Battling ALS with frustration, disappointment and more tests

My exposure to agent orange while I was in the Marines would have guaranteed extra disability payments from the VA. The problem? No exposure to Agent Orange.

Image of recently opened VA Healthcare Center in Charlotte, N.C., via screen shot of Charlotte Observer video clip.

CHARLOTTE, N.C., April 9, 2017 — For the first time since being diagnosed with ALS in August, I am discouraged. Once ALS is discovered, there are endless visits to the doctor. When applying for veteran’s benefits, that number doubles.

But it isn’t the doctors, the tests or daily adjustments to things that used to be routine. Rather it is redundancy and the continuous groping for answers to questions you don’t know to ask.

My experiences with the Veteran’s Administration (VA) have been mostly positive, but sometimes they have also been frustrating.

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

There are two processes a patient must go through to qualify for VA benefits. One is for health care and the other is for disability compensation. Thanks to a situation involving contaminated water at Camp LeJeune during the time I was there, the health benefits visits, though numerous, went smoothly.

Not so with disability. On two separate occasions, I met with a counselor who submitted all the paperwork necessary to apply for the supplement. The counselor was extremely helpful and compassionate, leaving me with a strong sense that there would some amount of compensation forthcoming for my ALS.

I had two similar meetings with private facilities covering the same material, which meant that there was a total of four sessions ranging from an hour to an hour and a half.

Following the second meeting with the VA, I received a call informing me that I needed to have yet another consultation with a VA approved doctor in order to apply for disability.

When the doctor greeted us, she closed the door and almost before she said anything else, assured us there was absolutely no doubt we qualified for disability funds. The only thing in question was the amount of compensation, which she said would be determined as a result of the present meeting. Her confidence had to do with exposure to agent orange.

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

And that’s when the car went over the cliff. I told the doctor I had never, to my knowledge, been exposed to agent orange during my tour of duty with the Marines.

Immediately the doctor’s tone changed. Both my wife and I knew then that the outcome of this session was not going to be in our favor.

The remainder of the hour was cordial and went smoothly but as we departed the medical facility, neither of us felt good about our prospects of obtaining more funds to help pay our bills.

On Friday, the afternoon mail brought the answer we expected. I had been denied disability benefits. The reason was that ALS is not on the approved list of diseases for which compensation can be granted.

Nothing about the letter was surprising. But there was one observation that stuck in my craw after following through with all the required paperwork and interviews. If the request was going to be denied because ALS is not on the list—unless it can be related to agent orange—then why bother going through the entire interview, paperwork and medical process?

All I received was a form letter and a handwritten post-it note attached at the bottom that basically said, “You don’t qualify.”

The wind was completely taken from my sails. To this point, facing the inevitable was something I had come to grips with. Now, there is the added burden of finding ways to cover day-to-day expenses while fighting desperately for some miracle that will prolong the remaining days of my life.

Battling ALS and reuniting with APBPA, a true “band of brothers”

Of all the daily rituals that have become difficult, eating is the most troubling. Food just does not want to stay on the utensil of choice. Rather, like fleas on a dog, food prefers to jump onto my shirt and shroud me in layers of sauce, soup, pasta and crumbs.

There is also the problem of coughing, which typically occurs at least once and sometimes twice during a meal. If I am able to grab a napkin before the spasm hits, that’s a plus, but usually it goes the other way. Spitting food on your dining companions is not only humiliating, but also ugly to watch.

A new twist is the tendency to fall asleep while watching TV or in the middle of a conversation. I have discovered that I really don’t sleep but just, more or less, zone out. I know this because there have been times at breakfast where I am aware of my comrades having a conversation, and suddenly I am in the Twilight Zone.

But then the phenomenon gets strange. I can hear them talking but I also find myself dreaming at the same time. Before I know it, and before I open my eyes, I suddenly start talking in my sleep, referring to the dream but responding to whatever is being said at the table. By the time I open my eyes and realize where I am, I find that I am contributing nothing to the dialogue.

The answer is to sheepishly go back to sleep and come out of my stupor a few minutes later.

I can hardly wait to see what other joys ALS brings in coming weeks.

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.He is founder of The Magellan Travel Club (

Read more of What in the World and Bob Taylor at Communities Digital NewsRead more of Bob’s journeys with ALS and his journeys around the world.Contact Bob at Google+

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