Battling ALS: A gathering of non-partisan minds with one goal –

Prominent politicians and people gather, host, an ALS awareness event. Republicans mingled with Democrats and vice-versa, we were all were united by a single cause. Eradicating ALS.

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CHARLOTTE, NC, April 2, 2017 – The planets aligned this week and taught me another great lesson in the world of philanthropy, giving and just plain old human kindness.

If you listen to enough political mumbo-jumbo from the media when election time rolls around, one mantra we always hear is that the rich don’t pay their fair share. I saw the other side of that spectrum this week, and I was awed.

Years ago, when I first began traveling, I was fascinated by the masses of people gathered at New York’s Kennedy Airport who, on any given night, were there by the thousands coming from and going to the distant corners of our planet; London, Paris, Rome, Barcelona, Dubai, Singapore, Hong Kong and everywhere in between.


Battling ALS with help from a double-haloed angel



What was so amazing was that this was just one airport in one city. Other major international hubs were in the process of doing the same thing at the same time every single day and night of the year.

It was staggering to consider.

On Monday of last week, a group of about 60 to 80 dedicated people gathered at the home of a prominent Charlottean who was generously hosting an awareness session about ALS, what progress is being made and how we are striving to eliminate it.

Much like Kennedy Airport, people from all walks of life gathered to listen and to learn. It was truly a cross-section of America, but what was even more stunning, in this age of everything be politicals, is that it was so non-political.

A former North Carolina Republican governor, whose brother died of ALS, made some brief remarks and told the story of how his brother, his brother’s wife and he figured a way to start an ALS foundation in the city.

Jokingly he mentioned that they decided the first people they would call would be a well-known local philanthropist and his wife; a Democrat and previous member of a presidential White House staff. All five had been affected in one way or another by ALS.

All five had been affected in one way or another by ALS.

Surprisingly quickly, many of Charlotte’s most prosperous citizens banded together to establish a living, breathing foundation designed to fight the battle against ALS until it is no more.

As I gazed around the room filled with doctors, researchers, businessmen, victims of ALS and people from every level of American society, it occurred to me that this room was not unlike many other rooms throughout the country where people were gathering for one reason or another in an effort to make our country and our world better.


Battling ALS and the VA: Where Semper Fi loses all meaning


And, much like the airport lounge at Kennedy, they are perpetual gatherings each and every night that go largely unnoticed because these people do it not for publicity or recognition but to sharing their good fortune and their dedication to mankind with others.

The charities will vary, of course. So too will the participants and the contributors, although many people support and underwrite multiple foundations.

But the very people that had the resources to create such a gathering, to make it work, to do it with little recognition out of the goodness of their hearts and souls, are frequently the very same people who are chastised for not doing enough.

Such people are to be applauded and thanked for their dedication to good works and for reaching out to others simply because “it is the right thing to do.”

I also learned some other aspects of ALS as my treatments continue and grow. For reasons too difficult to detail in a brief column, there is a lot of redundancy when seeking the best possible care from private researchers and from the Veteran’s Administration. While I have almost completed the healthcare part of the VA process, I am still required to undergo the same battery of tests I have already done twice with my private care.

For reasons too difficult to detail in a brief column, there is a lot of redundancy when seeking the best possible care from private researchers and from the Veteran’s Administration. While I have almost completed the healthcare part of the VA process, I am still required to undergo the same battery of tests I have already done twice with my private care.


Battling ALS and the VA: Where Semper Fi loses all meaning


Monday was another long day which ended in additional blood samples that turned out to be more like drilling for oil. The nurse really tried to find a vein that would yield enough blood for her required tests, but it took numerous sticks in one arm and several more in the other before there was any significant accumulation.

My mind kept racing with the idea that I am now slowly becoming a turnip because, as the old adage goes, “you can’t get blood out of a turnip.”

Wednesday was follow-up day with my private care team which was another five-hour session of tapping my feet, breathing into tubes until I nearly passed out and squeezing, pulling and tugging every muscle in my body. The doctor did inform me at the end of the session that I was stronger in 17 places than when he initially ran the tests.

The doctor did inform me at the end of the session that I was stronger in 17 places than when he initially ran the tests.

That made me happy until I saw the “needle girls” appear at the door seeking more blood. Sadly I would not be allowed to leave until the “swamp was drained” again, but, as with Monday, my veins are officially on strike.

We tried the left arm since the right was still healing from Monday’s bruises. When that didn’t work, we switched over to the right. That didn’t provide anything either, but there is now a lovely tie-dyed bruise pattern in the middle of my right arm.

The search continued to my right hand where there seemed to be some possibilities until the primary nurse decide dthe veins in my hand could be “bouncy.”

You do not want “bouncy veins” when giving blood.

Fortunately, they were able to “un-bounce” my veins enough to get a proper sample.

Another discovery, which will now be with me for the rest of my life, is that there are no “good hair days” with ALS. Reaching the back of your head with a comb is a horror show.

If you are fortunate enough to create some semblance of a part, there is still no way to get to the back of your head to eliminate cow-licks or wild hair spurs. The best option is to be fitted for an NFL helmet.

Many heartfelt thanks to everyone who participated in the ALS awareness program and to my wonderful nurses who proved that all their work really was not in “vein.”

Contact Bob at Google+

Bob Taylor has been traveling the world for more than 30 years as a writer and award winning television producer focusing on international events, people and cultures around the globe.

Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)

Read more of What in the World and Bob Taylor at Communities Digital News

Read more of Bob’s journeys with ALS and his journeys around the world

Editors Note:  Support Bob’s GoFundMe to give him a hand up

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