My Nightmare Year with Brain Injury

http://www.ninds.nih.gov/disorders/tbi/tbi.htmn Injury

The Losing Keeps on Giving

Today I experienced a frisson of what I had lost when my old insurance company mistakenly sent me new cards. I lost my insurance when I lost my job. The insurance I had to pick up had a time limit (which has now ended) on physical therapy. This means I will never be able to get any better. While it's true that COBRA would have allowed me to continue the insurance, no way could I afford that on disability income alone.

I thought maybe the company had decided to let me continue my old insurance without paying extra. Wrong!! Just one more painful reminder of how over my old life is.

TBI and its Emotional Backwash

Perhaps because of changes in the brain from a blow to the head, depression is common among TBI survivors -- even if you weren't already depressed (which I had been treated for). Low self-esteem stemming from feeling like a failure and no longer "smart" also occur.

I also was diagnosed -- and treated -- for ADHD at age 46, and though medicine helps, oy oy oy, one of the therapists' comments was that I was "too impulsive." This is an insult they love to throw at a TBI survivor, and frankly I didn't appreciate it at all.

All that "impulsive" really means is that moving, walking, climbing stairs, have to be thought through ahead of time. For instance, once this year I fell when I flounced out of the kitchen in protest of something my husband had done.

All right then, no more flouncing.

When I had my accident, I also had to turn in my drivers license. That hurt big time because I had just about been ready to renew my license for four years. Now, unlike when I moved here in 1979 (when I took only the written test), I'm going to have to take the road test again!! And I'm told Pa.'s test is quite rigorous (I know this because my son has his drivers permit and his instructor commented to him that one must go exactly the speed limit, come to a full stop, etc. etc., or he would not pass.)

Recently I was evaluated for the possibility of driving again, and was turned down flat. Yowzer. Never mind that I hadn't driven in two years, that I was in a car that was too big (they had to have dual controls) and totally unfamiliar. Prior to my fall, I hadn't had a ticket for a moving violation since 1978! That should count for something but alas, it didn't.

In many ways, I have lost everything that gave my life meaning. I lost the job I loved, one I had done in various places for 35 years! I had to retire prematurely. Working gave me someplace to go and kept my mind sharp. I worked with people whom I had known for 29 years. That's all gone now. I can't say this makes me happy. I have nothing to do and noplace to go.

As I've said often, don't try this at home, kids.

The Signature Injury of Iraq and Afghanistan

A couple of months ago I read a book by ABC anchor Bob Woodruff and his wife: In an Instant. It talked about the brain injury he incurred while covering the Iraq war.

The roadside bomb or "IED" blew off the top of his head; he had to have a plate inserted to substitute for a piece of his skull. It was grim. But he did ultimately recover, and he and his wife formed the Woodruff Family Foundation to help fund the needs of brain-injury patients.

As I understand it, a person doesn't even have to be hit with shrapnel to incur a brain injury; merely the concussive force of the bomb is enough to do damage.

This is shaping up to be the signature combat injury of these wars, and it's unclear whether the VA is equipped to handle it.

Riding a Motorcycle Without a Helmet: It Really Hurts

One day at lunch I spoke with a mom whose son was at the table, none too alert. Her son had crashed his motorcycle a year ago, wearing no helmet. He had spent a year in a nursing home, trying to progress to the point where he could come for rehab. His parents were rebuilding their downstairs to accommodate his disability so that he could go home with them to live.

Maybe it's true that a helmet might not make a difference. However, that's not a chance I'd prefer to take. Brain injury can be too devastating.

Theories of Rehab Therapy

One of my biggest problems in rehab was that my therapists constantly told me what I was doing wrong. There was rarely any encouragement. My outpatient PT told me this was because theories of therapy called for them to point out problems as they occurred — that this was the effective way to teach new moves.

My inpatient PT was the exception. One day she said to me, "Oh Wendy! Your balance is getting so much better!!" I could’ve used a lot more of this. It often seemed as if nothing was going to improve.

Occupational therapy was another thing. The rehab unit had a place called the ADL Suite. Stands for Activities of Daily Living. Unfortunately, my OT assigned me things I really never needed to do around my house. For instance, one day he asked me to cook eggs sunny-side up!! I was totally lacking in the skill of flipping over the eggs. We never have any such thing except when we go to Denny’s for breakfast. Our eggs are always scrambled when I make them.

An OT who filled in one day for my regular guy admitted that she got her patients to cook her breakfast — sparing her the need to eat before leaving the house.

And then there was bedmaking. For many years we have depended on just putting on a bottom sheet and then covering it with a comforter. With the king-size bed we now have, this is particularly helpful (that’s a lot of walking around, especially for a disabled person). But nooo, my OT was like, ya gotta put on a top sheet!! It wasn’t as if I didn’t know how, but that’s a step I’ve skipped for many years. How practical is that?

My sister is acquainted with a woman who had a brain injury. She lived in a mansion and had hired help, so she was never going to have to make beds!! But still the rehab unit insisted on it.

No. Activities of My Daily Living, not yours.

My nightmare year with brain injury began in late September 2006 when I fell down the steep, twisty, windy steps in my 100-year-old home.

Little did I know when I consulted my family doctor complaining of vertigo that the "cure" -- Antivert -- would lead to something else entirely. In the next few days my loss of balance caused me to fall in the parking lot at work. A week later, I fell down the stairs and, fearful of some kind of damage, called in sick to work.

Things seemed OK. But one evening later that week, I was either going up to bed or descending from the second floor (I don’t really remember which) when I fell downstairs and landed on the hard floor below. My poor husband and son, hearing a bang, came down to find me lying, unresponsive.

First I was taken to a hospital where my doctor had admitting privileges. However, oops, the hospital had no trauma surgeon on staff. Then the ambulance was directed to a hospital across the county some 20 miles away that specialized in brain injuries.

(Later, I was reliably told that the delay in getting me treatment extended my recovery. I suppose a surgeon needed to be handy just in case, but as it turned out, I never had surgery.)

I arrived in a light coma, with some broken bones in my head, in my occipital cavity. I was mostly unaware of my surroundings in the ICU where I stayed for 10 days. I remember vivid dreams, profound loneliness and fear. I know that I did have visits from my husband and my frightened 14-year-old son, but I mostly felt terror and a strong desire to go home.

One night I dreamed that the nursing assistants were holding me captive. In fact, I think I was in restraints then, because one of them told me the next morning that I was making her life miserable by not staying in bed.

I dreamed I was taken to a farm in Burlington County where the attendants were setting out lines of cocaine and urging me to take some. I couldn’t believe it. Finally I tried to run away to the area of the Tacony-Palmyra bridge so I could make my way home on Route 73, which goes directly (albeit distantly) to Conshohocken.

Another time, I dreamed that my husband had decided to "kidnap" me from the hospital, bed and all, and take me to a show in Atlantic City.

A little reassurance would have helped a lot, but at this hospital, no one offered it.

And oh yes, there were the screamers. One therapist told me later that this was typical after a brain injury, and anyway, ya didn't want to sedate someone to within an inch of his or her life at this particular time -- especially if one was looking for a patient to recover brain function in time. This added to the terror. Once or twice I begged a nurse to move me so I need not hear this, and she did.

After a couple of weeks, I was sent to the affiliated rehab hospital for physical, occupational, and, for a while, speech therapy.

At first, occupational therapy consisted of someone’s waking me up at 6:30 or 6:45 a.m. (the crack of dawn for someone like me who had worked evenings for morning newspapers during most of 35 years) to take me to the shower, where a chair waited for me to sit down while I got clean.

Then I returned to my room to get dressed for breakfast, which was served just down the hall. Someone took me there in a wheelchair.

One of the few positives at the hospital was good food. I almost couldn’t believe how good.

Then someone would come to bear me to my next therapy session — I remember one instance when someone came to my room to tell me that she had been scheduled to see me but wouldn’t that day for reasons I don’t remember.

Physical therapy was the hardest. Considering that before my accident I had walked all my life since I was 1, it was extraordinarily difficult. They ran me through 15 to 20 minutes on the treadmill each time, and other stuff that an inactive person like me found unpleasant. I hardly ever wanted so much as to walk my late dog.

Balance was an issue, and has continued to be. My inpatient therapist, whose father was an ophthalmologist and who knew something about eyes, spotted that my right eye moved in a kind of nystagmus-like way when I lay down. This, she thought, would explain the vertigo.

In other words, I had a condition known as Benign Positional Paroxysmal Vertigo. It supposedly occurs when crystals in the fluid of the inner ear are knocked out of place.

There was a treatment for it, however. Hee hee hee. Carolyn took me to a cheerful Chinese doctor who treated the BPPV by hanging me upside down on the examining table. It pretty much did the trick, though I ended up having several more treatments for the BPPV.

And there was a truly satanic device called the Balance Master, wherein therapists chained you in so you couldn’t fall but then caused the machine to rock in such a way that you were sure you were going to topple backward.