THE ODDS (Debbie Does ALS)



Well. Another clinic, another update.

The morning started with an unexpected mini snowstorm. We had a dusting in Fredericksburg overnight but, happily, the roads were untouched. As I was getting ready to leave this morning, however, it started snowing again, and hard! Lynne had quite a bit of difficulty making her way from her house but eventually got out to Route 1, which was unbelievably bad. Cars were on the side of the road and turned around, all because of this sudden storm. We estimated another 1-2 inches fell in the short time it snowed (almost an hour). We finally connected and off to clinic we went.

My FVC was 73. This is down from 80 six months ago, and 90 a year ago. Two years ago at my first visit I measured 104. The very briefest of mentions was made about feeding tubes (because of the breathing function required for a safe surgery). It is not time yet to think about this but mention was made nonetheless.

The declining number doesn't affect me the way it did before. Becoming anxious about it does not change it, so graceful acceptance is the better course. 73 is not a bad number -- it's not 104, but it's not too bad.

Somehow I have managed to lose 3 pounds. I have not made any conscious effort to diet; I pretty much eat what I want when I want and damn the consequences. Remember what Justin told me: fat is good for ALS. So I am a little surprised at the weight loss. One hypothesis is that things are becoming more difficult to do and, consequently, I am burning more calories. Another hypothesis is that I am consuming fewer Corona Light calories. It may be a combination of the two.

It was noted that my right foot has become weaker. Actually both my feet are weaker but the right foot is the most affected. Apparently my dorsiflexion is limited. One note on my chart said "early foot drop." In a preemptive measure, I have been given a prescription for an AFO (ankle foot orthotic) should it become necessary. Hopefully it will not become necessary for a long time.

Right-hand: even weaker. Left hand: weak but stronger than the right. Funny moment: when Ellie asked me to squeeze her hands, the left managed satisfactorily, the right did not even close around her fingers.

No frozen shoulder (thank you Mike).

I mentioned that my back gets tired more easily and more frequently. It was recommended that I consider cutting back my work hours. This will be tough because I love my job, I love the people, I love the energy. I will take baby steps here -- perhaps leaving earlier in the day one or two days a week.

Speech: fine. Swallowing: fine. Thank heaven.

Ellen and I had conversation about an in-home visit with the whole family. Cecilia's therapist had inquired whether or not there was any sort of support group for her to attend that would address the issue of my illness; there is not really anything appropriate for a 16-year-old. Having Ellen come to the house where Cecilia is with her family may be more productive.

A brand-new psychiatrist conducted the psych visit. This is the third psychiatrist I have seen in the three psychiatric visits to which I have consented. I am not convinced this is a productive use of anyone's time, but I submit to it nonetheless. Three sessions, three doctors, three different sets of notes, and neither the second nor the third doctor reference anything that has been discussed earlier. I understand they are there to provide support but I find it frustrating to repeat the same answers to the same questions. Maybe I'm just too picky.

Blood pressure: 144/85 the first time, 130/82 the second. It is never good at clinic and I have stopped even paying attention.

After clinic Lynne and I walked over to Bertucci's for pizza and beer with Adam and Justin. It was freezing cold and my poor muscles do not like the cold anymore! (Fortunately Adam had his car and drove us back to where we were parked.) In keeping with my philosophy to eat what I want, I ordered the chocolate mousse dessert after I had my ravioli. So there.

Jenny and Becky are coming over tomorrow for meal preparation. I intend to add some desserts, including brownies with chili powder. Yum.

No comments:

Twitter Updates

    follow me on Twitter