How can I best care for my father with Parkinson's disease?

A fellow caregiver asked...

My father is 86 years old and has Parkinson's. We tried some meds (levadopa) last year but he had very bad symptoms including delusions and hallucinations and it basically made him say crazy things and be generally out of it. The experience was so bad and traumatic that I think we thought that the tremors were better than having him not be himself. But a year has passed and tremors are getting worse and so is movement. He is in assisted living and could maybe try new meds but worry that if behavior and side effects of meds are too bad, they may not be able to deal with it. Last time, he was sneaking out in the middle of the night and spent a night outside, would spend hours in a kind of semi-catatonic state. He is far away and still is active in his community where he is so children have decided to have him stay there. Hard to be so far away. I just had a tricky pregnancy and small babies and had not seen him in a year and am very worried about progression of Parkinson's. Thanks in advance for any advice.

Expert Answer

Graham A. Glass, MD, is the co-founder of PEAK Neurology and Sleep Medicine, LLC with multiple locations across Alaska. Previously, he was deputy director of the San Francisco Parkinson's Disease Research, Education, and Clinical Care Center PADRECC and assistant clinical professor of neurology at the University of California, San Francisco (UCSF). Glass received his medical degree from the University of Texas Health Sciences Center at the San Antonio School of Medicine and completed his neurology residency at Tufts-New England Medical Center. He subsequently completed a fellowship in movement disorders at the Mayo Clinic.

This is a very tricky problem and we often encounter this when patients have had PD for many years and/or with our older patients. We often struggle to strike a balance between treating the "motor symptoms" like the tremor and stiffness and causing side effects from the medication. Our usual strategy is to understand what may be causing the hallucinations can delusions as often patients in which sinemet causes this have underlying cognitive decline associated with the PD. This can be done with some basic neurocognitive testing. At that point, we will typically use a medication like donepizil, rivastigmine or galantamine to improve the memory symptoms and this often also reduces hallucinations and confusion. This may "buy us a little more room to use sinemet" starting at a very very low dose for the motor symptoms. In addition, we may use medications such as quetiapine at night time to help with the confusion and hallucinations. As you can see above, this is a somewhat tricky balance to strike and I would encourage you to work with a movement disorders specialist who understands this issues and is fairly accessible to you, as these medication changes are never straight forward. I hope that is somewhat helpful, as this is a very difficult problem.