I am an unusual, and somewhat entertaining, dinner companion. For example, about a month ago I was at a conference and met with a group afterward for dinner. The waitress took orders, and when coming to me I said “May I have a glass of lukewarm water, please?” Now, I’ve ordered this, and only this, in every restaurant since December; I never get tired of the look of utter confusion that comes to my servers face; they typically shrug, mutter “okay…” and walk away. But this particular incident was different. This waitress said, “Why?” I was surprised but happy to reply “I have a feeding tube going to my intestines, I don’t take anything by mouth, and I’ll put the water I order in my tube”. This answer wasn’t good enough for her. She came beside me and said “Explain, please!” Thus followed an enjoyable conversation about PD and feeding tubes, I enjoyed educating her, but I also enjoyed sharing a bit about my unique story.
I then realized I have not shared my “not so secret ‘secret’ with almost all of you.
So in PART 1 of this blog I will do a bit of educating, and explaining. In PART 2 I get to share some important things that I learned from my experience; things that have changed my life.
DISCLAIMER: I AM NOT A DOCTOR…HONEST!
When it comes to my Parkinson disease, I’m an oddity, anomaly, special, strange, unique, and, my favorite, ‘beautifully misunderstood’. Our bodies have a vagus nerve which regulates our digestion. All people with Parkinson’s have some degree of damage to this nerve, causing varying challenges with digestion. Extreme damage is called gastroparesis, a condition in which the spontaneous movement of muscles in your stomach don’t function normally or, more rarely, NOT AT ALL. There are medications and therapies that help in most cases. The cause is often unknown, but a known cause is Parkinson disease.
My ‘beautifully misunderstood’ body chose ‘NOT AT ALL’. Over a period of time, the muscles in my stomach began to slowly stop working. I had no appetite; gradually felt sick every time I ate. My PD medication started working erratically with spontaneous ON/OFF periods. The time intervals between medication doses increased and I assumed that to be the reason for the increased nausea. I ignored my weight loss; my focus was keeping down medication, and so I relied on injections to combat nausea. Eating food was a luxury. My energy was such that sometimes after taking kids to school I would lie down on the floor because the thought of climbing the stairs was too hard. I was slowly starving to death without realizing it. This ‘small girl’ became ‘tiny girl’
One evening I felt something odd in my heart. It had a strange rhythm. NOW Meg becomes concerned (rolling of eyes). So an awesome friend agreed to spend the evening having a party in the emergency department with me!
This was the beginning of my journey. One of fear, laughter, disbelief, tears, joy, blessings, love, pain, sorrow, and miracles.
While at the hospital for many weeks, I wrote a report for my friends and family as often as I could.
“This is Meg reporting from the UofA hospital, 5th floor, room 6”
I share the physical happenings but more so share what I was learning and how it was changing me as a person.
Part 2 is a collection of a VERY small portion of what I learned about life I invite you to join me on my walk down memory lane in, ‘Wherever we go we Plant Seeds ~ the small girl becomes totally tubular…and a better person.