Living Well with Parkinsons Disease

Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at Copyright 2013-20 Sheryl Jedlinski

Surviving the emergency room

nurseBy Sheryl Jedlinski

By the time my doctor sent me to the hospital emergency room (ER) for a chest x-ray and an evaluation, I had a persistent fever, a horrible cough, and was wheezing so badly it was audible without a stethoscope. This was after three days on a drug cocktail prescribed at an immediate care facility. The likelihood of being hospitalized was disconcerting, as we have all heard horror stories of people with Parkinson’s (PWP) not getting their meds on time and the cascading medical problems this creates. Knowing my husband would not leave my side was key to keeping my anxiety in check.

What I hadn’t considered is how the electronic medical record (EMR), intended to reduce potentially fatal errors, is only as good as the people inputting and retrieving the information. Though I told the person updating my EMR about having Parkinson’s, the next person who called up my digital chart asked how long I had had Alzheimer’s, a ridiculous question for someone plagued by memory issues. “Is that what my chart says?” I demanded angrily. “I have Parkinson’s, not Alzheimer’s.” My husband vouched for me.

My chest x-ray confirmed I had pneumonia, but my room was still not ready. I begged to go home with oral antibiotics, but the nurse threatened that if I did, I’d be returning by ambulance the next day. I was beginning to believe that staying overnight would kill me sooner.

They wanted to start me on IV antibiotics in the ER, assuring me that they would not interfere with my MS medicines. This was about the time I lost it. “I don’t know where this misinformation is coming from, but I do not have MS,” I told everyone within earshot. “No one comes near me with an IV until I reach my neurologist and she approves the medicine you plan to give me.” Admittedly this plan was totally unorthodox, but it worked. Six hours elapsed from when I entered the ER to when I got up to my room at 10 p.m. I had not eaten since lunch and no one offered me so much as crackers. Fortunately, I had brought my meds with me and kept to my normal dosing schedule without anyone noticing. That would be a battle for another day. (to be continued)

Anyone can find themselves in this situation. Here are some starting points to ensure that you get the proper medical treatment:

  • Request your copy of the National Parkinson Foundation’s (NPF) Aware in Care kit here intended to protect and empower people with Parkinson’s during a hospital visit.
  • If possible, avoid going to the hospital for treatment unless accompanied by a relative or close friend who can be your advocate.
  • Keep a list of your medicines and doctors’ contact information in your wallet, next to your insurance card.

Wishing you good health!

9 comments on “Surviving the emergency room

  1. defeatparkinsons
    March 28, 2015

    Reblogged this on defeatparkinsons and commented:
    Great advice from Sheryl…thanks for sharing

  2. Tem and Larry Williams
    March 28, 2015

    So glad this nightmare is behind you…GREAT advice I’ll be many are unaware of it the ‘Aware and Care’ kit…you know, this could easily be made into a little fundraiser for PD..they should sell them at the TWC…good exposure and really a service….

  3. BowenSpeechBlog
    March 28, 2015

    Excellent blog, Sheryl! I am sorry that you had to go through all you describe, but your willingness to tell your story has the potential to help others in many different ways! Increased awareness of the “Aware and Care Kit” is huge!! Making sure you have an advocate with you when you have to go to the hospital is another great point. Well done, and I hope you have recovered fully from your bout with pneumonia.

    If you don’t mind, I’d like to follow Dr. De Leon’s lead & re-blog this as April’s “Featured Post” on my Bowen Speech Website blog page.

    Cyndee Williams Bowen
    Speech Pathologist

    • mydancingintherain
      March 28, 2015

      Thank you for your kind words. I would be honored to have you reblog this story on your professional blog page. My sole purpose for writing about my journey with PD is to help as many other PWP as I can. Obviously, the more people who reblog my posts, the greater my reach.

  4. Wanda
    March 28, 2015

    I am sorry you were so sick, and hope you are feeling better now. A scary experience all around. So very glad you had Tony by your side and that you were able to tell them what’s what. You wonder if it even gave them pause. As I learned from the many hospital and ER trips with my folks, you have to question everything. I often wonder what happens to people who who are unable to advocate for themselves for whatever reason, and don’t have someone to advocate for them.

    Feel better. Stay well.

    • mydancingintherain
      March 28, 2015

      Always great to hear from you. I think of you often. I’m hoping you and Greg will make it out here for a visit one of these days. We have plenty of room for you.

    • Leslie Davidson
      March 29, 2015

      Wanda, I have the same worry for those without an advocate. We have to pay attention to others in our PD community and make sure they have names and numbers of people who are PD aware,
      for when they need support.

  5. 100wickedwords
    March 29, 2015

    This is invaluable advice! Any time a patient invokes his or her power to take charge of their medical treatment, they’re unbeatable. Putting a funny spin on this is going to encourage others to emulate you. Well done! G.

  6. BowenSpeechBlog
    March 31, 2015

    Reblogged this on Bowen Speech Blog and commented:
    April is Parkinson’s Awareness month, and I will be doing my part by posting on the topic throughout the month. I can’t imagine a better post to launch the month than this one by Sheryl Jedlinski! A trip to the ER is not a simple matter for people with Parkinson’s. Many thanks to Sheryl for writing such an important blog and for graciously allowing me to re-blog it to raise awareness of the problem. -C-

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This entry was posted on March 28, 2015 by in Emergency Room (ER), Hospital, Treatments.

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