At a recent visit with my elderly patient with Parkinson’s disease, he began to describe some visual disturbances. He was seeing “waves of red” which happened randomly and seemed like blood.

A few recent visits to the ophthalmologist failed to show any eye problem, but he remained worried that something wasn’t right.

Other than poor visual acuity and a resting hand tremor from his Parkinson’s, my patient’s examination was normal. He was well oriented, and had no other neurologic findings.

His greatest worry was that he might have a brain tumor, and requested a CAT scan to further investigate. I agreed that a CAT scan was reasonable, and said I would place the order, and review the recent reports from the ophthalmologist before our follow up visit in two weeks.

In non-pandemic times, my patient would ordinarily have his daughter with him as she is his caregiver, but we had to limit this routine due to social distancing constraints in our small exam rooms. We are able to make exceptions for unique circumstances, and often have family members call in on their phones so they can participate, as an alternative.

On this particular day, his daughter was unable to join us. But I recalled how helpful her input had been in the past, so I decided to give her a call later in the afternoon. Her insight proved invaluable.

Solution

When I spoke with my patient’s daughter, I explained my uncertainty about the underlying cause of his visual complaints, and asked about her impression when he mentions them at home. Her description was similar to his, but she added some observations that really brought things into focus.

Along with the mentioned visual disturbances, my patient was seeing images of children running in the house when none were actually there. This occasionally led to tense discussions between father and daughter about what was real and what he was imagining.

Hallucinations and delusions are common in patients with Parkinson’s disease. They are referred to as “non-motor” symptoms, as the most pronounced problems in this disease are limb tremors, muscle rigidity, loss of balance, and slowing of movement. In fact, more than half of Parkinson’s patients will develop psychosis at some point during the course of their disease. My patient’s “waves of red” were most likely visual hallucinations, the most common type in Parkinson’s. When they cause distress, hallucinations can be effectively treated with specific antipsychotic medications.

After the CAT scan and lab work results came back normal, my patient responded well to antipsychotic medication that has greatly reduced stress in his household.

This diagnosis would have been much more difficult to arrive at without input from his caregiver. She offered invaluable clues, underscoring the importance of the caregiver both at home, and at medical visits.

If you are a caregiver for a patient with any illness, don’t underestimate your value as a member of the care team. The medical provider should welcome and encourage your thoughts and ideas. If you feel it is not easy to offer comments during your loved one’s appointment, consider contacting the medical provider before or after the visit. Written notes, phone messages, or using the patient portal are all great options. In the words of every clinician’s hero Sherlock Holmes, “There is nothing like first-hand evidence.”

Jeffrey Millstein is a primary care physician and medical director for patient experience-regional practices at Penn Medicine.