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After ALS diagnosis, Social Security says “pound sand”

Written By | Jan 8, 2017

Bob Taylor, taking a break somewhere in the world

CHARLOTTE, NC, January 8, 2017 – Someone once said, and I may be paraphrasing a little, “You come in alone. You go out alone, and everything in between is a gift.” I tried to find the author without success, but no matter, it’s a nice thought anyway. Technically, you don’t really come in alone, but that’s only a detail.

Sometimes I have strange thoughts about the future these days. For instance, I cannot explain how many times I’ve told someone recently that “I will miss them.”

How stupid is that? No, I won’t. How could I miss them?

Or I ask myself if there will be New England fried clams in the afterlife. If not then how will I know whether I am in heaven or hell?




Of course, there are more serious things to think about too. Such as getting out of bed in the morning without crashing to the floor. I’ve done it a few times and getting back on my feet is a challenge.


The art of living with ALS: Socks and other new challenges


I’m not certain how others have solved the problem, but my solution is what I call the “rock-and-roll-two-handed leap.”

This is how it works.

First, I get as close to the edge of the bed as possible. I then rock backward and thrust my legs forward to create a rocking motion. It usually takes two of these to get into a position where I can shove my left elbow onto the mattress with my forearm extended toward the ceiling.

At the precise moment, and timing is everything, I then grab my left fist with my right hand and push downward to create leverage. Another rock forward and I’m standing up, ready to take on the day. It’s a bit convoluted but so far it works.

Eating is also becoming a new challenge. I must admit that I rarely got through a meal in my pre-ALS days when I didn’t spill something on my shirt, tie or jacket. Now at least I have an excuse.

Still, I have learned that on most occasions I am going to leave the table looking as though I am wearing an Italian tablecloth. I have come to accept it, and simply change shirts whenever possible.

Yes, there are bibs, but you would be amazed at how food manages to sneak underneath the covering when you least expect it. Not to mention I feel like I now belong at the ‘kids’ table on Thanksgiving. And I was only promoted a couple of years ago.

All of that said, there are things about this process that trouble me deeply and I sincerely hope that at some time in the not so distant future, our leaders devise a better plan for taking care of American citizens who truly need assistance.



When I learned of my plight, I immediately realized there would come a time when I would no longer be able to function in a productive manner that would generate income.


Battling ALS at the “Monster’s Ball”


It occurred to me that perhaps Social Security would provide some disability that would offer a bit more money than I currently take in. Either I did something wrong, did not know what questions to ask or I am simply too naive to believe that this great country of ours makes no such provisions.

I was told that since I was already getting Social Security I do not qualify for disability. It felt as though the voice at the other end of the line was saying, “Tough darts old man. Starve.”

She was actually very pleasant, but that’s how it sounded on my end.

Visiting the SSD website, her news was confirmed:

In recent years, denial rates have climbed to well over 60% for the initial application stage, leaving applicants unsure of their options and unprepared to further pursue a claim for the benefits that they rightfully deserve.

When I look at the news and see thousands of illegal immigrants crossing our borders and refugees from other nations, who could at some point do us harm, receiving better benefits than a native born citizen, I have to question whether this truly is the greatest country on the planet.

I am not seeking a handout. I haven’t purchased cardboard boxes so I can stand out on the street corner and beg, but it does seem that people who genuinely have needs for assistance should be able to get it before we take care of those who refuse to even assimilate into our society.

When he learned of my situation, a good friend whom I have traveled with and who shares my wanderlust spirit, set up a Go Fund Me page to provide financial assistance for upcoming medical expenses. I am truly appreciative of his efforts because, as far as I can tell, Uncle Sam has turned his back on people like in similar straights. I emphasize that I do not expect anything from anyone.

As the phrase says, “Everything in between is a gift” and I have indeed been truly blessed.

I should mention that many of my friends, in an effort to be supportive, have attempted to provide gifts that I may find useful over the long haul. And that I am now officially requesting, please do not send any more hats.

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

Follow Bob on Twitter @MrPeabod

Bob Taylor

Bob Taylor has been travel writer for more than three decades. Following a career as an award winning sports producer/anchor, Taylor’s media production business produced marketing presentations for Switzerland Tourism, Rail Europe, the Finnish Tourist Board, Japan Railways Group, the Swedish Travel & Tourism Council and the Swiss Travel System among others. He is founder of The Magellan Travel Club (www.MagellanTravelClub.com) and his goal is to visit 100 countries or more during his lifetime.