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

Big Dreams Not Happening

If only we could live in a world where everyone put their innate talents and gifts together and worked to solve problems, we might have a world with less illness and suffering. It would also be a world with less multibillion dollar companies. I understand that people need to make a living and I also understand that competition between companies can sometimes spur new thought and development of ideas. I understand the need for regulations and standards for safety. I understand that all of this costs money. But when you are living day in and day out with a degenerating illness that has very few treatments, and no glimpse of a cure, you really don't give a darn about any of that. You just want to get better. You want to be able to trust that you are being given the best advice about the best treatment and you don't have time to wait for it. I will continue to dream about my ideal world but I expect that it will just stay a dream....

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.

Rock Steady Fighter

Search This Blog