This isn't any April Fools gag.

My feet are ugly, more so than feet usually are. It is not the problem with looks, though. They just don't work properly as feet anymore. My toes no longer move on command; that is, I may think, "lift my toes", but they do not lift. They don't do anything except stick out there uselessly. When I try to have them act like toes should act nothing happened, I do feel a strange sensation back through my feet. I can't even describe it properly. I can feel the toe bones all the way back to my heels as if they are trying to obey, but it is just an annoying feeling like a tingling shock.

The rest of my feet feel strange as if I was wearing socks

when I am not. All this weirdness may explain some of my balance difficulty. Despite these disabilities, I can walk, no problem there as far as the feet are concerned. My walking  problems are in my legs where I first noticed something was going heywire with my body. If I am going to walk any kind of distance, I do have to use my walking stick now.

Perhaps the most bothersome thing involving my feet is I can't reach them with my hands. This makes pulling on socks and shoes problematic, especially socks. Even worse, it is nearly impossible for me to clip my toenails. Somehow with a great deal of effort, I have trimmed them after they grow too long. I do this after a good soak in a hot bath.

Hot baths present another adventure. I have little trouble getting down in a tub, granted I do it carefully so I don't go thud. Getting out is scary. I have to flip a leg over the side then push up with my arms and hope I can get the other leg over and my bottom up on the edge. My arms are growing weaker each month. We have no grab bars or anything helpful for extracting slippery old men out of soapy water.

One of the measures of my weakening arm strength is the bags of cat litter I must purchase and carry in from the car. A year ago I would purchase a month's worth, perhaps seven bags, each weighing 40 pounds. These I would haul in and put three in a chest we have upstairs for them and then tote the other four to the basement until needed. By the end of 2016 I couldn't lift 40 pound bundles anymore. I started buying 25 pound bags, only two or three at a time. I took none downstairs anymore. This was fine for much of this year, but now carrying the 25 pounds is becoming challenging; therefore, I am losing more arm strength. My biceps are shrinking.

Worse, I am getting fat. The doctors wanted me to gain

weight, well I have. I am back just over 180 pounds and I don't like it. I had worked hard in 2015 to reduce, firm up and lose my belly fat. I've gained over 15 pounds this year. Now I have a paunch and my chest has become flabby. And I can't do much about it. 

I can't get enough of the exercise that I was use to. Not only can't I walk five miles or more in the morning, when I do walk is at a much slower pace. I can't even get down on my rowing machine, let alone pull the oars back and forth. I don't like looking as if I'm pounding away the beers. I don't even like beer.

It isn't so much overeating either. I am losing my appetite

actually. Even looking at ads on TV for a lot of foods makes me half sick. When we eat out I only get through about half what's on my plate, and sometimes that is an effort. Add to this the fact that it is tiring to chew, I can't say I am pigging out at all. However, I am ingesting more sugar than before. In 2015-16 I had cut a lot of sugar from my diet. I didn't drink soda, I didn't spread sugar across my cereal or spoon it into my coffee. I avoided candy bars and cakes and pies. Now, unfortunately, these are what does appeal to me, especially Jumbo Jelly Beans, my new addiction.

As far as other progressions in my body, my hands are the

worse. The flesh has really shrunk around my finger bones and I have become even more clumsy, constantly dropping things. The latest concern is will my fingers become like my toes? What happens if my fingers don't work? (I also see a bit of hollowing in my arms.)

I get back aches easier and earlier when I do any work about the place and my neck is also hurting more and it's hard to hold my head upright. I am sometimes drooling at night in bed. The edges of my mouth are usually pretty moist. I believe swollowing is being affected. I am swollowing down the wrong pipe a lot causing coughing spells, usually at the worse times, such as when the Pastor is preaching.

On Friday, April 7, I have another clinic visit at Jefferson Hospital in Philadelphia. We'll see what they think about me. I do wonder what will become of me. I don't want to end up in a home nor on the street. Otherwise, I'm pretty positive despite it all.

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.