Parkinson's Disease: Understanding, Supporting, and Living Well

Early in my career, I was invited to join a medical group by a physician leader named Bill. He was the kind of leader who always paid full attention to anyone he talked with, yet never shied away from making difficult decisions. Several years before his retirement, Bill was diagnosed with Parkinson's disease.

In the years that followed, I learned a lot about Bill and Parkinson's disease. Bill fell frequently and was hospitalized several times. Once, his wife called me because Bill was unresponsive. I rushed to his home and found him motionless. Suspecting a stroke, we called an ambulance. During the ride to the hospital, however, Bill "woke up" and demanded to go home.

Bill never fully accepted his Parkinson's disease diagnosis. He managed it in his own way, sometimes following doctors' instructions, sometimes not. He insisted on living a full life, which he did for another decade. Despite the many falls and incidents, he never let Parkinson's disease dominate his life.

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April is Parkinson's Awareness Month, an important time to shine a light on a condition that affects millions worldwide. As we help bring awareness to this disease, I want to share some insights about Parkinson's that might help caregivers and their loved ones live better with this challenging condition.

What is Parkinson's Disease?

Parkinson's disease is one of the most common neurological disorders affecting seniors. At its core, Parkinson's involves abnormal protein production in the brain. These proteins, called alpha-synuclein, form clumps known as Lewy Bodies that damage brain cells, particularly in an area called the "substantia nigra."

This damage reduces the brain's ability to produce dopamine, a chemical messenger essential for smooth, coordinated movement. Without enough dopamine, movements become abnormal, leading to the characteristic symptoms of Parkinson's disease.

Recognizing the Signs

There are four significant telltale signs of Parkinson's Disease:

1. Tremor: Involuntary shaking, usually starting in the hands or fingers. It's often more noticeable when the hand is at rest.

2. Slowness of Movement: Actions are delayed. A person might find themselves staring at a doorknob or an elevator button for several seconds before being able to move.

3. Rigidity: The body becomes stiff. This isn't occasional stiffness but a constant state.

4. Postural Instability: Maintaining balance becomes difficult. Once slightly off balance, the body cannot quickly recover.

Beyond these core symptoms, Parkinson's can affect many aspects of daily life. Some people experience constipation, loss of smell, sleep disturbances, mood changes, smaller handwriting, reduced facial expression, or a softer voice.

How Can Caregivers Help?

If you're caring for someone with Parkinson's disease, remember that your support makes an enormous difference. Here are some practical ways you can help:

Use Encouraging Words

Learn to use supportive language consistently:

• "We can do it. One, two, three, go."

• "Take your time; there's no rush."

• "Let's focus on standing tall."

• "Let's walk together."

• "Are you tired? I am, too. Let's take a breather."

Create a Thoughtful Routine

Develop a daily schedule that balances activity and rest. Plan activities for when your loved one feels most energetic—often in the morning, after a nap, or shortly after taking medicines.

Emphasize Regular Nutrition

Weight loss is common in Parkinson's disease. Offer small, frequent meals and snacks rather than three large meals. Make sure foods are easy to chew and swallow and include adequate protein.

Encourage Movement

Staying physically active is more important than taking medicine. Exercising the body is just as crucial as taking medicine. People who remain active have better outcomes in mobility, flexibility, balance, and overall well-being.

Did you know? Boxing has unexpectedly become a popular activity for people with Parkinson's disease. It's excellent for strength, coordination, balance, endurance, and footwork. Programs like Rock Steady Boxing are specifically designed for people with Parkinson's.

Help Prevent Falls

Falls are a common challenge with Parkinson's. You can help by:

• Making sure walking areas are clear of clutter

• Removing throw rugs

• Installing grab bars in the bathroom

• Adding handrails on all stairs

• Ensuring good lighting throughout the home

• Being especially careful around doors and thresholds

Fight Social Isolation

Parkinson's can lead to embarrassing situations and a temptation to "hide" from social interactions. But relationships are as important as food and water. Help your loved one maintain connections by starting with favorite activities and building a schedule that avoids fatigue.

Treatment Options

While there's no cure for Parkinson's yet, treatments can help manage symptoms. Medications like Sinemet (carbidopa/levodopa) deliver dopamine to the brain when it can no longer produce enough on its own.

However, medication is just one piece of the puzzle. Physical therapy, occupational therapy, and speech therapy can all significantly improve quality of life. A comprehensive care team can provide ongoing support as the disease progresses.

Finding Support

Remember that you don't have to face this journey alone. Here are some resources for both patients and caregivers:

• American Parkinson Disease Association (APDA): Offers over 1,400 support groups across the country

• Parkinson's Foundation: Has strong online discussion groups

• The Veterans' Administration's Parkinson's Disease Research, Education, and Clinical Centers: Provides support specifically for veterans

• Exercise Resources: Programs like PWR! (Parkinson Wellness Recovery), LSVT BIG, and Rock Steady Boxing offer specialized exercise programs

Living Well with Parkinson's

I'm reminded of Tommy, who has lived with Parkinson's for 12 years. He maintains his independence through a strong commitment to physical fitness. His daily routine includes three sets of ten sit-to-stand repetitions with carefully timed rest periods.

"I have Parkinson's, but I'm not Parkinson's," Tommy explains. Despite living with the condition for over a decade, he maintains his purpose by volunteering for clinical trials. "I'm working for a cause to eliminate Parkinson's," he says with quiet determination.

Tommy's approach reminds us that there remains space for meaning and dignity even within limitations. The disease doesn't have to define the person.

The GOLD Approach

The caregiver plays a pivotal role in the quality of life of a person living with Parkinson's disease. Understanding the condition is crucial and will help you communicate and connect authentically.

Look for opportunities to connect meaningfully with each other. This isn't easy and takes time and effort. However, it's key to supporting each other and building the resilience to live well despite the illness.

Take special effort to avoid falls and to have a plan when a fall does happen. Lastly, seek out strong support from a healthcare team including occupational and physical therapists. You are not in this alone. There is a global community facing this challenge together.

Warmest Aloha,

Dr. Warren Wong

PS: I say it over and over again: The caregiver is more important than anyone in a frail person's daily life.