How to Make an Invalid

I see I have not posted anything on my progression of my tangled nerves since September 2018. There are changes, such as to my sinking face. Do you think I'm cute? Look at these dimples, except these aren't dimples, they're sink holes.

I mentioned this to my wife not long ago saying my cheeks were sunken. She claimed she couldn't see this, but my friend, Ronald, noticed right away as we connected on FaceTime. Not that this particularly bothers me. I just don't want to see my bottom four teeth pultruding out over my upper lip as Stephen Hawking's teeth did.

The reason I m posting again is that last Friday (May 3, 2019) I was back to the ALS Clinic in Philadelphia. Actually, I hadn't been to clinic for a while. I was originally scheduled way back in February, but I canceled that one because I didn't want to chance driving into Philadelphia in bad weather. I then changed the date again until March, then April, , but the hospital rescheduled me to the May date.

At least I figured I escaped any snow or ice, but it still proved a miserable date for he drive up I-95.

The weather people had claimed all week that Friday would be nice, warm and dry, so I dressed in an outfit of shorts and T-shirt. This proved less than an ideal choice. The morning was in the 50s, gray and drizzly. Fortunately for me that exam room wasn't cold.

If you have forgotten how this clinic works, there are doctors of differing disciplines that parade through over a three hour period to question, prod and test me. All they are doing is measuring me against my prior clinics to see if the ALS has progressed. There is no treatment they can give me, no cure, just my progress report and off-hand advice.

I know the disease has progressed because I know my body. I've lived closely with it for a long time. It will be 78 years in June. I can tell I have weakened, that I grow fatigued quicker and I drop things more, and there is less and less physical chores I can do. But I am still around for them to thump and thud. When I was first told what I had I read that the usual life expency was two years. I've beat that. It has been three years at this point. This is why I resist what the doctors tell me to do because I am not ready to be turned into an invalid quite yet.

So let's look at some of the tests and the advice.

The first doctor to knock on the door and enter was Brittany, the pulmonary person. Brittany is very nice for a person carrying a couple of torture devices in her bag.

You can see her holding one test instrument. In her plastic bag is the other. I am not sure if both are called Spirometers or not.

The one she is holding works thus. You take in a huge breath, then wrap your lips over this thing and blow as hard and long as you can.

The other instrument is similar, except this time you exhale all the air in you, pop it in your mouth and suck as hard as you can. You do each test three times. I don't know what anyone standing outside the door is thinking as she roots you on for each test, shouting, "Blow, blow blow"; then "suck, suck, suck."

Oh the most uncomfortable things about this is the great nose clamp she puts on your nose. Also,
when you blow there is no feeling of resistance. It is a very strange feeling.

On the first test I was the same as last time, but on the second I was below last time, so I think this means I can not suck in as much air as before. She again is pushing I use my Trilogy Ventilator more, and I promise I will try.


Others who came in either asked questions. The Dietician was happy because my weight had stayed consistent at 178 pounds. I wasn't. Three years ago I weighted 160 pounds and had worked very hard to get down to that. I had also build up up muscles back then. Now I can't do anything to build up my muscles, but I can keep my weight up and develop a "Buddha Belly".

Two social workers talked with me. They will follow up and see what kind of help Lois and I can get.  Lois wasn't thrilled with this, but we need some kind of help.

Near the end came the Physical Therapist, Occupational Therapist and I am not certain about the other guy. I didn't see the speech therapist this time around. It is these Therapists I resist. I don't know why the rush to turn me into an invalid, that status could come later.  This trio do a lot of pressing and pushing of my arms, hands, legs and feet.. The one does a bunch of tapping with his little hammer as well. They seem to have not found a lot of change in my strength, yet they want to alter me a lot.

First, they want me to forsake my trusty walking stick and go to a walker. They may want it, practically demand it, but I don't. It is awkward. It is harder to put in the car, since you fold it up and have to find space in the trunk, then pull it from there, open up and hobble on like an elderly man. My walking stick I can just toss in the back seat with ease. When we go to a restaurant I put the walking stick across the bench and sit on it. It is then out of everyone's way. This walker can't be handled like that. It can be folded up, but will sit along the isle in people's way.

It is also more difficult to maneuver steps with it. I am more likely to trip on the walker and fall than anything.

Then they said I should continue my walks, but only on the paved paths. What fun is that?  I am irked enough I had to stop walking in Brandywine Creek State Park because I can't do the hills and trails there; I can't see not walking up along the meadows at Bellevue, and of course I wouldn't be able to do that with a walker.

I failed the push test. In this one of them places their hands on my chest and I am to press against them, then they release and I stumble forward. They do the same with my back. I told him on release I might have ended up out in the hall when he released. Whoops, should not have said that, although it was blatantly obvious. He pointed out if he had did these presses with Gabby (the other therapist) she would have only taken one step in each case and been in balance.

They said the last time I was at clinic I told them  I had fallen three times. I don't think so. Unfortunately, I had told about the two falls I had this year. Now they began talking of putting me in leg braces. I have one leg brace that was foisted upon way back in the beginning and I've never used it. It was called a toe-lift brace, but I am lifting my toes so far, not dragging hem.

The worst of all was when the main guy suggested I take a Senior Supplementary Driving Test. I

managed to get them to wait three months until the next clinic to decide. They asked if I thought I could still drive safely. I said, "I drove here on I-95 at rush hour in a drizzle. I made it. I think I can still drive."  I don't want them to take away my driving. I don't know what we would do then.

Now one of the final things I did Friday was join in ALS research. Every time I go now they will take urine and my blood. As much as I hate needles, I'm willing to do it. I also signed the paperwork to donate my body to the research department. There are things they can only examined on the deceased, such as biopsies of the spinal cord and the brain. If I can help them find the cause or cure, great. I'll be done with my body anyway. Better they have it than it get buried somewhere and my family get stuck with funeral costs.

Now to go on and still try to out live my dad. He died at age 94. I still think I can beat that.

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.

Realities

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

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

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

The answer is , No!

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

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

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

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

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

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

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

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

A temporary respite is now occurring.

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

Back to writing again.

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

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

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

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

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

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

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

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

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

ALS Means an Awkward Living Style

The church I attend is Iron Faith Fellowship. It is a church with a small c within the Body of Christ, which is the Church with a capital C. They gave a Valentine Day Dinner this past Saturday (February 10). I know, I know, Valentine Day isn't until the next Wednesday, but Saturday was more convenient for celebration. Julie, who was overseeing this affair mentioned she wanted it to be really nice, more formal than out usual gatherings. We are a very casual fellowship. I decided to take her up on that and be more dressy than my normal style.

I quickly discovered why dressy is no longer my normal attire. I now wear ALS Convenience

Chic.This being winter and the temperatures being frigid quite often, my regular outfit is pictured on the right. My everyday (nearly every waking moment) attire consists of a pair of workout pants, a T-shirt, a pullover sweater, sox, sandals, some sort of hat (baseball cap or knit hat) and depending on the temperature, a jacket or coat if out. Getting dressed for this dinner showed me why.

ALS makes dressing otherwise somewhat difficult and getting more so.

I wore dress slacks and shirt for the dinner. Ha, major time killer. With these weak hands and fingers buttoning buttons is a test of effort and patience. Fastening the little clasp and the button on the trouser waist was especially trying. Thus I have taken to wearing only pullover shirts and sweaters and sweat pants. Even the sweat pants are awkward to slip into these days. I have trouble getting my feet started down the legs. My toes constantly snag and since I can no longer reach my feet, I get trapped in the cuff area. (I can't really feel my feet either, but that's another story.)

This problem with my reach and feet explains my footwear. Socks are real tease. Since I can no longer reach them easily I can't generally locate my toes to guide the opening onto the foot. Same with shoes, but at least they are stiff and the opening doesn't easily close up; however, sometimes I have to chase a shoe about the floor before landing in the target. Tying laces has become a real chore, and so I went sandals all the time. They slip on and they slip off without much argument.

I decided to go whole hog and put on a tie. I hate ties, but made an exception. My wife was stunned. "Why you putting on a tie?" she asked. "Nobody will be wearing ties." She was pretty much right on that. In fact, the Pastor wore a suit jacket and neither one of us knew who he was. But I insisted I was wearing a tie.

To begin with, it has been so long since I last wore a noose about my neck that I forgot how to tie it. Once I figured this out I was very glad I planned to wear a pullover sweater. My tie was as uneven as could be. The skinning end hung about four inches below the fat end.  I wasn't going to try and retie. It took my too much time out of my life doing it once and the sweater would hide the my sins.

(I look forward to the warmth of late spring through early fall, when I don't have to wear anything but a T-shirt, short shorts and sneakers, which this year my be sandals. And my baseball cap, of course. I have an eye problem with light, especially the bright light of day and I can't see without the cap.)

My wife went to the dinner with me. Doesn't sound like a big deal, especially this being Valentine's, but it was. My wife suffers from Type 2 Bipolar Disorder. She has great difficulty dealing with social

situations, at least getting to them. I really thought she was going to back out at the last minute. Her doing this is fairly common. She has backed out of concerts, trips, shows, church and even small get togethers. The pattern was even there for this. The closer the event gets, the more anxious she becomes. She didn't sleep the night before and I could see her nervousness growing all day. She asked a couple times when we had to be there, which she will do when she doesn't want to go to something.

She looked miserable most of the day and as 5:00 neared (the dinner started at 5:30) she was making no move toward getting ready. Most times if we are going somewhere she is up an hour ahead to dress. Even though she was obviously not looking forward to this, we did go.

And when she does make it to something like this, you would hardly know she had a problem. She talked with the people we were seated with, but this one lady was a cat person so there was something in common. When she does get out around others they seldom see the anxiety and effort that went into getting her there.

I am her caretaker. It is a scary proposition that with my condition she should be my caretaker. I don't think she can be, Bipolar is a terrible disorder. Sometimes I wonder which is actually worse to have, ALS or Bipolar. It had made her life a nightmare. Type 2 tend towards deep depressions and always seeing the negative in life. She is also locked into a ridged way of life. A small chance in her daily schedule can throw her into panic. Choices become very narrow in her mind. As bad as this is, I am grateful she isn't a Type 1. Type 1 is heavy on the manic. Type 1 Bipolar suffers are the ones who act out and get into trouble more often. The Type 2 tend to be overlooked and avoided because they often look so unhappy.

ALS and Bipolar, what a combination!


I cancelled out of my last 3-month Clinic. I didn't feel up to the trip. I changed it to near the end of March, but I don't know what I will do then. I really don't want to drive up and into Philadelphia and I don't have any other way to get there.

My body has deteriorated somewhat. I can not sit down normally, the muscles in my bottom are too weak to support me through a gentle sit. I always have to fall into my seat. It is the same with getting into bed. Showering is now more difficult. I had to give up baths, Since I can't each my feet, clipping my toenails is nearly impossible. Even doing my fingernails is hard. As silly as it may sound, I don't have enough strength in my finders to snap the clippers.

I don't have much stretch for holding things either. I bought a 24 case of Coke cans this week a had to wrestle them into the card and then my car. The main event was carrying them into the house. I could barely life the box and walking with it was a Herculean Chore.  My weakness and inability to do even simple chores is very frustrating.

I dislike my body fat that lack of exercise and the type of diet I have been told to eat has brought upon me.

At the doctors recently my vitals were good and the oxygen level in my blood was perfect, but I know my breathing isn't what it should be and fading. I still take a morning walk, but it keeps getting shorter. Anything I do brings on a lot of fatigue. Even going to that dinner on Saturday wore me out. Lois and I left before the entertainment was over because I was just crashing.

And we walked out into a pea soup fog. I was glad we only lived a mile away.
.

This Odd Affliction

What an odd affliction I bear. I am, of course, considered quite sick. I don't think I look all that ill, but I don't see myself as others do. Perhaps I am vain and blind to its ravages to my flesh. I know there are bumps and ridges and sunk-in places on my hands and up and down my arms and legs that shouldn't be there. I've grown fat, rather than wasted looking. That is a result of two things, I can't exercise as I use to and the doctors want me fat. They insist on my eating high calorie goodies. I expected a more bony body as the disease progressed, a wasted look. How can one be so sick and not be pallid and wasted?

I don't feel sick, the way I always thought of being sick. I am not coughing and throwing up. I have no aching through my skeleton, no headache. This lack of pain and flu-lied misery is certainly a blessing.

But not looking physically sick does not change the matter. I am sick. I do notice there is a progression. If I leave my cane behind now there is a real struggle to walk upright. I must be lacking air, my breathing must be more shallow, because I yawn a lot and I am tired a lot. I even have a reluctance to do what I wish to do because I must move to do it. For instance, I may wish to turn over from my back to my side, yet lay there immobile because I am overwhelmed with the thought of the effort it will take to roll.

As I say, ad odd affliction.

My strength is unreliable. I drop things very easily and things normally light become heavy objects to lift. It is difficult to lift my Bible. It is difficult to left a plate, even an empty one.

And I am very sensitive to the ravages of cold, which is a bad thing since it is now winter. It is actually frightening. I was never bothered by frigid before. I took long walks every morning for years no matter the weather, hot, cold, windy, rainy, snowy, whatever. I took many a hike in temperatures down around zero with winds driving the chill far before that line. These days I feel every low down degree and lash of breeze. The effects of the cold scare me.

I have had this happen now a couple times. The winter has played harsh and my hands have deserted me. By that I mean, I lose my use of them. Last Saturday it was a cold, windy morning. I went to the grocery for some needs we had. I parked in the handicap spot, so I was not far from the store door, just a bit more than a driveway width. I got my foodstuffs and pushed them to the car, placed them in my trunk and then retuned the cart. That is all it took, my hands were gone.

I could not manipulate my key and could not guide it into the ignition. When I eventually managed this maneuver, I couldn't turn the thing. It took both hands and even then was a struggle. It took me a long time to plug in my seat belt. At home I almost couldn't unlock the front door.

My church was having a men's breakfast and I rushed to get there on time. I managed to lock the front door and get my motor turned on, but I had to give up on the seatbelt this time. It is a short distance, a mile, to my church, so I left the belt undone.

I thought once in the warm kitchen, my hands would quickly recover, but not so. I picked up a slice of toast and attempted to put jelly upon it, but the jelly was in the jar and I could not lift the spoon out.

One of the women tending the counter had to spread the jelly for me. I moved on and managed to serve myself the scrambled eggs, but getting the sausages from the pan proved impossible. They had these tongs and I could not close the tongs to lift the links. Again the lady had to place some links upon my plate. Thank you, Karen!

I then attempted o put some ketchup upon this meat. One of my pastors, Pastor Haus, frowned upon that, calling it unAmerican to eat sausage with ketchup, but sorry man, that's the way I like it. Except I couldn't. I could not squeeze the squeeze bottle of ketchup hard enough to squirt the red stuff out. Fortunately, one of the men, Christopher, I think, came to my rescue.

See, I don't look as pathetically weak as I be, but this is an odd affliction.

But you see, people help. Even when you look capable, as I think I look, people understand and help.

God bless them all.

And now I close, because believe it or not, keying this short little piece has completely exhausted me.

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.

Visit of an Old Nuisence During the Week of My Clinic

Every three months I go to the ALS Clinic where a slew of Doctors and medical practicioners come to question and prod me. It is at Jefferson Hospital on Walnut Street. That is in Philadelphia in case you don't know. There is a parking garage a block away on 9th Street that belongs to the Neurology Division.

For some reason, perhaps related to my condition or perhaps related to an accident my wife had witht he car last month, I was very nervous about the drive. I don't know exactly why. I worked in the city for many years and we lived there in the University City area for a while. I have driven the city streets many, many times. In recent times I even delivered my friend Ronald to downtown when he stayed for a week.

I couldn't get a driver so I drove my wife and I there. We had no problems.

The photo was taken of Walnut Street from the examination room I was in while I waited between doctors. I just found it humorous to see a police vehicle that was a Smart Car.

For some reason, about a week before my appointment, an old adversary reappeared. My psoriasis

flared up something fierse. I have had this scourge since I was in junior high school, but in 2012 when I began taking Methodrexate for my arthritis it basically disappeared. They use the same medicine for treating psoriasis. It is also used in chemotherapy of cancer, but it stronger doses.

When I saw flared up, I mean expoded. I haven't had it this bad in 30 years. My whole body was covered and it itched something awful the first couple of days.I'm praying it will fad away soon.It's disgusting. The itching has generally calmed down to tolerable.

I was supposed to have an allergy test. I have been having problems with sinusitis. I generally got some sinus troubles each spring, but then it would clear up by summer. Last year it didn't clear up and was pretty miserable. That was when I was at the doctor's in June and he gave me the antibiotic causing me to have C. Diff and a couple hospital stays. The stuffed up head and runny nose and constant cough returned for an encore this spring and persisted all summer. It also made me very hard of hearing, so I finally went to an ear, nose, throat clinic.

At first they perscribed the same antibiotic that did me in a year ago. I refused to take it, so they gave

me a compound I mix in saline solution and squire up my nose. It goes up one nostril and comes out the other. It did help. I am not hacking or sneezing and my hearing improved. The doctor there also cleaned a lot wax out of my ears. I was given a hearing test and I do have some hearing loss, but frankly, I feel I'm hearing fine now. It was there an alergy test was suggested. However, when I came for it I couldn't take it. I didn't have enough clear skin to administer it upon. Instead I must get a blood test, which I keep forgetting to get.

Hard for me to get up and go these days because of the progression of the ALS. They say I'm doing well, but I have so much fatigue. It is difficult to keep my Blogs up, including this one, because of the fatigue. I am getting very tired already just typing this. Some of this is probably due to my breathing capacity. My FVC is at 48% and my NIF is -17.

FVC stands for forced vital capacity and NIF is negative inspiratory force. They are primary measures of respiratory muscle strength, capacity of air sucked in and then the ability to blow it out again.

Measure forced vital capacity (FVC) and negative inspiratory force (NIF) immediately and every two to six hours thereafter. FVC and NIF are primary parameters to measure respiratory muscle strength, especially in patients without obvious respiratory distress. They have a device for checking these and when i took the tests it sounded very pornagraphic. The Respiratory Doctor, a female, was cheering me on. The first phase is done three times and she stood over me yelling, "Suck, suck, suck." The second phase is also done three times and now she was shouting, "Blow, blow, blow". This time I had dropped in lung intake capacity from 53% to 48%. The NIF at -17 was higher than last time, but that also means my muscles ability to push air out has decreased. I said, "What happens when I reach -1, I die?" I have a sick sense of humor I guess.

Anyway, this decrease ability of my muscles to pull air in and push it out again is probably part of my increasing tireness. With this disease, most patients die from respiratory failure because the muscles, such as the diaphragm, become to weak to make the lungs work. My lungs are actually in very good shape.

The Physical Therapists do a lot of measuring of muscle strength in all parts of the extremities. They also check the walking gait. I'm still walking with just the aid of a walking stick, but the doctors want me to cut the distance I walk each morning by half. That morning walk is a long established routine with me, I really don't want to give that up. I have cut back some on the distance anyway, because my body tells me when I need to head to the car. I will contune to listen to my body.

I am getting more unsteady. My balance has declined. In fact, if I walked on a decline I might fall. (Joke!)

My weakest parts are my hands. It is why I make so many messes. They said I didn't have much less under the skin but bones and tendons. The thing I didn't care to hear and scares me the most is they told me if my hands get much weaker I will not be able to drive.

As far as diet, they were happy I weighed in at 188. To think, a year and half ago I weighted 165. I do not enjoy getting a belly, speaking of which, I did tacitly agree that I'd get the feeding tube after the holidays. I would go up to jefferson overnight and they would sent a edoscope kind of thing down my throat and then punch a hole through my stomach to outside and insert the tube. You get your nourishment with a syringe through the tube. They did say I could still eat what I liked as long as I could swallow without difficulty. So far I don't have any problem swallowing.I am still a bit leary.

I spent a long session with the Pallitive Doctor. That is a polite way of saying Doctor Death. She will oversee my comfort as I gradually fade into the Big Sleep. She is very nice. Her name is Doctor Parks and I found that ironic and humorous. The doctor who delived me into this world was a Doctor Parks and now the one who will escort me out is a Doctor Parks as well.

We discussed the Advanced Directive, or Living Will. I haven't done this yet. It is not easy. You are making life and death decisions for yourself as well as assigning some awesome responsibilities to somebody to make medical decisions for you when you can't. I decided my oldest daughter, Laurel, will be my agent and my next daughter, Noelle, will be her backup. 

I now have to tick off what artificial life supports I don't want. I already changed my mind on the feeding tube. I also told the Doctor I don't was a trechnomy. That is a burdenous thing. She told me most people choose against it.

There are some blocks to mark if you want organs donated. I want to check the one for donating my entire body. I think funerals are a waste of money. I need to find out how I manage to give myself away. What does it matter what they do with the body; I won't be home anyway. 

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.

Huffing and Puffing Through Another Month

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

'Tis like a line of poetry.

What is this poet supposed to do with that?

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

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

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

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

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

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

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

I had to.

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

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

It didn't.

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

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

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

No, you never want C. Diff.

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

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


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

INCURABLE

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

UNTREATABLE

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

PROGRESSIVE

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

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

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

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

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

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

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

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

DEATH

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

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

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