Dreaming

In my dream last night I was frustrated that some of my friends we're singing, in parts, but I couldn't join them because of present vocal concerns. This isn't the first time that Dream Dave had to opt out of activities because of limitations. A few weeks ago I dreamed that my brothers invited me to join them in a soccer game, but I had to decline. What were they thinking? I'm no good. I can't run. But wait...it wasn't until I awoke that I realized Dream Dave can do it - he can do anything. He runs real fast without tiring, does bicycle kicks, and scores every time. And he can sing too! I've got to figure out how to confine my nightmare to waking hours!

Megabite

It is called pseudo bulbar and it is a subtle yet terribly frustrating MS symptom. I’ve referred to it before as “loosely tethered emotions” which means it is difficult to stifle a snicker or sob. The former is much more problematic, especially when disciplining teenagers. If their response is 99% defiant and 1% ridiculous, I giggle. Kara says, “It’s not funny!” and I agree, but I can’t help it. Well, maybe I can but I don’t know how to do it.

I learned one way to control it last night. I attended Ryan’s choir concert at the high school. I was alone because Erika also had a concert at the same time. The lights dimmed and the first number began. It was a group of girls completely devoid of my progeny. However, from the opening chords I was struck with the thoughts, “Amanda used to sing here” and “I really miss her.”

These are reasonable parental thoughts but with my condition, I could not afford those thoughts. As my lips began to quiver I quickly tried to think of something else. Baseball. The Angels are in Chicago tonight. Well, all but one; one is in Provo. Cue wave of emotion. C’mon, pull it together man. Pay attention to the number; these girls are singing well. I mean, it might be better with….dang it. You look like a freak, sitting alone starting to shudder. You’re going to have to walk out if you can’t control it. I bit my knuckle. It hurt but it was working.

I am happy to report that I was able to stay composed and enjoy the concert, my finger is still intact, and that Ryan was amazing!!

Signs

Positives

· I had my semi-annual visit with my neurologist a few weeks ago. I was glad to see that I had gained five pounds and she said that my walking is measurably improved (but still kinda bad.)

· Guy at church said I look healthier, asked if I was feeling better. Dry-cleaning lady made a similar observation

· I have been down to ½ a sleeping pill for a few weeks now

· Right arm has been steadily increasing mobility. As a segue into the negatives, I was showing off the improved right-arm mobility to Kara as we were walking through a parking lot and I was made to learn that she does not appreciate public displays of mobility, especially if they appear to be of a Nazi persuasion.

OK, now the real negatives

· A.M. re-entry is still pretty bad; worst 20 minutes of the day. I have to stretch a lot and my body just kind of shudders for a few seconds.

· I still can overheat easily and I need to be careful. It was warm out Saturday and I tried to be a hero and that isn’t good. I did walk around the block last week, and though the last little stretch (3-4 homes) was difficult, It has been worse!

· Voice isn’t worse, and maybe it is a little better than six months ago, but it is definitely still bad.

I won’t go into every symptom but suffice it to say that overall, I’m OK. Some things have definitely improved and others are definitely worse. (See why I don’t update this blog very often?)

Baby Steps

Last night as I lie in bed I realized that it has been a couple days now since I have had an afternoon “ultra tired” spell. That is good. And then this morning as I was going upstairs, I was feeling relatively steady so I decided to try it hands-free. (Truth be told I had a sugar wafer in each hand.) I know, that isn’t on my diet but I made it to the top with no major issues.

In fact, I was feeling so good about the ascent, I considered trying to come down without the handrail. This is more difficult, and potentially more dangerous. It is the difference between falling down the stairs and falling up them. I had nothing in my hands so I figured I’d just quickly grab the rail if anything misfired. After a minor false start, I stepped with my right foot onto the first stair. My left foot quickly followed. I’m good! I could do this! The problem was having each foot stop on each step was going to take forever, so I cautiously tried normal steps. I wavered a little but bottom line is I made it without touching the rail!

Small victories!

Anne Marie

While working with some old census records, I came across the name “Anne Marie.” In 1910 this was not an uncommon name, although usually the second name is not spelled out.

I was reminded of a girl named Anne Marie in my 3^rd grade class. I thought her name a little strange for a contemporary. She was a little overweight and she wore glasses that seemed large. She was very self-conscious. I was never mean to her, but certainly never did anything particularly kind for her.

The most vivid memory I have of Anne Marie was on Immunization Day; shots to the upper arm. We were all a bit nervous about getting a shot, but as a few of us waited in the nurse’s office, Anne Marie became disconsolate. The nurse was kind but a little brusque. Anne Marie cried a lot. And it was the unflattering type of crying. She was wearing dark red polyester pants and a white shirt with maroon flowers. I felt bad for her but, c’mon, it’s just a shot. I was not excited about it either but I was not going to embarrass myself. She even cried for her mommy, who, doubtless was the originator of the crimson ensemble.

As I recall the scene now heart aches. Poor thing was terrified. It’s not fair now because I can now see an 8-year-old girl through the eyes of a parent. This girl that to me was defined by a double name, extra weight, glasses, and polyester was something entirely different to her parents. I’m sure she was their prize, the most special and beautiful soul. They gave her the most beautiful name they knew and dressed her in the cutest clothes they could. Who was I to look at her with the slightest bit contempt or maybe worse, indifference?

Even more than having parental perspective, I understand the nature of fear a little better. This fear was a little irrational but rationality is not a fear prerequisite. Anne Marie didn’t care if we saw her cry. She didn’t care that a boy in the room thought her plain or thought her glasses were large. If I could go back in time I would not care so much about some things either. I would maybe have sat down next to her and said, “It’s OK Anne Marie. Cry if you need to, but everything’s gonna be OK. Your friends are here. We’re all a little scared but it’s going to be OK.” I could have even taken her hand and said something to take her mind off the shot; maybe compliment her outfit.

But I can’t go back. All I can do is be a better comforter today. I just hope that I can recognize the Anne Maries in my life today.

Swing Low

I have been a little encouraged by my voice lately. It is still bad, but I think it is better than a few months ago. I never am really sure though because as I have reported here before, as I get used to a limitation, it seems to be less severe, even though it may be unchanged. There just aren’t many objective measures. On the phone Amanda commented that my voice sounded better and I did place a successful drive-thru order.

With this backdrop, a couple weeks ago I got a cold, which is no fun, but it did yield a dramatic (albeit temporary) improvement in my voice.  It was real low, but it was there.  The first morning I was in the kitchen with Kara and I said something.  I sounded like Barry White but it was so strong!  Kara said, "Hey, you have a voice!"  I agreed and chalked it up to the cold and reflexively went back to my study.  Then it hit me: I can be heard!  I was kind of like a kid on Christmas morning. I mean, I can be heard every day but this was different; I had a little power! As I considered how to spend my vocal fortune, I couldn’t help but do something a little sappy: I went back to the kitchen and told Kara that I loved her.  She thought it was sappy too.

Next I called my friend who does not hear well.  We haven't spoken for months because it is just too hard to communicate.  He could hear me now; it was so awesome.  We talked about his health and made lunch plans.

Next I called parents, mostly to show off.  Speaking was still a little difficult, but I was getting way better results for the effort.  I was humming and stuff all day long. 

The cold is gone, thank goodness, and the deep bass voice too, but it was nice while it lasted!

Good and Bad

The Bad: I had a fall last week. I was at the mall with my parents and I had left them in search of a restroom. The mall was essentially empty and I guess I didn’t quite lift my right foot enough to shuffle over the polished floor. Stick. Stumble. It wasn't pretty; I think I resembled an octopus falling out of a tree.  Some kiosk guys did see it, and asked if I was OK. I was fine. The good thing is that I didn’t injure myself and although I did feel a twinge in my bad arm, it doesn’t appear to have set me back at all.

The Good: Maybe, just maybe, the ol’ voice is starting a gradual improvement. Last night at FHE I sang about 80% of the opening song. And maybe 30% of the closing. Now, I didn’t sing well, and my range is still less than an octave, and really bad, but it was better than a year ago. It is still a pain though. And like a lot of things, I’m never sure if it is really an improvement or I am getting used to it and learning “work arounds” so it seems better. I’ll keep working it.