The neuropsychiatrist and the neuropsychologist

I’m still not quite sure what neuropsychiatrists and neuropsychologists are, or how they differ from  other psychiatrists and psychologists, but I do know that it’s important to get the right one.

In the hospital, after all the negative tests, they sent a neuropsychiatrist to assess my cognitive functioning. It was quite interesting. I’m well above average in ‘IQ’, so he thought I was functioning well, while I was horrified at what I couldn’t do.

I also realized, even through my fog, that it was complex tasks that were the problem.  If I could take an initiative and choose to do something (e.g. speak), I could do it.  If he asked me a question, it took me time to process the question and then to choose to answer it.  e,g, I could say, ‘My name is Ida’. But if he asked, ‘What is your name?’ I could feel the effort and time delay in taking in the question, finding my name in my mind and then telling him it.

If he said, ‘Point to the window!’ I could do that.  If he said, ‘Point to the window and then to the door!’ it took me several seconds to do that – at first, I just froze, but then I found a strategy of repeating his command to myself, and then telling myself what to do, and then doing it.  it took time, but I could do it.  Maybe he’d have found a way of giving me more help if I hadn’t worked so hard on finding a way of doing his tests!

As it was, he decided that there was no systematic sign of an area of the brain that was damaged.  He saw me once  about a month after I was discharged, but that was just to tell me that he couldn’t do anything more to help me.  It was several months later that the local branch of Headway (the brain injury support group) recommended that the GP refer me to a neuropsychologist who was know to take ‘mild’ head injuries seriously.  And he was helpful!

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In which we learn the importance of asking the right questions

I often tell students that 90% of genius is asking the right questions (the next 9% is finding out what the questions mean!).  Only one of the 10 (approx.) medics I’d seen before the nice doctor (see last post but one) had asked, ‘Have you had a previous head injury?’  My mind had gone to a teenage girl with a very bruised face, and I’d said, ‘Well, I had a bang in a car accident long ago, but it wasn’t really a head injury.’ And I’d then refused to talk about it any more. The medic was young, and didn’t follow the question up.

David told the nice doctor that.  Visiting hours were short, so David wasn’t there very much to see me, but he had been observing me even if the nurses hadn’t.  He had once worked on a ward for traumatized war veterans, and he was beginning to work out what was going on. He got me home as soon as he could (the taxi drive was a nightmare for me!).  I stayed in bed, but what a relief it was to be somewhere quiet!

It was at that stage that I contacted Liz, who had helped me with previous depression.  She rapidly understood that I was in no state to come and see her, so she came to our home, took one look at me edging my way into the room and propping myself up against the wall and said, ‘This is not stress (as the hospital consultant had said) – it’s trauma!’ And, as I said in my first blog, a minute of EMDR had me remembering the head injury I had in the car accident when my parents were killed.  It was amazingly similar to the recent head injury – even to the point that my spectacles were bent and scratched in exactly the same way.

What might I have been spared if, at an earlier stage, an experienced doctor had asked that question, ‘Have you had a previous head injury?’ But I never merited an experienced doctor taking time with me:  it was a very ‘mild’ head injury.

Positive interlude: what really matters?

Before we continue with the less-than-satisfactory hospital experiences about which I am still rather angry, I’d like to think about the positive things I took away from that first hospital.

My brothers cared about me:  I didn’t know how much they cared until I got into a state that scared us all.  My husband could cope with it all:  how wise was God’s choice of someone who had trained in clinical psychology and done his placement in a trauma ward!

And I came face-to-face with the question of what really matters in life.  I was people on that ward who had serious brain damage and who were going to be in a worse state than I was for a long time, if they survived.  I didn’t know what was happening to me, or whether I would get better or worse.  I realized that I might never be able to read or write or teach again.  I could hardly even feed myself!

But I thought, ‘We here are all still human beings, made in the image of God, however dysfunctional our brains may be.’  This was a BIG think for someone who has always been pretty near the top academically, and who believed that God had now called her into full time academic work!

Prayer was difficult, because words were difficult, and concentration was difficult, but somehow I knew that God was there.  And I thought, ‘However bad I get, as long as I’m human and as long as I’m alive, I can do THREE THINGS.  I can somehow turn my heart towards God in worship.  I can somehow turn my heart towards other people in love.  And, even if I become completely helpless and unconscious, God can use me to bless other people.’

Does anything else really matter?

The medics for whom I am thankful

I’m thankful for the physiotherapists:  one who helped me with my walking while I was in hospital, and one who help me with coordination and with the pain caused by the lumbar puncture after I came out of hospital.  They took time with me, and gave me exercises that made me feel I could actually do something about my situation.  Most important:  they treated me as a struggling human being rather than as a malingerer who had nothing really wrong and was wasting their time.

The third neuropsychologist helped me to manage my time and to work out how best to function in my impaired state.  She used some Cognitive Behavioural Therapy, which helped ease some of my symptoms.  She tried hard, maybe partly because she was still in training.  But the NHS only offered a limited number of sessions because (yes, you’ve guessed it!) I was functioning at a relatively high level so didn’t merit any more.

All of the neuropsychologists thought that a large part of the problem was ‘post-concussion’, for which there is no treatment other than waiting for it to get better (people say that it continues to  slowly for 10 years, after which no further improvement is very likely).  They realized that the trauma was interacting with the ‘post concussion’, but they didn’t think there was anything much that the NHS could offer to help.  It was not until I’d been working with my present, private, therapist for about 6 months that I began to hope that MOST of the problem had always been the trauma – and that can be treated!

In which we learn that ‘observation’ should involve observing the patient

I said that, through the time in hospital, I was getting worse.  If you had watched me, you would have seen me trying to avoid noise and lights and movement.  There were two noisy patients in the ward, and there were machines, and I would get out of bed and go into the visiting area.  If there were people there, I might sit hunched up in the corridor. A nurse would come and tell me to go back to bed, and I’d curl up and stay put, so she’d shrug and walk off.

You would have seen me walk slowly to the bathroom, start washing and slow down until I stopped and got ‘stuck’.  If a nurse came and found me, she would tell me something and I wouldn’t respond, so she’d speak louder and even shout at me and I’d still not respond.

You would have seen me trying to eat, but in slow motion, and slowing down until I could hardly chew.  After about a week, you would have seen me jumping at any sudden noise – like the nurse shaking out a bed sheet.

There were new nurses all the time, and no shift seemed to pass on to the next what my problems were, so each lot came and told me off for eating too slowly, or shouted at me when I got ‘stuck’, and I tried to tell each one that that was just making me worse.  My husband asked them if they could find me a quieter place, but the tests were negative, which meant that there was nothing wrong with me, so I didn’t merit a quieter room.

The consultant never saw me until the day before I was discharged.  He sent his junior, who came once a day for a few minutes. When the consultant did see me, he looked at my test results and saw that they were all negative, and then took me into the corridor and asked me to walk. I did so – very slowly.  He told me to walk faster.  I picked up a foot and ‘froze’.  So he grabbed my hand and dragged me up and down the corridor.  ‘There you are,’ he said. ‘You can do it.  There’s nothing really wrong. You’ll be fine.  In a few months, all this will seem like a dream.’ And off he went.  When David came to see me a couple of hours later, he found me in a kind of daze – slower than ever, and hardly able to talk to him.

I don’t think that anyone was interested in observing the pattern of my behavior. . . . except for one very nice doctor who came and sat on my bed and talked to my husband and watched very carefully while I was trying to eat my lunch.  She asked David the right question, ‘Has Ida ever had a head injury before?’  But she suddenly realized that I was not one of her patients, and she left and I never saw her again.

I didn’t get better

Three months gone . . .  four months gone . . . I got a bit better, a bit worse . . .  and then my brother and sister-in-law came to visit.  It was so nice to see them, but they were shocked at my state, so I realized that I was NOT better.  By the end of their visit, I was so slowed down that I could hardly walk.  David and my brother rang the doctor, and then David and I were put in a taxi and sent to the hospital.

By the time we got there, and waited to be seen, I couldn’t talk properly or think straight.  the doctor asked me my name, and I couldn’t find it in my mind.  Frightening!

I was admitted ‘for observation’.  Put into a ward of four people.  Taken for scans and given tests and even given a lumbar puncture (which left me with intermittent horrible pain for weeks and occasional milder pain for years).  All tests negative.  But I got worse and worse, often just grinding to a complete halt and becoming unresponsive (although I was aware of it all).

After 10 days, I was told that there was nothing really wrong, that I was having ‘a strange response to stress’, that I would soon get better . . .

Concussion and trauma

Continuing the saga . .   for the few days following the head injury, I would spend time in bed, then get up and try to function, then go back to bed.  I couldn’t cope with noise or light, or concentrate for more than a few minutes, and everything felt strange.  David took me to the doctor again, I was told just to rest and wait again, so we did that, then got referred to another doctor, and so on . .  I slowly got back to doing a little work, seeing a few students, but it was terribly tiring and I couldn’t cope with much.

I got a little better, and went to speak at a conference – had to find someone to travel on the train, I had my meals alone in a quiet place, couldn’t cope with social interaction etc – but somehow managed to give my papers (‘Did they make any sense?’ I ask myself now).

The medics told me I had a ‘mild head injury’ or ‘post concussion syndrome’, so we looked that up.  It’s a label for unexplained ongoing problems following a concussion.  In most people (I think, 60%), it clears after 3 months.  In 60% of the people who are left, it clears after another 6 months.  Etc.  After 3 months, it was clear that I was in the 40% who were left.  Maybe in another 3 months I’d be better?