As a long-time, in-home nurse, much of my professional life has been spent educating people with Parkinson’s disease and their families about what they can expect from this progressive disease, which affects over one million Americans.A chronic neurodegenerative disorder, Parkinson’s disease is characterized by the loss of dopamine-producing brain cells. What does that mean? Movements slow when dopamine is lost, so people with Parkinson’s take longer to do things than others. In fact, those tell-tale movement symptoms such as tremors, limb stiffness, slow movement and/or impaired balance and coordination are what prompts many families to seek the initial diagnosis. But Parkinson’s disease isn’t a simple diagnosis. The first advice I give to families when I meet them in their home is to seek out a movement disorder specialist. These specialists can best evaluate which treatments might help control movement symptoms.
But as a nurse, my goal also is to help people with Parkinson’s maintain a good quality of life in their home, which means taking medications as prescribed and also instituting practical, small changes in their lifestyle. At the beginning, many people are relieved that Parkinson’s doesn’t automatically mean that they have to retire from work or give up favorite pastimes. In fact, I encourage my patients to stay active as much as possible, adapting their activities as needed. For example, a baker should gather all his ingredients and tools in a few trips and then sit down at the table to mix and prepare, rather than standing at the counter and making multiple trips. Someone who enjoys gardening might switch to containers if kneeling and rising from the ground is uncomfortable or too challenging. When changing clothes, sitting on the bed can prevent a loss of balance and reduce the risk for falling. Adapting activities helps people with Parkinson’s continue to enjoy an active life.
Despite all my years working with people who have Parkinson’s disease, I wasn’t expecting that my own mother’s Parkinson’s disease would progress in a surprising way. Diagnosed in 2007, for a long time she did fairly well using walkers and maintaining her social engagements with friends and family. But to my surprise, about a year later, she started seeing people on her back deck or in her yard who were not actually there. Once she was convinced a stranger was on her roof, so she called the police. She even claimed to see mice in her home, though an exterminator found no evidence of any rodents.
At first, I believed my mom really was seeing what she claimed. After all, it’s possible to have an infestation, and, possibly a stranger crossed through the backyard. But as the visions became more frequent and when she claimed to see things while I was in the room with her that weren’t there, I realized she was hallucinating. Her hallucinations also became more elaborate. For example, every morning she was convinced that a group of people were doing Tai Chi in the backyard. I didn’t even know she knew what Tai Chi was! My mother also experienced delusions, or false beliefs, in that she’d worry excessively about her grandchildren’s safety in her home even when they weren’t even visiting.
The hallucinations and delusions often scared my mom and made her mad because she felt the visions (the people she saw) invaded her privacy. As a result, my teen-aged daughters and I would take turns sleeping at my mother’s home to reassure her and make her feel safe. It was both frustrating and stressful to care for my mom because we couldn’t always convince her that the visions she saw weren’t real. It was particularly hard when my mom began asking for people who had long since passed away, like her parents.
Seeking Help for Hallucinations and Delusions
Since the onset of these symptoms, I’ve learned that hallucinations (often visual) and delusions are the hallmark symptoms of Parkinson’s disease psychosis. Even as a nurse, I wasn’t keeping the possible onset of non-motor symptoms top of mind, even though Parkinson’s disease psychosis is estimated to affect more than half of patients over the course of their disease.
Unfortunately, only 10-20 percent of patients and their families ever report hallucinations and delusions associated with Parkinson’s disease to their doctors, possibly because they are embarrassed or because they do not associate them with a motor disorder like Parkinson’s. But understanding that hallucinations and delusions are common with Parkinson’s disease is important because it is a major reason for nursing home placement among patients.
Speaking for myself, I’m glad that I became aware of the symptoms as its allowed me to help my mother stay comfortable in her own home, with the help of our family and a healthcare aid.
As soon as I realized that my mother was experiencing hallucinations and delusions, I shared that information with her movement disorder specialist. Sometimes timing is everything: As it happened, her symptoms made her a good candidate to join a clinical trial for what is now the first and only FDA approved treatment for the hallucinations and delusions associated with Parkinson’s disease, called NUPLAZID® (pimavanserin). My mom decided to participate in the clinical trial because she wanted to help herself and others living with this aspect of Parkinson’s disease.
About a month or so after enrolling in the trial, I definitely noticed a change in my mom. Her hallucinations declined, and when she did have a rare vision, she had more insight that what she was seeing was not real. Everyone in my family really feels that treatment has made a positive difference in her life.
In my experience, the non-motor symptoms of Parkinson’s disease are as challenging – if not more challenging – for caregivers to manage than the physical symptoms. After all, there are strategies for managing movement and medications to treat the motor symptoms. But non-motor symptoms present more subtly. My mother’s Parkinson’s disease educated me even as it affected me personally. But, it’s also been beneficial in that I can share what I’ve learned with other families and my nursing colleagues.
For those caring for someone with Parkinson’s disease, I encourage you to seek out a movement disorder specialist to help manage the motor and non-motor symptoms of the disease, as well as start a dialogue about potential warning signs for psychosis.