Skip to main content

Posts

Dealing with a Medical Emergency Part 3: Lessons Learned

  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...
Recent posts

Dealing with a Medical Emergency Part 2: Prepping your Go Bag

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...

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 True Meaning of Community

  Anytime PMD Alliance comes to town, I am happy to jump in and help.  I have been an ambassador for them for over 7 years now. Recently, Parkinson's Orange County (POC) partnered with PMD Alliance for a Community Connection event hosted at Capriana Senior Living in Brea.  The event included a networking reception on Friday evening, followed by a full day workshop on Saturday.  Not wanting to travel back and forth from South OC, my husband, Jeff, and I stayed the night in a local hotel.  The weekend started out great at Friday's reception.  I was back at my hotel and in bed early so I could be back at Capriana in the morning with plenty of time to unload my car and get our vendor table set up.  Since I was staying in Brea, I had assured Erin Angelo, POC's Executive Director, that I could get there before her, so I had all our supplies in my car.   As many of you know, Parkinson's often throws a wrench into the best laid plans, I woke up on Saturda...

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.

Love/Hate Relationship with My New Pump

Closing in on two weeks with my pump and we have already had some wonderful times together. And we have had some really not so great times. I have had a couple of days when that old feeling of "normal" peeked around the corner and made a swift fly by. I have had many days of frustration, symptoms that won't stay under control, injection sites that burn and sting, skin that is swollen and sore. Those moments of near normal are enticing enough to put up with the bad side so far. Near normal is such a very good feeling. I am still early on in the process and have lots to learn. Praying the good times increase and the hard days be tolerable. Near normal...I'm coming after you.   #fueledbyvyalev   #vyalev   #parkinsons