The Practical Matter of Carrying Medication for Treating Parkinson’s

BY FRANK CHURCH

Frank Church

Medical school and undergraduate biology educator, biomedical science researcher and part-time golfer. My diagnosis of Parkinson's Disease, combined with my career in science and education, allows me the ultimate "teachable moment". The theme of this blog is my journey with Parkinson's. The overall goal of this blog is to give encouragement, along with information and other resources, to anybody with Parkinson’s.

“Trust yourself. Create the kind of self that you will be happy to live with all your life.” Golda Meir

“Start where you are, use what you have.” Arthur Ashe

Introduction: Within 24 hours of arriving in Kyoto, Japan for the World Parkinson Congress (June 2019), I was asked by several people, “How did I pack and carry my medication with me?” We were advised by the organizing committee to bring at least two weeks supply of our medication. Bringing an extra week of medication makes total sense; especially in case of any unplanned medical or other emergencies. There are many different ways to carry and compartmentalize the various substances we take to manage our Parkinson’s. Here is what works for me. Moreover, hearing back as to how you carry your medication would also be beneficial.

“It takes as much energy to wish as it does to plan.” Eleanor Roosevelt

Part 1. Medication and Complementary & Alternative Medicine (CAM) Products Used to Manage Parkinson’s:  Previously, I have described the CAM products I use to try to slow down the progression of my Parkinson’s. These past blogs posts are listed at the bottom of this current post. Since the primary goal here is to describe ‘how‘ I carry these supplements, ‘not why‘ I use these supplements, I will refrain from an extended re-cap of the compounds. The Table below gives my current “daily take” of medication and CAM products.

“Organizing ahead of time makes the work more enjoyable.” Anne Burrell

Part 2. Moving from the Original Bottle to a Weekly Container for Storing Medication and Supplements:  By using both a traditional and CAM approach to managing Parkinson’s, I needed something that was convenient to use and also that was travel-worthy. I have been using the Extra Large Pill Organizer, which is a 7-day container with 28-compartments (from Amazon.com, https://amzn.to/2J3Wdk5). It easily fits into my backpack or duffel bag when traveling.

The top 3-panel picture shows the various CAM products that I am taking to combat Parkinson’s. The amount taken for each is given in the Table above.

The next 3-panel picture shows the pill-organizer together and how it can be used to hold several different types of substances. Broken down by compartments, the top one contains carbidopa/levodopa (taken throughout the day) and taurine (which is only taken once per day). The second compartment contains ropinerole (taken throughout the day). The third compartment contains NAC and celery seed extract (both taken several times per day). And the fourth compartment (substances taken once per day) contains vitamin B1, vitamin D3, resveratrol, curcumin, vitamin C, ashwagandha, and probiotic.

Additionally, inside the pouch is a week’s supply of the dopamine agonist-patch and photocopies of all my prescriptions for reference and official use if ever needed.

“Organizing is what you do before you do something, so that when you do it, it is not all mixed up.” A. A. Milne

Part 3. Carrying the Daily Amount of Medication: The next 2-panel-picture shows the small pill cases I carry in my pocket. Again, they were obtained from Amazon.com (https://amzn.to/2nBWbGB), coming as a 3-pack of pill cases. What I used for several years were contact lenses containers. Both allow for safely transporting and storing pills needed throughout the day.

“Organizing ahead of time makes the work more enjoyable.” Anne Burrell

Part 4. Managing Bulk Supplements: If you take supplement powders like mannitol, you need small secure containers along with some nifty measuring spoons (Amazon.com, https://amzn.to/2ofcTfD). I also carry photocopies of the 1-kg bag inside the zippered pouch, in case of questions by officials at the airport.

“Out of clutter, find simplicity.” Albert Einstein

Part 5. Extra Medication Storage.  Finally, it is nice to have a 1-2-day extra supply of carbidopa/levodopa and ropinirole. What works well are the pill cases from the Michael J. Fox Foundation for Parkinson’s Research. Keeping one at work or in a backpack to have available for use in reserve or emergency is very convenient.

“It doesn’t matter where you are coming from. All that matters is where you are going.” Brian Tracy

A Final Thought:  If you take just dopaminergic substances for Parkinson’s, managing them is straightforward. Combining dopaminergic and CAM substances complicate the process. I plan to do whatever it takes to (possibly) alter the course of progression of Parkinson’s. Straightforward vs. complicated. Good luck in your journey regardless of your treatment strategy; we stand together united against this disorder named Parkinson’s.

“The reason most people never reach their goals is that they don’t define them, learn about them, or even seriously consider them as believable or achievable. Winners can tell you where they are going, what they plan to do along the way, and who will be sharing the adventure with them.” Denis Waitley

https://journeywithparkinsons.com/2019/09/29/the-practical-matter-of-carrying-medication-for-treating-parkinsons/