Preparing for emergencies with a husband who has Parkinson’s
How we're trying to plan for the unknown, whatever it brings
I’m the ultimate planner — just ask my family. Knowing the next life steps for my husband, my children, and myself offers me a sense of peace and calm. Because of that, I’m constantly planning and trying to organize our lives.
Planning is especially important when a family member is living with a chronic illness. My husband, Arman, has Parkinson’s disease, so I try to prepare for anything that could come our way in the short and long term.
I’ve been thinking a lot about this topic recently, with respect to the natural disasters that have struck the U.S. Southeast. Although I live in the northern part of the country, I’ve wondered how people with conditions such as Parkinson’s are surviving the effects of these storms. How are they managing their illness? Can they access their medications? Do they need electricity to run or charge medical devices? My mind is spinning with questions and concerns.
Modern communication and accurate weather predictions help us all make plans. Living in a colder climate, I typically know when a winter storm is approaching and stock up on essential supplies. But what about planning for things that we can’t predict? Is there a way to prepare for the unknown and unexpected?
Planning for the unknown
For Arman, who was diagnosed with early-onset Parkinson’s disease 15 years ago, oral medication is necessary in addition to his deep brain stimulator (DBS) for symptom control (or lack thereof on some days). I asked Arman what would happen if he were unable to access medication or charge his DBS.
He explained that although he charges his DBS daily, the battery should (hopefully) last about a week without a charge, which relieved me. For oral medication, though, he’s unsure what type of withdrawal symptoms he might experience without the drugs his body depends on to survive, as well as the likelihood of him becoming frozen or rigid.
Arman and I decided that we needed a simple plan for emergency situations. After some research, we realized such a plan is much less complicated than we’d imagined. Following are some ways we’ve prepared ourselves for the unknown:
Medication: We already have all of Arman’s Parkinson’s medications organized and sorted in a large bin, and we have several weeks of medication just in case. It’s also a good idea to make a list of all current medications, dosages, and frequency. That’s on my to-do list.
DBS device: I placed the DBS programmer on a shelf near Arman’s medicine for easy access. He uses the charger daily in our den, so we must remember to grab this essential item in an emergency. We also must remember the cord that charges the charger!
Medical ID: After Arman was diagnosed with Parkinson’s, we purchased a medical ID bracelet. After his DBS surgery, we added the necessary information regarding that device. A medical ID bracelet or necklace is an excellent tool for anyone with a chronic illness, especially in an emergency of any kind. In addition, a helpful printable card from the Parkinson’s Foundation is available.
Emergency notifications: I signed up with CodeRED, which alerts me to emergencies in my area. Another option is Smart911, which looks like a great tool, but it’s not available in my area.
Create a list: Besides medications, I’m planning to make a list of family contacts, physicians, medical conditions, allergies, DBS specifics, and health insurance information. I’ll likely add more as I go.
I feel good knowing that we have a plan in place. Life is unpredictable, so we must prepare as much as possible for the unknown.
I hope this summary is helpful. Please leave a comment if you have any additional suggestions or ideas.
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.
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