Caring for Someone with Parkinson’s Disease

After a diagnosis of Parkinson’s disease, both the individual and caregiver must begin adapting to a new reality and way of life. Some of the biggest challenges for those caring for someone with Parkinson’s disease are preventing falls, maintaining independence, managing freezing episodes, and overseeing Parkinson’s medications.

The first step is to get educated about what Parkinson’s disease is, how it progresses, and what symptoms to expect. This degenerative disease affects the central nervous system and brain, primarily the part of the brain that controls body movement. Parkinson’s damages the brain cells responsible for producing the neurotransmitter dopamine. Dopamine’s role is to carry important messages to other parts of the brain or body. If the dopamine brain cells are destroyed, other brain cells can’t function properly and can potentially die, resulting in a loss of motor capabilities (body movement) and a decline in automatic functions like smiling, blinking, and swinging your arms when you walk.

As Parkinson’s disease progresses, symptoms affecting body movement generally include:

• Tremors – This primary Parkinson’s symptom often begins in the hands, arms, and legs, occurring when the body is at rest and resolving once movement begins.
• Slowed movements (bradykinesia) – This key marker of Parkinson’s can look like dragging feet on the floor or taking an extended time to complete basic tasks.
• Contracture – This growing rigidity of muscles and joints limits range of motion and flexibility, and can even lead to skeletal deformities.
• Balance problems – This occurs due to muscle rigidity, weakness, and slowed movements, increasing the risk of falling dramatically.
• Speech changes – Voice volume begins to decrease, and speech slows or slurs.

Additional non-motor symptoms begin to appear and impact daily life as the disease continues to progress. These include loss of smell, trouble sleeping, excessive sweating, mood/personality changes, urinary urgency, constipation, hallucinations, difficulty writing, and neck pain.

Given that so many symptoms are movement-related, fall risk typically increases significantly, potentially leading to serious injury or even death. Fortunately, there are steps caregivers can take to help with fall prevention, including installing handrails, overhead lighting, and grab bars. Home safety can also be improved by clearing clutter, adding fall mats, and installing medical alert systems.

Caregivers should learn proper techniques for helping someone back to their feet after a fall. The Parkinson’s Foundation put out a handy guide with helpful tips:

1. Before trying to move them, make sure they’re not injured.
2. Give them time to rest and recover before moving them.
3. Try not to panic.
4. When they’re ready, help them scoot to a large piece of furniture that can be used for support.
5. If needed, use a transfer belt or other lifting device to assist you.
6. Encourage them to relax to avoid freezing episodes or stress-induced anxiety.

Besides impaired mobility, Parkinson’s can also threaten a person’s sense of independence. Tasks they used to take for granted, such as eating or brushing teeth, can now seem very difficult. Anything you can do to help them remain as independent as possible will be tremendously helpful for their self-esteem and well-being. Examples would be purchasing assistive devices like shower chairs, reacher grabbers, specially-designed spoons, and dressing aids that can help older adults continue to do more acts of daily living on their own.

Over time, as Parkinson’s worsens, “freezing episodes” may start to occur. The individual will be in the middle of something and suddenly be unable to move. They could be approaching a doorway or walking through a room and find themselves “freezing.” These episodes are confusing for the individual, and potentially dangerous if they lead to a fall. To manage them, ask the person to try a different type of movement to get the body started, such as shifting weight from one leg to the other, raising a hand, or turning their head. Placing a line of tape on the floor at doorways often used can help the brain cue the legs to step over it if they start to freeze. Counting, singing, or listening to music can also help stimulate the brain to keep functioning properly.

Another important aspect of caring for someone with Parkinson’s is medication management. Some medications for the disease have very specific guidelines for where and when they should be taken. Certain pills should be taken at an exact time after eating. A patch might need to be applied to a specific part of the body that changes daily. Using charts, reminders, or organizers to keep track of these important medications can help you better manage the Parkinson’s symptoms.

Equipping yourself with knowledge as a caregiver of someone with Parkinson’s – from understanding symptoms to managing medications, and from fall-proofing your home to navigating freezing episodes – will help you to transform daily challenges into empowerment. You’re doing more than just managing a disease; you’re helping to ensure that a person remains as independent and safe as possible!

If additional help is needed, reach out to these national helplines and/or utilize these resources:

• Parkinson’s Foundation Helpline: Call 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org Monday through Friday, 9 a.m. to 7 p.m. ET for treatment answers, local support group lists, and caregiving guidance.
• American Parkinson Disease Association (APDA): Call 800-223-2732 or visit the American Parkinson Disease Association for educational tools, financial support programs, and grassroots chapters.
• The Michael J. Fox Foundation: Explore online research and connection tools via The Michael J. Fox Foundation for Parkinson’s Research, including the Parkinson’s Buddy.