Preparing for a disaster is even more important with Parkinson’s

September is the most active month for hurricanes in the U.S., so it makes sense that it’s also National Preparedness Month. It’s essential to consider how you’d survive in the face of a natural disaster — be it a hurricane, flood, or wildfire — and to make plans for where to go and how to communicate with friends and loved ones. These types of disasters often strike without much warning and leave little familiar in their wake.

For people with severe, chronic, and rare diseases, disaster can strike any day, in many different forms. Patients and caregivers must be prepared for any unexpected event that can quickly escalate into a crisis. I was reminded of this after reading a powerful column by my colleague Jamie Askari. In it, she shares the physical, financial, and emotional impact of a disastrous fall by her husband, who has Parkinson’s disease.

But even before this reminder, ever since my own Parkinson’s diagnosis, I worried about what might happen to me in a crisis. Several years ago, I came close to finding out.

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A near-disaster opened my eyes

In 2021, I jumped off a boat and wound up in a two-year saga that led to successful total knee replacements on both legs. I’ve shared that part of the story before, but what I didn’t share was how unprepared I was when seeking medical attention far from home.

When I fell that day, I was terrified — not of the water itself, but of what a serious injury could mean for someone with Parkinson’s disease. And even though I’d made a habit of traveling with plenty of spare medication, I hadn’t yet gotten into the habit of bringing along the remote control device that was required to turn off my deep brain stimulation (DBS) system in case I needed an MRI.

My mind started racing with scenarios involving an extended hospital stay away from home and needing to procure all my medicine from new and different doctors.

I remember calling the nurse from my neurologist’s office while in the car on the way to the nearest emergency room, and the first thing he asked was, “Did you remember your remote control device?” Fortunately, the DBS device I have is compatible with regular X-rays, and the ER doctor didn’t request an MRI. I was also lucky that the injury did not require a hospital stay. I had ruined a perfectly lovely vacation, but we had avoided a bigger disaster.

We often cannot predict disasters; we can only prepare and recover. I learned a big lesson from this incident: While anyone can hurt a knee jumping off a boat, any kind of physical, mental, or emotional injury can be much more complex when you have a chronic disease like Parkinson’s.

Those of us with the condition are special. We must take extra caution to prevent potential disasters, and be prepared to respond to them when they happen. Because they will happen. And for those who may be affected by natural disasters, where everyone around you needs help, too, you must be doubly prepared.

Now, I don’t leave home for more than a day without my DBS remote, the two different charging cords it requires, a list of all my medications and their dosages, my surgical history, and contact information for Medtronic, the maker of my device, as well as my doctor’s information. I always take plenty of extra medication, and I wear a medical ID bracelet.

It takes a lot to deal with Parkinson’s under everyday circumstances. So we must be prepared to deal with disasters big and small, wherever they occur. Establish good habits by traveling with what you need, and think through your own emergency plans, especially in the context of natural disasters.

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.