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.
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