Sometimes independence is a state of mind.
Last month, I supervised a team of residents, interns, and medical students rotating through the neurology ward at our Veterans Administration hospital. As usual, I learned at least as much as I taught. And, as usual, my best teachers were my patients.
One patient I helped take care of was an 83-year-old man with very advanced Parkinson's disease. He was admitted to our hospital because he was falling frequently. His wife, an elderly woman, had metastatic breast cancer and was unable to help him up when he fell. She had to call 911 just to get him off the floor.
About six weeks previously, he had fallen and broken his hip, which is really when his current problems began. Prior to that—despite having difficulties getting around due to the balance problems, trouble walking, and shaking related to his Parkinson's disease—he enjoyed playing shuffle board three days a week with his friends. He was fairly independent and did not have to rely on his wife for almost everything. Our team was struggling with how to help this man accomplish what was most important to him and his wife—getting back home to support her through her upcoming chemotherapy.
One morning on rounds, I finally asked him, “Why do you think you are falling?” He replied, “That is a complicated question. I can think of at least four reasons. First, since my hip fracture, I'm afraid of falling, and that makes me anxious. Second, anxiety makes my Parkinson's symptoms worse; it throws my balance off and makes me freeze up even more. Third, my feet are swollen and I can't feel the floor very well. Fourth, I get light-headed when I first stand up.” A fifth reason that I discovered during the course of our conversation was that this World War II veteran had untreated post-traumatic stress disorder, which had been getting worse as his disability increased and was adding to his anxiety.
I looked at our patient in amazement. He had given me the answer I needed to begin to really help him. The team and I had spent nearly an hour talking about medication changes that might help him. Failing that, we discussed the possibility of presenting an assisted-living option to the patient and his wife. However, we knew they were opposed to this. We were able to talk with them instead about intensive rehabilitation, more home-health support, and treatment for his post-traumatic stress disorder.
What did I learn from this proud and insightful man? I'm grateful that I asked him a “simple” question that morning. Most seemingly simple questions about chronic health conditions are pretty complex. The medicines we physicians prescribe usually make up only a small part of what is responsible for making a person feel better. This man understood something about his disease and paid attention to what was making things worse. His own independent spirit helped us to help him.
We routinely ask patients to keep diaries about symptoms and responses to treatment for conditions like headaches and epilepsy. I learned that this is probably a good idea for just about any chronic medical condition. It can help to accurately track how well a treatment is working. But it might also uncover a factor like anxiety or depression that can make just about any medical condition worse but can also make things a whole lot better if appropriately treated.
Although we couldn't get our patient home for his wife's chemotherapy, he is now getting the help he needs to return home with dignity and independence.
In this issue, see “Proceed with Caution,” page 17, and “Freedom Through Technology,” page 28, for more on maintaining independence while living with a neurological condition. And if you have a story about independence to share, email us at firstname.lastname@example.org.
My very best,
Robin L. Brey, M.D.