Battling ALS through VA red tape, drug studies and French toast

My only regret with the onset of ALS is whether or not there is French toast in the afterlife. I'll defer on the answer as long as possible.

By Jonathunder - Own work, CC BY-SA 3.0,

CHARLOTTE, NC, September 3, 2017 – Back in May we had a meeting with my VA counselor who, after several paperwork snafus, completed all the necessary forms to qualify me as 100% disabled.

Until that time, even though we had made several trips to the Salisbury VA campus about 40 miles north of Charlotte, we were not able to obtain certain benefits such as my electric wheelchair.

Somewhere along the line, one important form among the seemingly endless stream of government papers got lost. After two or three additional meetings and several phone calls, we finally learned that the hold-up was due to the missing paperwork.

On Saturday, September 2, the invisible letter finally turned up in our mailbox. Upon review of the required information, the only thing that had been done to complete the process was two simple check marks, a signature and a date. And for that it took more than three months to obtain.

Battling ALS: Creatively thinking outside the box

It made me curious as to whether I live in the United States or the “Check Republic.”

Is it any wonder why people can become so cynical about the government?

We are continuing to wait for yet another form, which has been submitted twice already. This form will allow my wife to be able to speak on my behalf or to get information regarding any developments in my condition. Hopefully, once that is completed, the nightmare of the paper monster will be finished.

That said, my complaint is not with the personnel or the benefits of the VA. The services they provide to thousands of veterans is overwhelmingly generous and compassionate. On the other hand, the red-tape and getting answers to seemingly simple glitches in the system is the thing that drives someone to the nuthouse.

Last week was the next last session of the ALS infusion study I have been participating in since May. Each three day cycle consists of a one hour injection of medicine or placebo followed by two hours of post-procedure waiting.

For some unknown reason my veins have learned that when we go to the ALS center it’s time for them to disappear well below the epidermis to avoid being stuck for 60 minutes or so. It’s not unlike a pet when it knows it is going to the vet.

Battling ALS: Becoming a Guinea pig for Radicava clinical study

On Tuesday it only took six tries to locate the mother lode but Wednesday was worse. After an hour and 15 minutes and ten pre-infusion stabs, we finally hit a nerve somewhere in my left arm. Proving the age-old adage about “work not being in vein” or something similar.

So as I write this today, I am on “bruise control” with both arms and hands turning a lovely shade of purple that resembles a map of the world. It makes me wonder how anybody could ever endure the process of getting a tattoo, especially in a sensitive area.

Sporting activities have progressed from “soap hockey” to “pillow wrestling.” Anyone with a sleep apnea machine knows all too well the nightly ritual of donning a mask and then being tethered to an apparatus that aids your breathing.

There is a long corrugated cord running from the machine to the mask and no matter how much you try to sleep in one position, the cord is going to find a way to wrap around your body.

Add in the further complication of not being able to use your arms which means adjusting a pillow with your head and shoulders and T-rex hands, and it can be a test all its own. Reaching for a pillow in the middle of the night after being aroused from a semi-conscious state only to discover that you have become a sleep apnea mummy is a challenge to say the least.

After several rounds of’ “ALS pillow talk” exhaustion finally takes over resulting in blessed sleep until the next battle occurs a few hours later.

Damn! VA disability recognizes Parkinson’s, but not ALS

For as long as I can remember my morning ritual has included breakfast with my buddies. Weekdays, weekends and holidays don’t matter, there is always somebody there to share ideas with and discuss the world’s problems.

The group has modified over the years. Due to attrition, it is slightly smaller today, but the legacy continues, and I am thrilled to still be a part of it. My only regret with the onset of ALS is whether or not there is French toast in the afterlife. I’ll defer on the answer as long as possible.

Needless to say, the sun came up again this morning, and I arose with it. Another day to count my blessings and share the wonders of our “big blue marble” with friends, neighbors and loved ones.

About the Author: Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was an award winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.

Taylor is founder of The Magellan Travel Club (

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

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

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