Chasing My Pants and Other Tricks of the ALS Imp

I have become convinced there is an ALS imp. This creature just delights in playing tricks upon you as your disorder progresses. He thinks it is hilarious fun. For instance, he seems to derive great belly laughs by knocking things out of your grasp, such as my keys. I have no idea how many times I have to bend over and pick up my keys, but it pretty much every time I pull them out and try to line a key up with the slot in the lock.

Spang!

Just as I maneuver the shaft into the proper position and have it on the tip of the keyhole...

Sprang, my ring of openers is splayed across whatever surface my feet stand upon and the object key is now entangled in the midst of the others and I must bend, pick up and sort out again.

A number of silly little tricks are pulled anytime I attempt to dress. Take my pants.  No, wait, don't. I have enough of a battle because the Imp is always taking, or at least tugging at my pants and I must chase them down to put them on.

A number of years ago in my spryer year, I became annoyed with hearing the expression, "He's just a

man; he puts his pants on one leg at a time." I decided I didn't want that said of me, so when I got dressed I would place my pants of the day on the floor before me as I sat upon my bed. I would place each foot in the pants by the proper leg, then voila, I would grasp the waist band of the pants, stand up and pull over both legs at once. I was a man who put his pants on both legs at a time.

Now with the ALS Imp around I have trouble getting any leg on. Since it is difficult for me to reach my toes anymore, whether sitting or standing, and sitting is safer because standing I tend to fall over, I must make an attempt to lasso my one foot with one of the leg holes.

Once I have accomplished this, and it is never particularly easy, I must hook my other foot in the other leg. These maneuvers can result in my flinging my pants from my feet and my reach.

If I have managed to rope my feet with my pants on both right and left, then it would seem it is an easy matter to tub them in place up around my waist. However, often in practice as I tug upward I discover that somehow both feet, and consequently, both legs are in the same hole.

This results in my wearing (in the case of shorts) a small dress with an odd flap on one side or the other. I must then pull the one errant leg out of the material and begin again. Even getting the legit is not so quick or graceful as one would hope.

Now shoes and sock, that is another place for the Impractical Joker Imp to get his jollies. If I can't

reach my feet and must loop my pants over my toes like a lariat trick in a rodeo, what chance have I with socks?

This takes some special contortions. I must rest a foot against the inner side of my one calf and then reach with as much stretch as possible to hook my toes. Of course, one of the delights of ALS is cramping. Any over exerted stretch of an extremity may result it agonizing pain down said extremity and sent out imp rolling in laughter.

I begin my day struggling with those socks. If I get the right aboard I can then repeat for the left.

Shoes are sort of similar, which is why I have started wearing sandals for all occasions. These slide on, although it again takes a stretch to pull the back strap up over the heel. Shirts are not so much a problem. But I do have a video taken by my friend Ronald that runs 15 minutes showing my struggle to put on a light spring jacket.

Anyway, I do not look forward to the passing of summer, because cold weather brings more clothes I must struggle into. In this warm weather I stay in basic things more easily put on and taken off. I almost always wear sandals, ankle socks, shorts and T-shirt. In cold weather there will be more, including zippers that resist my grasp to fasten the clasp and pull up. I have chosen to wear workout pants during the chill seasons demanding long pant. They just slide up and over everything with no real fasteners.

There are other obstacles as this disorder progresses, and it is progressing. Last Sunday at the end of my Bible Study I collapsed from fatigue. It took two men to house me up and out to a car to get me home. This is not a happening I wish to repeat. I would not want to collapse in such a fashion on my walks, but I stubbornly don't want to curtail my walks either.

It truth, I have grown weaker and more unsteady. I still walk with a sick, but am much more wobbly, like a drunk strolling from his drinking well, I fear.

I become frustrated with my inability to perform chores anymore, and continue to insist on trying. I mean, someone has to do these things? Last week I decided since the grass has reached new heights due to all the rain, that it had to go and I tried. I managed half the front. My wife and daughter fished the rest between them over a couple more days.

It was the mowing where the Imp pulled it

stunts. It was when I emptied the bag of trimmings. I dump these in a compost please hidden in our border weeds, but this time the Imp pushed me over because there is a hole and the ground was still wet. I disappeared from sight into the bushes, on my back like a stranded turtle. Where I landed is pictured on the right. I am far to week anymore to push myself up; I am certainly past doing quick nip-up. There I lay, a hopeless pile of jello, struggling to reach some sturdy limb in the brush to pull myself up with. Somehow I did finally manage to roll over on my knees and make it upright,

And the imp just stood there laughing.

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.

Cat Falls, Fatigue and Progressions

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

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

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

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

I wondered myself, but thought more about how many broken bones might be sticking through my skin.

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

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

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

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

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

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

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

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

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

I also can't exercise as I was. I had a regular regime, my 5-mile morning walks, my three days at the

Gym and my rowing machine each night. All gone, except my morning walk, but as I said, I am down to a mile or so now.

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

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

My legs are beginning to display the same sink holes under the flesh as my hands, pits where bulging

Muscle should be and once was.

Bit of a mess, ain't I?