In light of some recent phone conversations and emails between Mark and his friends, I think it's time I post an update.
It's been one year and three days since Mark came home from the rehab hospital. For those of you who've kept in touch via phone and email, you have probably noticed Mark's most glaring deficit, short term memory loss. You may have gotten phone calls, back to back a few minutes apart. It's not that he forgot to tell you something, but in those few minutes, he's forgotten he's called you at all. You may also have received the same email more than once. These things seem to happen to anyone who's had a head/brain injury, even something one may think is not serious, like a concussion. Believe me, no brain injury is minor. Even though Mark's brain injury was not caused by trauma (i.e. traumatic brain injury) it is none the less classified as a brain injury. Although his short term memory is getting better, it will never come back 100%. He will ask about someone he thinks we haven't seen in a while, although we were together for dinner the previous night. He also has a problem with time. Events from yesterday, last week or last month are all merged. It's worse when he's tired. One of his other deficits is disorientation. He gets easily confused especially when he's not in familiar surroundings (home). He says it's like being drunk, all the time. He's a smart guy and he covers up pretty well, but if you're around him long enough you'll notice his confusion.
He also has problems concentrating and gets easily flustered. If you keep up with his blogs, he sounds like the "same old Mark", but he writes early in the morning when he's most clear.
I sometimes find him asleep in front of his computer, watching tv, and almost always in the car. He still has wakefulness issues (from the original brain injury).
Mark has gone through additional hard times too. A bout with suicidal thoughts in the spring (we had to make sure his guns were out of the house) took him into therapy, a prescription for an anti-psychotic drug, and an antidepressant. It was recommended that he attend a 40 hour per week out patient program for suicide prevention but it was determined that he couldn't keep up with group therapy because of his cognitive problems. The alternative was to continue with outpatient rehab, additional appointments with a neuropsychologist and a psychiatrist, and be under 24 hour supervision at home.
When Mark was weaned off of all these drugs in late August, he went through a manic phase, sleeping only a couple hours a night and he was very difficult to deal with for a couple of months. That was a really rough time for both of us.
His vision will probably never get better and he'll probably never drive again. This also causes balance issues which make it almost impossible to cross streets (his reaction time is also a problem) and there are few sidewalks around here. He's totally house bound unless someone is available to pick him up and drive him places. Now that I'm working full time (since mid December) he likes to get out at night, just when I'm looking forward to some downtime.
Mark did get his prism glasses a couple of weeks ago and we were very disappointed to see that they didn't make his vision much better. The doctor told him that if he holds his head at just the right angle (we're still trying to find that angle) a small amount of vision in the center of his field of vision will line up. The the rest will still be doubled, half at an angle, at that. And when it doesn't line up, it makes his vision worse than without them. We had been holding out so much hope for them to restore his vision and are now facing the fact that nothing will work. I think we believed that his double vision would be alleviated with the glasses. No one ever told us how little difference they would make.
Mark has also been seeing an acupuncturist for a couple of months to no avail. His next alternative will be a black contact lens - which, if he can get used to it, will be an alternative to his patch.
I'm sure that for someone as smart as Mark is, living in his confused and foggy world is very difficult. It also depresses him when people don't understand that he can't deal with issues, converse and respond like he used to.
Mark is trying to learn to live his life the best he can. He has good and bad days, like the rest of us. On top of it all, he has to contend with isolation and loneliness too.
As some of you know, we adopted a cat named Flora last September and we recently found a four month old male kitten who we've named Bud. Mark enjoys their company immensely. It's made a big difference in his life. He sends me text messages at work of their antics.
The one thing we're holding out hope for is that he will never have another bleed, although the neurosurgeons have said it's not a matter of if, but when. Luckily we've been told that his chances for another bleed go down with time.
Chris
