Going against the Grain

According to Merriam-Webster, going against the grain is defined as “different from what is normal or usual”.

When attending the World Parkinson Congress in Kyoto, Japan, that is exactly what had perpetually entered my mind as I was witness to all the wonderful research, innovation, inspiration and motivation that permeated the conference.

I was witness to concepts that changed my perceptions, all the while not forgiving when provocative.

Take for example how medical appointments are made and kept. You call your provider’s office and schedule an appointment that may be weeks or even months away. Yet you call for an appointment because symptoms are worrisome now. Often by the time you receive medical attention, your symptoms have since evolved or you have taken matters into your own hands and made medication adjustments. What if you could email your provider when symptoms were at their peak? What if you could recruit your medical team sooner than waiting for a direct office visit? What if you could access other members of the medical community if your neurologist is not available?

I work for Kaiser Permanente (Northern California), a large, multi-facility, closed loop, integrated health care network that has 21 medical centers serving nearly 10,000 patients with Parkinson’s disease. With only nine Movement Disorder Neurologists, how can we possibly meet the needs of this patient population? Scheduling routine appointments as recommended by the American Academy of Neurology does not consider Crisis driven Care. The answer lies in leveraging technology.

One key component of technology is to have an Electronic Medical Record that is accessible by local emergency rooms and primary doctors. This is becoming more and more ubiquitous. Long gone are the days of waiting for paper charts to reach the specialist or ER provider. Having an ER doc review the last Parkinson medication change to determine the next steps is invaluable.

Mobile devices with video technology are so common, so why not use it? Can office visits be shifted to the comforts of the patient’s home? A few years ago, I contributed to an article published in the International Movement Disorders Society journal on The Future of TeleMedicine, predicting that within 5-10 years, we will see more than 50% of all Parkinson Care happen using TeleHealth and virtual visits. One may argue, can you properly examine a patient via video, and my response is yes. Aside from rigidity, most Parkinson motor symptoms such as tremor and gait imbalance can be evaluated virtually. I am not suggesting virtual visits replace direct office visits or personal contact with a provider, rather I am suggesting it as an option when office visits are not possible.

Lastly are there technological tools like wearables that may help to steer care? We have been using wearable technology to better understand how patients respond to medication over time. Given our data driven world, it would be better to have information on how a patient’s mobility responds relative to medication over one week or longer rather than rely on one point in time (office visit).

Lets go against the grain and think outside the box to deliver better and more precise care. I hope this allows you to be provocative in you driving your own care.


Suketu M. Khandhar, MD is a neurologist and movement disorder specialist at Kaiser Permanente in Northern California. He was a faculty member at the 5th WPC in Kyoto Japan as well as the 4th World Parkinson Congress in Portland, Oregon.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®