Caring for Parkinson’s Disease Patients

Muhammad Ali, Michael J. Fox, Linda Ronstadt, Johnny Cash, Billy Graham and Estelle Getty are among several famous Americans diagnosed with Parkinson’s disease, the nervous system disorder that disrupts body movement. Nearly 1 million Americans are living with the progressive condition, and each year, more than 50,000 people in the country are diagnosed. The chronic motor disease mainly affects older adults but can occur at any age. Michael J. Fox was diagnosed at 29 and major league baseball player Ben Petrick at age 22.

Parkinson’s disease gradually attacks nerve cells in the brain’s mid-portion, decreasing the production of dopamine, a biochemical that helps carry electrical signals to control body motion and emotional responses. Initial symptoms often present with muscle weakness, stiffness, or a slight shaking in a hand or foot. As Parkinson’s advances, a person may experience muscle rigidity, tremors, postural imbalance, gait changes and decreased facial expression.

The exact cause of Parkinson’s disease is still unknown, but many research studies are focusing on a combination of genetics and environmental factors (such as head trauma and exposure to certain pesticides and medications). Although there is no one standard diagnostic test to diagnose Parkinson’s, a thorough neurological exam and medical history look for classic disease signs. Patients are also tested for their response to a dopamine-producing medication. If a person experiences significant improvement with a drug that boosts the brain’s chemical neurotransmitters, then Parkinson’s is typically the diagnosis versus similar conditions, secondary parkinsonism and Parkinson's plus syndromes.

Complications of Parkinson’s disease may include swallowing difficulties, sleep problems, bowel and bladder issues, depression, and mood changes. Comprehensive management of the movement disorder specifically addresses exercise, nutrition and medications tailored to each individual. Some patients are candidates for therapeutic surgery, including an implant of an electrode stimulator in the brain to improve motor function or a tube in the stomach for a continual supply of the gold-standard Parkinson’s drug, carbidopa/levodopa.

“Presently, there is no cure for Parkinson’s disease, but with early detection and individualized treatment, patients can live full, rewarding lives for decades after their diagnosis,” said Celeste Begley Merrimack Valley resident and Community Relations Director for Right at Home Boston and North. “We have served a number of Parkinson’s clients and their caregiver families who find that a strong support system is essential in bolstering the physical limitations and emotional lulls of the disease. Parkinson’s affects not just the person diagnosed but also their entire circle of family, friends and loved ones.”

In assisting those with the neurological disorder, Celeste Begley advises that family and professional caregivers consider the following care and support approaches:

• Encourage independence. Many Parkinson’s patients can carry out regular daily functions — they just need more time to complete them. Staying active with an in-motion body is key to combating the muscle constraints of Parkinson’s.
• Stay flexible as the disease fluctuates. Throughout each day, Parkinson’s symptoms can vary as medication takes effect and the person regulates diet, activity and rest. Sometimes Parkinson’s is unpredictable, and caregivers help most by choosing to adapt to symptoms as they occur instead of expecting the patient to follow a regimented schedule.
• Determine reasonable limits. It’s best for the Parkinson’s patient and caregivers to discuss activities and lifestyle changes upfront and adjust as needed. For example, lifting heavy objects can throw off balance and cause a fall. Climbing steps or a ladder is not advisable. The key is to keep active without taking on tasks that aggravate symptoms or increase risk for injury.
• Keep an eye on the emotional downside. Discouragement, anxiety, depression and apathy are common with Parkinson’s patients. The off-kilter brain messaging and physical challenges can throw off the body’s ability to stay emotionally level. Mood changes may result from the disease-fighting medications or from the personal loss of a body that does not always cooperate. A caregiver’s patience and active listening are invaluable to Parkinson’s individuals in weathering their emotions. Meeting with a psychotherapist can also help with the ongoing adjustments to the neurological disease.

On Dec. 8, the national office of Right at Home is hosting a free webinar, “Understanding Parkinson’s: Tips for Disease Management,” featuring Becky Dunlop, Associate Director and Instructor of Neurology at a National Parkinson Foundation Center of Excellence. Dunlop has worked with Parkinson’s disease patients for more than 20 years and will explain the differences between idiopathic Parkinson’s disease and parkinsonism; the motor and non-motor symptoms of Parkinson’s; and pharmacological, surgical and allied team treatments of Parkinson’s disease. Designed for health professionals and family caregivers, the webinar will be held at 3 p.m. EST, 2 p.m. CST, 1 p.m. MST and noon PST. To register for the webinar, click here.

For Additional Information on Parkinson’s Disease

Please contact the National Parkinson Foundation at www.parkinson.org or 1-800-4PD-INFO (473-4636), and the Parkinson’s Disease Foundation at www.pdf.org or 1-800-457-6676.

About Right at Home of Boston and North

The Right at Home Boston and North office is locally owned and operated by Rosaleen Doherty and Jay Kenney, both residents of Marblehead. Right at Home Boston and North has been serving the communities of North Shore, Merrimack Valley and Boston for 15 years.

For more information, please contact Right at Home of Boston and North at www.rightathomemass.net, 978-744-5151 or email info@rightathomemass.com. To sign up for Right at Home’s free adult caregiving e-newsletter, Caring Right at Home, visit http://caringnews.com.