Rock Steady Fighter

  Lessons learned from my recent ER visit:   • Lesson #1 Remember that the medical staff likely knows little about Parkinson's. Try to have patience when they tell you to "STOP MOVING!" to put in an IV. I promise you, if I could have stopped moving, I would have. A lesson for the staff: Stress makes Parkinson’s symptoms worse. Even in high pressure medical emergencies, patience and compassion go a long way and result in less bruising. • Lessson #2 Be your own advocate. Don’t hesitate to ask questions, remind people you have Parkinson’s, or ask for things to be repeated. Patience is required on both sides in these situations, but is often in short supply, when you or a loved one are hurting. Remember, you and the staff have a common goal: to get you treated and out of there as fast as possible. • Lesson #3 Be proactive and trust your instincts. In my situation, I was told me to “follow up with my gastroenterologist.” Urgency was not stressed. I knew so...

After my recent emergency medical visit, I realized the importance of having a “Go Bag.” This is a bag filled with the things necessary for a hospital visit whether planned or an emergency.     My recommendations for a Go Bag are below.   ·        Fill out the pages in your  Hospital Safety Guide   ( today…don’t wait for an emergency ) and highlight sections that are important to you. You can download the guide for free from the Parkinson’s Foundation or order one at no charge ( https://www.parkinson.org/resources-support/hospital-safety-guide ) ·          Make sure your medication list is current .  My medication list is long and changes regularly, so instead of writing it in the guide each time, I keep a list of meds on my computer. I print it each time there is an update and staple a copy into my safety guide and give my husband a copy just in case. I also write the date on the li...

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 ...