December 7, 2000 News

It's been a wild ride for the last 10 days.

Good news:

• My brain kicked up into a higher gear. I'm a lot more aware of and able to follow and analyze what I see and hear, in real time.
• There have been some changes in my vision. Some changes are really good.
• For a few hours over the last 2 days my vision has been very good.
• I've been learning new schemes for remembering things. They show signs of promise.
• I was able to get an appointment next week with a new neurologist.
• I had a good Thanksgiving at friends' with my son.
• My stomach endoscopy showed no major problems. And I got pictures!
• My son moved back in with us.

The bad news:

• My son moved back in with us.
• Some aspects of my visual brain function have continued to degrade.
• My stomach endoscopy showed no major problems. (See good news above.)
• The only medication that works for my irritable bowel syndrome (IBS) was recalled. The specialist prescribed another medication with a side affect list that reads like all my current deficits. I'm seeking another opinion.
• The Radiologist and the Gastroenterologist disagree on the sliding hiatal hernia. That means more tests and another opinion. Meanwhile, nothing stays down, even when standing.
• Episodes of irregular heart beats are becoming more frequent.
• The electrodes for the heart monitor leave bloody circles on my skin. The pediatric elecrodes aren't as irritating, but leave circles
• Since the stomach endoscopy, I've had a lot of chest pain, and drinking cold water suddenly doubles my heart rate and causes cramps in the painful area in my chest.
• Social Security sent a letter saying they were sending me a $400 check in December, for November. But first they were going to take $2,400 out of that one check, for overpayment in November. I come up with -$2,000. My math skills are still poor, but that bad?
• My brain switches gears and speed as often as 3 times a minute. My life is taking on a damaged cassette tape quality.
• I can't drive at night.
• I can't take the garbage out at night, even with a flashlight. I end up face down in the shrubs.
• Memory is still pretty bad, even when I find ways to use visual and tactile memory.
• Stop lights tend to jump out of the background at the last minute. I ran one light the other day.
• My internal clock doesn't always tick.
• I get lost at times.
• Sometimes I can't read anything.
• The faster my brain gets, the longer it has to wait for sensory input and muscle response.
• It's becoming obvious that my hearing has been affected. Like vision, just because I can hear it doesn't mean I can "hear" it.

Emotionally I'm a lot more settled, and am enjoying being able to follow things better. I'm impatient with the way my thinking and understanding runs ahead of my senses and responses.

I've been studying brain structure and function. I have a lot of long term memory on the subject, but never expected to be using it. It sure helps to be able to pull up 20 or 30 year old knowledge, even if it is out of date. That makes it a little easier to update and retain information. But I have to spend a few hours studying, then let is sink for a week or so. There doesn't seem to be a good source anywhere for the models or pictures of a brain than I can use to locate the things referred to in the operating report or the MRI and angiogram studies. It looks like it was very complex, difficult even for the surgeon to make out.

I am scanning the reports, and running them through the character recognition program, so we can get some of them posted here. I haven't been able to memorized my official diagnosis. I just remember it ends with the annotation ",complex".

Coming up:

• Neuropsychological exam on December 11.
• Appointment with the Neurologist on December 13.
• Hearing evaluation coming in January when new insurance rules take affect.
• Report from the cardiologist by the end of the month.

Goals for the month:

• Renew contact with friends I've lost touch with.
• Be more active in church leadership.
• Revamp this web site and get a domain name for it. Suggestions?
• Do some travel.
• Brave the cold, go to the capitol building, and get my picture taken with the governor.
• Finish planning and start writing the book.
• Don't attempt too much.

Thanks for visiting.