On the last night of his recent visit with us, as he was doing our dishes after dinner, I asked Jansenist to write up a report of his observations about my condition. The great thing is that I knew he could be honest without trying to "be nice" and hide the truth. He wrote:
"This is in response to your request for my observations.
I am not optimistic this will be very helpful to you, but
1) I did not make a point of observing you closely. As a result of your blog and what I've read about ALS, I felt like I already knew how you would look, move, etc. So in large part I am simply going to tell you what you've already told me.
Compared with my 2005 visit.
2) Walking is much more difficult. It has to be done very carefully, slowly and deliberately. In 2005, you had a fast limp.
3) Speech is much more difficult to understand, though occasionally quite clear. In 2005, it was a little deliberate but I recall no difficulty understanding you.
4) Eating seems to be much more difficult. I didn't spend a lot of energy making sure you weren't choking ... but I would guess the possibility of choking is a constant concern during meals now. I remember you moving your head forward and down occasionally in 2005 as you ate.
5) Your appearance (when still) has not changed in any significant way I can think of from 2005.
6) I suspect your energy level has declined from 2005, but this is conjecture not observation. In 2005, you mentioned feeling a bit worn out one afternoon and rested a bit.
7) One day I came into the computer room and noticed you gently swaying side to side as you looked at the computer screen. I wondered why. I thought, "Well, maybe it is easier to remain sitting if he does that." But I didn't ask. I don't remember seeing this at all in 2005.
8) You seemed to make a little less eye contact in 2006 sometimes when we talked. I wondered why and thought perhaps this helped keep the lability under control.
9) In both 2005 and 2006 I noticed that you would repeat the same phrases when managing the kids. In 2005 I recall you saying "Son, please eat your breakfast or put your dish in the sink." In 2006 at dinner one night you repeatedly said to your daughter, "Lower your voice." Your speech had a mechanical quality to it on both occasions. I was puzzled by it. I didn't know if this was your parenting style or whether using the same phrase over and over made speaking easier.
10) I don't remember you spitting in 2005.
11) Sometimes now you put your head down on a table or rug by bending at the waist. I don't recall this at all in 2005.
12) I think you gave me the "L" sign for ALS laughter one time during my 2006 stay. You did it quite a bit in 2005. In 2005 your laughter was inappropriate on at least one occasion. In 2006 it did not ever seem inappropriate. It just seemed easier to make you laugh."