problems with handwriting
Stooped posture
Constipation and/or uncontrolled loss of stool
Bladder dysfunction
Sleep disturbances / insomnia
Cognitive changes / dementia
Mood disorders / anxiety / depression
Hallucinations
Delusions and impulse control disorders
Drooling
Change in taste and smell
Choking and swallowing difficulties
Nausea and vomiting
Unexplained changes in weight
Sexual dysfunction
Orthostatic hypotension
Restless leg syndrome
Leg swelling
Excessive sweating
Double vision
Non-motor symptoms can impact your quality of life and can be experienced prior to motor symptoms. You may not realize that these symptoms are linked to Parkinson’s disease. As a result, many non-motor symptoms often go untreated.
It’s important to note that “depression may be an early symptom of Parkinson’s.”
As many as 50 per cent of people with Parkinson’s experience the symptoms of clinical depression at some stage of the disease, yet depression and anxiety tend to be underdiagnosed symptoms of Parkinson’s. As a result, some people experience depression up to a decade or more before experiencing any motor symptoms of Parkinson’s.
Researchers believe that depression and anxiety in Parkinson’s disease may be due to chemical and physical changes in the area of the brain that affect mood as well as movement. These changes are caused by the disease itself.
How do I know if I am showing the early signs of Parkinson’s?
Recognizing the early signs of Parkinson's Disease can be challenging because symptoms can vary widely among individuals and may resemble other conditions. However, if you are experiencing any of the following symptoms, especially if they persist or worsen over time, it's essential to consult with a healthcare professional for a comprehensive evaluation:
Tremor: A tremor, often starting in one hand, is one of the most common early signs of Parkinson's. It typically appears as a rhythmic shaking or trembling, especially when the limb is at rest.
Bradykinesia: Bradykinesia refers to slowness of movement, which can manifest as difficulty initiating movement, reduced arm swing while walking, or a general sense of stiffness or rigidity in the limbs.
Muscle Rigidity: Muscle stiffness or rigidity, particularly in the arms, legs, or neck. This stiffness may be noticeable to you or your healthcare provider during a physical examination.
Postural Instability: Balance problems and difficulty maintaining posture, leading to frequent falls or a tendency to lean forward or backward, may develop as Parkinson's progresses. However, postural instability is typically a later symptom rather than an early one.
Changes in Handwriting: Parkinson's can cause changes in handwriting, known as micrographia, where handwriting becomes smaller and more cramped over time.
Loss of Smell: Some individuals may experience a diminished sense of smell or hyposmia, which can precede other motor symptoms by several years.
Changes in Voice: Parkinson's can lead to changes in voice quality, such as softness, monotone speech, or slurred speech.
Masked Facial Expression: Reduced facial expression or a "masked face" lacking in expression or animation is another early sign of Parkinson's.
Depression: It’s always important to mention changes in your mood to your doctor (even if they don’t ask) and especially if you have been struggling for weeks (or months).
It's important to note that experiencing one or more of these symptoms does not necessarily mean you have Parkinson's Disease, as many other conditions can cause similar symptoms. A thorough medical evaluation, including a neurological examination and possibly neuroimaging tests, is necessary to make an accurate diagnosis.
If you have concerns about your symptoms, it is imperative to seek guidance from a healthcare professional. Early diagnosis and intervention can lead to better management of symptoms and improved quality of life.
How do you get diagnosed with Parkinson’s?
Diagnosing Parkinson's Disease typically involves a thorough medical evaluation conducted by a neurologist or movement disorder specialist. The process often begins with a detailed medical history review and a comprehensive physical examination to assess symptoms and their progression. Neurological examinations may include assessments of motor function, coordination, balance, and reflexes.
Additionally, specific diagnostic criteria, such as the Movement Disorder Society Clinical Diagnostic Criteria, may be used to aid in diagnosis. These criteria help clinicians evaluate the presence and severity of characteristic motor symptoms associated with Parkinson's.
In some cases, neuroimaging tests such as magnetic resonance imaging (MRI) or positron emission tomography (PET) scans may be ordered to rule out other conditions that can mimic Parkinson's symptoms and to assess changes in the brain associated with the disease.
Furthermore, response to dopaminergic medications, which increase dopamine levels in the brain, can be used as a diagnostic tool. If symptoms significantly improve with these medications, it can support a diagnosis of Parkinson's Disease.
Overall, diagnosing Parkinson's Disease involves a combination of clinical assessment, medical history review, neurological examinations, and sometimes neuroimaging tests to reach an accurate diagnosis and rule out other potential causes of symptoms. Early diagnosis is crucial for implementing appropriate treatment strategies and managing the condition effectively.
Is there a cure for Parkinson’s Disease?
There is no cure for Parkinson's Disease, however, various treatments and therapies are available to help manage symptoms and improve quality of life for individuals with Parkinson's.
Medications are commonly prescribed to address motor symptoms by increasing dopamine levels in the brain or mimicking dopamine's effects. These medications can help alleviate tremors, stiffness, and slowness of movement. In advanced stages, surgical interventions such as deep brain stimulation (DBS) may be considered to help control symptoms.
Physical therapy, occupational therapy, and speech therapy can also play crucial roles in managing Parkinson's symptoms and maintaining mobility, independence, and communication skills. Additionally, lifestyle modifications, including regular exercise, a balanced diet, and adequate rest, can help individuals manage their condition more effectively and potentially slow disease progression.
Research into Parkinson's Disease continues, with ongoing studies exploring potential disease-modifying treatments and approaches aimed at better understanding the underlying mechanisms of the disease. While a cure remains elusive, advancements in research and treatment options offer hope for improved management and quality of life for those living with Parkinson's Disease.
Is Parkinson’s Disease hereditary?
Parkinson's Disease can sometimes have a genetic component, but in most cases, it is considered sporadic, meaning it occurs without any clear familial pattern. However, researchers have identified certain genetic mutations and variations that can increase the risk of developing Parkinson's Disease.
Approximately 10-15% of individuals with Parkinson's have a family history of the condition, suggesting a genetic predisposition in some cases. Specific genetic mutations, such as those in the LRRK2, SNCA, PARK2, PARK7, and PINK1 genes, have been associated with an increased risk of developing Parkinson's Disease. However, having these genetic mutations does not guarantee that someone will develop the condition, and many people with these mutations never develop Parkinson's.
It's essential to recognize that while genetics can play a role in Parkinson's Disease risk, environmental factors and other non-genetic factors also contribute to the development of the condition. Research into the interplay between genetics, environment, and Parkinson's Disease risk is ongoing and continues to provide insights into the complex nature of the disease. If someone has a family history of Parkinson's Disease, it may increase their risk slightly, but it does not mean they will inevitably develop the condition.
How does Parkinson’s Disease impact mental health?
Parkinson's Disease can have significant impacts on mental health in addition to its well-known effects on motor function. Individuals with Parkinson's may experience a range of mental health challenges, including mood disorders, cognitive changes, and psychiatric symptoms.
Depression and Anxiety: Depression is one of the most common non-motor symptoms of Parkinson's Disease, affecting up to 50% of individuals with the condition. Anxiety disorders are also prevalent. Both depression and anxiety can result from the stress of living with a chronic illness, changes in brain chemistry due to PD, or the impact of motor symptoms on daily life.
Cognitive Changes: Parkinson's Disease can lead to cognitive changes, including difficulties with memory, attention, and executive function. Some individuals may develop mild cognitive impairment (MCI), while others may progress to dementia in later stages of the disease. These cognitive changes can contribute to frustration, confusion, and emotional distress.
Psychosis and Hallucinations: Psychotic symptoms, such as hallucinations and delusions, can occur in Parkinson's Disease, particularly in advanced stages or with certain medications. These symptoms can be distressing for both individuals with Parkinson's and their caregivers, requiring careful management by healthcare professionals.
Sleep Disturbances: Parkinson's can disrupt sleep patterns, leading to insomnia, excessive daytime sleepiness, restless legs syndrome, and rapid eye movement sleep behavior disorder (RBD). Poor sleep quality can exacerbate mood disturbances and cognitive difficulties.
Stress and Coping: Managing the physical and emotional challenges of living with Parkinson's can be stressful, impacting mental well-being. Coping with changes in mobility, independence, and social functioning can lead to feelings of frustration, grief, and isolation.
How can a therapist or social worker help someone with Parkinson’s Disease?
A mental health professional can play a vital role in supporting individuals with Parkinson's Disease by addressing the emotional, psychological, and social aspects of living with the condition. Here are several ways in which therapists can help:
Emotional Support: Therapists provide a safe and supportive environment for individuals with Parkinson's to express their feelings, concerns, and frustrations related to their diagnosis and its impact on their lives. They can offer empathy, validation, and nonjudgmental listening, helping individuals navigate complex emotions such as sadness, anxiety, anger, and grief.
Cognitive Behavioral Therapy (CBT): CBT techniques can help individuals with Parkinson's Disease identify and challenge negative thought patterns, manage stress and anxiety, and develop coping strategies to address mood disturbances and cognitive changes. CBT can also target specific symptoms such as insomnia or phobias that may arise in the context of Parkinson's.
Mindfulness-Based Interventions: Mindfulness practices, such as meditation and relaxation exercises, can promote emotional well-being and reduce stress in individuals with Parkinson's. Therapists can teach mindfulness techniques to help individuals cultivate present-moment awareness, acceptance, and self-compassion, which can enhance resilience and improve overall quality of life.
Education and Psychoeducation: Therapists can provide psychoeducation about Parkinson's Disease, its symptoms, progression, and treatment options. By increasing understanding and awareness of the condition, individuals and their families can better cope with its challenges, make informed decisions about care, and access available support resources.
Family Counseling and Support: Parkinson's Disease can impact not only the individual diagnosed but also their family members and caregivers. Therapists can facilitate family counseling sessions to address communication issues, role changes, caregiver stress, and the emotional impact of caregiving on relationships.
Support Groups: Therapists may facilitate or recommend participation in support groups for individuals with Parkinson's and their caregivers. Support groups provide opportunities for peer support, sharing experiences, coping strategies, and practical advice in a supportive and understanding environment.
Collaboration with Healthcare Providers: Therapists can collaborate with other healthcare providers involved in the individual's care, such as neurologists, physical therapists, and occupational therapists, to ensure a comprehensive and coordinated approach to addressing both the mental and physical aspects of Parkinson's Disease.
Overall, therapists and mental health professionals can help individuals with Parkinson's Disease navigate the emotional challenges of their diagnosis, develop coping skills, and improve their overall well-being and quality of life.
What other supports will an individual with Parkinson’s Disease need?
Every individual’s experience with Parkinson’s is unique. How symptoms progress from one person to another will vary and as a result, living with Parkinson’s will require an individualized ‘holistic’ approach which will include all aspects of life.
Holistic care addresses both the motor and non-motor aspects of the condition, including mental health support. Treatment options may include medications, psychotherapy, support groups, and lifestyle modifications aimed at promoting emotional well-being and enhancing quality of life. Additionally, involving caregivers and loved ones in the care plan can provide essential social and emotional support for individuals with Parkinson's Disease.
Members of a care team might include some or all of the following:
Neurologist: ideally a specialist in movement disorders who might make or confirm the diagnosis, decide on treatment, adjust medication
Family doctor: ideally someone who is knowledgeable about Parkinson’s, to provide ongoing care, including annual physical exams
Parkinson’s nurse specialist: many movement disorder specialists have a nurse who specializes in Parkinson’s. The nurse can provide information on how to manage your condition.
Mental health professional: a psychotherapist or social worker who is an expert in mental and emotional health issues such as depression, or cognitive abilities
Physiotherapist: makes assessments with mobility, balance and posture; offers techniques on how to move safely; recommends sports or exercise programs
Occupational therapist: makes assessments with living and working environment to ensure safety; suggests equipment or devices that can maintain independence
Speech language pathologist: helps improve voice projection or swallowing difficulties
Dietician: advises on how to plan a healthy diet and maintain ideal weight; helps with dietary issues caused by medications
Social worker: advises on financial and family concerns; helps with accessing resources and services in your community
Other professionals: pharmacists can provide information on medication, drug reimbursements plans; a urologist can help with urinary problems or sexual functioning for men
What do family members need to know about caring for a loved one with Parkinson’s?
Caring for a loved one with Parkinson's Disease will be challenging. Family members who take on caregiving roles play a crucial role in supporting their loved one's physical and emotional well-being.
Here are several key things that family members should know when caring for someone with Parkinson's:
Educate Yourself: Take the time to learn about Parkinson's Disease, including its symptoms, progression, treatment options, and potential challenges. Understanding the condition can help you provide better care and support for your loved one.
Communicate Openly: Maintain open and honest communication with your loved one about their needs, preferences, and concerns. Encourage them to express their feelings and concerns, and listen attentively without judgment.
Be Flexible: Parkinson's symptoms can fluctuate and change over time, so be prepared to adapt your caregiving approach as needed. Flexibility and patience are essential when managing the unpredictable nature of the disease.
Encourage Independence: While providing support and assistance when needed, encourage your loved one to remain as independent as possible. Help them find ways to participate in activities they enjoy and maintain a sense of autonomy and purpose.
Promote Physical Activity: Regular exercise can help improve mobility, balance, and overall well-being in individuals with Parkinson's. Encourage your loved one to engage in physical activities that they enjoy, such as walking, swimming, or tai chi, and provide support as needed.
Ensure Medication Compliance: Help your loved one stay on top of their medication regimen, including taking medications on time and following dosage instructions. Keep track of medication schedules, refill prescriptions as needed, and communicate with healthcare providers about any concerns or side effects.
Provide Emotional Support: Living with Parkinson's can be emotionally challenging for both the individual and their caregivers. Offer emotional support, understanding, and reassurance to your loved one, and encourage them to seek professional help if needed.
Take Care of Yourself: Caregiving can be physically and emotionally demanding, so be sure to prioritize self-care and seek support when needed. Take breaks, practice stress-reduction techniques, and lean on other family members, friends, or support groups for assistance and guidance.
Plan for the Future: As Parkinson's progresses, it's essential to discuss and plan for future care needs, including potential changes in living arrangements, long-term care options, and advance directives. Having these conversations early can help ensure that your loved one's wishes are respected and that you're prepared for any eventualities.
Access Support Services: Take advantage of available support services, such as home healthcare aides, respite care, support groups, and community resources. These services can provide valuable assistance and relief for caregivers while enhancing the quality of life for individuals with Parkinson's.
By staying informed, communicating effectively, and providing compassionate care, family members can make a meaningful difference in the lives of their loved ones living with Parkinson's Disease.
In summary, Parkinson's Disease is a progressive neurological disorder characterized by the degeneration of certain nerve cells in the brain, particularly those responsible for producing dopamine. This depletion of dopamine leads to a range of motor symptoms such as tremors, rigidity, bradykinesia (slowed movements), and postural instability. Additionally, Parkinson's can cause non-motor symptoms including cognitive changes, mood disorders, and sleep disturbances. While there is currently no cure for Parkinson's Disease, various treatments and therapies are available to manage symptoms and improve quality of life for those affected. Early diagnosis, comprehensive care, and ongoing support are essential for navigating the complexities of this condition.
Resources to consider:
General Information:
Developed and authored with the McGill University Health Centre Patient Education Office with the support from Parkinson Canada, this guide will help you better understand Parkinson’s, treatment and care options, possible health problems, as well as when and where to find more help.
Parkinson’s Disease: An Introductory Guide
Canadian Parkinson’s Resources:
International Parkinson and Movement Disorder Society
Parkinson Association of Alberta
Identifying Depression in Parkinson’s:
Complete the Geriatric Depression Scale to record your feelings so you can discuss your symptoms with your doctor. Download the Answer Sheet and compare your responses.
Geriatric Depression Scale Answer Sheet
Identifying Non-Motor Symptoms in Parkinson’s:
Non-motor symptoms can sometimes be difficult to recognize. Therefore, it is important to make your doctor aware of them Here are some useful resources to record your symptoms so you can discuss them with your doctor:
Whatever it is, we’re here for you.
Life is uncertain. Jobs are stressful. Parenting is hard. Relationships take work. Families can be dysfunctional. And sometimes, love hurts. When you’re confronted by feelings, events, or issues that are making your life challenging, it’s okay to ask for some help.
