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.

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