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 something wasn’t right in my gut, literally. My visit to the ER was on a Friday night (of course). I spoke with my primary care doc Saturday and called my GI doc on Monday. They had a cancelation for Tuesday, which resulted in a Wednesday colonoscopy. II’m thankful that I listened to my gut and sought medical attention quickly. My diagnosis was ischemic colitis, which can be serious. I started on antibiotics that day and had to switch up my high fiber diet to a low fiber diet right away. If I had waited to call my GI doc, I think I would have been much sicker, much longer.

• Lesson #4 I married an amazing man (I learned this one a long time ago). He is a gift from God. My words can’t express the gratitude and love for this man who takes such good care of his very high maintenance wife. We didn’t expect this when we got married over 40 years ago. If am able, I will gladly care for him when he needs it. My prayer is that I will be able to, and for him to not need it.

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. · ...

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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.

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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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