Dealing with a Medical Emergency Part 1: I Know Better

It has been almost ten years since my Parkinson’s diagnosis. I have worked hard at staying well. I exercise, watch what I eat, stay connected to friends, and spend time helping others do the same. I have watched hundreds of webinars and talked to dozens of groups. ChatGPT told me that it is generally accepted that when someone studies a subject for 10,000 hours, they are an expert. I have had Parkinson’s over 85,000 hours (ChatGPT did the math too). I guess that makes me an expert…at being a Parkinson’s patient at least.

A couple of weeks ago, I made a rookie mistake. I ended up in the ER in the middle of the night. I woke up with severe abdominal pain. Before leaving for the hospital and as I was lying on the bathroom floor, I was yelling at my husband to grab this medication, and that medication, grab supplies for my Vyalev pump, make sure to get my insurance cards.

After arriving in the ER, I made the nurse wait to put pain meds in my IV until I had my husband look up the list of meds that are contraindicated for Parkinson’s patients. I was not prepared for an emergency medical visit and I know better. I have passed out Aware and Care Kits and Hospital Safety Guides from the Parkinson’s Foundation. I have spoken to support groups about being prepared and having a “Go Bag.” Unfortunately, if you have a chronic illness, Parkinson’s or any other, you must be prepared. I should have filled out the guide. I should have prepared a Go Bag. It would have made life that night so much less stressful. I have learned some lessons and am now better prepared. Stay tuned for my recommendations on what to put in your Go Bag and for the lessons I learned that night.

Comments

Self Advocacy in a World of Red Tape

In a perfect world, a person with an illness or a disability would easily be able to get needed services and treatments. We do not live in a perfect world and often the healthcare system is littered with red tape. Patients or their care partners are tasked with jumping through hoops, waiting countless hours on hold with pharmacies or insurance companies, and waiting months to see specialists. I wish I had the solution to this problem but unfortunately, I only see it getting worse. You need to be an advocate for yourself. Here’s what has helped me: · Be persistent, be firm and be polite. · Call often. A squeaky wheel gets attention. · Stay on hold. It is frustrating but sometimes it is the only way. · If someone doesn’t have the answer you need, ask to speak with someone who does. · ...

Medication Pumps for the Trend Setters

I jest. You have to keep a sense of humor when you are living with a condition like Parkinson's. I am actually very thankful for new treatments even if they aren't pink and pretty.

Getting Pumped!

I finally got my Vyalev pump. Like anything else with Parkinson's, the road has been bumpy. I started in the clinical trial about four years ago. That only lasted a month or so because of the skin bruising, swelling and medication pooling. At the end of last year, the FDA approved the pump and recently Medicare started covering it. I was anxious to try again. So now I am on day 6 and here's the good, the bad and the ugly: I am having much less off time. I am still in the phase of getting my rate adjusted and anticipate that this will improve even more. On occasion, I still use my Inbrija to get me over a rough patch but I'm not using it much and I anticipate I will need to continue to have it on hand in the future because life with PD, well, life in general, is unpredictable. I have had some trouble with the medication pooling and my skin bruising and looking bumpy and swollen. Thankfully, there is an online community of wonderful people sharing tips and tricks for dealin...

Rock Steady Fighter

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