Understanding Parkinson’s Disease: A Guide for Families

Published on October 23, 2023

Updated on November 18, 2023

If you have a loved one diagnosed with Parkinson's disease, you may have many questions and concerns about what to expect and how to provide the best care possible. As an experienced with extensive experience in managing terminal illnesses, I am here to you through the journey of Parkinson's disease and offer compassionate support. In this article, we will explore what Parkinson's disease is, the changes your loved one may experience over time, and practical tips to care for them from the onset of the disease until the end-of-life phase.

What is Parkinson’s Disease?

Parkinson's disease is a progressive neurological disorder that affects movement. It occurs when there is a loss of dopamine-producing brain cells, leading to motor and non-motor symptoms. Parkinson's is a chronic and gradually worsening condition, but each person's experience with the disease is unique. Here are some key points to understand:

Motor Symptoms

These are physical symptoms that affect movement and may include:

  • Tremors: Involuntary shaking, often in the hands, arms, legs, or jaw.
  • Bradykinesia: Slowness of movement, making everyday tasks more challenging.
  • Rigidity: Stiffness in muscles, causing and limiting mobility.
  • Postural Instability: Difficulty maintaining balance, leading to a higher risk of falls.

Non-Motor Symptoms

Parkinson's can also cause non-motor symptoms that impact various aspects of life, such as:

  • Cognitive Changes: Memory difficulties, confusion, and difficulty concentrating.
  • Emotional Changes: Mood swings, depression, and .
  • Sleep Disturbances: Trouble falling or staying asleep.
  • Autonomic Dysfunction: Problems with blood pressure regulation, digestion, and temperature control.

Changes Over the Course of Parkinson’s Disease

As Parkinson's disease progresses, your loved one may experience a range of changes in their physical, emotional, and cognitive health. It is essential to be prepared for these changes and adjust your caregiving approach accordingly.

  1. Early Stages: During the early stages, your loved one may have mild motor symptoms, such as a slight tremor or changes in their walking pattern. They might also experience some non-motor symptoms, like mood swings or sleep disturbances.
  2. Middle Stages: In the middle stages, motor symptoms become more pronounced, and your loved one may find it harder to perform everyday tasks. They might need assistance with activities like getting dressed, eating, or bathing. Non-motor symptoms, like cognitive changes and emotional fluctuations, might also worsen.
  3. Advanced Stages: As the disease advances, motor symptoms may severely impact mobility, and your loved one might require a wheelchair or assistance for most activities. Communication can become more challenging due to speech difficulties. Non-motor symptoms may also intensify, affecting quality of life.

Some healthcare providers will refer to five stages of Parkinsons where “early” mentioned above is stages 1 and 2, middle as 3, and advanced 4 and 5. Stage 5 is where hospice is typically involved as the patient is terminal at that point. Let's breakdown those stages.

Five Stages of Parkinson’s Disease

Five Stages Of Parkinsons Disease
Source: Understanding Parkinson's Disease: Stages, Risk Factors & More

Stage 1: Mild

  • Symptoms are minimal and may be missed.
  • Tremors and movement difficulties are typically exclusive to one side of the body.
  • Changes in posture, walk, or facial expressions may be noticed by family and friends.

Stage 2: Moderate

  • Symptoms become more noticeable than in stage 1.
  • Tremors, stiffness, and trembling may affect both sides of the body.
  • Changes in facial expressions can occur (the Parkinson's Mask).
  • Daily tasks may become harder and take longer to complete.

Stage 3: Mid-stage

  • Loss of balance and decreased reflexes are more likely.
  • Movements become slower overall.
  • Falls are more common.
  • Symptoms are like stage 2 but more pronounced.

Stage 4: Advanced

  • The symptoms are severe and debilitating.
  • Walking may require assistance, such as a walker or wheelchair.
  • Rigidity and bradykinesia (slowness of movement) are prominent.
  • Tremors may decrease or disappear for some individuals.

Stage 5: Severe

  • The most advanced stage of Parkinson's disease.
  • Individuals may be unable to walk or stand without assistance.
  • 24-hour care is often required.
  • and may occur.

Caring for Your Loved One

Caring for a loved one with Parkinson's disease can be challenging, but with empathy and understanding, you can provide meaningful support throughout their journey. Here are some practical tips for caregiving:

Learn About Parkinson’s

Parkinson's disease is a condition that affects the brain and the nerves. It can cause problems with movement, balance, speech, and mood. Parkinson's disease gets worse over time, but the speed and the severity of the changes can vary from person to person.

Learning about Parkinson's disease can help you and your loved one cope better with the challenges it brings. You can find reliable information from sources like the Parkinson's Foundation or the National Parkinson Foundation. They offer free educational materials, such as books, videos, and webinars, that explain the symptoms, treatments, and stages of the disease. You can also talk to your loved one's doctor, nurse, or therapist to get answers to your questions and concerns.

Encourage Physical Activity

Physical activity is important for people with Parkinson's disease. It can help them keep their muscles strong, their joints flexible, and their balance stable. It can also improve their mood, energy, and sleep quality.

You can help your loved one stay active by encouraging them to do exercises that are safe and suitable for their abilities. You can ask their healthcare provider for recommendations or join a class or a program that is designed for people with Parkinson's disease. Some examples are dance, boxing, yoga, and tai chi. You can also do simple activities with your loved one, such as walking, gardening, or playing games.

Medication Management

Medication is a key part of the treatment for Parkinson's disease. It can help reduce the symptoms and improve the quality of life for your loved one. However, medication can also have side effects, interactions, and timing issues that need to be monitored and managed carefully.

You can help your loved one take their medication correctly by following these tips:

  • Keep a list of all the medications, doses, and schedules that your loved one takes. Include the name, phone number, and address of their pharmacy and doctor.
  • Use a pill organizer, a reminder app, or an alarm clock to help your loved one remember when to take their medication.
  • Store the medication in a cool, dry, and safe place. Check the expiration dates and dispose of any unused or expired medication properly.
  • Watch for any changes in your loved one's symptoms, mood, or behavior that may indicate that their medication is not working well or causing problems. Report any concerns to their doctor as soon as possible.
  • Do not change, skip, or stop any medication without consulting with their doctor first.

Adapt to the Environment

As Parkinson's disease progresses, your loved one may face difficulties with daily tasks and activities at home. They may have trouble with walking, reaching, gripping, or dressing. They may also be at risk of falling, freezing, or choking.

You can help your loved one live more comfortably and safely at home by making some changes to their environment. Here are some examples:

  • Install grab bars, handrails, and ramps in the bathroom, bedroom, and stairs. Use nonslip mats, rugs, and strips on the floor and in the bathtub or shower. Remove any clutter, cords, or furniture that may cause tripping or blocking.
  • Use adaptive devices and aids, such as a walker, a cane, a wheelchair, a lift chair, or a voice amplifier. You can find these items at medical supply stores or online. You can also ask your loved one's doctor, nurse, or therapist for suggestions or referrals.
  • Adjust the lighting, temperature, and noise level in your loved one's home. Make sure they have enough light to see clearly, especially at night. Keep the rooms warm and cozy, but not too hot or cold. Reduce any loud or distracting sounds, such as the TV, radio, or phone.

Maintain Social Connections

Social isolation and loneliness are common problems for people with Parkinson's disease. They may feel embarrassed, depressed, or anxious about their condition. They may also lose touch with their friends, family, or community.

You can help your loved one stay connected and engaged by encouraging them to socialize and participate in activities that they enjoy. You can:

  • Invite their friends, family, or neighbors to visit, call, or video chat with them regularly. You can also plan outings, celebrations, or trips with them, as long as they are safe and comfortable for your loved one.
  • Join a support group, a club, or a organization that is related to Parkinson's disease or your loved one's interests. You can find these groups online or in your local area. You can also attend events, workshops, or conferences that are organized by these groups.
  • Enroll your loved one in a day program, a , or a senior center that offers social, recreational, and educational opportunities for people with Parkinson's disease or other conditions. You can also hire a companion, a caregiver, or a home health aide to keep your loved one company and assist them with their needs.

Support Emotional Well-Being

Parkinson's disease can affect not only the physical, but also the emotional well-being of your loved one. They may experience mood swings, depression, , anger, or apathy. They may also have cognitive changes, such as memory loss, confusion, or dementia.

You can help your loved one cope with their emotions and thoughts by offering them support and understanding. You can:

  • Listen to their feelings and needs without judging, criticizing, or interrupting. Validate their emotions and show empathy and . Avoid dismissing, minimizing, or denying their concerns.
  • Express your love, appreciation, and gratitude for your loved one. Praise their strengths, achievements, and efforts. Remind them of their positive qualities, values, and goals.
  • Help your loved one find healthy ways to cope with stress, such as meditation, relaxation, music, art, or humor. You can also suggest activities that can boost their mood, such as reading, writing, gardening, or playing with a pet.
  • Seek professional help if your loved one shows signs of severe depression, anxiety, anger, or suicidal thoughts. You can contact their doctor, a counselor, a psychologist, or a psychiatrist for diagnosis and treatment. You can also call a crisis hotline or a suicide prevention line if you or your loved one need immediate assistance.

Nutrition

Nutrition is an essential part of the care for people with Parkinson's disease. A balanced diet can help them maintain their weight, strength, and energy. It can also help them prevent or manage other health problems, such as diabetes, high blood pressure, or constipation.

You can help your loved one eat well by following these tips:

  • Provide them with a variety of foods from all the food groups, such as fruits, vegetables, grains, protein, and dairy. Choose foods that are fresh, natural, and low in fat, salt, and sugar. Avoid foods that are processed, fried, or spicy.
  • Serve them small, frequent, and easy-to-eat meals and snacks. Cut the food into bite-sized pieces or puree it if your loved one has trouble chewing or swallowing. Use soft, moist, or liquid foods, such as soups, smoothies, or puddings. Offer them a drink, such as water, juice, or milk, to help them swallow and stay hydrated.
  • Adjust the timing and the amount of the food according to your loved one's medication schedule. Some medications, such as levodopa, can be affected by the intake of protein or iron. You may need to give your loved one these nutrients at a different time than their medication. You can consult with their doctor, nurse, or pharmacist for more guidance.
  • Consult with a dietitian or a nutritionist if your loved one has special dietary needs or preferences. They can help you plan a customized menu that meets your loved one's nutritional requirements and tastes.

Seek Help When Needed

Caring for a loved one with Parkinson's disease can be rewarding, but also challenging, stressful, and exhausting. You may feel overwhelmed, frustrated, or guilty at times. You may also neglect your own health, happiness, and well-being.

You can help yourself and your loved one by seeking help when you need it. You can:

  • Ask for and accept help from others, such as your friends, family, neighbors, or coworkers. You can delegate some tasks or responsibilities to them, such as running errands, doing chores, or providing respite. You can also join a network or a community of caregivers who can offer you support, advice, and resources.
  • Take care of your own physical, mental, and emotional health. You can eat well, sleep well, exercise regularly, and see your doctor for check-ups. You can also do things that make you happy, such as hobbies, interests, or passions. You can also seek counseling, therapy, or medication if you are struggling with stress, depression, anxiety, or other issues.
  • Consider other options for care when the time is right. You may need to look for other sources of care for your loved one when their condition worsens or your situation changes. You can explore different types of care, such as home health care, assisted living, nursing home, or . You can also talk to your loved one's doctor, nurse, or for recommendations or referrals.

Herbal Supplements in Parkinson’s Disease Management

If you have a loved one diagnosed with Parkinson's disease, you may be exploring complementary approaches to manage their symptoms. One such avenue is the use of herbal supplements like Bacopa monnieri. These supplements, while not a cure, may offer some relief and support in dealing with the challenges Parkinson's presents. Here, we'll explore the potential benefits of Bacopa monnieri and other herbal options.

Bacopa monnieri: An Ayurvedic Herb

1. Background: Bacopa monnieri, also known as Brahmi, is an Ayurvedic herb with a history of traditional use in India.

2. Parkinson's Disease: Research suggests that Bacopa monnieri may benefit people with Parkinson's disease by improving circulation to the brain.

3. Cognitive Enhancement: It's considered a nootropic, which means it may support cognitive function, potentially helping with memory and concentration.

Other Herbal Options

Aside from Bacopa monnieri, several other herbs have been explored for their potential benefits in managing Parkinson's symptoms. These include:

1. Mucuna pruriens (Velvet Bean): This herb is rich in L-DOPA, a precursor to dopamine, and has shown promise in alleviating motor symptoms.

2. Withania somnifera (Ashwagandha): Known for its adaptogenic properties, it may help manage stress and anxiety, which are common in Parkinson's patients.

3. Centella asiatica (Gotu Kola): This herb is believed to support cognitive function and overall brain health.

While herbal supplements like Bacopa monnieri and others may offer some relief for Parkinson's symptoms, it's crucial to consult with a healthcare provider before incorporating them into your loved one's care plan. These supplements are not a replacement for prescribed medications or other conventional treatments. Always ensure that any complementary approaches are discussed with a medical professional to ensure they are safe and appropriate for your loved one's specific situation.

Conclusion

Navigating Parkinson's disease requires a combination of knowledge, empathy, and adaptability. By embracing a holistic caregiving approach and being open to complementary strategies, families can provide meaningful support throughout their loved one's journey. Remember, seeking professional advice, staying informed, and fostering a supportive community are key elements in this challenging yet profoundly important undertaking.

Resources

Parkinson's Disease Foundation

Parkinson's Disease and Caregiving

Parkinson's Disease in Hospice Care: Advanced Parkinson's Disease (Video)

Finding Resources for Parkinson's Disease

10+ Facts About Parkinson's Disease: Plus common misconceptions about what it's like

Experts reveal symptoms of Parkinson's disease

Long-Term Treatment with High-Dose Thiamine in Parkinson Disease: An Open-Label Pilot Study

Important medicinal herbs in Parkinson's disease pharmacotherapy

Highly informative Video: Neurologist Reveals the SHOCKING ROOT CAUSES of Parkinson's & How to PREVENT IT | Dr. Ray Dorsey

Bacopa monnieri in Patients with Parkinson's Disease: A Pilot Study

A Comprehensive Review on Preclinical Evidence-based Neuroprotective Potential of Bacopa monnieri against Parkinson's Disease

The Importance of Caregiver Journaling

Reporting Changes of Condition to Hospice

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

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The Art of Dying

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Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

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