Realities

I have not updated this Blog for a long time, since February, in fact. Given what I have, people may be thinking I passed away. I have met a couple guys who got it after me who have since passed away, and they were younger than I. So to dispel any rumors of my premature crocking, I am doing an update.

I still take a morning walk. I have walked all my life and I am not stopping now just because I can't go as far or as fast. I have to use a walking stick or I wobble about and may fall over. My doctors tried to persuade me to use a walker  last month, but I do not feel I am ready for that step yet. For as long as I can I will stick to my stick.

 I use to take many of my walks in Brandywine Creek State Park, which I favor. I hadn't been in that park since the ALS symptoms showed up in late May 2016. But I miss those trails so much that this past week I decided to test it out. That first picture is me testing it out. Could I possibly return to walking there?

The answer is , No!

I went down from the parking lot at Thompsons Bridge to the east bank of the creek and turned north

along it. This took me under the bridge and into the woods. I always enjoyed the stroll here, very peaceful, you know? It was incredible to think I haven't been in this park for just over two years, and though there were some changes back at the parking lot, like newly painted lines and cement blocks behind the spaces. The actual creekside path seemed unchanged.  I always considered the northern creekside trail the easiest path in the park. I don't think it shows on the official maps. It is one of many guerrilla trails, yet is  relatively flat and obstruction free. Parts of it run along a embankment edge just above the water calling for surefooted balance, something I now lack. Due to the many rains of the spring, despite several hot dry days, the way was dotted with a number of mud holes to be skirted.

This path proved less than easy for me now. I was very dependent on my walking stick to keep me upright and straight and out of the creek. It was delicate avoiding the mud. When I reached a section in a march lined area that long ago I dubbed Mosquito Alley, I found it more than living up to that sobriquet. The bloodsuckers were the worse I ever saw. I had a continuing circulating cloud of the bugs about my face and head and regular feeders upon my arms and legs. It was as if one of them had rung the dinner bell. The banquet was served and I was the buffet. They even followed me when I turned up a side trail toward the main trail called Piken Creek Road.

Used to be I would have continued straight, crossing a gully and run upon a fallen tree truck into a
cornfield beyond. No way I dared risk such a ford anymore. Therefore, I headed up the side trail away from Mosquito Alley for the higher and drier ground of Piken Creek Road. (By the way, I have never figured out where this Piken Creek is.)

Even though Piken Creek Road is a portion of the Northern Delaware Greenway running through this park and is well traveled and wide, it is still rutted and rock strewn. I found it more difficult

that the lower creek trail when walking with a cane. By the time I returned to my car I knew the reality was that my walks in Brandywine Creek Park were over. I had struggled on this little hike; the other trails would be impossible. From now on, as long as I can actually hike, I will be restricted to Rockwood Museum Park and Bellevue Sate Park with their nice paved byways, although at bellevue I do still walked through the meadow and sometimes around the horse corrals into and through the woods there.

Last months my wife, Daughter Laurel and I did visit Longwood

Gardens and it was a nice place to walk.  No rough stretches. Longwood is expensive to visit on any regular basis. I would not have been there last month if not for the ALS Association of Greater Philadelphia, which sponsored the outing. The ALS suffer and three of there friends or family could attend free of charge. They also served us a nice luncheon.

A temporary respite is now occurring.

I had to pause in the middle of my writing due to cramps in both hands. This is another nice present I have received with the ALS. Some days the attacks are very light, occasionally even a cramp free one. Today was not one of those days. Perhaps our dreary, damp, high humidity weather had some influence over my muscles, or maybe an evil minion of the Devil came to torment, but I had much cramping all day. I had a number of very painful ones in my legs, but I also had a back and forth series of cramps in my hands, like they were playing ping pong with pain. The hand cramping just wouldn't let up and I finally had to walk away from the keyboard for a while. Of course, as soon as I got to the living room and sat down I got hit with a stubborn cramp in my left leg.

Back to writing again.

The weakness continues to gradually grow, as does my lack of balance. My hands are the weakest

and my dropping of objects just multiplies. I can manage to lift and carry about 25 pounds with effort for a short distant. I always need help to open bottles. There is really not a lot I can do of a physical nature anymore. I am either too weak or I fatigue too quickly. Even very light effort can ware me out. For instance, I volunteered to be with some from my church to help out Grandpop Bubbles at the Delaware Children's Museum on the Riverfront a week ago. I wasn't much help. Something I quickly realized was when you mush depend on a cane to be standing, you also lose the use of one hand and become a one-armed man. I circulated about, snapped a few pictures and kept an eye on the kiddies that they were doing things properly as they attempted to create giant bubbles, but after two hours I had to leave. My spirit was willing, but my flesh was screaming get out of here before you collapse. (In the photo I am the old man in the green shirt.)

As much as the physical deterioration annoys me, I am more concerned about the mental. They use to believe ALS had no effect on the brain, but in the last decade or so they have found it does. Hopefully, I won't go as far as getting frontal lobe dementia, but I am having some cognitive problems. Here is a list of what could happen but has not, at least not yet and I would prefer they don't:

• Behavior becomes embarrassing, childlike, inappropriate, or uncharacteristic
• Person seems to have lost “a filter” with regard to making comments or expressing opinions
• Person loses table manners and begins stuffing their mouth with food
• Loss of judgment with regard to making decisions or making a decision that reflects a strong departure from views the person expressed in the past
• Lack of concern for others, one’s own illness and symptoms, and/or no view of the future
• Fixation on a single idea or activity with a need to repeat the concern or repeat the activity
• Increased aggression
• Says “no” when means “yes,” or becomes less reliable with yes/no responses
• Says sentences that convey little meaning
• Cannot follow instructions to complete physical therapy/occupational therapy/speech therapy exercises, stretches, or guidelines such as swallowing precautions.

Like I said, those 10 bullets above are not happening to me so far, but now here are some that I have noticed occurring, some with more frequency than others:

• Person begins eating sweets, or only one type of food to the exclusion of a more balanced
  
  diet.  [My diet has become more unbalanced. I eat less than before. Often I feel turned off by the sight of food, even what I use to like. I have gained a real appetite for sweets, of course, this is something my doctors want. The dietician instructed me to eat candy, cakes, milkshakes, etc. They want me to keep my weight up. I am not happy about that. Back in 2015 I had worked hard to lose weight, getting down to 165 pounds through proper diet and not eating a lot of sugar, plus a lot of exercise.  Now I am up to just over 180 pounds because of eating sugar and the fact I can no longer walk distances or exercise.)
• Decreased attention to hygiene such as toileting, bathing, grooming, or changing clothes on a regular basis. [Basically this is not the case. I try to look after myself in such ways, but it has become much harder to do. Putting socks on is a major operation, even getting pants on takes an effort.  I can't clip my fingernails well because I lack the strength in my fingers to use the clipper and I can't really reach my toenails. I trim them as best I can. I always enjoyed a nice bath, but no more because now I can't get myself out of the tub. I shower, but it is a risky business.]
• Loss of judgment with regard to making decisions or making a decision that reflects a strong departure from views the person expressed in the past. [I find it more difficult to make decisions. I use to be very organized in my thoughts, but now I tend more toward confusion.]
• Inability to concentrate or to shift focus from one activity to another. [This has not become major, but is certainly beginning to occur.
• Feels like there is a disconnect between having the thought to move and being able to move the intended body part. [This is a real problem. Something very strange when you lie there wanting to roll over and not being able to do it without a great deal of mental convincing.]
• Writes or says words in the wrong order or without respect to grammar.  Thinks of the word he/she wants to use but cannot get it out in conversation.  Loss of spelling or loss of word meaning. [These three sort of go together. I just can't get things from my brain to my tongue. I do get words in the wrong order, not the best thing for a writer. And I was never a great speller, but I am getting much worse, even misspelling simple words these days. Same with word meaning. I use to have a fair vocabulary, but not now.]
• Difficulty remembering what he/she intends to do. [This is a real nuisance.]

I think I generally look okay and I have a habit of always saying I'm fine, but truth is my life has become more complicated and difficult over the last several months. Little things put me off and chores and fixes I use to be able to do have become real challenges or impossible. For instance, this week something has gone wrong with the mower. Now I already had to give up mowing because of strength and fatigue problems, so my daughter has been doing it. But the mower hesitated and stalled and stopped on her the other day. I am finding it difficult to find such things as air filter and spark plug. I was out, but the store didn't have the ones I needed. I am not sure once I locate the needed parts that I will have the energy, strength and concentration to fix it. Have to do what you have to do.

The other hitch is my wife has bipolar disorder and I have long been her caretaker. Her condition has worsened over the last few years while I have become less dependable as a caretaker. Frankly, I need a caretaker. My wife's disorder has kept people out of our house for years, so we never developed friends. She is unable to sleep, something common to her disorder, but it makes her groggy and tired all the time. She also suffers social anxiety. But I don't want to get into the twists of Bipolar now.

Anyway, I am still around doing the best I can. I will admit that I am lonely.

Huffing and Puffing Through Another Month

I don't let things lie. I looked it up. The description I read said, "ALS: an incurable, untreatable, progressive, ultimately fatal disorder".

'Tis like a line of poetry.

What is this poet supposed to do with that?

Doctors told me on December 1, 2016. Merry Christmas !

Knew it months before they told me. Oh, no, not what it was, not by name, but knew it wasn't good. I knew it on a beautiful May morning when such things should be unthinkable. Sun was up to my left. The air was already warm  though it wasn't much after 6:00 AM. I was taking my daily walk.

Every morning, nearly 365 days a day I took that walk. I think I missed only 6 mornings summer to summer 2015 to 2016.  At least five miles when I went and often more.

My favorite park was the Brandywine Creek State Park. This morning I was in Rockwood Museum Park. It would ever more become my home base. I'll probably never walk Brandywine Creek again. I don't even know how long I'll manage Rockwood.

Coming down a hill, not steep, there started a strange feeling in both thighs. I had never felt anything like that before. I can't even describe it. This was part of the problem, I never could describe it to anyone. Closest I can come is this:

I use to play guitar. Don't see me doing that again.  My hands are pretty wasted, not delicate instruments any more. Anyway, this feeling was like the low E string, the big fat one on the bottom, came loose. When plucked there is nothing but a dull thud, no note. That was my legs, not in the sense of sound, but a feeling like a dull thud, over and over.

It was in my forearms, too, but I didn't notice yet. Wasn't thinking about my arms, just my legs. Here I stood in the middle of a path unsure if I could walk.

I had to.

 I took a few steps with this strange gait, my toes pointing out, especially on the left. I moved in mincing steps.

I thought it would go away, whatever it was. First my belief was it could be walked off, you know, push through the pain. Except there was no pain. My legs did not hurt, they just felt like they weren't connected. I decided to make it to my car and go home. Maybe with some rest it would go away.

It didn't.

It took six months for doctors to figure out what it was; six months of many specialists, many tests, of  much money spent, and nobody had a clue.

I had a runny nose and cough. Oh, yeah, doctor could take care of a runny nose and cough. Whipped off a prescription for an antibiotic. Bad move.

 I got clostridium difficile colitis or C. Diff. It was terrible. You never want to have C. Diff. I nearly died right then and there. They told me I was septic. Septic means full of infection. Might mean full of death. There is another definition of septic, as in septic tank. I was that, too. How can I put this delicately? I can't. I was a septic tank full and overflowing.

No, you never want C. Diff.

But I  had four bouts  and two stays in the hospital. I also drank a lot of down tasting medicine, expensive medicine that none of my insurances covered.

After my C. Diff. was over; summer was waning. I was now sent from pillar to post, like a pinball, bounced from doctor to doctor for explorations and hopefully an explanation. There were no explanations.


Finally, on the 1st of December, six months after the strangeness began,  a diagnosis came. I had ALS and it was incurable, untreatable, progressive and fatal.

INCURABLE

Nothing I can do about that, so forget it. No one can cure something when they can't even figure out why someone has it. We'll just move on then. Maybe all that money collected from people dumping ice water over their heads will lead to a cure.

UNTREATABLE

Oh, good one. Most illnesses that come along have some form of treatment. An icky tasting medicine. A neetle in the arm. A voodoo dance. Blood letting, at the very least. Not this thing. In some ways this is a blessing. I'm not being prodded or poked or stuck with any sharp objects. I'm not running for tests every third day. I'm not living between doctor appointments. I'm kind of free to live what living is left me.  The only sensible approach is to keep on doing the things you like to do...as long as you can.

PROGRESSIVE

That is where I live now, in the progression. Progression is the part where you do as long as you can do. Progression is where you better be adjustable.

So, where am I this one-year-plus since the E string went flat?

My legs and arms have gotten weaker. I still do a morning walk with the support of my trusty walking stick. I walk short, really short, distances without any aid, but if I start wandering off far without that stick I am in trouble. I will get off-kilter and look drunk. I might fall. I do not want to fall.

If I fall I may not rise to my feet because my arms have gotten too weak to push me up. I can pull myself up if there is something to grasp. I can't carry anything of much weight.

I also drop a lot of things because of my hands atrophying along with the arthritis. When I sit or get in bed I do not lower myself gently. At some point I just drop, kerplunk. Getting into bed, or out of a bathtub for that matter, is pretty funny to behold. Sadly, I may even be beyond able to take a bath. Showers are scary due to weakness of leg and unsure balance.

Fasciculations can be fascinating. These are muscle twitches. I was looking at my thigh last night and there was a lot of jitterbugging going on under the skin.

I am getting many more muscle cramps now. They hurt. I get them everywhere and anywhere, I had them in my fingers earlier as I tried to type this piece. Had to stop for a while.

Been lucky so far. I can still talk. I can still swallow. I can still breathe, but I get winded quicker. I have a respirator I use at night while asleep. It is supposed to help strength my diaphragm. Most people with ALS die of respiratory failure.

DEATH

Which brings us to that term, "Ultimately death". You can say that about us all, can't you? They say the average life expectancy is 2 to 5 years after diagnosis. I don't think about death. I believe in Jesus as Savior; I know where I am going. I don't fear that ultimate. I'm still shooting for 100.

You know, I have a double whammy. I've been my wife's caretaker for years. She has Type II Bipolar Disorder. Sometimes I wonder which is worse, her disorder or mine. I say her's. It is a horrible thing that affects her mind. I just have a deteriorating body. My brain, my eyes, my sexual equipment, my inner organs all are unaffected. I am cognizant of what is going on with me. I would not want the horrors of Bipolar on top of this.

Anyway, here we are. Much lies ahead. Pray for us.

Moving Along: Glad to Be Period

My gosh, the months go by so fast. So far I've stayed on my feet. I can't always feel my feet and I sure can't clip my toenails without a great deal of trembling and fear, but I'm still walking. My friend, Ronald Tipton, called me today with a Blog about an ALS sufferer who is hiking the 600 mils of the Appalachian Trail. His name is Rick Marks  and I'm really wondering how he is managing this feat. (He is the man on the right in the photo.)

Walking that trail can be a challenge for a young and health guy, let alone a 55 year-old with Lou Gehrig Disease. I know I couldn't do it. This guy was diagnosis about 2 months before I was last year. He's lost his speech and his neck muscles won't hold his head up anymore, but his legs must be super-legs.

I've been a walker most of my life and I still go out at dawn every morning and take a hike, although a lot less far than had been my habit and on much less difficult terrain. I walk between 2 and 3 miles now and I know it is time to head for my car. I'm not panting yet, but I can feel my legs getting ready to give up. Admittedly, I am over 20 years older than Mr. Marks, but still walking was something I was pretty darn used to doing. And as you can see here on the right, I am only using one walking stick to keep me from toppling over.

Now, I don't have any ambitions to walk up or down the Appalachian Trail. I had far less demanding dreams. I simply wanted to walk the Northern Delaware Greenway from one end to the other. I have walked each phase of it, but never in one continuous hike. I still old out home, but not on my lonesome. I would like help along the way, some kind of companionship just to keep me safe, especially when we hit some of the gorilla trails in the Brandywine Creek State Park. My biggest obstacle is the same as when I was healthy. How do I walk the blasted thing and then get back? If I park my car at one end, what do I do at the other? I don't really want to hike back again.

I don't have the problems Mr. Marks has. I can speak pretty much as always and my neck is strong enough my head doesn't roll forward forcing me to wear a brace; not yet anyway. My progression is in my arms and legs. I am loosing strength in my limbs. It is limiting, but not totally debilitating. I just need more help to accomplish physical endeavors, and this includes gets caps off new bottles of water or juice. It is hard to convey the deterioration of my muscle structure month to month. It tends to be fairly subtle. My legs, though, which use to be pretty solid from all my years of walking are showing dips and odd ridges now. My shins are looking more boney, somewhat discolored and my calfs are getting down right ugly.

I fell in the bushes along side the house a couple weeks ago while trying to pick up some clipped off branches. That side yard s tricky because it is almost all embankment and I have a definite balance problem these days, but it wasn't my balance that did me in. My legs just gave out. If I'm walking now I can feel when the legs are about to say no mas! So again I wonder, how would I attempt a walk of any distance? Man, how does he do it?

My weight has held steady the last couple months. I weighted myself today and the needle danced

between 180 and 181 pounds. It is heavier than I want to be, but I weighted 180 pounds when I graduated high school, and a lot of people would love to maintain their teenage poundage. At 6 foot I am not considered over weight and frankly don't look particularly fat when dressed. If I am not happy about my Buhdda Belly, my doctors are. They want me to keep my weight up and urge me to eat cake and candy and milk shakes. I feel a bit like those kids Hansel and Greta being fattened up by the witch.


Actually, my back has smoothed out and looks slimmer than it did just a couple months ago. I appear to slimmed about the hips and the wrinkles that had sprouted along my buttocks have gone away, at least for now. Those heavy cords that had grown up over my kidneys (photo left) have also dissipated. I don't know if this is good news or not. Maybe by the end of September much of my back flesh will have fallen away and I'll look skeletal.

My breathing is a bit more strained, I suppose. In a lot of pictures I have my mouth open and my tongue peeking out. It is humiliating. I really should use my respirator more at night, but I don't because the sound keeps my wife awake.



I am still shy about asking for help, but have been getting it anyway. Some people just insist of being helpful people and I am grateful for their help. I really must get over not asking. At last clinic the doctors felt I was doing well and probably will beat those 2 to 5 year life expectancy odds. I don't think about that. I believe you just continue to live your life doing what you like and trust in The Lord for the rest.

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.

• 
  

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.

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.