Cooking with Gas

Mmmm, omelette stuffed with smoked salmon, the first meal M has cooked on the stove since the accident in February. AND he used his left hand to turn the burner knob. His left arm is really coming along, with almost complete passive range of motion and every single muscle group working in response to M's thinking of movement.

With lots of cuing, M's also cleaning the kitchen counters and sink every morning. He'll unload the dishwasher all on his own, but sometimes needs to be reminded to go back and finish.

Some of the oddest things keep coming up - all frontal lobe, executive function issues. For most of us most of the time, we know if we have done something. For example, if you know you intend to wipe down a counter, you'll get around to it, then know you have completed the task.

For M, there's a strange disconnect between thinking and doing. I'll see him walk out of the kitchen, right past a sign that asks, "Did I complete my tasks?," and ask him, "M, what were you supposed to do? Did you do it?" He now can always say what he was supposed to do, but invariably will answer he did do it, when a cursory glance would reveal that the task hadn't even been attempted. As best I can tell, it's as if thinking about something means he must have done it. There almost no internal checking mechanism or self-monitoring, "Am I doing what I'm supposed to do?"

I say almost none, because he can monitor in some things if given an external reminder. For example, when you ask if his left arm is properly positioned, a month ago, he would have replied yes, without looking, even if his hand was not in the right position. A couple of weeks ago, he would have looked, seen it wasn't correct, and repositioned it. Now, if asked if his hand is palm down, he will reposition it without any more cuing or prompting. He'll even position it on his own occasionally.

He remembers things quite well, considering his injuries. He'll remember even mundane activities from one day to the next. But he still can be a bit unmoored. For example, when his new speech therapist, who spent two sessions evaluating his cognitive functions, asked who she was, M said she was one of his doctors (kinda making sense, since M considered the PhD neuropsychologist in the hospital who evaluated him to be one of his doctors). M also said we were on the fifth floor of the hospital, when we actually were at the same outpatient therapy location he has been going to for a month, a one-story structure.

The only other oddity to come out of the testing was when the therapist asked about holidays. M had difficulty naming a holiday in January, thought long and hard about one in February before coming up with Valentine's Day, then when asked what holiday just passed, said that July 4th was coming up next week even though he had checked his watch and answered, when asked the day at least three times within that hour, July 27th. He didn't recognize the inconsistency until it was pointed out to him. Then the lightbulb went off, "What I'm thinking and said doesn't make sense." Thank goodness most often M does recognize logical inconsistencies now, once they are pointed out to him. Again, though, his own internal automatic self-checking facility is not there for the most part. We can only pray that it will come back or redevelop.

More therapy, more progress

Those who only see M occasionally always remark how much he has progressed. As for me, it's like not noticing how much your child has grown until you get the winter pants out, then you realize, "Wow, she must be two inches taller than last year!" For M, we can see measurable progress by the week, but because I'm so close, expectations are so high, and my frustrations so close at hand, I see less the miracle in front of my eyes.

This week M will transfer from Challenge to TOTS (TIRR outpatient therapy services) so he can get more therapy, paid for by the state. Our health insurance coverage for therapy has maxed out.

Today for the first time, M walked around the esplanade in front of our house, a fifth of a mile, I think. And last week, when I griped that I always had to warm up our meals (many days we have meals prepared for us), M got up, prepared and served dinner! Great initiation.

Implementing Change

M could have so easily died in the accident. He could have been left in the limbo of a vegetative state. I don't know why this loss had to happen to us. God grants us all free will and terrible things happen as the result of our decisions or the decisions of others.

Knowing my husband's being here on earth, slowly but surely improving, is a gift from God sustains me. From a purely psychological point of view, I can choose to wallow in pity or see this as a challenge to which we all can rise. I choose the latter and thank God he is with me and daily ask for wisdom and strength.

Today our Challenge social worker and neuropsychologist reviewed the results of M's neuropsychological assessment. As we all knew, M suffered tremendous damage to many areas of the brain, leading to significant cognitive impairments. The brain heals so slowly, there still many months of significant changes to come, merely as a result of healing. In addition, even with severely impaired brains, the brain injured can relearn skills such as problem solving and learn new ways of coping, using aids for memory, for example. Deficits remain, though, even for those with much less severe injuries.

For now M is too impaired cognitively, too foggy, to make use of the Challenge program. In addition, he requires more one-on-one support than offered by Challenge, where all but the PT and OT sessions are group sessions.

I've decided instead, with the agreement of our Challenge case manager, to take advantage of a state-funded program that will provide 120 hours of occupational and physical therapy after the paltry 20 hours his health insurance offers is exhausted. We can do that at the same TIRR facility, with therapists who specialize in treating persons with brain injuries. Concentrating on the physical side will increase M's physical safety and competence, while giving me more time to concentrate on intense one-on-one work with him. I'll guide Mark through problem-solving, coping with perseveration, developing a routine to get through the day, and addressing lack of initiation. The social worker and neuropsychologist seemed to think that within the year Mark would be able to return more profitably to Challenge. In the meanwhile, they and I will try to find a neuropsychologist who will consult with me to carry on a program for M.

Please pray for wisdom and strength for me, understanding and support for the children, and healing, miraculous healing, for M. I pray too that God's love shines through us, that all is to his glory.

6 Praise be to the LORD,
for he has heard my cry for mercy.
7 The LORD is my strength and my shield;
my heart trusts in him, and I am helped.
My heart leaps for joy
and I will give thanks to him in song.
Psalm 28, NIV