CHARLOTTE, NC, April 16, 2017 – The key to dealing with ALS is anticipation. Victims of the disease and their families need to plan ahead for whatever eventuality may be on the horizon.
If you have a lot of steps in your house, go ahead and add ramps before you need them because eventually, you will.
Typically bathrooms are not configured for ALS patients so it is best to do necessary modifications before they are needed. If nothing else, you can practice with the new equipment just to make certain they suit your individual needs when the time does arise.
Monday is my day to go to yet another VA facility.
This particular building has been in use in Salisbury, NC for many years, but it is the only place I can go to be “fitted” for an electric wheelchair.
If luck is with me, I hope to get the NASCAR model so I can race with my grandson in the front yard.
Last week I made a return visit to Amber “the gadget lady” to pick up a couple of new devices that should help with other recent developments.
The first is a neck brace which will allow me to walk more upright since my bowling ball sized head is beginning to droop as I walk. The brace works well, but it is uncomfortable so I only use it when necessary. I have discovered, however, that it is a useful tool for eating so now with the arm brace, the neck brace and my bent spoon I can almost get food to my mouth.
The other item was not intended for what I am using it for but it works like a charm. With my head sagging as it is, I have been having difficulty shaving my neck. It is a heavy-duty blue rubbery strip that allows me to tie both ends to something stable before I insert my forehead into the loop at the other end. This holds my head up high enough so that I am able to shave under my chin.
In fact, I even had a nightmare earlier this week that I let my neck go unshaven too long and my beard started growing upward over my face, much like the ivy at Wrigley Field. My fear being, if I waited indefinitely that I’d soon look like Lon Chaney’s version of the wolfman.
Among the recent problems is a tendency to cough at least once or twice during a meal. It’s not really a problem unless I have a mouth full of food and then the consequences for those sitting around me can be dire.
In the process, I have learned to deal with two other aspects of the disability that I have never experienced before. The first is occasionally gasping for air while coughing and trying to hold back a sneeze at the same time. I have been successful on occasion, and once the skill is mastered I may join Cirque du Soleil.
The other is far more disconcerting. During some coughing spasms, blood either rushes to or from my head (I am not sure which). If a cough persists long enough, I occasionally zone out into a sort of zombie-like coma where I am aware of everything around me but cannot move, talk or respond.
It’s almost an out-of-body experience without pain or unconsciousness but no way to communicate. Once the blood flows normally again, I am perfectly fine, but I have no idea how long these “mini-epileptic” fits last or what is happening during my trance.
I am told that there area roughly 13,000 to 16,000 cases of ALS in the United States with only 600 in North Carolina and about 175 in South Carolina. In the on-going battle to acquire some sort of disability supplement, the VA has, for all intents, placed me in a doughnut hole for which there is no escape.
Servicemen who came in contact with Agent Orange during the Vietnam War have a list of 8 presumptive diseases for which compensation is granted. Among those is Parkinson’s Disease which, like ALS, is a degenerative nerve ailment.
In those cases, ALS is a priority because it is terminal.
However, in my case, which is based upon water contamination while serving at Camp Lejeune, Parkinson’s is covered but ALS is not. So given the rarity of ALS, nothing much is going to change very soon.
So, for now, I keep hoping against hope and fighting the battle. Next, I am off to buy some new lace-up shoes to help walk with a sturdier gait.
Normally tie shoes would not be an option, but I can always count on Amber “the gadget lady” to be at the ready to find a solution and I cannot wait to try out my new elastic shoelaces.
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)
Editors Note: Support Bob’s GoFundMe to give him a hand up