Why it’s crucial to be prepared for trips to the ER

One thing I’ve been pondering lately is how vulnerable we can be when we have a medical crisis and have to go to a hospital emergency room.

Imagine the following scenario: You’re a patient with young-onset Parkinson’s disease (YOPD), a subtype of early-onset Parkinson’s. In the ER, you ask the physician if he or she is trained in neurological disorders. The response is something like, “We don’t have to know about Parkinson’s because we only see a couple patients with it every month.”

Now imagine experiencing the worst pain you’ve ever had and going to the ER to seek help and compassion, but finding only fear and frustration.

These are the types of experiences Heather Kennedy describes in a discussion that was part of the Neuro Life Online series for the Parkinson & Movement Disorder Alliance’s YOPD Connections community. Kennedy, who is an artist, advocate, and superhero in the Parkinson’s world, offers key takeaways in a talk titled “What’s the Emergency? YOPD and Hospitalization,” which I encourage everyone to watch.

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‘Begging to die’

As Kennedy describes her various ER experiences, she says that on one occasion, “I was begging to die.” For those who know her, that might sound uncharacteristic. She usually seems larger than life, even submitting the winning video, “Slim Shaky,” at this year’s World Parkinson Congress in Barcelona, Spain.

As she relates her story, her voice reflects a gamut of emotions from grateful to upset, scared, and confused. Yet she’s determined to make things better for fellow patients.

Her online discussion begins with an emotional thank-you to friends and family who’ve stayed with her from the beginning of her ER ordeals to their end. She also expresses empathy for healthcare workers who are suffering from compassion fatigue, a type of exhaustion caused by caring for distressed patients.

With sadness, she tells the stories of other Parkinson’s patients who medical staff mistakenly believed were experiencing delirium tremens or other symptoms of addiction. Unfortunately, Parkinson’s symptoms such as tremors and speech difficulties are often misinterpreted — by members of the medical community as well as the general public — as signs of alcohol or drug intoxication.

One of Kennedy’s ER experiences left many watching her talk, including me, speechless. According to her account, she arrived in the emergency room at 3 a.m. and was left alone for eight hours, unable to move, unmedicated, incontinent, and in excruciating pain. An attending physician who finally arrived at “9:30ish” told her to stop crying.

She was admitted to the hospital at 1:30 p.m. The only note on her chart from the emergency room charge nurse was “incontinence,” which Kennedy says can be a sign of a serious spinal injury. She says her condition was life-threatening, and thankfully, a physician assistant who recognized her from a past hospitalization ordered another scan, which led to a successful emergency surgery the following day. It saved her life.

Looking back on that harrowing experience, Kennedy says she made a mistake during her ER intake. Communication was poor from the start. Her regular emergency contact, who knows her medical history, was unavailable at the time. That’s why it’s important to have a backup emergency contact — or 20!

By the end of Kennedy’s talk, her demeanor has changed. Previously appearing vulnerable, she’s become confident, determined, and ready for her voice to be heard. One of her closing remarks is a window into the character and the heart of this warrior: “I’m really glad this happened to me,” she says. “I can be of use now.”

As an advocate for change, Kennedy now belongs to patient family advisory councils at hospitals in her area, and she’s successfully pushed for reviews of ER protocols.

In addition to her local efforts, she supports Johnny Acheson, an emergency room doctor and consultant with Parkinson’s disease who works in the area of emergency department training. Kennedy also collaborates with various organizations, including the Gray Strong Foundation, to improve the ER intake process by fostering better communication to facilitate accurate patient information for timely and informed treatment plans.

Important takeaways

According to a 2013 study published in the journal Parkinsonism & Related Disorders, “One-third of people with [Parkinson’s] had a hospital encounter each year, and one-half of those had a repeat encounter.” That why it’s important to keep several things in mind to avoid nightmares like the one Kennedy experienced. These include the following:

• Never go to the emergency room alone. Have someone there who knows your medical history. Your emergency contact on your phone shouldn’t be the only option; have backup contacts available.
• Your ER intake is a crucial moment. Make sure that Parkinson’s disease is at the top of your medical chart and that it’s clear you need your medications on time. The Aware in Care Kit — a tool used by people with Parkinson’s in the hospital — is a great resource, but there’s more you can do, such as having a medical ID on hand.
• Help to educate healthcare professionals. As patients, we need to be part of the caregiving process. We can do this by being prepared. For more information, Stanford Medicine’s Parkinson’s Community Outreach website has a list of helpful resources.
• Ultimately, we’re all on the same team and want the same thing: progress.

Kennedy’s story has motivated me to continue advocating for Parkinson’s patients and for greater awareness about the disease and its consequences. It’s not enough to say things need to change. Be a part of the change. Something cannot be fixed if no one knows it’s broken.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.