Today, April 10th, is our 6th wedding anniversary, or our “sugar” anniversary according to British tradition. I decided that today I would share a couple of things from our wedding that will give an insight into the Baha’i wedding ceremony.
Aware that there has not been much written about Ladan here lately I thought I should just write a note to say that there is not much to write, everything is still much as it was this time last year, we are still in The Minories nursing home in Jesmond (“we” is the appropriate term as I am typically here with Ladan between 12-17 hours each day), the home is pictured above from Google Street View, with my car in the foreground. Ladan remains stable and there have been no recent hospital visits, there is no obvious improvement or deterioration of a very significant nature from a neurological perspective.
Hopefully things will change this year, in terms of where we are if nothing else, so God willing there will be something more to write about soon. Meanwhile we ty to make the most of what we have. Below is a picture of Ladan’s bed made to look like a sofa, something I often do to make the room look more homely when Ladan is up in a chair.
Feel free to ask questions if you want to know more detail about anything. Failing that, be assured I have not forgotten that this blog is checked, when there is news I hope to place it here.
As always, I remain grateful for the many prayers I know many of you say for Ladan on a regular basis, it means a lot to me that she is not being forgotten with the time that has passed.
It 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.
I have wanted to write an update about Ladan, but it has been hard to decide what to write with a varied audience. Currently Ladan is in a stable condition not disimilar to that which she has previously been in when she has been stable before. In December Ladan was subjected to a hospital stay following an asthma attack with the possible complication of a chest infection, hospital stays are always fairly traumatic, this time Ladan was admitted following a day of notable improvement but her improvement was slowed by the stopping of all food and medicine while the hospital doctors assessed the situation, on each of the three admissions to hospital that Ladan has had for potential infections over the years there has been a deteroraton in this early stage, which is very worrying when Ladan is admitted while she has been improving, retrospectively it is generally agreed that the last two hospital stays might have been avoided by simply continuing with the prescribed course of action in the nursing home. It did not help that I had popped out when a doctor visited last time and so family observations and formal information relating to improvement in her chest were not communicated to the GP effectively. When Ladan is not well we try to be with her all the time, and when Ladan is in hospital where they do not know her at all this becoes even more important. Even after nearly 3 years in the nursing home most of the staff would be unable to distinguish between the different reactions that Ladan has to various forms of distress, and so for hospital staff who have never even seen Ladan in a relaxed and stable state the task of recognizing her needs is virtually impossible, at least in the nursing home most of the nurses will recognize if Ladan is particularly distressed and can then try to take an educated guess as to why. I never feel particularly comfortable being sat on a female ward all night long, even with the curtains pulled around. We spent the last part of our stay on a very friendly and efficient ward at the Freeman Hospital where, after a few days they managed to find Ladan a cubicle which made life more comfortable.
Although Ladan has remained healthy and stable it took a couple of months for her to return to her best. Meanwhile I am still looking for a flat or bungalow to take Ladan back to (which, although there are plenty of suitable places for sale in todays market, will have to be one already belonging to the council or a housing association for now), when we do that Ladan will be able to have a much better, personalised, environment and level of care, and things will hopefully also be much easier for the rest of the family for the most part too.
During the aforementioned hospital stay I was not able to get Internet access to update the blog (Facebook worked in a simple form), I am now set up to write articles from my phone (this is the first one I am doing this way) so that I will be able to update the blog under such circumstances.
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.
My blog has become a little geekish over the last couple of posts, and I may have another very geekish post up my sleeve soon too, so I thought I should jump in with an update about Ladan as that is, after all, one of the main things for which a lot of people visit this blog.
The summer, if we are still calling it that, has been a very stable time for Ladan, no real fears of infection or other problems. It would have been nice to get Ladan out quite a lot but it has been a very wet summer, finding a good day has been difficult. There have, however, been about three trips out this summer, two to the flat where I spend some of the morning sleeping and one trip – a tiny bit further afield – to Ladan’s uncle’s house in the north of Gosforth. Ladan’s uncle Shahram and his family regularly host Bar-B-Qs and meals at their home for the family and Ladan would often go there while she was living in Newcastle before we got married, indeed I visited there quite often while visiting Ladan up here. It was, therefore, a familiar environment to take Ladan to and also presented an opportunity for the family to spend time with Ladan in a more natural environment.
We are taking small steps forward toward getting Ladan out of the nursing home and into a normal house or bungalow, but things cannot move forward properly until we have a property, and that probably involves a wait of indefinite duration for a local housing association to have a suitable property available. Our case manager is fixing up a meeting with somebody who can help talk me through the various other options that might exist and their consequences.
A long while ago I mentioned a medicine called levodopa which I was hoping we could try with Ladan some time. It is normally used in Parkinsons disease but has been found to have a dramatic influence upon a small number of people who are in a minimally conscious state. There have been a few barriers to trying this medication, including a lack of clear information on how to use the medication in this situation and questions over Ladan’s stability. Ladan’s GPs have been very positive in this matter, as they have been over moving Ladan into home environment, and we now seem to have overcome most of the barriers, so it looks promising that we may be trying this medicine very soon. I will, of course, update this blog with the results of the trial… I might also write a fuller introduction to what it is all about in the next day or two… encourage me to do so if you would wish to read it.
The colder autumn and winter months are, generally, the ones where Ladan is at greater risk of developing chest infections. Over the last few years I think Ladan has had to go onto anti-biotics at least once during this period, last year we ended up in hospital twice and so I am hoping for a smoother ride through this winter.
I remain aware that many people are keeping Ladan in their thoughts and prayers and this a blessing for which I am truly very grateful and am deeply moved by. Ladan has remained very strong through this ordeal, rather than deteriorating she becomes increasingly stable, so please do keep those prayers coming if you can. Thank you.
It has been so long since I posted to this blog that I had forgotten how to do it. My apologies to those of you who have been checking regularly for updates.
Thank you all very much indeed for saying prayers two months ago, I was very touched by the response. Ladan has remained stable, and there is slightly increased activity toward getting Ladan and I into a bungalow together so that I can be the one primarily looking after her (which I am to some extent anyway, but not at home).
I have been trying to start up a small business offering some web, internet and multimedia services, I’m still working out how I can best use the gaps of time between the interruptions that come from being with and caring for Ladan, this will become easier when we live together properly but even now I am optimistic that I am getting there slowly.
I have had Ladan back to the flat I currently sleep in a few times, and then we had quite a few trips to the local park, Jesmond Dene, where Ladan took me for a walk the first time I came to visit her in Newcastle. With summer looming, albeit the cooler Newcastle version of summer, it was decided that Ladan should have a daily tablet to prevent against hay fever, unfortunately this knocked Ladan for six and made her much sleepier, since then we have not been out, Ladan has stopped taking the tablets as a daily medicine, there have been a couple of other medicines that Ladan has had over the last few weeks too and I am hoping that soon we can be back to our normal regime and I will be taking Ladan out again a few times over the “summer”. When we go out we do not take any nurses or special equipment with us, so I prefer to have Ladan a state of medical fitness and awareness that I am familiar with. We have yet to have the first non-family member come to visit us and spend time in the flat with us, which will feel like a big step toward normality.
Firstly, there is nothing wrong that impels me to write this.
Thursday 10th April, please may I request that all our friends, indeed anybody who is willing to, says special prayers for Ladan, or thinks positively for her if they are not the praying kind.
This is more by way of experiment then necessity, Ladan has been very stable for the last few months and, as usual, has her very bright days as well as her tired days. I have noticed that, on a couple of occasions, the brighter days have coincided with several people claiming to have had Ladan in their prayers. While we are waiting to hear the doctors views on the use of another medication which, in a very small number of similar cases, has had amazing results I thought it might be nice to focus prayers on Ladan for one day with close to the same kind of intensity that she was receiving them when she first had her stroke. Those who are familiar with Ladan’s case will know that Ladan was showing good signs of consciousness until an incident in hospital, one and a half months later, knocked Ladan into an even lower state of consciousness.
If an experiment isn’t reason enough for you, then 10th April is also our fourth wedding anniversary.
On two recent occasions, the first being Ladan’s birthday on 10th February, I have been able to take Ladan back to the ground floor flat I sleep in near to the nursing home. The flat is full of items that were Ladan’s before we married and therefore hopefully a mini treasure trove of memories. Furthermore it is a quiet and comfortable place to spend time, which is also great for me. The second occasion was on the visit of a friend from the south, it seemed a much more natural place for Ladan to be receiving a guest. I am hoping that the next occasion will be this Thursday afternoon. There are several things that can happen on the day which may prevent this from happening, but that is the hope.
I have uploaded a few video clips from our wedding to my Facebook page, I will upload them elsewhere soon for those who are not on Facebook. I also hope to put up a short video in the next couple of days showing a few shots of where Ladan currently is and the flat in Heaton.
Thank you in advance for your participation on Thursday, there is no particular time and no particular prayer, just as much as you feel able and willing to offer on that day will be most appreciated.
From 17th – 24th December Ladan was in hospital again. To clarify, Ladan is usually in a nursing home with 24 hour cover by nurses qualified to a critical care level, general practitioners are on-call and usually visit within a few hours if a call is important. On this occasion, as on October 17th, Ladan was too unwell to be cared for in the nursing home and was admitted to hospital. The primary problem was again thought to be an asthma attack, possibly aggravated by a chest infection, another potential causal factor was also identified on x-rays.
For this stay we remained on Ward 43 of the Royal Victoria Infirmary in Newcastle, this ward is an extension of the admission ward and we only remained there due to a shortage of available beds on the main chest ward. The staff were friendly and Ladan was well looked after, she did not develop any of the skin problems that resulted from her last stay in the hospital. As usual, Ladan’s mother and myself made sure that one of us was with Ladan all day and all night.
Ladan’s condition was not quite as serious this time as it was on October 17th, though at times she seemed to be really struggling to breathe, which is of course very difficult to witness. On this occasion it also took a bit longer for her to show significant improvement, probably because Ladan was treated with regular oral medications rather than intravenous medications (which go directly into the blood stream). Nonetheless, she did improve and by the end of the stay we were just waiting a couple of days for a doctor to say it was okay to go. Officially Ladan has to be transported by paramedic ambulance and all ambulances were refusing to do non-emergency transport for patients on Christmas Eve, so it was only through the kind efforts of the staff on the ward that we were able to get back to the nursing home, it would probably heave been a few more days otherwise.
Ladan wasn’t particularly settled when we left hospital, she was still wheezing quite a bit, but as soon as she was back in her own room and had enjoyed a proper shower she was looking and sounding much better, and right now she is seeming back to normal again.
This is just a quick note to say that…
- Ladan is much more stable and is hopefully over her infection
- The friend that I reported to be in intensive care a few weeks ago is now at home
- My own car crash did me no harm and I have an offer of a replacement car
It has been a very crazy three or four weeks and I am still feeling a little bowled over by it all, but it looks like we are all well.