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.

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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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.