Still Walking

Still Walking

Saturday, June 3, 2017

Buddha Belly

Unfortunately, that God is Buddha, so goes the joke.

Of course, Buddha isn't really a God; and perhaps he wasn't all that fat either. You look up images and idols of Buddha, Gautama Buddha, that is, and the representations don't show him as a jolly little fat man with a rotund stomach. Yet, this image of Buddha seems to persist here in the West.

Where does it come from?

Confusion and lack of knowledge, of course. This happy character that often asks one to rub his belly for luck isn't Buddha at all. He is Budai. He was a monk in China from around 907 to 923 AD. His name means "cloth sack", which he is usually depicted carrying. It is a magic bag filled with good things he hands out and it never empties. He is kind of a Far East Santa Claus. Since he is almost always shown smiling and jovial he got the nickname of "The Laughing Buddha" He also became sort of the common depiction in the Western World of Buddha. You'll see a lot of nicknacks and statues of Budai sold as Buddhas, and a lot of restaurants and bars bearing his mistaken name.

So what does all this have to do with me and ALS?

Well, it is because I have been told I should develop a "Buddha Belly", by which they really mean a "Budai Belly". It is we with ALS burn more calories than when we had muscles. We need to keep our body up to what most would view as an unhealthy weight. I read for a guy my height that is 220 pounds. I don't see that as so jolly. I've been there, done that, and didn't like it very much. When I was a skinny teenager I would read these books and the hero was always some dude 6 foot tall and weighted over 200 pounds. That became my desire, something that would hide my skinny chest and visible ribs. I was already 6 foot tall, I just needed the pounds and by the time I was 30 I had attained my goal, peaking out at 215 pounds.

I didn't like it very much. I gradually lost a bit and settled in around 190 pounds for most my so-called
adult life. I had gained something of a Buddha belly that proved stubborn about leaving. A couple of years ago I decided to get serious about it and I upped my exercise to almost fanatic level, ate healthy and avoided sugar and all that good tasting stuff. I dropped my weight down to 165 by spring of 2016 and I was very happy with that. Felt so light on my feet. That middle fat was pretty much gone. (I wasn't using that walking stick leaning in the background yet, either.)

Then at the end of May 2016 Amyotrophic Lateral Sclerosis struck.

Now it doesn't matter how much exercise or walking, with or without that stick, I do, my muscles aren't going to grow and be nice and defined or strong, either. They are wasting away and I have been told to eat all those things I had given up, milk shakes and ice cream and candy and snacks. I have been ordered to put on weight and keep it. I have been told I must grow a Buddha Belly. It is getting there as seen on the left.  I guess I am a long way from competing with a lot of the beer bellies I see out there in the world, but I fear it will continue to balloon outward.

I was to my Primary Physician for the regular 6-month checkup this week. I weighted in at 188 pounds, but that was with my shoes on, so lets say 185. Doctor is happy. I wasn't with that gain of 20 pounds in a year. Everything else was pretty healthy for a dying man. My blood pressure was 130 over 84. All the blood tests they called for were within the normal range, except Cholesterol, but it was only 5 points above the scale. My Creatinine was at 1.60, but that has been steady for the last three years. No one is particularly worried about it.

Probably to most I look kind of unchanged, but I notice what is happening to my body.

My arms are beginning to show the loss of flesh with deepening crevices. I have become really weak, with not a lot of lifting power. I mean, really ridiculous lack of strength. I picked up a 1 quart bottle of V-8 this week from the bottom shelf of my refrigerator and couldn't lift it waist high with only one hand. I have to ask other people to open new bottles of anything, including the V-8, for me.


Two days ago I dropped a plastic plate, supposedly unbreakable, but it broke. Yes, I am becoming more and more clumsy. My hands have deteriorated terribly this year. The loss of hand strength makes it extremely easy for me to drop things. Even keyboarding has become difficult.

My legs, surprisingly, don't show the pitting of the muscles as much, given it was a weakness in my legs that first singled me something was wrong. This is fairly common in a sense. There are two types of ALS, Familial and Sporadic. Familial is just as it sounds, passed down through the family. In Familial cases the weaknesses are more prevalent in the lower extremities.

I have Sporadic, the more common type. In this it is the arms and hands that suffered the most first. Nonetheless, I have to use a walking stick on my walks now.

Also, my breathing has become more labored. I'm not yet to the point of needing oxygen, but I do get out of puff quicker and more often than I did just a few months ago. I fatigue faster as well. This has limited the activities I can perform. I have been mowing our back yard, but just barely and I could tell this week that once summer heat comes I may not be able to do it at all. I have also been trimming some of our bushes, but I can only last perhaps 15-20 minutes before I feel nauseated and need to rest.

My biggest concern is the little woman. She was to her psychiatrist Wednesday (she suffers from Bipolar Disorder and I am her care taker), and her blood pressure was 198 over 126. They are saying it is stress and he suggested we do some traveling. This would be nice, but the health issues over the last year and a half have also left us pretty close to broke. There just isn't money to go off on trips. Frankly, I'm not sure where we go from here.

Maybe Budai has some magic in his sack for us.






Monday, May 1, 2017

Advice Your Doctor Probably Never Told You & Other Pecular ALS Moments

It is very strange this land of ALS. At least this early stage of it is. It's as though I was two entities now. There is a me who feels quite normal, at least in my mind. This me wakes up pretty much like it always has. I do some morning chores about the house until the sun comes up (I am an early riser and a morning person). Then barring horrendous weather, I take my sunrise walk as I have for years and years.

But it is then this other me pushes forward, this me who knows he isn't quite normal, the guy who walks with a stick. The other me, or is it the newer me, doesn't walk as fast or as far, doesn't do anything with speed at all. He drops things...a lot, and he spills and makes messes. Who does this clown think he is, anyway?

Has there been progression? Yes, there has, although I hate calling it progression. Progression seems to imply progress. This is more like regression. My walking is regressing back to the unsteadiness of my toddler time when I first learned the skill. I need the stick to keep me on course, or I wander off in odd tangents to my left or right. However, I am like a Weeble, I wobble but I don't fall down. May the Lord keep me upright, because like the toddler of days long past, if I go down, I don't get up so easily.


I went to clinic at Thomas Jefferson Hospital last month. I do this every three months. The worst part of the whole affair is the drive into Philadelphia. It probably shouldn't be.  I worked in Philly twenty of my early adult years, went to college there and lived in University City for a few years. I know the streets and their ways, and have driven them many times, but I suppose age is creeping over my nerves and I shutter now when I think about that drive.

Ha, my nerves! Good expression for my nerves are falling down on their job, aren't they. If my nerves were acting as they should, then my muscles wouldn't be weakening so and I could put the walking stick away again.

Anyway, clinic is an interesting time. I go  and watch the parade. Doctors and nurses and dietitians and nutritionists and psychiatrists and social workers and physical therapists and occupational therapists and speech therapists and other specialists come calling upon me throughout the day. I'm not under any real treatment because no actual treatment for ALS exists. These people take my vitals, tap and twist my body, ask me questions, give me some breathing tests, watch me walk and how my gait is changing, then give me advice on all things I might try. My last clinic lasted 4 hours. It is thorough. These are caring people looking after me and I appreciate them very much for doing what they do.

I have been sent a respirator and I am trying to use it more. It is a pain because you have to clean the mask and tube and filter every week. This is not hard to do, just a bit annoying. They brought me a nose
hose a couple weeks ago. This is plugged into one end of a tube which is plugged, in turn, into the respirator. It is supposed to free my face up so I can wear my glasses without interference from the month/nose piece on a mask. I found the nose hose even more problematic. It seems more uncomfortable, doesn't want to stay plugged against my nostrils and you must keep your mouth closed, which really cuts down on talking. If you open your mouth the air goes up your nose and right out the mouth and never goes to your lungs. Of no use is that. Thus to sleep in it, you put on a chin strap, a device I have failed to master. I have gone back to the full mask. It really doesn't bother me much and I can sleep with it on.

I was sent some exercises, but am a failure in habitually performing them. They are kind of boring. I miss my old regiment of rowing and using the machines at the Senior Center. I also have this odd tube I should breathe through twice a day for 15 minutes each. I keep forgetting to pop it in my mouth. Besides, it scares the cats.

They got me a leg brace called a toe lift. This is to keep my right foot toes from catching and tripping me. I really haven't had that kind of problem yet and the I can't drive with the brace. I would always be putting it on and off every time I go out and it is somewhat difficult to force into my shoe. I have yet to use it. I have also turned down the few medications they have prescribed. Most are for things that haven't grown to interference yet, like drooling. I am generating more saliva now, but mostly it only causes the edges of my lips to feel overly and constantly moist.

They had prescribed Riluzole and I began taking it after the January clinic. I stopped before the April clinic. It doesn't cure anything, but it is supposed to slow the progression. However, I was getting bad stomach upset at night, which was keeping me awake. I wondered if the medication was the culprit, so I ceased taking it and sure enough after a day there was no more of the stomach problems. I haven't tried it again. It says it might extend survival by two to three months. Are you serious? Two to three months more to live, why bother? Think about the end game to this disease and ask do you want two or three more months of it? I don't want to torture myself with a roiling stomach just to gain a couple months of living in paralysis.

They also said I should be walking with a stick even when moving about the house. I haven't gone to that yet either. I am not tripping or falling on my short shuffles through my rooms.

It is difficult to dress, but not to a point I need help doing it. Socks remain the hardest. Tying my shoes is a challenge. Getting my pants or shorts on to my legs is also an adventure, something of a comedy routine.

Taking a bath presents its own set of problems. Not really the bathing, except I can't quite reach my toes, something that makes nail clipping nearly impossible. Otherwise, I can get down in the tub and scrub myself and shampoo my hair (what's left of it). Getting out of the tub is another matter. It takes a bit of doing, pushing with my arms and my feet planted to the tub sides and getting the old caboose up and over the generally slippery tub side. The other day I wasn't certain I would make it, but the whole embarrassment that would come from having the fire company rescue me from my bath spurred me to super human effort. The thing was my arthritis had hit my right elbow with a good deal of pain and my right arm was near useless, so my usual pushing up with it was somewhat nil. Plus every time I attempted to swing a leg over the side I was hit with a cramp, this leg, then that leg, and back and forth.

They worry about my weight, not that I am too fat, but that I am too thin. When the nutritionist and
dietician did their visit, they were pleased my poundage was up to 185.  That is where it is today and I don't like it. At the start of 2016 I weighted 165 pounds and had worked hard to get down to that. I felt good and comfortable. I had accomplished this feat by not only my 5 mile or more walks every morning, but by hitting the gym three times a week and using a rowing machine at home. I had cut most sugar out of my diet, did not put any on my cereal or in my coffee, avoided cakes and candy, etc.

But now I look at myself and I am getting fat and dumpy. All that belly blubber I had eliminated is back. I am even getting fat rolls on my back, everything more apparent since my muscles are deteriorating. Exercise doesn't help. Nothing can build back my muscles and my diet is a magnet now to fat.

The dietician told me I need to keep gaining weight. I should be eating cake and candy, ice cream and milk shakes. I shouldn't skip any snacks. I needed to quaff down a lot of high calorie food. I turned to the nutritionist and asked, "Are you sure she's a doctor?"  I never had a doctor give me that advice. It has always been the opposite."


If my body is growing fat and flabby, my limbs are going the opposite direction and turning into sticks. Not so long ago I could show some muscle in my arms.

But now they are these bizarre pipes. I could pass for a living skeleton.






My legs used to be fairly decent looking, defined by all the walking I did.  But they are disappearing into shapeless appendages.

Last week I considered my life now. This disease is untreatable, incurable, progressive and ultimately fatal. Since is it untreatable, why do I feel I am being treated? I decided I wanted to live out my life doing the things I enjoyed doing, my walks and my writing anyway. I had been told not to push myself on the walks, but I can't help myself. I had been making it between one and two miles, but I started going a bit further each day and this last week I believe I got up to about 4 miles. Fine, I probably should have left it at my morning cleaning chores and my walk, but I trimmed a bunch of bushes and then I mowed the back yard. Good golly, Miss Molly, the grass was a foot high, it had to go. I did some other things.

But it depleted me. I was a mess by week's end, fatigued and worn. Not only that, but my psoriasis came flaring back with a vengeance. My skin has been relatively clear since I got on methotrexate in 2013. The medication was for my arthritis, but had the side effect of clearing up the patches and redness of psoriasis. I am hoping this latest flare up is from over stressing my body and only temporary. I don't need to be an alligator-skinned man again, especially a fat one.



I am a lousy patient, I know. There is a movie I enjoyed called, "The Straight Story". It is the true tale of one Earl Straight who became determined to visit his brother. Problem was he lived in Iowa and his brother lived in Wisconsin and Earl wasn't allow to drive any more. He made the trip on a riding mower. Along the way there was a nice man who offered him a lift, but Straight wanted to finish what he had started.

He told the guy, "You're a kind man talking to a stubborn man."

That's how I feel about all this advice I have been given. You all are kind people talking to a stubborn man."

Now we'll see where the next three months take me.



Monday, April 3, 2017

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.


Friday, March 3, 2017

Cat Falls, Fatigue and Progressions

Looks innocent as can be, doesn't Sara? She is a sweet little Tuxedo Cat. She is also an assassin.

When I go to clinic I get asked about falling. I use a walking stick and I have a toe-lift brace, which I haven't used, to aid in keeping me upright. All kinds of warnings to be careful, but they forgot about cats. And thus, I fell over Sara.

It was early morning and I was feeding cats as usual.  I had just set the plates down and Mark was chomping away, so I turned to leave. Sara quickly, and cats are very quick, ran beneath my feet.
I started, trying to avoid stepping upon her. I was in my stocking feet, which was a bad choice that morning, and my feet had no grasp, just good sliding ability and I went down to the left. I landed hard on the side, feeling the drop strongly in my ankle, knee, hip, wrist, elbow and shoulder. It made such an explosive noice my wife awoke and came hurrying in to see what was the matter.

"Are you dead?" she might have asked me.

I wondered myself, but thought more about how many broken bones might be sticking through my skin.
There were none. Using nearby chair as a prop, I got to my feet. I had pain in my right elbow and wrist. They must have slammed into my body when I landed. My right elbow is still a bit sore. Most of me remains somewhat stiff, especially the upper inner thighs. I had a small bruise on my upper leg and one on my left rump, but otherwise am unmarked, and apparently, amazingly unhurt. I mean, I don't think I have ever fallen so hard. Naturally it had to be in the office, the only upstairs room, other than the bath and the kitchen, without carpet and padding. It is hardwood; very hard wood as I learned.

This fall had nothing to do with my ALS. I think not, unless it was my failure to pull my shoes on that morning. Dressing is a bit of an effort, especially socks and then shoes. Pants are a bit of a dance about as well. I did have my pants on, though.

Part of my struggles are inflexibility, like reaching my toes, and part is fatigue. Fatigue is growing, which must be some further progression of this disease within me. I am getting worn out much more rapidly and often these last few weeks.  Before I could go awhile at chores before I had to sit and rest, but these days I seem to have fatigue upon my back with any effort. And speaking of backs, mine begins to hurt not long into my morning cleanings. It feels like the muscle pain I use to get only after several hours of yard work or lifting.  Now it attacks after a couple of litter box changes.

Cooking really cooks my goose. If I prepare a meal I finish it physically wasted and half sick. Even prepping a roast for slow roasting in a crockpot is an epic effort. I am beginning to feel rather useless.

I am also suffering from lethargy, something that ALS can also bring, probably as an offshoot of the fatigue. It is difficult to go and do. It is hard to describe the feeling. It goes against my nature, but it is there and I think it's winning. Even keying out this post is sapping my energy and my enthusiasm.

I read ALS Association tips to fight the fatigue, but dabnabbit, what I should give up are what I have always enjoyed. I should limit my walking to only what is necessary, but I have always been a hiker. It said avoid extremes of hot and cold. That was part of the hiking fun. I miss being out in the local state parks on the guerrilla trails as it is. I have limited myself to a traipse about safe Rockwood, and then I can only make a mile or so before I must return to my car. I even avoid using the parking placard if it isn't raining and there are regular spaces not too far. I only use the walking stick when on a hike, not about the house. Yes, I know I am a stubborn man, or fool as may be.

The article said to avoid long soaks in warm water. Are you kidding me. One of my life long pleasures is to slip into a hot tub and read for an hour or so until the water cools. This practice has proven risky enough since I do fear I might not be able to pull myself out of the bathtub, and now I should just give it up?

Eat more protein was another. I have been a partaker of protein. I belong to PETA, People Eating Tasty Animals. The problem is I have an overall lack of appetite. I actually get fatigued chewing and I also fill up quickly. My eating habits have become a bit quirky, and yes, both the fatigue and the lethargy cause me to avoid any lengthy preparations. It is easier to pour some milk on a cereal or pop some popcorn then cook a meal or even build a sandwich.

I haven't been losing weight. The doctors have been on me to gain pounds, and I have. I weighted 182 last time on the scales. This upset me. I do not want to be this heavy and am not sure how to reduce. I find myself eating more sweets these days, which doesn't help. A year ago I was avoiding a lot of sugar, no snacking, no sugar in my coffee or on my cereal. Now I plead for them to keep the sugar refineries refining.

I also can't exercise as I was. I had a regular regime, my 5-mile morning walks, my three days at the
Gym and my rowing machine each night. All gone, except my morning walk, but as I said, I am down to a mile or so now.

So other progressions. I am on the verge of drooling and sometimes lightly do. My mouth corners are always moist. I am having some problem swallowing, nothing major, but I can't guzzle a drink for instance.

My hands and feet feel odd, like they are foreign to me. I have grown ever more clumsy. The inner part of my hands look like I have socked them in water for hours, pruney as we use to call the look. I also notice my fingers, especially on the left hand, are always curling inward. I see that some people have to resort to hand braces to keep away permeant fists. Hmm, that is a concern. How do you type with fists? I am having lack of pressure on the keys as I type, so letters are often missing on the page.

My legs are beginning to display the same sink holes under the flesh as my hands, pits where bulging
Muscle should be and once was.

Bit of a mess, ain't I?

Tuesday, February 7, 2017

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.

















Friday, January 27, 2017

Fears and Realities

What were your childhood fears? Did you fear the monster under the bed, the Bogeyman in your closet or other things that went bump in the night. My friend, Ronald, feared the Frankenstein Monster.

Ofter the fears had some basis for existing. Perhaps the lose of a parent or parents getting divorsed. Certainly some of us feared the bully at school.

So many things we might choose to spook us and  in many cases our worse fears never came to be.

I certainly had a collection of such things, fear of heights and fear of the dark, but one of the specific fears I had, and almost forgotten about, was something I saw at the Carnival.

Circuses, Fairs and Carnivals were popular diversions back when I was a child. Some were big affairs, like Ringling Brothers, Barnum and Bailey that traveled from city to city on a circuit each year, others were simple town fairs sponsored by the American Legior or Kiwanus Clubs. My nightmares started at a large Carnival, perhaps in Reading or Allentown, Pennsylvania and I was very young. It was either the late 1940s or early 1950s.

Carnivals had their own sideshows and oddity displays. I remember this was a trailer sitting alone
along the midway. My family took me it, going up some wooden steps to enter. In the center of the room was a large cylinder lying on a support and inside this object was a young woman. Only her head stuck out on one end. The rest of her was completely encased. There were glass windows along the side where you could see her body. Over her head was a mirror where she could see herself, or at least her face. She spoke, greeting people passing by her strange prison. This was an iron lung and it breathed for her.

I am not sure why such a contraption was on display at a Carnival. My guess is it was because on the then very prevalent Polio epidemic. The Salk Polio vaccine had not been developed yet. Its discovery came in 1952 and it was announced to the population in 1953.  Prior to that their were many people confined to an Iron Lung, the majority being children. Perhaps this display was to bring Polio to the public attention, although I doubt such attention was needed. It was a dreaded disease, much feared. The President in place when I was born had it, but he wasn't confined to an Iron Lung. His case of Infantile Paralysis. or Polio, put braces on his legs and sat him in a wheelchair, but did not cause him to be unable to breath on his own.

After I went through that carnival exhibit I had nightmares that went on for weeks, months. How horrible to live like that, locked away in a great tin can unable to walk about or anything. This idea of confinement became one of my greatest fears.

This fear never really left my mind. It did expand beyond the Iron Lung, a device you'd be hard pressed to find today. But the idea of paralysis did merge with that earlier sight. People sometimes broke their neck and couldn't move. I met such a fellow in my twenties, almost taking an offer to be his companion.

When I became a Born Again Christian in 1975, I received a copy of the book Joni from someone. This was the autobiography of Joni Eareckson (later Tada). Joni was a Maryland girl, born in 1949. She was quite an athlete as a teenager in several sports, including swimming. In 1967, still only 17, she dove into too shallow water of the Chestapeake Bay and broke her neck. She was left paralyzed from the sholders down. She went on to write several books, get married and form a Christian organization afterward. She is also an accomplished painter, holding the brushes between her teeth. She is very inspirational, but for me she brought back the images of the girl in the iron Lung and the horrible idea of not being able to move.

These earlier fears traveled to the back of my mind as I grew older.

The old images came flooding back after I saw the film, "The Diving bell and the Butterfly". This 2007 movie was based on the memoir if Jean-Dominique Bauby. He had been the Paris editor if Elle magazine, but he suffered a masive stroke that left him with Locked-in Syndrome. This meant he could move nothing, except his eyes and a bit of his face. He wrote his memoir by using a letter board. A person would call out the letters and he would blink when they called the one he wanted. By such a method he wrote his book. It took him ten months working four hours a day to accomplish it, but he did it. Unfortunately, he died only a couple weeks after the work was published. He was 44.

I though about this when my mother had her stroke. It hit her in a portion of the brain stem that could have possibly caused Locked-in Syndrome. It was bad enough. It made her left side of no use and left her unable to swallow.

What horrible fates, I thought.

Now here I am with amyotrophic lateral sclerosis and Lockein Syndrome is most likely my fate, if something else doesn't kill me first. This is the state Stephen Hawking is in. Yet, oddly, I have no fear as I had after the woman in the Iron Lung. In the movie. The Theory of Everything", young Hawking was depicted as depressed and distraught after his diagnosis, at one point smashing chair against a wall. I fell no such depression and I have smashed nothing, not yet anyway. I'm not happy about it, but figure I will just live my life best I can. They only part that really bothers me is the possibility I will lose the ability to swallow. My mother did and she had a feeding tube. I am not fond of that idea.

I seem to have been lucky. Below is a clip, a trailer for the movie. I wanted people to notice how he walks with his toes pointing inward. The clip below it is of me walking and my toes point out. This is a blessing for in pointing toes make for easy falling; out pointing give me more stability, for now anywa








video


The realities have chased away the fears. We only deal now with what is.

Tuesday, January 17, 2017

What They Must Think of Me

As I reported recently, I was to a three hour clinic the other week, like an interesting specimen at your local zoo. I wonder what they saw looking at me, because I got the report and am not sure this is the same guy I see in the mirror. Do I really need all this stuff all ready?

Stuff, what stuff?

Apparently there may be a lot of stuff you may eventually get in your stocking, so you might need a pretty big stocking.

I didn't get much of an explanation of the results; listed under the grouping: Vitals,  just more of a list of the stuff they want me to have.

Let's start with the first stat and it was disturbing to me. My weight, which was 178.5 pounds. A couple years ago my weight was in the 180s someplace and I wasn't happy about it, even though people continually referred to me as trim or thin or sometimes skinny. I didn't feel that skinny, too much belly fat. The photo at the beginning is me by some rocks as I took my early morning walk of 5 or more miles, I took these walks every morning for years. This one was in 2014 and I did weigh over 180 pounds.

In 2015 I spent the year doing not only my usual morning walks, but also regular exercise routine as well as cutting back on sugar and eating more fruit and vegetables. I was doing these exercise stations along a track in a state park, using a rowing machine at hime and going to the senior center gym three times a week.


By the end of 2015 I had achieved my goals. Most of my belly fat was gone, my weight was at 165 pounds, I was physically strong, felt good and was getting very good doctor visit exams. And so it went until that fateful late A when during my usual morning walk my legs went weird and I found myself 6 months later being told I had ALS. Thus we return to my clinic results and my unhappy gain of weight. However, the doctors aren't unhappy with those pounds. They want me to gain a few more and to keep a weekly record on the scales; just don't lose weight!

Being told by your doctor to gain weight can have its advantage.  I'm eating candy and having milk shakes again.

The second, and oddly last, statistic under vitals probably should have disturbed me more, except I don't know enough yet to read these things on first blush. We are very thankful for Google. This was Forced Vital Capacity: Erect 47%  Supine 61%. Capacity of what and what do the percentages mean?  I hadn't a clue.

The Vitals were followed by directions.

FEEDING: (Boy that does sound like a specimen in a zoo. It is feeding time, watch the trainer feet the seals):  I was to continue with my current diet, which to them seemed suspect. I generally have a bowl of cereal in the morning (although sometimes I pop some popcorn instead) with a couple cups of coffee and occasional a sticky bun. Lunch is anything that strikes my fancy to grab these days. I don't follow any formal three meals a day. I might make a sandwich or I might just eat some potato chips or I might have nothing at all, except a glass of V-8 and/or Orange Juice. My big meal will be dinner, generally in a restaurant three times a week. It is usually typical, I guess, a protein, a starch, a salad, a side. Oh, Sundays I have a donut at church and then soft Philly pretzels as my midday meal.

They recommended Ensure Plus as a meal or snack. I prefer my milk shakes from ARBY's but we'll see.

GENERAL:

Utilize built up handles for utensils and handwriting tools.  This consists so far of a foam rubber tube with a hole down the middle. You stick your fork or spoon in the hole and it gives you more control. Or you stick a pen or pencil in the hole to aid in writing. I haven't really utilized this yet. I am clumsy now and drop things like a fork, but I still manipulate them pretty well if I hold on to them. Where I really fail these days is cutting, but none of our knives fit the hole. I need some kind of cutting aid, which does exist, I just don't have any. My handwriting has always been bad and it is getting worse, but its more a degree of unreadability. To tell the truth, my keying is weakening as well.

I was given three exercises to do, all involve stretching to maintain a flexibility. They aren't difficult; just boring.

There is also an odd looking gadget I am to breath through twice a day for 15 minutes each time. I wear a nose clip to force my breathing through the mouth. This supposedly strengthens the muscles that aid in breathing. The nose clamp tends toward hurting after a bit.



A prescription was ordered for Levsin to help with drooling. I had them cancel this. I have not reached a drooling stage yet, thank goodness. I read that tomato juice and sucking olives relieves drooling. I like tomato juice and olives. I wonder if V-8 would do the trick, I already drink a good bit of that and it must contain a lot of tomato juice.

They also suggested tonic water with quinine for cramps, one glass a day. I am not having cramps.

They want me to wear a right toe off brace to improve foot clearance. I go to get fitted with this next Monday, but I really haven't been tripping. I hope it isn't a drag.


Finally, BREATHING, which I am still managing to do. They have seen I was supplied with a
Trilogy Respirator with full face mask. I appear like I'm flying high altitude jets or something. It is a strange sensation as this thing pumps air into me. I am supposed to sleep wearing it, but for the most part sleep avoids me when I wear. Perhaps it is frightened. I have fallen asleep with it on a couple times, but both times I woke perhaps an hour or so later and had to take it off to fall asleep again. I wear sometimes just watching TV in hope I'll adjust to the weight and discomfort. Again, this is a device to build my muscle power for exhaling.

I didn't expect so much equipment this soon. I get fatigued easily, stumble a bit, but I am still  functioning.