Community Blog

Caring for Loved Ones with Parkinson’s Disease

By Debbie Humphrey

As with any disease, it is not only the person diagnosed that faces challenges, but also friends and family. Parkinson’s disease is no exception and is prone to causing stress to loved ones. Nearly one million people in the US are living with Parkinson’s disease and the actual cause is currently unknown. Although there is presently no cure, there are treatment options such as medication and surgery to manage its symptoms.

About Parkinson’s Disease

Parkinson’s disease is a chronic and progressive movement disorder, meaning that symptoms continue to worsen over time. It involves the malfunction of vital nerve cells in the brain, called neurons, and primarily affects neurons in deep parts of the brain that control movement. Some of these dying neurons produce dopamine, a chemical that sends messages to the part of the brain that controls movement and coordination. As Parkinson’s Disease progresses, the amount of dopamine produced in the brain decreases, leaving a person unable to control movement normally.

Despite decades of intensive study, the causes of Parkinson’s remain unknown.  Many experts think that the disease is caused by a combination of genetic and environmental factors, which may vary from person to person. While the vast majority of Parkinson’s cases are not directly inherited, 15-25% of people with Parkinson’s report having a relative with the disease. Large research studies have found that people with a first-degree relative, such as a parent or sibling, have 4-9% higher chance of developing Parkinson’s as compared to the general population.

Symptoms of Parkinson’s Disease

Symptoms of Parkinson’s include tremors of the hands, arms, legs, jaw and face. Bradykinesia, defined as the slowness of movement, is also a prominent symptom along with stiffness of the limbs and trunk. Secondary motors symptoms include freezing, stooped posture, speech problems and difficulty swallowing. In addition to motor symptoms, most people with Parkinson’s experience non-motor symptoms, those that do not involve movement, coordination, physical tasks or mobility. These symptoms include loss of sense of smell, difficulty in sleeping, and emotional changes.

Caring for Parkinson’s Disease

When it comes to providing care to persons with Parkinson’s, it is important to keep their best interests and feelings in mind, and realize that every individual is different. One of the keys to care giving is to be educated on Parkinson’s, as it is very complicated. Symptoms will change and often worsen over time and understanding that this will occur can help prepare for the future.

Another key to care giving is understanding that Parkinson’s is unpredictable. Symptoms of severity can vary throughout the day and proper medical management is key to keeping the most predictable response to treatment.

When it comes to managing the disease on a daily basis, there are a few specific steps to take in order to make the environment as safe and easy as possible:

  • Obtain any adaptive equipment or clothing needed, such as specially designed eating utensils or choosing clothing with Velcro rather than buttons.
  • Document any noticeable changes in your loved one. Keep a journal of abrupt changes in your loved ones’ ability to move, include in the journal any other noticeable changes.
  • Modify any areas you need to within the home to promote safety. This can include customizing seating, toilets, tubs, & showers or installing grab bars where appropriate.

An effective way to positively cope with a loved one with Parkinson’s is by building relationships with everyone that is a part of the “team” (family members, doctors, caregivers and friends). This assures that your loved one is getting the best treatment possible and that everyone is on the same page. The goal is to maximize the independence. The physical and mental tolls of the disease make it all the more important that the person feels they have control over as much of their life as possible.

Patience and understanding are the building blocks in assisting someone with Parkinson’s disease. Set realistic, attainable goals, and then strive to attain them and don’t expect to tackle every problem right away. Avoid acting on emotions with unconstructive behaviors. Having an understanding of Parkinson’s and what your loved one is facing will likely help to eliminate frustration and allow you to be more patient with them.

When to Seek Help

Don’t be afraid to talk to someone about what you are feeling. Consider joining a support group so that you can share mutual experiences, learn together, and even receive support in coping with a common problem. When caring for your loved one becomes difficult or overwhelming, remember that in home care givers like Home Helpers can lighten the load and offer support as needed.