Fears and Realities

What were your childhood fears? Did you fear the monster under the bed, the Bogeyman in your closet or other things that went bump in the night. My friend, Ronald, feared the Frankenstein Monster.

Ofter the fears had some basis for existing. Perhaps the lose of a parent or parents getting divorsed. Certainly some of us feared the bully at school.

So many things we might choose to spook us and  in many cases our worse fears never came to be.

I certainly had a collection of such things, fear of heights and fear of the dark, but one of the specific fears I had, and almost forgotten about, was something I saw at the Carnival.

Circuses, Fairs and Carnivals were popular diversions back when I was a child. Some were big affairs, like Ringling Brothers, Barnum and Bailey that traveled from city to city on a circuit each year, others were simple town fairs sponsored by the American Legior or Kiwanus Clubs. My nightmares started at a large Carnival, perhaps in Reading or Allentown, Pennsylvania and I was very young. It was either the late 1940s or early 1950s.

Carnivals had their own sideshows and oddity displays. I remember this was a trailer sitting alone

along the midway. My family took me it, going up some wooden steps to enter. In the center of the room was a large cylinder lying on a support and inside this object was a young woman. Only her head stuck out on one end. The rest of her was completely encased. There were glass windows along the side where you could see her body. Over her head was a mirror where she could see herself, or at least her face. She spoke, greeting people passing by her strange prison. This was an iron lung and it breathed for her.

I am not sure why such a contraption was on display at a Carnival. My guess is it was because on the then very prevalent Polio epidemic. The Salk Polio vaccine had not been developed yet. Its discovery came in 1952 and it was announced to the population in 1953.  Prior to that their were many people confined to an Iron Lung, the majority being children. Perhaps this display was to bring Polio to the public attention, although I doubt such attention was needed. It was a dreaded disease, much feared. The President in place when I was born had it, but he wasn't confined to an Iron Lung. His case of Infantile Paralysis. or Polio, put braces on his legs and sat him in a wheelchair, but did not cause him to be unable to breath on his own.

After I went through that carnival exhibit I had nightmares that went on for weeks, months. How horrible to live like that, locked away in a great tin can unable to walk about or anything. This idea of confinement became one of my greatest fears.

This fear never really left my mind. It did expand beyond the Iron Lung, a device you'd be hard pressed to find today. But the idea of paralysis did merge with that earlier sight. People sometimes broke their neck and couldn't move. I met such a fellow in my twenties, almost taking an offer to be his companion.

When I became a Born Again Christian in 1975, I received a copy of the book Joni from someone. This was the autobiography of Joni Eareckson (later Tada). Joni was a Maryland girl, born in 1949. She was quite an athlete as a teenager in several sports, including swimming. In 1967, still only 17, she dove into too shallow water of the Chestapeake Bay and broke her neck. She was left paralyzed from the sholders down. She went on to write several books, get married and form a Christian organization afterward. She is also an accomplished painter, holding the brushes between her teeth. She is very inspirational, but for me she brought back the images of the girl in the iron Lung and the horrible idea of not being able to move.

These earlier fears traveled to the back of my mind as I grew older.

The old images came flooding back after I saw the film, "The Diving bell and the Butterfly". This 2007 movie was based on the memoir if Jean-Dominique Bauby. He had been the Paris editor if Elle magazine, but he suffered a masive stroke that left him with Locked-in Syndrome. This meant he could move nothing, except his eyes and a bit of his face. He wrote his memoir by using a letter board. A person would call out the letters and he would blink when they called the one he wanted. By such a method he wrote his book. It took him ten months working four hours a day to accomplish it, but he did it. Unfortunately, he died only a couple weeks after the work was published. He was 44.

I though about this when my mother had her stroke. It hit her in a portion of the brain stem that could have possibly caused Locked-in Syndrome. It was bad enough. It made her left side of no use and left her unable to swallow.

What horrible fates, I thought.

Now here I am with amyotrophic lateral sclerosis and Lockein Syndrome is most likely my fate, if something else doesn't kill me first. This is the state Stephen Hawking is in. Yet, oddly, I have no fear as I had after the woman in the Iron Lung. In the movie. The Theory of Everything", young Hawking was depicted as depressed and distraught after his diagnosis, at one point smashing chair against a wall. I fell no such depression and I have smashed nothing, not yet anyway. I'm not happy about it, but figure I will just live my life best I can. They only part that really bothers me is the possibility I will lose the ability to swallow. My mother did and she had a feeding tube. I am not fond of that idea.

I seem to have been lucky. Below is a clip, a trailer for the movie. I wanted people to notice how he walks with his toes pointing inward. The clip below it is of me walking and my toes point out. This is a blessing for in pointing toes make for easy falling; out pointing give me more stability, for now anywa

The realities have chased away the fears. We only deal now with what is.

What They Must Think of Me

As I reported recently, I was to a three hour clinic the other week, like an interesting specimen at your local zoo. I wonder what they saw looking at me, because I got the report and am not sure this is the same guy I see in the mirror. Do I really need all this stuff all ready?

Stuff, what stuff?

Apparently there may be a lot of stuff you may eventually get in your stocking, so you might need a pretty big stocking.

I didn't get much of an explanation of the results; listed under the grouping: Vitals,  just more of a list of the stuff they want me to have.

Let's start with the first stat and it was disturbing to me. My weight, which was 178.5 pounds. A couple years ago my weight was in the 180s someplace and I wasn't happy about it, even though people continually referred to me as trim or thin or sometimes skinny. I didn't feel that skinny, too much belly fat. The photo at the beginning is me by some rocks as I took my early morning walk of 5 or more miles, I took these walks every morning for years. This one was in 2014 and I did weigh over 180 pounds.

In 2015 I spent the year doing not only my usual morning walks, but also regular exercise routine as well as cutting back on sugar and eating more fruit and vegetables. I was doing these exercise stations along a track in a state park, using a rowing machine at hime and going to the senior center gym three times a week.

By the end of 2015 I had achieved my goals. Most of my belly fat was gone, my weight was at 165 pounds, I was physically strong, felt good and was getting very good doctor visit exams. And so it went until that fateful late A when during my usual morning walk my legs went weird and I found myself 6 months later being told I had ALS. Thus we return to my clinic results and my unhappy gain of weight. However, the doctors aren't unhappy with those pounds. They want me to gain a few more and to keep a weekly record on the scales; just don't lose weight!

Being told by your doctor to gain weight can have its advantage.  I'm eating candy and having milk shakes again.

The second, and oddly last, statistic under vitals probably should have disturbed me more, except I don't know enough yet to read these things on first blush. We are very thankful for Google. This was Forced Vital Capacity: Erect 47%  Supine 61%. Capacity of what and what do the percentages mean?  I hadn't a clue.

The Vitals were followed by directions.

FEEDING: (Boy that does sound like a specimen in a zoo. It is feeding time, watch the trainer feet the seals):  I was to continue with my current diet, which to them seemed suspect. I generally have a bowl of cereal in the morning (although sometimes I pop some popcorn instead) with a couple cups of coffee and occasional a sticky bun. Lunch is anything that strikes my fancy to grab these days. I don't follow any formal three meals a day. I might make a sandwich or I might just eat some potato chips or I might have nothing at all, except a glass of V-8 and/or Orange Juice. My big meal will be dinner, generally in a restaurant three times a week. It is usually typical, I guess, a protein, a starch, a salad, a side. Oh, Sundays I have a donut at church and then soft Philly pretzels as my midday meal.

They recommended Ensure Plus as a meal or snack. I prefer my milk shakes from ARBY's but we'll see.

GENERAL:

Utilize built up handles for utensils and handwriting tools.  This consists so far of a foam rubber tube with a hole down the middle. You stick your fork or spoon in the hole and it gives you more control. Or you stick a pen or pencil in the hole to aid in writing. I haven't really utilized this yet. I am clumsy now and drop things like a fork, but I still manipulate them pretty well if I hold on to them. Where I really fail these days is cutting, but none of our knives fit the hole. I need some kind of cutting aid, which does exist, I just don't have any. My handwriting has always been bad and it is getting worse, but its more a degree of unreadability. To tell the truth, my keying is weakening as well.

I was given three exercises to do, all involve stretching to maintain a flexibility. They aren't difficult; just boring.

There is also an odd looking gadget I am to breath through twice a day for 15 minutes each time. I wear a nose clip to force my breathing through the mouth. This supposedly strengthens the muscles that aid in breathing. The nose clamp tends toward hurting after a bit.

A prescription was ordered for Levsin to help with drooling. I had them cancel this. I have not reached a drooling stage yet, thank goodness. I read that tomato juice and sucking olives relieves drooling. I like tomato juice and olives. I wonder if V-8 would do the trick, I already drink a good bit of that and it must contain a lot of tomato juice.

They also suggested tonic water with quinine for cramps, one glass a day. I am not having cramps.

They want me to wear a right toe off brace to improve foot clearance. I go to get fitted with this next Monday, but I really haven't been tripping. I hope it isn't a drag.

Finally, BREATHING, which I am still managing to do. They have seen I was supplied with a
Trilogy Respirator with full face mask. I appear like I'm flying high altitude jets or something. It is a strange sensation as this thing pumps air into me. I am supposed to sleep wearing it, but for the most part sleep avoids me when I wear. Perhaps it is frightened. I have fallen asleep with it on a couple times, but both times I woke perhaps an hour or so later and had to take it off to fall asleep again. I wear sometimes just watching TV in hope I'll adjust to the weight and discomfort. Again, this is a device to build my muscle power for exhaling.

I didn't expect so much equipment this soon. I get fatigued easily, stumble a bit, but I am still  functioning.

That Grand New Gang of Mine

What awaited me at the hospital once they proclaim I have Amyotrophic Lateral Sclerosis was quite different from what my previous experiences had been. I was not admitted or committed to some uncomfortable bed  and no one was coming about sticking needles in me here and there or forcing pills down my throat. Quite the contrary, for my decisions about my fate have been placed pretty much in my own hands. It is not that I have been cast out by the medical profession to fend for myself, no not at all. I find myself part of a cast of thousands who seem genuinely concerned about my well-being and prepared to aid me in having as good a quality of life as can be managed under the circumstances.  There really isn't any treatment, not in the usual sense for this thing, but they provide a clinic presumedly to help me transition through the progressing of the disease. It is a combination efforts of hospital staff and members of the ALS Association.

Friday was my first such clinic.

I was finally diagnosis as having ALS on December 1. I could have attended my first extensive clinic in December, but because of the holidays and all the fuss and feathers of the season, I put it off until January 6. I awaited this with much anticipation, then, for just over a full month. It was going to require me to drive into Philadelphia, which was one part I wasn't looking forward to at all. My appointment was at 8:45 AM and this meant my travel time would fall during rush hour, o joy, o joy.

And of course, we had to get our first snow fall of the year over night.  Fortunately the roads were fairly good.

It does not have to be difficult from here in this section of Delaware to Philadelphia. Straight up I-95 North should have you there in about a half-hour, unless there is an accident or road construction upon the highway. This time there was neither and even traffic wasn't as brutal as is common that time of day. Still, I left at 7:30 to allow for any hiccoughs and thus arrived on the 900 block of Walnut Street with plenty of time to spare. I parked at a garage at 925 Walnut.

Philadelphia parking can be expensive when compared with Wilmington parking. These garages seem to be manned with attendants who do not speak English with great skill. The person who gave me the ticket totally confused me, but I gave him my key and trusted the car would be there for us when we returned. The clinic was at 909 Walnut, juts a short walk from the garage and we signed in a half-hour early.

I expected we would be sitting in the main waiting room for that half-hour, but like before, someone took us back almost immediately, the first of a parade of people. This one weighed me and then escorted Lois and I into an exam room. I weighted 171 pounds with my clothes and shoes upon me, so let's guess I am probably 168 pounds give or take some ounces.

We had been initially greeted by Kate, ALS Program Manager of the Jefferson Weinberg Center. I'd be hard pressed to tell all those who followed over the next three hours plus. I know that Goran Rakocevic, my main ALS doctor and Judy Guarnieri, the Led Nurse Practitioner visited with us several times during the day, but there were a ton of people, dietitians, nurse coordinator from the ALS Association, Social Workers, Speech Therapists, Occupational Therapists, Physical Therapists, I-am-not even-sure-what-all therapists. They stretched me, pulled me, poked me, struck me with a hammer, watched me walked and asked a million questions.

I will get an assessment of all this sometime next week.  Meanwhile, I was given some physical exercises to stretch my muscles. I was also given the gadgets in the photo, consisting of nose clips and a tube I am to breath through for several minutes a day to strengthen my breathing. I was also given the tube in my hand to make handle utensils such as forks and spoons easier for me. It was discussed me getting a mask to wear when I sleep to also help breathing and a leg brace for my right shin and foot to help me not drag my toes to close to the round. There was also discussion of grab bars and ramps and other alterations I might need in my not-very-handicap friendly house.

I will go back for another such clinic on February 7 and so the adventure has begun. I feel I am in the hands of caring folk.

The hospital will validate parking; however, I had picked a garage not one of theirs. They gave me a $15 voucher towrad parking. The fee for four hours was $30, so I had to pay $15 out of pocket. Next time I will drive about the block and park at the neurology Garage at 9th and Locust.