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The Undiscovered Brain (revisited)

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Human BrainIt has been a while since I reported and commented on progress in understanding the minimally conscious state. Over recent months some exciting news reports have appeared which I feel it is appropriate to refer to here.

Firstly this article appeared in The Guardian last November about Rom Houben, a man who laid for 23 years, assumed to be in a Persistent Vegetative State (PVS), the state of being unaware of everything around you, oblivious to the world, when in fact he was hearing everything. A neurologist at the University of Liège (Dr Steven Laureys) examined him with new scanning technology and found that his brain seemed to be working quite normally. Most of the article continues to talk about an ability to communicate that was also thought to have been found, which it is now thought was a mistake, but a notable point comes toward the end of the write-up. The Guardian article quotes Dr Laureys, who is very experienced in these cases, as saying that of 44 patients he examined who were diagnosed as being in a vegetative state, 18 of them responded to communication. Furthermore, while it is not uncommon for patients with reduced levels of consciousness to have as little as one assessment by a professional which will determine their diagnosis, Steven Laureys said that such patients should be tested ten times, and that such states were like sleep, having varying stages which need to be monitored. This is an observation that I fully support from my experience with Ladan, there are times when Ladan is clearly out of it, there are times where there seems to be some very basic responsiveness to what is happening around her, often including to actual words being said, and then there are much less frequent occasions where for about 30 seconds or so she can interact with her eyes.  There is a clear difference even in Ladan’s appearance when she is in the most responsive state but it would be impossible to make a plan that would ensure  an expert examined her or scanned her during such an infrequent opportunity, even if she was tested ten times that moment would probably not be caught, but such a policy would probably suffice to catch Ladan at a time that she wasn’t at her least responsive. Luckily for Ladan she was found to have a degree of awareness on her second clinical neurological examination, but it could have taken more.   The more accredited professionals do generally maintain that there is no sure test that can prove an individual is not aware of what is happening around them, all the tools that science has can only help to make an educated guess and, more importantly, attempt to discover if somebody is suitable for a programme of rehabilitation. Unfortunately finding  some degree of awareness is not in itself sufficient for finding a rehabilitation method.

In this blog post a few years ago I referred to a study in Cambridge that, in the long term, may offer hope of rehabilitation techniques to the least able of minimally conscious patients, as well as uncover signs of consciousness in patients otherwise held to be in the persistent vegetative state.  I also looked at some of the potential dangers of misdiagnosis of PVS. That posting referred to a study by a team in Cambridge, including Dr Adrian Owen, in which a woman who was thought to be in a persistent vegetative state was asked to imagine playing tennis while she was scanned using a relatively new technique (fMRI) with an MRI scanner. The resulting changes in the  images on the scan were much the same as the changes witnessed in a fully conscious individual carrying out the same request.

At the beginning of February Channel 4 News ran a story about further research into this technique by teams led by both Dr Adrian Owen from Cambridge and Dr Steven Laureys from Liège.  Again taking a patient formerly thought to be in PVS, the same request of  imagining playing tennis was made to the patient but this time it was to be used  by the patient as a tool to indicate yes or no responses to questions.

“It works like this,” Dr Owen said, explaining the idea in this  Sunday Times article back in 2007, “Say you have a patient who responds positively, with proven volition, to the command ‘Imagine you’re playing tennis.’ You can then progress to an easy yes-no response.” […] “To coin a phrase, it’s a no-brainer. If the answer to a question is yes, the patient thinks of playing tennis; if it’s no, the patient doesn’t think of playing tennis.”

Below is a news clip from Channel 4 News adding a little more detail about the successful experiment:

Where this technique is currently going to be most important is where it will make a difference to the long term plans for the patient. Here in North-East England the policy of medical and care staff is – as I understand it – to act on the assumption that even somebody thought to be in PVS may actually be aware and understanding everything around them, obviously there is no extra harm that will come from talking to somebody who can’t hear you, but it is not kind to completely ignore somebody who is fully aware of everything you are saying. Ladan is known to have some awareness and the nursing home she is in would, as a rule, treat her on that assumption even if she had been diagnosed as being completely unaware, but still I get disheartened when occasionally a carer will come into her room and assist with her needs without saying so much as a “hello” to her. I cannot imagine how much the frustration of being unable to communicate would be made worse for an individual diagnosed as being in a persistent vegetative state if it was acceptable to ignore them as a matter of policy because of their misdiagnosis. But beyond the doctors and carers there are – of course – the families, and a black and white misdiagnosis of PVS may make them even more likely to just stand and stare at a relative who would actually love to hear them talk to them. Dealing with trauma in a family is difficult enough as it is, if a family are informed through a misdiagnosis that their presence cannot possibly be known to their loved one, then the chances of the patient losing the support of their family must be greatly increased. It is important that families are not given assumptions of probability as fact, they have tough decisions to make ad should know the full picture, even if that picture is full of  “probably not“s and “we don’t know“s, rather than definitive statements.

It should be noted that finding the ability to communicate with an individual formerly misdiagnosed as being in PVS is rare, even when some degree of awareness is found it is not usually a guarantee that they fully understand everything that is going on around them. It is possible that somebody who can communicate in a scanner may also not be fully aware of what condition they are in, though they may even falsely believe themselves to be, but what this offers, even at its most basic, is access to more facts upon which assumptions about a brain may be based. At its best it gives a patient a voice, though possibly not a say, in decisions over how they should be treated.

Looking into the future, these discoveries may help to provide rehabilitation techniques to those people in minimally conscious states who cannot react with the outside world in a consistent way. Current rehabilitation techniques need something to hook onto,  a consistent physical response, such as a finger that the patient will almost always move when requested. fMRI is still a relatively rare and very expensive facility, but it offers that ‘something’ to hook onto in patients who have a reaction that shows up in the scanners imaging, and that means that either by using fMRI scanning regularly as part of a rehabilitation programme, or by finding other ways to detect the responses that using fMRI scanning has uncovered, the potential exists for a greater number of individuals who fall into a minimally conscious state to embark upon a programme of rehabilitation.
 
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Ladan update, 21/10/08

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In my last update about Ladan I mentioned that I was hoping to try a Parkinson’s medication called Levodopa with Ladan because it has been found to reverse minimally conscious state in a number of people around the world. I had managed to find somebody who served on a coma recovery board in the United States who was a consultant in Argentina with experience in using the medication and this consultant was kind enough to give me recommended doses and other relevant information. When we came to starting the trial our doctor pointed out that the doses were higher than anything she had seen recommended for use in Parkinson’s disease and so, in case of any problems, we would not be able to go higher than half the recommended dose. We decided to continue as sometimes the lower dose has the desired effect, today was the last day on that dose and we are now back on a lower dose for a few days before stopping with the medication completely. I will write in more detail about this when the medicine has been stopped, and I will include mention of some encouraging observations, but there has been no obvious major change in Ladan’s condition as a result of the medicine to date.

Friday, just gone, was an important day for me. It was exactly one year on from Ladan becoming very ill, which turned into one of the worst events of my life. The following day, the 18th October, Ladan was rushed to hospital and was clearly struggling. Her condition worsened over the next 20 hours and the doctors where doing nothing at all. Eventually, after a lot of talking about whether they should do anything, they stepped in and prescribed a medication that she has an allergy to. It took a while before Ladan was on the right medicine and recovering… and even when her chest started recovering her treatment was such that she had terrible pressure sores all over the back of her body… and this was with myself and my mother-in-law being there 24*7 and pressing for Ladan to get the care she needed when required. There were other factors that made it an even worse day, and ironically the date had a personal significance which meant I wanted to spend some of it very peacefully relaxing with Ladan while enjoying my favourite soft drinks… but Ladan wasn’t well enough for it to be relaxing in the end.

This year, then, I wanted the day to be something more special, so I arranged to take Ladan back to the flat (where I sleep a little at night) for the afternoon. It was just the two of us this time. It was so peaceful. No mater how quiet you try to make things in the nursing home there is always a tv or a loud conversation, or some rushing in the hallway outside, keys jangling, trolleys rolling… always something you can hear… and the chair I am sat on right now, next to Ladan, is functional but not good for really relaxing in. Being relaxed with Ladan by my side, listeneing to some favourite tunes, looking through a few old photos, it was relaxation like I had not had in a very long time. The staff at the home also commented on how relaxed Ladan was when we returned.

The cold weather is setting in now and I am really hoping we don’t have to face another hospital nightmare this year. Right now, Ladan thankfully seems well and settled.

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The Zolpidem Question

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A few weeks back Ladan started a two week course of a sleeping tablet called Zolpidem. I blogged about the fact that in a small but not insignificant number of cases Zolpidem has been found to awaken people from coma like states for the duration of its effect (around a few hours).

I have previously mentioned that there were no dramatic results from using the medication with Ladan, but that there may have been some small changes. A full update should follow in the next week or two, but this entry is to explain the delay in reporting how I feel the trial went, and to give some indication of what happened during the trial. In this blog entry I am not going to differentiate between what was observed by staff and what was observed by family members.

Zolpidem is a short acting drug, it usually starts acting within 15 to 30 minutes and stops working after a few hours. About 15 minutes after the drug was administered Ladan would typically go through a period of increased rapid eye movements for a period of around 10 – 30 seconds, with her eyes closed, and then seem generally sleepy. She remained arousable by movement or speech, but was not generally as agitated when aroused. Ladan often has quite normal reflexes which are superseded by extensive behaviour (stretching out her arms and legs) if she remains disturbed or uncomfortable for a “prolonged” period. That “prolonged” period may be a matter of seconds, but can often be avoided if you react to the non-extensive reaction and remove the stimulation, or otherwise relax Ladan, soon enough. During the course of the medication Ladan was found to be generally less extensive and her reflexes appeared to be slightly better refined. Ladan’s individual fingers were, for example, felt to react better as individual fingers when touched rather than as a collection of fingers reacting together. There were also times when people felt Ladan was more alert or aware than usual, and that her reactions to speech were more natural. Most of the the possible differences that were observed were not new, but were either more frequent or, as in the case of being more relaxed and less extensive, more prolonged.

One of the more notable facts about most of the observations referred to above is that these “differences” were being observed throughout the whole time period of the trial, that is to say they were not limited to the few hours during which the drug would typically have an impact, the “difference” was still being noticed at least 21 hours after the drug had been given. I have three possible explanations for this, firstly it is possible that some of the “differences” were seen because they were being looked for, secondly I theorize that some part of the mind was put to rest by the tablet and that this enabled better reactions when the resting effect wore off (this would require a medical opinion, which I hope to get soon), my third explanation is that I was personally present more of the time. I have previously mentioned in blog entries that there appears to be a direct link between how settled Ladan is and how much time I spend with her. Many previous times where Ladan has seemed to be more aware have also followed on from an increased presence from myself. As I was arriving to be with Ladan from an hour to an hour and a half earlier each day and not popping out as often it is likely that at least some of the improvement would be down to this, rather than the medication.

So, following the two week trial Ladan had a week of how things were previously, and now I am trying to spend extra time with Ladan for a week to see what effect that has. It has so far proved difficult to spend the extra time with Ladan, so to get a farier comparative picture this might stretch on a little beyond one week. Once I have a better idea of the difference between “Ladan with more James” and “Ladan with Zolpidem and more James” I will be writing up a report on the differences for the relevant medical staff to look at. There is a small possibility that they will feel the medication may be worth trying for a longer time period, but otherwise there are other things that have had significant results on people in conditions similar to Ladan’s which I hope to research further and, if appropriate, discuss with Ladan’s doctor.

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Sleep more or awaken?

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In the coming week Ladan is likely to be given a medicine called Zolpidem. It is commonly used as a sleeping tablet but when, several years ago, somebody in a persistent coma-like state was given the drug to make them more restful they miraculously awoke and started speaking. Several hours later the drug had worn off and the patient was unconscious again. The tablet has since been tried with many people who have suffered some form of brain damage and in many cases the success has been repeated.

For people in a persistent vegetative state (long term coma with no signs of awareness or communication) or a minimally conscious state (long term coma with some signs of awareness but no reliable communication) the success rate of the medication in having some form of measurable benefit is approximately 10-15%. In less severe cases of brain damage the success rate climbs up to just over 50%. In all cases where there is success there is the possibility that continued use brings about gradual recovery from the underlying condition.

Zolpidem was in the news a lot last year for these unexpected results being experienced around the world, an article that appeared in The Guardian can be found here.

Zolpidem is not the only medication that has been found to bring recovery to people in long term coma-like states. A drug called levodopa, which is generally used for treatment of parlinson’s disease has been found to have a much more dramatic and long lasting effect on people in these conditions and this has been known about for a long time now.

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Infection and Immobility

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I am pleased to report that Ladan seems to be pretty much over her chest infection, she had a five day course of anti-biotics and is certainly more settled now.

For people in Ladan’s condition, or any condition that results in a large degree of immobility, simple infections can be a very big deal. With chest infections a lack of movement means that secretions have more of a tendency to stay stuck in the lungs and what would be a trivial infection for most people can quickly become a life-threatening disorder such as pneumonia. It is probably the case, and certainly is my experience, that most people with reduced mobility die from infections which are picked up in the environment they are being cared for rather than from anything related to the cause of their condition. Taking the case of people who have had strokes or other brain damage, there is very little that can actually go wrong from their actual condition if they are stable, complications tend to only arise from infections they acquire.

People in minimally conscious states also tend to suffer a serious set-back in terms of alertness
when they get infections. A simple cold can cause somebody who was looking around the room regularly and occasionally seeming to answer questions with a discernible blinking pattern may become very sleepy for up to a month just from a few days of a cold.

These matters are not helped when it takes several days of illness before medical staff take a proper look and prescribe the required medication, or when it takes several days for medication to be acquired and started… and such problems are not at all uncommon.

It is, therefore, with some relief that I can report that Ladan does not seem to have taken a very significant knock from this infection and was already seeming fairly alert again for some of today. Thankfully this infection was spotted quickly and dealt with rapidly. Assuming it is all clearing up now, it has been nothing significant.

Please remember to send your messages or memories to Ladan via this link.

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The Undiscovered Brain

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There have been two encouraging items in the press recently about patients diagnosed as being in a persistent vegetative state (PVS), a condition where it is believed the brain has no awareness of the world around it but is able to support basic life functions such as breathing.

In Cambridge a group of scientists used a special scanning technique (called fMRI) to discover that a 23 year old woman could hear and that her brain responded to requests to imagine activities in exactly the same way as the brains of healthy volunteers did. On Tuesday this week The Guardian printed a detailed article updating a story they first told in May this year about the effects a sleeping drug called Zolpidem has been having on patients in the same persistent vegetative state, as well as on other patients with brain related problems. Beyond these recently reported findings there are also interesting results to be found from people using a drug called Levodopa which is commonly used by people suffering from Parkinson’s disease and there are the interesting scans and testimonies of people who have come out of long term states of reduced consciousness which add to the weight of information which has serious implications over what assumptions can be made for the “unconscious” brain.

As the husband of a woman in a state of impaired consciousness I have a first hand perspective of the assumptions that are made about people in this kind of condition and why these discoveries are important.

There are two main areas of interest that these discoveries have an impact upon, they are the understood level of awareness of the unconscious brain and implications for continuing care and treatment.

There are several classifications that are often given to people in a reduced state of consciousness, in addition to the persistent vegetative state there is also the minimally conscious state (MCS) where there is some identifiable awareness of the environment around and the Locked-In state where the individual is thought to have all their cognitive functioning in place but is unable to move or communicate but for, possibly, the blink of an eye. These are basic summaries rather than scientific descriptions.

In reality even people who are diagnosed as being in PVS will often have relatives and/or carers who are sure that they see regular signs of awareness. What the research in Cambridge has shown is that in at least one of these cases there was some awareness which would have remained undetected using standard methods of testing.

To understand the importance of this discovery you have to know what happens to patients who are in any form of unconscious state where awareness is difficult to detect, and to their relatives. Here I can use Ladan as an example, though I have also come into contact with a few more patients and their families over the last couple of years.

When Ladan was unconscious after her first haemorrhage in November 2004 she quickly recovered to a point where she was able to obey simple commands and track with her eyes, though sometimes she would be more asleep than at other times. A Registrar Neurologist spoke to me and other members of Ladan’s family while Ladan was in this state and on a bed in front of us. He told us that Ladan was not aware of anything, she could not hear anything, she could not tell that her family was around her and that it was unlikely that she ever would have such awareness again. He told us that it is common for family members to imagine such awareness exists when it does not and that we should accept that we were just seeing what we would like to see. Stood there, in front of Ladan, he asked us to confirm that we understood what he was telling us. A couple of days later that same registrar’s face was a beacon of happiness as he himself witnessed Ladan following everything he asked her to do with her eyes and face. He had seen much less evidence than we had seen, but until he had seen it for himself he was convinced that we were imagining it.

Now imagine if, at that earlier moment, Ladan not only heard everything that the registrar had told us but that it was followed by us saying “well, I guess that’s it then”, and leaving her to be by herself for the most part of her life from that moment on. Thankfully I knew myself to be of sound enough mind to be sure that what I had been seeing was real and I immediately leaned over and said several reassuring words in Ladan’s ear as soon as he left her side to assure her that I knew she was aware, could hear, and would not be left alone.

This is just the first stage at which this assumption, that an outward lack of signs of awareness is evidence that a patient cannot really see, hear or have awareness of their environment, might have a serious impact on their future care and support.

Because people in a reduced state of consciousness are able to live with minimal assistance (such as being fed and cleaned) they are generally kept in a care environment where there is a strong likelihood that they will pick up serious infections or develop other complications, sometimes related to how well they are looked after, which will require identification and treatment. Relatives are often asked if they would like their loved one to be treated in the event of serious infection or left to deteriorate, and this decision is often made on the basis of an assessment that the patient has no awareness of their environment, no ability to tell that loved ones are there, no ability to see or hear, no perception whatsoever. Even if one close relative, most likely the one who spends most time with the patient, is certain that they are seeing real signs of awareness there, it is still likely that other relatives will hear what the doctor is saying and attempt to convince the closest relative that they are imagining everything and should focus on their own life more instead of holding out hope for somebody who, they are told, is all but dead. So although an assumption of zero awareness does not affect whether somebody lives or dies in the earliest stages of their continuing care, this belief can have a major impact on how long the patient will continue to live once they start picking up infections from the hospital or care home environment.

The recent study in Cambridge should ideally sound as a trumpet blast to doctors who boldly state that patients cannot hear and have no awareness, and make neuro-specialists much more careful in the way they describe a patient’s condition. Ladan’s two neuro-specialist consultants have always been very open minded in their words and actions.

There are a number of patients who recover from long or short term loss of consciousness with at least some memories of their time when they were theoretically unaware of anything around them, but these memories are often vague or inaccurate and are therefore probably dismissed too easily. Although the study in Cambridge may not seem to prove very much it does remind everyone that any current diagnosis of PVS is an assumption based on tests which, it is known, cannot give a full picture of what the brain may or may not be doing.

There may be a lot more loving and optimistic care and support for patients if these assumptions were stated as the assumptions that they really are and not presented to families as scientific facts, and with more support, and more to live for, more people who were thought to lack awareness might even find the strength to improve to at least some greater degree.

Beyond the implications on how infections are dealt with and how a patient would be communicated with and supported with a more open-minded assessment being given to relatives, the discoveries that are being made with Zolpidem and from newer scanning techniques with recently improved patients may have important implications for the way that patients with reduced levels of consciousness are looked after and treated.

There are now several reported cases of people who have had severe brain damage showing areas of brain as ‘dead’ on a scan and then, after some unexpected future improvement, had a scan which shows activity in those locations. This has always been considered impossible as the brain is thought to be an organ that cannot regenerate to repair itself. The trials of the drug Zolpidem in South Africa have uncovered scan results of this nature and have raised the suggestion that brain tissue might be able to hibernate rather than die. Such a suggestion raises questions over what potential exists for recovery following brain damage.

Zolpidem and Levodopa are two drugs that have had very unexpected results on patients with reduced levels of consciousness. Zolpidem is a sleeping pill which was discovered to have amazing results when a brain damaged patient who could not communicate was agitated and given the sleeping pill to calm him down, shortly after administration of the drug the patient turned to the nurse and seemed to focus on her, the nurse asked the man if he could hear her and he replied “yes”. It is not yet known for sure why the drugs have positive effects on a large number of people but there is a theory that the traumatized brain develops an increased sensitivity to a neurotransmitter in the brain called GABA, GABA inhibits responsiveness and is thought to be part of the brains mechanism for dealing with pain, the theory is that Zolpidem is stopping this oversensitivity to GABA and so allowing the brain to become more responsive. This theory falls nicely in line with the observations that Levodopa has an impact on people in reduced states of consciousness. Levodopa increases a neurotransmitter called dopamine in the brain, which is important for movement and cognitive function, dopamine neurons are known to be suppressed by GABA. Beyond the obvious hope that success stories relating to these drugs brings to the table it also may raise some questions over the fairly common use in PVS and similar patients of a drug called Gabapentin which is designed to imitate GABA neurons in the brain and is used to reduce a patient’s responses to pain or agitation, it may even be prescribed for use instead of handling the patient in a comfortable fashion. If there is truth to the theory that reducing sensitivity to GABA is the key to Zolpidem’s success, and it is seen that continued use of Zolpidem has a cumulative positive effect on patients, then it might be that using drugs like Gabapentin is having a negative long term impact on any chance of recovery.

While this blog entry may be too specialized for many of you who come here for updates on how Ladan is doing, I hope it will be encouraging for the steps that are being made, however small, toward better understanding the states of reduced consciousness that people fall into. The articles below, particularly the Guardian’s G2 article, make for interesting reading.

Further Reading:
G2 Article on Zolpidem
BBC News – Vegetative Patient Communicates (with video)

Diary, Ladan

Ladan, One Year On

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Although Ladan fell into a coma on 4th November 2004, it is now a little over one year since we believe Ladan had her last haemoorhage, coming at the end of nine or more traumatic months of medical upsets. Since then Ladan has remained in a stable condition.

Ladan shows only minimal signs of any consciousness, that is to say that she opens her eyes, often responds to auditory, visual, tactile or gustatory (taste) stimulation, and on rarer occasions will apparantly track with an eye (her eyes have remained divergent since her last haemorrhage) or respond to a series or requests with appropiate blinking. Ladan’s breathing often changes according to her state and this response is also frequently observed when changing the topic of discussion to something personal to her.

Improvement cannot be measured on any large scale, but physical stability still slowly improves, such as blood pressure and temperature stability, and when Ladan is going through a more responsive period blinking responses have been observed more frequently and probably for longer durations, though such events are still relatively rare. Earlier reports in my blog have seen Ladan more responsive than this but that was prior to the last haemorrhage, in the same way as Ladan was communicating by nodding and shaking her head prior to the seizure in December 2004, each event brought a serious set-back in the path of recovery, which is why a year of stability is, in itself, something to be thankful for.

Since May we have been in a care home called The Minories in Jesmond, Newcastle. It is a very friendly home and much quieter than the Hawthorns in Peterlee or the hospital was. Professional input into Ladan’s case is minimal and almost exclusively clinical, but that is pretty much the how it was at The Hawthorns and the hospital anyway. Ladan has not, as yet, had any serious problems at The Minories and seems very settled here, I nearly always come in to find Ladan looking settled in the mornings. Myself and Ladan’s other family members are also made to feel very welcome here day and night, which I am sure has a possitive influence on Ladan too, probably in more ways than one. There are a few problems which are taking a long time to get sorted out, but so far Ladan seems to be doing very well there.

There is a new rehabilitation centre opening in Newcastle at the end of the year which we still have the option of going to if things don’t seem adequate at the Minories, but I am hoping that will not be the case. In the longer term, if there is no major recovery in the near future, I still plan to get Ladan out of the care home environment and into a real home environment where I can be there for her in a more normal fashion, the medical professionals want Ladan to remain in a care home environment for a significant period of time to be sure that she is stable enough to move into a real home.

Diary, Ladan

Ladan Update

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Ladan’s condition has remained quite similar, she has been very stable for the most part with no major upsets since July. For the last week or two Ladan has been much sleepier than usual, this does coincide with some changes in her medication known to have this potential side-effect and we have mentioned it to Ladan’s consultant but he hasn’t shared his thoughts on it as yet.
Plans for Ladan’s continuing care have been changing frequently over the last 7 months, though Ladan has remained in the same room in the Hawthorns neuro-rehabilitation centre in Peterlee throughout this time, finally it looks like we may have a plan in place that will involve Ladan moving back to Newcastle in the coming weeks.
On the 24th April Ladan is due to go back, for one week, to the General Hospital in Newcastle where she will have a few tests and procedures carried out. After that it is hoped that Ladan will move into a care home called “The Minories” which has a bed available for her, arrangements have not yet been finalised for this.
Until a couple of weeks ago the plan was for Ladan to remain in Peterlee untilo January 2007 when a room would hopefully be available in a new regional centre for neuro-rehabilition currently under construction in Newcastle, the alternative of moving to The Minories does not provide the same on-site support of rehabilitation professions but instead calls in the expertise from a community disability service.
I always give a more in depth account of what has been observed with Ladan since the last update, it is still the case that in most respects Ladan does not seem to have recovered to the point she was at prior to coming to the the Hawthorns in Peterlee, a point at which she had an unexpected additional haemorrhage which resulted in Ladan becoming much sleepier, less responsive and left her eyes in a very divergent state. In comparison to that point in time, however, I would say that a very little amount of progress is apparent.
As I have mentioned before, Ladan was being tested using a system called SMART, this testing system examines responses to stimuli for each of the 5 senses and records the response on a scale that has several potential scores in between no response and a normal conscious response, the tests are repeated several times and then the results are collected to show the best consistent response for each sense, and also the best isolated response. Ladan’s best responses were generally isolated ones, particulary in touch and taste, responses were also recorded for hearing but the Occupational Therapists carrying out the tests did not record any responses to sight or smell. The kinds of responses I am referring to above are reactive, and what differentiates how “normal” they are comes down to how much the stimulation seems to be recognised (ie. a good taste or a bad taste or where on the body you are being touched) and how sensible the response is (such as grimacing and spitting out a bad taste or pulling away from the location where you are touched). Most of the responses that are observed in a SMART programme are not generally used to determine a person’s level of consciousness, they’re only relevance is in drawing up an action plan for improved continuing treatment.
Whilst the results found are relatively basic this is the first time that any assessment has confirmed that Ladan does react to some things other than painful stimulation, such as sound. As a family we were of course aware of this and of certain other consistent responses that Ladan has, such as to light, but being able to tell the therapists that Ladan will respond in a certain way to certain stimulus doesn’t have a major impact on the way that tests are carried out and what results are recorded. The theory is that when the testing program is complete Ladan’s strongest sense or senses can be indentified and a programme of stimulation can be drawn up to focus on that.
In Ladan’s case the SMART testing is unfortunately on hold as the Occupational Therapist who has been most involved in Ladan’s case has unfortunately broken her shoulder on a skiing trip and has been out of action for a while. She was hoping to continue after Ladan’s visit to the General Hospital but if Ladan moves to The Minories she will no longer have responsibility for her. The testing has apparently shown the Ladan is best suited to have single mode stimulation, that is to say sound or vision or touch or smell or taste, of course, in reality it is hard to remove all light and all sound from Ladan’s environment so it is not possible to do this completely.
Following the initial SMART results a structured programme has been drawn up for Ladan which encourage periods of substantial rest following periods during which stimulation may be present. I was bizarrely unpopular for wanting to ensure Ladan’s comfort and lack of stimulation during these periods by remaining present and keeping the curtains drawn and door closed to minimise noise from the ward and outdoor light, but you can read more about that in the “Awareness” and “James update” sections below.
Moving on to more of those “little” things, Ladan continues to become slightly stronger physically in her movements when she does move, Ladan doesn’t move much other than when she is irritated or coughing. There are also many occasions when I feel that Ladan seems to join in with movements when I ask her too, this has always been the case since few days into her coma, though I am only aware of one other care worker having believed it to be the case… it happens when I am firm with Ladan in requesting that she joins in and I tell her clearly if I feel I am doing all the work, it can take a few requests but there is something, a change, that comes about, and this has also become stronger with Ladan’s gradually increasing strength. I mentioned it to Ladan’s consultant physio in the hope she might be interested in experiencing it and giving me her opinion on it but she wasn’t, they have their own ways of checking for participative abilities which they have tried without possitive result.
I’ve been smiled at once or twice…back in January I was between places to stay and decided to book into a Bed and Breakfast for a couple of nights, this allowed me to spend even more time with Ladan than usual. On two of the days that I spent more than 12 hours around Ladan she, toward the end of the day on opening her eyes after some rest seemed to clock me still in the room and smiled, the first time was for a few seconds but the second lasted nearer 20 or 30 seconds and I had a chance to mentally check and recheck what I was seeing by noting the other changes in her face that the smile brought about. It was a real joy to witness, Ladan hadn’t smiled like that since before the seizure that upset her recovery in December 2004, and hasn’t done it since either.
Diary, Ladan

Awareness

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Unfortunately the staff aren’t keen on us visiting Ladan from too early in the morning as they are very busy with all the patients, so it is not easy to spend as much as, let alone more than, half the day near Ladan as I did for those few days. I have always been aware that Ladan finds myself and other immediate members of her family very comforting as a presence, and it is also me considered opinion that there is some sort of cumulative affect on Ladan as well, that the more time we are not around her she becomes less settled and the more time that we are around her she becomes more settled. These beliefs come from repeated observations of certain patterns of behaviours in Ladan, from the earliest days of her time in the Newcastle General Hospital to the current day. The most frequent and clear indicator of this is the immediate settling influence that Ladan’s mother and I appear to have upon arriving to see Ladan, if Ladan is already in a wakeful state, however long the nurses say that she has been wakeful, she is often asleep within 5 or 10 minutes of our arrival. Here wakefulness and sleep refer mainly to whether Ladan has her eyes open or not, most people in comatose states have periods of having their eyes open, it is only in very deep comas that eyes are constantly closed.
If left for a considerable period of time alone, such as 15 hours or more, and particularly if she has such long gaps without company for several days running, then Ladan often appears quite agitated on arrival, very wide eyed, slightly tense, what would best be described as a frightened look, and then the affect of my mother-in-law or myself arriving is even more obvious and quite quick. I cannot say with absolute certainty that Ladan still does this as following on from my experiences in January where Ladan smiled after having company for extended periods I have rarely allowed Ladan to be alone for 15 hours.
Something else I like to do with Ladan is have family and friends speak to her on speaker phone occasionally, my mobile phone has this feature. When Shahla, Ladan’s mother, is unable to visit she always speaks to Ladan this way and occasionally friends do too. The more awake Ladan appears before this the more she seems to react to it. It is hard to say what the reaction is, the way her eyes move often seems to change the moment somebody else starts speaking over the phone, there is no way of knowing whether Ladan understands what is being said or even who is saying it, the best medical opinions would probably suggest that she can’t, but there is a response. There has always been something of a response to speech with Ladan anyway, with exception of a few of her most turbulent periods in the General Hospital, which were ironically the periods during which she had been assessed prior to the recent SMART testing. I am sure i have mentioned many times before that Ladan’s breathing and state of relaxation have a tendency, particularly when she appears wakeful, to change with the topic of conversation, Ladan’s breathing often becomes deeper when conversation changes to more emotional matters. This has been noticed by many friends who have visited and a correlation was also noted between breathing and auditory stimulation on at least one occasion by the Occupational Therapist carrying out the SMART programme. It is also not uncommon for Ladan to turn her head toward a conversation if relatives are speaking and then a less familiar third party comes in and makes conversation relating to Ladan.
Many people ask if Ladan is aware of us being around her. I usually answer that I believe she is aware at some level on the basis of the experiences I have described above.
It is quite likely that Ladan is not aware of things in the same cognitive fashion that most of us would be. It is not impossible that she does have some degree of cognitive/intellectual awareness but old test results and Ladan’s general state would imply that she probably doesn’t, at least not to a great extent. As a Baha’i I am often reminding myself that marriage in our religion is not just a marriage of two minds and two bodies which will eventually cease to exist in this world, but also of two souls, two spiritual entities which will go on to exist in unity through many worlds to come after this earthly existence. In the Baha’i Writings there is a lot written about this spiritual nature of man, and it is clear that anything that can exist independently of the human body and brain is not impaired by any damage or illness that they are subjected to. From the perspective of religious belief the “true” Ladan is the spiritual Ladan and that Ladan is unharmed by the strokes, infections and seizure that her body and brain have suffered. Since that spiritual nature of Ladan will have a very special link with her family members and, I suspect, her closest friends, it is quite conceivable to me that the presence of such people next to the body with which, so long as she lives, her spiritual nature (her soul) is still connected to will have a positive influence upon her soul and that that, in turn, has a settling influence upon her physical person. An example that the Baha’i Writings give of the powers of the soul to see and hear the world is the phenomenon of deja-vu, the ability that we have to see the future in our dreams. Without the body the soul can travel to any time and any place, it can see and hear all that happens, and according to the Baha’i teachings is capable of itself understanding the realities of what it sees. The soul alone may not, however, have the ability to store these experiences as memories, this is a power that requires the functioning of the brain which stores these experiences and builds them as a knowledge base.
In general when people have been a comatose state for a long period of time and make a recovery they do not feel that much time, if indeed any time, has passed. Family members may have had numerous experiences that they felt showed that the patients were aware of them and responding to them but the patient has little or no recollection of those occasions upon recovery. Assuming that the experiences of the family are valid, and I would expect them to be so, it may be that there is just sufficient brain power to have apparently meaningful responses from time to time but not enough function to record those experiences in memory, or it may be that our spiritual nature, which many religious people, certainly Baha’is, consider to be our true and primary nature to which our bodies and brains are servants, is responsible for the apparent awareness and precipitates a physical response while the inactivity of the brain means that these moments are not being stored in tour repositories of memory and knowledge.
It is certainly all very interesting. Whether any awareness is conceived by the brain or by the soul, the fact that patients who recover do so in the belief that little time has passed while they were unconscious implies to me that any degree of interpretation of the environment in which Ladan finds her self will be done so from the perspective of a 28 year lady who got married less than seven months ago and is in Newcastle to see her family for the first time since the wedding. It makes sense to me then that if Ladan was to repeatedly find herself alone, without her husband or family by her side, in any moments of awareness that she has then it may result in the kind of agitated or frightened appearance that we often feel we find her in after prolonged absence (actually it sometimes happens after short absences too, but moreso after prolonged absence), and it also makes sense that since Ladan – who was ill prior to falling into a comatose state – was always much happier when I was by her side and didn’t feel rested or particularly able to sleep without me there, it will continue to be the case that she is happier in my presence.
As for the meaning or relevance of those more encouraging things that we get to see as relatives who are by Ladan’s side so much, there isn’t much that they can mean other than that if/when Ladan recovers from her current state they indicate some of the abilities that Ladan should hopefully still have upon regaining consciousness. Encouraging things like smiling or following objects with her eyes for several minutes don’t help much with a therapy programme unless they are consistent enough responses to be tapped into.
Diary, Ladan

What’s happened to Ladan?

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[this article was last reviewed for accuracy or updated on 11th September 2006]

Between November 2004 and July 2005 Ladan suffered three brain haemorrages, a severe siezure, some dangerous infections and other complications that required over a dozen invasive brain surgery operations.

Ladan has been in a state of reduced consciousness since a haemorrhage in November 2004 with further set-backs in December of that year and March and July in 2005. Since then, at the time of writing, Ladan has remained increasingly stable. There have been no major improvements in the last year but some very small possitive signs are often observed.

Shortly after our wedding in April 2004, Ladan started to have very vivid and frightening visions that something terrible was going to happen to one of us, probably herself, these visions started to trouble Ladan quite a bit. Ladan also had a couple of bad asthma attacks and then some sharp pains, short-lived and generally in her legs. Ladan tried, as much as possible, to put these things to the back of her mind and take no notice of them, she spoke to her GP and they saw no cause for concern.

While teaching children at the Reading Baha’i summer school in August 2004 Ladan developed some redness, swelling and blisters on her right foot. It seemed that a bee or similar insect had bitten or stung her right ankle, though even then it looked like something of an over-reation. Rather than settle down, the swelling spread to her left foot. It was uncomfortable for driving and walking and the doctors, unsure what the cause could be, prescribed a cream which I spent many weeks massaging her feet with, it seemed to calm the pain and swelling but did not cure the problem very quickly. Eventually a course of steroids fixed the problem.


Ladan (2nd from right) and Persian dancing friends in Reading

No sooner had the swelling died down than Ladan’s wrists swelled up in the same manner and Ladan also got occasional tingling and numbness in her fingers. Again, the doctors could not explain it but steroids cured it. In early October Ladan developed a severe pain in her stomach which kept her in bed most of the time and caused her to vomit almost everything she ate. For the first time in her life Ladan had to take time off work. During the October school half-term holidays we came up to Newcastle thinking a nice break visiting relatives may help, unfortunately it didn’t after a few more days of no improvement and more visits to GPs in the area she was admitted to hospital where she was kept under watch. At that time they still suspected a simple stomach disorder such as gastroenteritis or possibly a stomach ulcer.One week later, on the morning of 4th November, she had sudden severe head pain accompanied by numbness in her face and arms, slurred speech and blurred vision. Doctors assured us that this was a very bad migraine headache until the afternoon when they started becoming concerned it may be something more and set up an MRI scan for her. Ladan spent an hour in the MRI room with more doctors and big books entering the room as we waited, finally she came out and smiled very sweetly as I shared a joke with her and she told me the headphones hadn’t been working in the scan room, then, before the consultants eyes, she fell unconcsious. Having seen the scans they were already aware that this could be a severe bleed in Ladan’s head and they treated it as such, Ladan was to have urgent brain surgery to remove the blood clot, which, I was warned, she may not survive. The family sat together in Ladan’s former cubicle praying and text messages flew out asking others for prayers too.

Following surgery we were informed that she was still alive but only just and the best case scenario was that she would live with severe brain damage for the rest of her life. Ladan was moved to the Intensive Care Unit. From that time to now Ladan has been unconscious. The bleed, we were informed, had been caused by a rare vascular disease called Churg-Strauss Syndrome. The main test for this is a blood test which takes about a week to complete and the results had arrived while Ladan was in the MRI scan. The blood clot had been focussed around the base of the brain and had caused severe damage to the brain stem and the many nerves in that area, this would affect control of breathing, heart rate, blood pressure, and movement. The higher cotrical regions of the brain, believed responsible for thought and understanding, were relatively untouched by comparison.

In the early weeks Ladan seemed to be doing very well, though she was fairly unstable and caught many infections, she was quickly breathing for herself and started understanding and responding to requests, Ladan started looking around and focussing on people and scanning text. Toward Christmas her responsiveness seemed to drop for long periods of time – whereas previously she had squeezed hands on request she would only stick out her tongue or request, or merely shake her head when she was asked if she could do something – she would then be very alert for shorter, less frequent periods. A few days before Christmas her mother and grandmother were communicating with her, getting yes and no answers from the nodding and shaking of her head, and having smiles in response to promises of the meals that would be cooked for her when she was out of hospital.

On Christmas Eve Ladan’s temperature, blood pressure and heart rate started to rise sharply, something that had often happened and was being treated with a particular drug. That night, as much as Ladan’s Mum pleaded while Ladan became more and more unstable, the usual drug was not given. In the early hours of Christmas Day Ladan started having violent seizures (fits), these remained violent for about two and a half hours and continued at a lower level until midnight (nearly 24 hours). Scans were unable to find a cause for the seizure, the likes of which had not been seen in the weeks prior to, or the months following, that night, beyond the conditions that she was left to endure. Scans do, unfortunately, show that the seizure had caused extensive extra damage to Ladan’s brain, now the outer ridges of the brain were damaged, impacting on the cortical regions, and barely any activity was detectable. The scan that nigiht also revealed a small rebleed in the cerebellum, probably a couple of weeks old, which may possibly account for the change in responsiveness observed from around that time.

It took Ladan a couple of weeks before she started opening her eyes again and responding to light and pain, but she did it, and since then it has remained a slightly bumpy ride for Ladan, she has had one or two very stable periods and during them she has done some encouraging things such as manage to move her head or limbs this way then that in response to requests several times running or give very definate blink responses on request, but even when Ladan is at her best she does these things very infrequently, doctors and nurses have not therefore witnessed these signs and scans continue to suggest there is barely any activity in the cortical areas of her brain.

Ladan has undergone a lot of brain surgery since Christmas, mainly in an attempt to deal with a condition called hydrocephalus, a build up of excess fluid in the brain which can cause dangerous pressure levels and reduce consciousness. This is very common in patients who have had a brain haemorage and has a simple treatment but complications are common and in Ladan’s case complications became a standard occurence, having had more than 11 operations since Christmas, often 2 in less than a week. Hydrocephalus itself, surgery for it and infections have often been keeping Ladan back from basic health in her attempt to recover. The underlying condition of Churg-Struss Syndrome however, which caused the original problems, does seem to be firmly under control.


Newcastle General Hospital

At the end of July Ladan had her last treatment for the apparant hydrocephalus, though it is still very apparant on scans. A few days after that Ladan suffered a deterioration in her wakefulness and in her eye control as well as an increase in facial twitching, particularly in and around her eyes. An MRI scan taken at the end of August showed that Ladan had suffered a further small haemorrhage, this time in her brain stem.

Discussions over funding issues between the Primary Care Trust and the different parties involved caused major delays in getting Ladan into a rehabilitation centre. On 31st August Ladan moved to a rehabilitation centre in Peterlee, Co. Durham, but they didn’t have much to offer by way of a rehabilitation programme. At the beginning of May this year we moved back to Newcastle into a care home called The Minories, where we remain to this moment, again there is little rehab input but the environment is quieter and friendlier.

Although occasionally doctors have expressed cautious optimism when Ladan has been well and showing encouraging signs, and although she does show some signs of basic awareness, the prognosis remains almost as poor as it did on November 4th, that Ladan is unlikely to make much progress from her current state.

There are occasionally very encouraging signs of awareness that give hope that Ladan may among that small number of people who do make amazing recoveries from these kinds of scenarios, virtually all of whom do so with great devotion from a loved one.


The Minories

I also have a great faith in prayers, which I say regularly, and there are a wide array of small but encouraging details that collectively raise hope very well.. for one small example among many: in addition to having clear visions of a disaster in the wings Ladan also had an extremely clear and vivid vision of giving birth to a son.

People all around the world have been praying for Ladan, people from all backgrounds and religions, and I truly appreciate this with all my heart.