Still true today

💜 I copied the following out of the villages Parkinson support Group Newsletter.

MLK DAY January 16th, 2023    
We often look to the “Parkinson Experts” for inspiration.  But perhaps we can find inspiration in the words of the late Martin Luther King, Jr which interestingly enough can apply to our Parkinson’s journey! 

“Flexibility, persistence, and re-evaluatiing the name of the game.  If you can’t do one thing (perhaps something you have ALWAYS done) then find something you CAN DO – and find a way “to keep moving forward !”

Knock on Wood

Written: Feb 2020 Posted:3/17

I experience two totally unrelated conditions which cause me consternation.

* One is a Parkinsonism: I gasp. That is to say I suddenly (without any warning) intake a large gasp of air very quickly filling my lungs…and then sigh it out. Typically it goes unnoticed or John asks me, ‘Are you okay?’ But once in a while it happens while I have liquid to my lips or near, as happened when I was rinsing my hair and accidentally sucked in shampoo. Most recently I gasp/choked on apple cider vinegar, lemon juice and water…after which I coughed for probably the next five hours.

* The second has no link to Parkinson’s as a cause: I think they are esophageal spasms. My father and my twin sister both needed to be cautious with the size of bites they took and frequently had to wait for the muscles controlling the esophagus to relax so the blockage could pass. They each had their throats stretched by medical professionals multiple times. They reported the procedure was very helpful, but the benefits wore off over time. I have a referral for a Gastroenterology specialist on March 25th to discuss these and other issues. (If the virus hasn’t closed them down… before my appoint.)

The doctor was wrong when he predicted to my father, “You’ll most likely die with a piece of meat in your throat.” My Father died at age 94 from a condition totally unrelated to his choking problems. I eat slowly enough that my food rarely causes a problem. When I have gotten in trouble, it has been as I attempt to swallow my prescribed medications and supplements. I have made adaptions to my protocol… I put a single capsule in applesauce, or yogurt or in a spoonful of a Metamucil fiber preparation. Then after a capsule has slid down, I take a drink of water. But as I relate what happened a past Tuesday, I question what other precaution might I take? Perhaps sleep with my head slightly elevated?

Tuesday morning: I had swallowed my very first capsule bathed in a teaspoon full of yummy… and as I picked up the glass for a drink to flush it, I noticed a tightening of my esophagus… probably 3 inches lower than the collar bone… so I hastily took my sip of water, but I was too late, and the water remained above the spasm. It nearly did me in! Besides the pain caused by the spasm, I had to sit really tall, trying to keep the fluid from back flowing into my wind pipe. As the body tries to clear the blockage, little spurts of air bubble up, raising the level of liquid, causing me to feel panic.

As the body strives to clear the blockage, and reflexes attempting to purge the digestive track push: involuntarily pushing in both directions. I’ve heard; a person in the throes of death frequently soil their clothing. Been there, done that. I don’t need that one on my bucket list.

I was shocked by the comment elicited from the very first person (outside of our immediate family) that I confided the doctor had given me the diagnosis of PD: She said, “My father had Parkinson’s… and he died from choking while my mother was feeding him!” Shortly after her comment, a search on the internet revealed the number one contributor to mortality for PwP is aspiration pneumonia: a lung infection that develops after you aspirate (inhale) food, liquid, or vomit into your lungs. You can also aspirate food or liquid from your stomach that backs up into your esophagus.

In many cultures, it’s a common superstition for people to knock their knuckles. It is a tradition of literally touching, tapping, or knocking on wood, or merely stating that one is doing or intending to do so, in order to avoid “tempting fate” after making a favorable or unfavorable prediction or boast.

Rather than knocking, I chose to be proactive. I took my physician’s advice and got a pneumococcal vaccination that reportedly can help protect against infection by 23 types of pneumococcal bacteria, which are common and often cause serious illnesses.

Addendum… March 11 ………… “Worry is like a rocking chair___goes nowhere.”

Two more esophageal spasms this month… have left my chest (and airway sore) and me feeling slightly panicked.

The first one happened in the night during an attack of dystonia in my feet and calves which had wakened me from, a deep sleep. Dystonia, for me, is severe cramping which twists my toes and runs up my legs. Anyway, while I was awake, i also experienced the distress of an esophageal spasm. Although very painful, no fluid was involved.

The next morning, I had finished my breakfast and didn’t have anything in my mouth when another spasm began. As the spasm continued, I was having trouble with moisture blocking my airway. I figured out that to solve the distress, I needed to spit out the saliva as it accumulated, in order to keep breathing.

I have been looking at AND DOING …breathing techniques and exercises to improve lung capacity. I recommend everyone do the same, during the threat of perilous times.