CHARLOTTE, NC: I have come to the conclusion that there comes a point during the ordeal of dealing with the ALS monster that I finally must yield any remnants of independence and accept the fact that someone is going to live the rest of days for me. I can only that hope we’re compatible.
Like it or not, ALS patients are planners. They must be in order to survive.
For more than a year we have been planning to return to Italy when suddenly the coronavirus entered the picture at the last minute. Being on the cusp of the controversy made it extremely difficult to decide whether to travel as planned, to cancel or to reschedule.
The fear was not so much the possibility of contracting COVID-19 as it was potential closings, transportation delays or a possible quarantine.
As the disabled member of our intrepid band of globetrotters, I was also the most likely candidate to cause a disruption.
Coronavirus is a cowardly bully that takes its heaviest toll on seniors with respiratory problems.
One poorly timed cough by me while going through customs could potentially wreak havoc on the group in the form of quarantine could ruin everything, so we opted to postpone and reschedule.
In the end, every hotel and restaurant willingly assisted us with complete understanding. American Airlines even waived its usual change fees due to extenuating circumstances. Everyone was great. Everyone that is, except for one. But then, there is always one.
The transportation company in Rome, Rome and Italy Group, which had been extremely helpful and flexible up until now tacked on a 30% change fee plus additional charges for new entry fees to museums. They also levied re-issuing charges on the train tickets along with a three percent credit card surcharge.
That brought the cost for changes due to COVID-19 to a whopping 35% penalty or more than $6,500. Which is at best, expansive. At worst, price gouging. While some of their passed on fees are reasonable, charging for the office staff time to re-issue train tickets is not. Not to mention the credit card surcharge. Accepting credit cards, and their fees is the cost of doing business. It is highly doubtful that the museums will not reissue tickets for a future date, making that another price gouge.
While I understand the reasoning for some fees, the costs were, in my opinion given the circumstances, exorbitant and tantamount to gouging. Particularly as this group claims to specialize in disability travel arrangments.
When the smoke clears, I will actually pay for four and a half people rather than three, one and a half of which will travel in limbo.
I can only hope our guest ghosts enjoy their mythical trip and that our transportation vendor comes down with a severe gelato induced brain freeze at Piazza Navona.
Dagmar Munn’s 4-Ms to ALS
With those thoughts bouncing around the empty freight car that once housed my brain, I am currently in the process of moving on to the next adaptation for my personal my ALS strategy as espoused by Dagmar Munn. Munn was diagnosed with ALS in 2010 and shares her thoughts and wellness ideas at ALS News Today.
“I have followed a simple formula for daily living based on the wellness principles I once taught to others,” writes Munn.
“I keep my thoughts in the here and now, exercise daily, and practice optimism. Imagine my delight when I discovered several studies validating the components of my plan.”
Munn calls her plan the “4 Ms.” Medication, mindfulness, motion, and mood.
Here’s how it works:
- Medication: Follow your doctor’s advice and take all prescribed medications. These will help delay and manage your ALS symptoms.
- Mindfulness: Practicing active mindfulness decreases anxiety, depression, and disease progression. It has also predicted a higher quality of life for patients who practice mindfulness. Practicing mindfulness can help victims feel they have some semblance of control, increased awareness and confidence that they are moving safely
- Motion: Moderate exercise can be beneficial for ALS patients. Recent studies have shown exercise, even in small amounts by ALS patients, has reduced molecular changes. Another study demonstrates that motion improves lifespan and eases ALS symptoms.
- Mood: Higher levels of emotional well-being with a slower progression of ALS is an obvious result in battling the disease. Facing life’s curveballs can easily bring down a person’s mood. When difficulties arise that create problems coping with change, ask yourself what has changed and what you need to do to find someone who can help.
In reality, Dagmar Munn left out two other important Ms
Be sure to eat some M&Ms on a regular basis.
All they really do is taste good but they also add two more “Ms” to your list and certainly, six has to be better than four, right?
Besides, as everyone knows, “a spoonful of sugar helps the medicine go down, in a most delightful way.”
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor is an award-winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is the founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up