Humbling

On the first Sunday of December...I know that sounds like a Christmas Carol starting, but it isn't, unless you're the Grinch. I went to church, Iron Faith Fellowship, and parked in a usual spot, up at the far back of the lot near the entry-exit ramp. We have a parking lot greeter named Paul and when he saw where I parked  he asked why.

"Why don't I park closer to the door. There are handicap spaces right here."

I explained I parked where I did because there might be others more needful of those spaces than I. After all, I can still walk with my walking stick.

Anyway, I always back into the parking space, which has a slight slope downward. When I got out I saw a little stream of water flow down in front, like you see on hot summer days after running the AC. Only this was not a hot summer day and I had the heater on. It bothered me, but the car had been wet from an overnight shower so I considered it run off.

After church I drove to the Philly Pretzel Factory where I always buy my Sunday pretzels. As I pulled

away from a light I saw a puddle where my car had idle and then on the way home my overheat light lit red.

I made it home, a short distance fortunately, for I had lost all my coolant. I wondered if my wife's recent accident (she hit a building) had damaged the circultory system or if the water pump or raditor had gone kaput. If this was serious I didn't know what to do. We had no money for a major repair and certainly not enough to buy a new vehicle. This is because like my radiator was drained, so had been my bank account from all the medical bills over the last two years.

It was a troubling situation if the car was out of commission. You need a vehicle where we live.

But I know God will meet your needs. And people came quickly to my aid. One of the church members, Bill. came over the next evening and to look at the car. Turnd out the lower radiator hose was completely disconnected. It was not a major repair. The hose had to be worked back on the radiator outlet and then the pinch clamp moved up over both to hold it in place.

Another church member, Sharon, showed up with a meal of baked ziti. Some of the women had started bring meals to us while my wife was laid up after having her knee replaced last week. Sharon said she was a mechanic and went out to help Bill. Putting the hose and clamp back on was more difficult than it sounds.

Here is the humbling part. Just a few years ago I could have done this all myself. Now because of the ALS I can't kneel down to look under the car. I would have a difficult time getting up again.  Even if I could do that, even if I could have seen below that the hose was off, I couldn't fix it anymore like once I could. Bill had to jack the front end up a bit in order to wiggle under and put on the hose and then use a pair of pliers to work back the clamp. My hands no longer have the strength to pinch the clamp open, let alone work it over the hose and outlet. Like many other things I once could do, I have to let someone else do now.

With my wife now temporaily  incapacitated due to a knee replacement, I have to do much more. I am grateful those ladies brought us meals this last week because, though I can cook, it has become very difficult to do so. Cooking a simple meal leaves we exhausted and the weakness now of my hands, the Doctors said, these were my weakest muscles, I can barely cut things, plus I constantly drop objects or make spills.

It is okay to be humbled. There are a lot of pople who should experience some humple pie, especially among politicians.  It is just frustrating.

This past Monday, my wife experienced a sudden and strange allegic reaction. Her lips expanded

until they looked like one of those plasic surgery gone wrong promos. We kidded her that big lips were in fashion, but she didn't find that so funny. Her entire face was actual swollen and later she developed hives.Fortunately, the Physical Therapists came that day and called the doctor. It was a somewhat dangerous situation. If she started having breathing difficulties it would have been a call to 911 and into the hospital.

We saw the Doctor early that afternoon. He couldn't identify the reason, but suspected it might be her high pressure medication. He

prescribed Presidone, a new High Blood Pressure midication to replace her old one and a couple other things. He wanted her to begin taking these medications right away.

I am happy to say this worked and after a week her face was back to normal and the hives were gone.


I have to admit I've noticed more progression with this disease I have. I'm having just a grand old time trying to do things with my hands. I have had to cut back on my morning walks. I still try to get out every sunrise, but my distance has shrunk. I can feel my legs pleading for mercy much sooner.  Fatigue sneaks over me sooner these days as well. I get the mid-day droops for certain. It isn't a sleepy tireless, just an overall lethargic feeling. For instance, my mind wants me to turn over and my body says, Make me, and won't move.

Speaking of fatigue, just keying this post wore me out, as ridiculous as that sounds.

Since my wife's knee operation I've had to do more despite the fatigue or the weaknesses. I've had to cook more often and I find cooking totally wipes me out. This is all, as I titled this, humbling and frustrating.  Yes, it is all humbling, but also embracing to see the many blessing I have received from God through other people. It's a wonderful life after all.

By the way, it was December 1, 2016 when the doctors told me I had ALS. The first serious signs had appeared a half year earlier. I think one oddity is I don't think I look as seriously ill as I am, at least not yet. But I do depend on that walking stick even if I still look pretty strong.

Hope is Gone?

She's been there as long as I have, perhaps longer. In the beginning we would nod it passing and then we would say hello. Finally we became friends. We come upon each other and talk while about the things in our lives. We often spoke of Jesus.

In the picture I am actually pointing to the spot where I first notice something was wrong with my limbs, subsequently identified as ALS. But look just to the left of the path at the large, flat rock. I call that "The Praying Rock".  You see, every morning, year 'round, she would hike up that path to sit on that rock and pray. She was always there at sunrise, facing into the rising light.

I use to call her 'The Cane Lady", because for the first few years I saw her she was carrying a cane. Now it is I with a cane and she doesn't use one anymore. Eventually, I discovered her name, Hope.

Hope has been missing from the rock and from the park going on three weeks now. I am concerned. She was always there, rain or shine, every morning. She lives in Wilmington in a not so great a neighborhood. She told me there was often gunfire in the night. The last time I spoke to her she said she was going to come to my Bible Study; she wanted to hear what I said about Jesus. Now Hope is gone.


I still have the spiritual hope, even though this summer has not been kind to me. The last two months have brought further progression. My walking is a battle between me and my weakening legs, but I keep on stepping out every morning at dawn. It is a three-legged effort these days, with my fine walking stick keeping me more or less upright.

Nothing getting prettier these days at all. My legs are a wasteland of what they once were,  There isn't much real muscle tone left. It is difficult to get up. The legs tend not to support when I am rising up. I have several times now got up on my feet only to fill right back down. Fortunately, when this has happened I have fallen back onto a sofa or overstuffed chair.

A couple weeks ago I took what might be my last tub bath, I enjoy bathing, but it has become exceedingly difficult to get my body out of the trough. I must hook a leg over the top, then try to push myself up with the other leg and my arms until my rump slides onto the tub rim. Usually once to this position I can stand by grabbing the sink and pulling. This time I struggled and struggled to get myself seated on the edge, but as soon as I managed it I simply slid backward back into the water.

My feet look terrible. They feel  disconnected to the rest of me and I can't really reach them anymore. Putting on socks is something of a magic trick and clipping my nails an impossibility.

When upright upon my feet my balance gets tricky. It is as though my feet are on platforms sloping backward, which causes me to often stagger along in the wrong direction and also making an effort not to tumble over.

At the end of May 2016, when I had my first sigh of something being wrong it was n odd feeling in my thighs. Over the last few weeks that feeling has come to dominate my arms. I still don't know how to describe it. First of all, it feels like my major bones aren't connect; that is, like my wrist bones and hands are floating on their own as well as my forearms seeming disconnected from my elbows and my upper arms not fastened into the shoulders as they should be. There is also this...what...current tingling through my flesh. That is what I can't describe, but it feels like something between a tingling and a numbness.

I notice my weakness more. Today I bought a package of toilet paper at the stone had had a very difficult time lifting it from the cart onto the cashier's counter, then afterward, putting it in my car truck. Finally, I couldn't quite lift into the house. I had to kick it over the threshold.

I arms have grown thinner.

I am not complaining. It could be worse. It is just so strange and to a degree, frustrating. I do not feel sick. This is part of the curse, because I feel as if I should be able to do everything I did before, but I can't. I can't walk all that far. I struggle to pick up what a child can often lift with ease. I drop a lot of things. I make messes. And I get tired.

Oh do I ever get tired. Any effort tends to wear me out, and I mean to the point of exhaustion. Fatigue is a constant companion with ALS. Here are suggestions from the ALS Association for handling fatigue:

• Balancing rest and activity. Save your energy for things you enjoy doing.
  
• If someone is available to assist you with mundane tasks like cleaning,
  accept the help.
  
• Do not try to push through the fatigue – it will not make it easier the next
  time.
  
• Use Assistive Devices such as tub chairs, back scrubbers, thick-handled
  eating utensils, etc. An Occupational Therapist can determine what
  assistive devices would be best for you.
  
• Get a handicapped parking sticker. Your local department of motor
  vehicles and/or the ALS Chapter Social Worker has the form for this.
  
• Try to establish a regular sleeping pattern.
  
• Avoid stressful situations as much as possible. Stress is fatiguing. Find
  pleasant, relaxing activities that work for you and do them.
  
• Organize/prioritize/plan ahead.
  
• Use common sense. If you have trouble walking, don’t resist getting a
  motorized wheelchair. If you have difficulty speaking and are having company in the evening, save your voice for when you want to be able to speak as well as possible.

  
  

   That seventh item, avoid stressful situations, is a pip. How do I do that. These last couple months have been really stressful. I've been suffering from sinusitis. Last month my wife had a bad traffic accident that put the car in the collision center for two weeks. She was physically okay, but emotionally not so great. The car was also due for inspection. I took it in just a few days after we got it back and praise God it passed. But I worried about that. She is scheduled for knee surgery next month. And do to more doctors and the accident money has poured out.

Along with the fatigue is the breathing issue. I sleep each night with a respirator over my mouth and nose. This is supposed to help reduce the fatigue. My breathing has grown less string. I get out of breath much more easily.

My lifelong Friend, Ronald Tipton, set up a GoFundMe account in my name. I thank him for caring.

Also  with much gratitude, I thank those people who donated to it. What was received help us through the last two months, but the accident and other unexpected expenses quickly dissipated what was received. But I trust God to provide what must be provided. 

Thank you all.

Now just typing out this post has brought on a good bit of fatigue. I will close and see what next month brings.

And I do pray it brings Hope back.

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.

Beyond the Clinic

I wrote yesterday about my visit to the ALS Clinic at Thomas Jefferson Hospital in Philadelphia. It wasn't a very pleasant day last Friday, thunderstorm early and rain off and on throughout the day. In the way the perfect weather to sit in an examination room for three and a half hours being interrogated, poked and prodded.

But the clinic is a medical thing and happens only every three months. Given what I have it is about the best the medical profession can give me.

Yet most of my life is in a world beyond the clinic, what of that?

The photograph on the left is the world beyond the clinic. I snapped it through the window of the exam room. It is Walnut Street between 8th and 9th. It was a dreary day, as you can probably tell, so I got a lot of reflection from the glass in my photo. That is the world beyond the clinic, so lets reflect on my life in it now.

I have what is described as "an untreatable, incurable, progressive, ultimately fatal disease". That sounds quite scary, like a blurb for a horror movie. Yet, having a fatal disease is rather liberating. What do I have left to fear?  The untreatable and incurable parts are a blessing in a way. There is nothing the doctors can do for me, so I am spared the intrusive tests and never-ending visits to ology specials of all stripes. I am beyond the medical worlds lineup of tortures.

A Facebook Friend died the past Sunday. I forget when we began communicating, but it has been years

and ever since I first was introduced to her she has suffered from cancer. She was regularly and often traveling from her Elverson, Pennsylvania home to her own clinic in Lancaster County"s Dutch Country. Believe me, she went far more often that every three months. Here she would receive her chemo treatment, if her blood test showed she was able to take it that day.

That is Margo on the right and the image is typical of almost all she posted. The smile was constantly there. She had no cure, but she was treatable and thus she endured a lot of inconvenience and pain. Her words were ever upbeat or encouraging and she share many things she found humorous or the joys she had in her family.

I've been spared that kind of inconvenience because my thing is not only incurable, it is untreatable. I hope I can show a smile to the world and be an encouragement that life is worth the effort of living it as she was.

That is not to say my life is without inconveniences and complications. On the left is part of the clinic summary.

Besides suggested equipment, there is the advice about looking for help on preparing meals. At the clinic they have been urging I seek more and more help with doing things like chores.

I have been a total failure at this advice. I struggle all the time with the idea of asking anyone for help.  I have asked occasionally, but it is hard for me to do. I know I will get weaker and my body will fail me eventually, but I have no idea what I will do when such a thing happens.

It has already become embarrassing. I tried cutting out backyard a couple days ago because it is turning into a jungle, but I only managed one-half before I was too tired to continue. The Coke Carton pictured on the right was something I couldn't lift out of the cart to put on

the checkout belt.

Even on my morning walks the fatigue is setting in earlier. I do have to walk with my stick most of the time to keep myself upright. I can manage for short distances and don't use any aid about the house, but outside even the shorter jaunts are calling for my cane.

It is growing more difficult caring for myself. Putting on pants is a chore and socks are a real challenge. It is almost impossible for me to cut my nails. I can't reach my toes and as strange as it may sound, I don't always have the strength to close the clippers over a fingernail.

I have procrastinated on doing a Living Will and Power of Attorney because I hate the thought of burdening anyone with those chores.

My fears are these. Not dying, of course, I know where I am going. I fear ever being sent into one of those Nursing homes and I fear being helplessly alone.

Stephen Hawking was asked what was the worse for him in his condition. He answered, "The loneliness. People don't know how to talk to me." To be honest, I can feel a loneliness creeping in upon me. I seem to be slipping farther away from other people and with it all comes the feeling I am of less use anymore.

At least I can still type and talk, although as strange as it may sound, even these are fatiguing.

Clinic

It may seem longer since I last reported on my slippery slope called ALS. That is because usually I try to update my condition right around the beginning of each month; however, this month I had my 3-month clinic on the 14th, mid-month, so I waited to treat you to that. The picture on the left is what I stared at three and a half hours yesterday. So, no that is not me leaning against the wall. I haven't deteriorated that far yet, so if you are thinking of missing photos of my flesh, they are coming.


Friday was not a nice day, Thunderstorms early and late. I was fortunate not to have any rain
during my drive. It is hairy enough driving into Philadelphia from my place here in Delaware. My appointment was for 10:00 AM thus I missed the heavier rush hour madness going up I-95. But I didn't completely miss any drama.

Last times I traveled into the mouth of the city beast my directions took me off the interstate onto Callowhill Avenue where streets converged in a terrifying mishmash. I was almost hit a couple times in the merging last time (by jersey drivers, of course). But this time Google Maps gave me a simpler route, off of I-95 at exit 20, left onto Christopher Columbus Boulevard toward Penn's Landing, then left on Spruce to 9th Street, make a right and a couple of blocks north, bingo! Except...


Except I turned on an unmarked street that wasn't Spruce, which then deposited me back on I-95 and to make a long story short, I found myself lost in Center City and a lemming like migration of traffic.

Anyway, despite ricocheting around city hall, I made it to Clinic on time.

Clinic is like being captive to a parade. My doctor actually came out to greet me and chat while I was in the big waiting room. Doctor Goran Rakecivik (pictured left) is a caring, nice man from Eastern Europe. He is ranked among the top three neurologists in Philadelphia. I feel I'm in good hands. He took me to the registration, something you have to do every time even though the Hospital oughta have all my info in their computers

He then turned my over to a young nurse (I guess) who escorted me to my home for the day. There she
took my vitals (Blood pressure 134/78). Nobody is going to bother much and go to a lot of trouble if you're all ready dead. She also weighed me, 182 pounds. I dropped a little since last time despite my newly acquired Buddha Belly. I hate this thing. I had worked so hard to get rid of any excess fat and now my stomach casts a shadow over everything. (Okay, Martha, let's run because here comes the smut...with the naughty bits blurred out, of course.) This picture illustrates how my spare tire has inflated, but it also shows how ugly my limbs are becoming, bumpy, pitted and discolored.

She nurse now left me, so drumroll please, let the parade begin.

Let me explain the procedure. Over several hours I stay in this little room and various doctors, nurses and therapists come to me. They spend time questioning me and sometimes doing little tests. When one group (there are usually two at a time in the group, but sometimes three and on a couple occasion just a single visitor.

The first came as a trio, two Physical Therapists (both male) and one female named Gabs or Gabby. She was my Occupational Therapist.

As soon as the door was thrown open, one commented to the others
on my knees, how they had shrunk. Hard to see the ravages in these photos. The left leg shows the now deepening rut below my kneecap. You can see somewhat the indents where muscle has been lost in the picture on the right, mainly most obvious in my right thigh.
Also, a disturbing aspect is my psoriasis is becoming more prominent lately.

The Physical Therapists spend a good bit of time with me this time. They asked a lot of questions about how I am doing at home. How am I on using the stair? Can I get into and out of bed okay? Actually getting out has not been as much a problem as getting in. I can sit on the edge and pretty much push myself to a standing position. The difficulty is getting a good balance once up. I tend to wobble and stagger like a slightly inebriated sailor on a rough rolling ship. Somehow I do manage to stay upright and make it to the bathroom door where the doorknob holds my hand and steadies me. It is getting down to sleep at night that really jars me. I have trouble lowering me body these days. I usually end up tumbling somewhat forward so my head lands on the bed back and then I fall with a thud to a seated position. This is annoying, but routine now.

They then do some moving of my limbs about or asking me to push against their pressure. I have either grown much weaker (I have) or they got stronger. If this was arm wrestling,  I'd lose quickly each time. They watched me amble down the hallway and back to see my wobble. Finally one took out one of those little reflex hammers and beat me here and about.

The Occupational Therapist gave me a sticky thing to help with my grip. It feels yucky to hold, but it does seem to work. I was able to pull the inner seal off a new can of coffee this morning using it. She was also showing me pictures of raised toilet seats with handle bars. It was suggested, since I have a walker, that I get a tray that fits upon it so I can transport my cereal bowl from kitchen to living room without splashing the milk everywhere. I do make a lot of messes these days.

This is because my arms and hands are really going to skin and bone. My arm looks like the skinny head and neck of an ostrich. Yessir, my arms are caving in here and there.

The other day I glanced at my arm and I could see these thick vessels running up along the one side. My arm looked like those bodybuilder arms after they have been pumping iron where the veins stick out so plainly.

But I realized this wasn't any muscle power; these veins were popping out because they had no where to hide in my disappearing flesh.

It is an anatomy lesson to watch my hands. The bones are so visible you can see all the mechanics of

the parts working. Even the palms are starting to show the bones within now, especially on my left hand. Look to the center of the palm and you can see my finger bones. The hands are becoming rather deformed, which is part of the reason I keep making messes. Also they are growing so weak I must ask others to open bottles for me.

My breathing scores were Forced Vital Erect 52%. My supine or NIF is now -20. It was-30 something three months ago. This means my muscles of the diaphragm have weakened. The Respiratory Therapist wanted me using my respirator more to strength those muscles. I tend not to use it because I feel its sound disturbs my wife's sleep.

I get fatigued quicker. Any activity can wear me out, which includes writing this post. I have more saliva, but still no major drooling, and thank God I can still talk.

Not all is disappearing of me. I already mentioned the growing Buddha Belly, but I am getting a couple rows of fat on my back above the kidneys and my bottom is growing all wrinkled. I am turning into a spindly limbed barrel of a body. But my Dietician  still wants me to put on the fat in place of missing muscle. Her parting words on Friday were to go get a milk shake.

Which I did.

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.

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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.