Alligator Skinned Boy meets the Human Skeleton: Signs of Progression

Well, hello, calling with updates on my situation. The peeking Tom in the upper right hand corner of my photo is Ronald Tipton, a life long friend. He likes to sneak these pictures unawares when we are on Facetime together. I usually ignore the phone when I am talking with him, but these days I get calls I feel I must take, Doctors and Nurses and Appointments, oh my!

I do not look too bad in this sneak shot, but I have noticed some progression. In the case of Amyotrophic Lateral Sclerosis "progression" never means good progress; it is always an inching down the cliff.

Over the last few weeks I have noticed a slight beginning of sialorrhea. I know, that sounds kind of horrid, but it really just means excess saliva. There is a frequent pooling of moisture in the corners of my mouth that I am constantly wiping away. It hasn't led to outright drooling yet, but is certainly a portent of things to come, for that all goes with ALS. 

Sialorrhea is the fancy word for excess saliva production; however I am most likely not producing anymore saliva than usual. The effect is caused by my throat muscles weakening and inability to swallow at my previous rate. The doctor had actually prescribed a medication to help with drooling after I had been to the Clinic in January, but I turned it down because I was having no such difficulty then. Now it is February and a slight overflow has begun.

On a related note, my taking things down the "wrong throat" is increasing. This is annoying because I spend a bit of time coughing afterward or clearing my throat. There has been a minor-league distortion of my voice that I would call a bit thicker. I also mangle words for some reason.

There has been more noticeable fasciculations.

It was fasciculation
I know
And it might have ended
Right then, at the start
Just a passing ripple
Just a brief tickle
That might have quickly gone
On its way
And departed.

I felt some in my left shoulder yesterday, a teeny, tiny ground swell. I can also see them now sometimes in my wrists and forearms. Back when I was first diagnosed on December 1, the doctor had pointed some out snaking about in my calves and thigh. Very small and slight, but there. For those who aren't familiar with this term, these are just persistent twitches of the muscles, signaling disruptions from nerves in the muscle.  Mine have not yet been frequent or very attention getting, but more frequent than before.

In December I had been issued a prescription for Riluzole. I had put off taking it because of certain side-effect warnings, mainly not to drive until its effect was fully realized. I did not want to be restricted in driving during the Christmas Holidays. On January 6 I told them at the Clinic I hadn't begun this stuff yet. The doctor said most people had no problem with any side effect, except some complained of stomach upset. After the Clinic I began taking it twice every day.

Last week I decided not to take it for a while. I have suffered heartburn and stomach pain since mid-January, enough I have had trouble sleeping and eating. I wanted to see if this was connected to the medication, so I ceased dosing myself and sure enough, I haven't been bothered in the last several days with stomach upset. I'll give it some more time and if the pain doesn't return then I will probably avoid the Riluzole.

Now you may ask if that is wise? Well, the Riluzole isn't going to cure the ALS. It allegedly slows the progression and the statements about it say this may mean four additional months of life. Really? Are four additional months worth the constant pain and suffering of an upset stomach? 

The other thing was my psoriasis really flared up in this same period. The Methotrexate I take for my arthritis had really cleared up the psoriasis. (It is also a medication prescribed for the skin disease.) This makes me wonder if the Riluzole somehow interfered with the Methotrexate. Since stopping the Riluzole the psoriasis has receded a good bit. So, this is probably a good a place as any to explain the title of this post.

When I was 15 years old it was discovered I had psoriasis. At that time it was just patches here and

there, mainly on my knees, elbows and in my scalp. It was easily treated with a salve and some telephone pole scented shampoo. As I grew older, the psoriasis spread and spread and eventually covered most of my body. It was one of the reasons I got interested in the people of the Ten-in-ones, the sideshows or as they were called in my youth, Freak Shows. With my skin condition I felt some disassociation with other people, although I never let it interfere with my life. It didn't stop me from swimming or anything. If people were upset by my appearance it was their problem, not mine. I really didn't become concern until it began showing up on my face and hands, skin parts always visible. 

My wide spread condition could have qualified me for freakdom. They had Alligator-Skinned people in some displays at the circuses. Suck folk suffered from extreme psoriasis or some other blotchy skin disorder. One of the more well-known was Emmett Bejano, who married Priscilla, the Monkey Girl. They did have a long marriage and retired together to Gibtown (Gibsonton, Florida), the circus folk retirement town. (Priscilla and Emmett pictured on left.)

I sort of escaped such a fate, but I wonder about another staple of human oddities, the Human Skeleton. There were some famous skinny men in sideshow history who weighed considerably less than their height demanded. Some of the better known such living skeletons were Isaac Spague, John Coffey (original Skeleton Dude), Eddie Masher (also billed as the Skeleton Dude) and Pete Robinson. As far as modern medical men can say is they suffered from some sort of consumptive disease. It was guessed that Isaac Sprague had a progressive muscle atrophy condition, but not necessarily ALS.

I've noticed a slight wasting away of flesh, especially in my hands. Even the doctor had noted the loss of muscle mass here back in December. I have deep hollows between the bones, a really standout pit between my thumbs and forefinger. My hands have really worsened in the last couple of weeks and I am having more trouble manipulating objects. I spill a lot and complain I am always making messes.

But my legs have become weaker as well. I got up from my chair on Sunday afternoon and almost couldn't walk. It felt as if my left leg was insisting on turning backward. I use a walking stick when I go walking in the park, and I do still walk in the park during early morning. I usually don't use it elsewhere because it can get in the way. I just shuffle or stumble along. I never use an aid in the home.

I decided on the weekend to begin taking regular photographs of my body for comparison sake. I

discovered my leg bones have become quite prominent.  My weight has been constant at 178 pounds. This gulls me because it is heavier than I wished to be. I had taken off a good number of pounds in 2015 through hard effort and gotten down to 165. I felt better being lighter, but more importantly, I got rid of most of the belly fat. My doctors want me to gain weight. I have, of course, but I am already growing paunchy and if my muscles are weakening, how will they hold back the fat? Ah, the unfairness of life! (By the way, that ridge above my left leg bone is not my pelvis or hip bulging out. It is my left hand. It got distorted when I did some needed censoring.)

Along with all I find myself getting out of breath more if I over extend myself, especially coming up stairs or inclines. Fatigue sets in sooner and lasts longer than before. I see many things here I feel need doing, but am frustrated because I realize I can no longer do what might be called menial chores. My realization grows that I need help and it is hard for me to ask. I always feel I am imposing. 

Now, a scary thing. I had great difficulty exiting the bath tub on Sunday. There is little to grab to pull myself up in that room. I had developed a technique of throwing a leg over the side, somewhat like mounting a horse, pushing myself up then with my arms to a sitting position.  Sunday I struggled with that maneuver and barely managed after a good deal of effort. What an awkward picture I made.