People in minimally conscious states are said to be prone to certain things, top of the list come chest infections and pressure sores, both because of a general lack of movement. Ladan has had a few suspected chest infections over the last few years but nothing major, just requiring a basic course of a regular anti-biotic and her skin has always remained in reasonably good condition, which is a credit to the nurses and carers who have been involved in her care.

On the evening of 17th October Ladan started breathing quite rapidly. In the early hours of the morning the breathing seemed to have calmed down but when I came back some hours later Ladan was being attended to by two nurses trying to help her with chest problems. The doctor was called out and she recommended that Ladan get to hospital fairly quickly. Before noon that Thursday we were in hospital.

In hospital things moved slowly. It was may hours before a doctor came to see Ladan, they decided to prescribe some anti-biotics. Ladan’s condition worsened throughout the day and she really seemed to be struggling for breath as time went on. As I have mentioned before, my presence and support for Ladan have often helped her be more settled and so I was diving in and placing myself right before her eyes, giving her lots of love and encouragement… this was incredibly traumatic for me. Only once before, in the very early days of this stage of Ladan’s life, have I seen ladan looking so terribly uncomfortable and struggling, it is a very difficult thing to witness, there was a sparkle in her eyes when I was in front of her, I knew that she knew that she could handle this, but that didn’t make it much easier to behold and inside I was yearning for the doctors to get some treatment started and to start relieving the problem for her.

Eventually we were transferred to a ward where they had no idea what Ladan’s situation was or what she required in terms of facilities or care. This initially caused an upset between the staff which is not the best welcome you can have to a ward. The nurse on duty was telling me that he was not sure he could provide Ladan with the care she needed as he also had a lot of other patients to look after. Ladan was getting worse at this point and the doctors were called to have a look at her again. Ladan got onto a more direct treatment. Because Ladan was very ill there was a lot of consultation about possibly going to intensive care. The consultation was not just about why we might need to go to intensive care, but also about whether or not we should go to intensive care. Many medical staff were apparently unhappy that a minimally conscious person should be entitled to intensive care, and the debate over whether we as a family wanted Ladan to receive any treatment, if required, was had several times in the first 24 hours of our stay. The following morning Ladan’s assigned consultant in the hospital, who has an excellent reputation for dealing with respiratory disorders and is also the head o f the Intensive Care Unit, modified the treatment regime and confirmed that, on this occasion at least, intensive care would be available for Ladan if she required it.

With the help of Ladan’s Mum, Shahla, we were able to be with Ladan 24 hours a day for the duration of Ladan’s stay in hospital, ensuring that Ladan was as comfortable as possible under the circumstances. Unfortunately the staff on the ward were very busy and the setting meant that it was not possible to always provide Ladan with some of the care she would normally receive. I got hooked up to some basic Internet access through the hospital’s Patientline service, which worked less well than a basic mobile phone would with the Internet, but it gave me some facilities (not including blogging).

Ladan became increasingly stable. She was very chesty all the time we were in hospital and there were good times and bad times. The most traumatic period was not repeated but it never felt like it was that unlikely to happen again. Toward the end of last week Ladan’s consultant started predicting that we would be able to leave on Friday as the blood test results were encouraging. On Thursday Shahla and I repositioned Ladan in her bed in the evening and I felt that Ladan’s skin was not as good as usual. This plagued me for a while, as I was starting to wonder if Ladan might be chesty because of discomfort rather than infection. On Friday morning the consultant came in and suggested that Ladan could stay in hospital over the weekend so that they could see how she did without anti-biotics. Given that Ladan is currently in a nursing home with more intensive nursing care than the hospital were able to provide I asked if it would make any difference if we went back to the nursing home and the consultant put the wheels in motion for this to happen, we returned on Friday afternoon.

The first thing we wanted to do was get a proper shower for Ladan and wash her hair, on seeing the state of Ladan’s skin I was almost shocked to tears, I have never seen skin looking so sore, thankfully that is now very much on the mend.

Over the weekend Ladan remained very chesty, Sunday was a slightly better day and Monday was a very god day where she was looking much brighter and healthier. By comparison Ladan has been a bit out of it again today but her chest does not seem too bad. It is looking very promising that this bad spell is over now, but Ladan is still coughing up slightly creamy secretions from her chest, so there is an element of caution to our optimism. Even if there is a residual infection it should hopefully just require another course of basic anti-biotics to finish the job, rather than a hospital visit, so long as it is recognised soon enough.

In the midst of this I had yet more drama of my own, though luckily not serious, in the form of a car crash, which can be read about here.

These are two quick updates because I have access to the Internet for a moment, I am in hospital most of the day where Internet access is minimal, I will write fuller updates when things are more normal with Ladan, meanwhile some updates can be found on Facebook if you are a friend of mine on there.

On Wednesday 17th October, in the evening, Ladan started breathing quite rapidly. Though she seemed a little more settled in the early hours of the morning she became worse on Thursday morning and was sent to hospital. In hospital Ladan continued to worsen for the next 20 - 24 hours before starting to settle. Heavy anti-bitoics and steroids seem to have her nearly back on track. It is not clear what the cause of the problem was. Ladan is still rather more chesty than usual but other than that seems fairly stable and may be discharged from hospital, back to the nursing home tomorrow.

At much the same time that Ladan became unwell my good friend Manoocher Samii had, according to an email I received the following morning from his wife, a very serious car accident. I was told that a vehicle overtook a lorry without realising that Manoocher was coming the other way, the driver at fault died, Manoocher rolled down a bank or hill and needed to be cut out by the fire brigade and was brought to life by the paramedics, they had thought that he would not live. He was taken to intensive care where at some point on Thursday his breathing and pulse improved and he is reported to be making an unexpectedly good recovery.

Prayers, possitive thoughts etc. would be much appreciated both for Manoocher and for Ladan.

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.

Lately a few things have happened to me which I felt would be well placed in a comedy, with just slight alterations to the course of events. A couple of weeks ago I went to pour tomato ketchup along side some chips on my plate, noticed it was a little runny, casually closed the lid and shook the bottle, only to have the lid fly open and the ketchup follow it out of the bottle and onto the walls, appliances and furniture in the kitchen. I am sure this has happened to most of us, but I seem to be having a season for these things.

I am not very good at having fresh fruit in the house, I either eat it all on the day of purchase or leave it to rot in the bowl. Somebody told me about Sainsburys new range of frozen fruit, conveniently frozen fresh fruit, cut to edible chunks where appropriate. I keep some in my freezer and eat it when I feel like having something fruity. Recently I decided to get frozen blueberries for the first time, having enjoyed many blueberry flavoured foods through the years. They were a little blander in taste than I had expected but still refreshing. The fruit was all I had eaten that afternoon and I was about to leave the flat when I wondered if I should brush my teeth, I remembered that I was out of tooth-paste and headed for the front door, I had a sudden change of mind and decided I could squeeze something out of the tube if I tried, so I went to the bathroom and beheld my mouth in the mirror, a bright glowing hue of blue. How embarrassing it would have been had I walked out of that door without cleaning my teeth and mouth!

As most readers know my wife is in a nursing home and from time to time we have a doctor or a consultant come to see her for something. A few weeks ago we were expecting a consultant and I was washing some jugs in the sink having just given Ladan a fruit drink. All the sinks in the care home are low so that wheelchair users can reach them easily, which also means that any splashes are aligned on the trousers to appear that an accident has been had, especially when your trousers are a light beige colour, as mine were that afternoon. How ironic it would be, I thought, if the consultant would arrive just after I have managed to splash water onto my trousers, I quickly grabbed a hair dryer to start drying them off when there was a knock at the door and the consultant walked in with a nurse. Ladan was up in a chair near the bathroom and the chair has wheels so I quickly positioned myself behind the chair and moved Ladan with me, in her chair, as I moved around the room to keep my trousers hidden. After a short while I was asked to get something that was on the other side of the room, I kept my body turned away from the guests as I walked to the drawers, then quickly moved into a new position concealed behind Ladan’s bed when nobody was watching and handed over the item. Several minutes later the water had dried enough that it was no longer visible and I noticed this. I looked down several times, trying to be subtle, to check I was right about this before proudly coming out from behind the bed to let my dry trousers be seen again.

Last year I was given a very nice pair of shoes by a relative and recently they started deteriorating. A few months ago the front of the sole had come loose from the rest of the shoe and I fixed it with super-glue. Many years ago I went to have shoes fixed under similar circumstances by a shoe repair specialist and he did exactly the same thing for four times the money, so since then I have resolved just to do it myself when required. More recently the same thing happened with one of my shoes shortly before I had to attend an interview. It would be embarrassing to attend an interview with shoes that were falling apart but I used super-glue before heading out and was optimistic that they would stay together, there was no time to get a replacement pair of shoes, even though I had now accepted that my sentimental attachment to this pair of shoes was no longer justified. I went to the interview, there were two people conducting the interview and I was behind a desk, there were some other people sat waiting further down the room, too far away to hear us but close enough to see. As the interview neared its conclusion I went to bring my feet forward and failed. My foot would not move. I used a greater force and my foot still remained fastened to the floor, not only was the sole glued firmly to my shoe, it was now fixed firmly to the floor too. I tried to look completely focused on the interview while I used more and more force to try and kick my foot free from the floor, eventually my foot flew forward and the people sat in the distance were sending some very strange looks in my direction. The interviewers seemed not to have noticed anything. I got some new shoes pretty quickly after that, I couldn’t help imaging the scenario of a boy trying to impress a girl on a first date and, after a lot of kicking around under the table, walking out of a restaurant with a carpet tile stuck to his shoe.

The last couple of days something hasn’t seemed quite right with Ladan and then last night she required a lot of chest care, the nurses decided that she may have a chest infection and the doctors have come out to see her and they have agreed that she should have a course of anti-biotics.

While the doctor was here I asked if there were any results from the recent blood tests, there are two markers that are most important to watch for Ladan, one was perfect and the other was considered fairly normal, so that was good news.

For complicated reasons, and not complications with Ladan, the anti-biotic that was prescribed for Ladan was changed twice so the final prescription was written at about 10pm, I drove up to a Boots night dispensary to get the medicine a short while ago and Ladan has had her first dose.

We had a nice surprise earlier when Chris and Zhamak Lee came to visit. Ladan was probably a bit more out of it than usual with her infection but Zhamak is very good at talking to Ladan, many people find it difficult to know what to say and to say it just as you would in normal conversation, I know Zhamak doesn’t find it that easy either bt she does it very well. I would still like to encourage people to send Ladan messages, she does become visibly interested when hearing them, especially when I get to pick the moment they are played.

Link: Send yourself to Ladan

Somewhere at the end of December/start of January my laptop was balanced on Ladan’s bedside while I attended to something for her and one moment later it was on the floor and the screen had gone off. I tried to resuscitate it several times but it remains in a severely disabled state unsuitable for blogging.

Ladan’s kind and generous uncle Shahram said that I could have his old notebook computer and finally, as of a few days ago, I have it. It took a while to make it work well but… all staying good, I’m properly back in business.

I lost a lot of personal data including email and a huge mp3 collection, as well as some projects I had been working on, so if I haven’t replied to something for months then you will know why.

Among the lost data was some recorded material for a Baha’i podcast I was about to launch, I was excited about it having kept my Baha’i blog up to date for the best part of a year without fail, but, alas, the flaw of being a one man show hit me when my computer gave up.

Some of you may have noticed some Internet presence on my part, but it has been from numerous computers and I wanted a solid platform from which to get back into blogging. Now I have it, so, without further ado, I’m off to give a Ladan update on our main blog…

Over the weekend I made a brief trip to the South East corner of the country to meet my Mum at Heathrow airport and bring a car load of our belongings back with me. I set off from Ladan’s room at just after 6am and enjoyed the wide empty roads before me as the crisp light of dawn arose around me.

When I was about a third of the way down the country a sign above the almost deserted motorway informed me that there was a queue ahead and that I should slow down to 40mph. Sceptically, I started slowing down only to find that the next overhead sign, just around a bend from the first, said “End” meaning that I had passed the congestion.

I wondered, for a moment, what had prompted the sign to flash such an unlikely warning at me, before forgetting about it and pondering more interesting and important facts such as when and where I would get my breakfast. However, it was not to be the only overhead sign to flash nonsense warnings at me during my 14 hours of driving that weekend, I was warned numerous times of imminent danger by overhead signs on the A1(M), the M1 and the M25 and on every single occasion the warning was false.

There were a couple of occasions on the M25 where it is possible the traffic conditions had been different a few minutes earlier, but for the most part the warning signs were not just wrong they were verging on the impossible. The last instance of this that I experienced was on my way back where a sign warned of congestion ahead and suggested I slow down to 50mph, doubtful I ignored it and decided that I would only take notice if the next sign repeated the warning and recommended a drop to 40mph… actually the next sign did repeat the warning and suggested 30mph. The road was flowing so well that with all my experience of false signs I merely ensured I wasn’t above the speed limit, then the next sign was blank. Either it wasn’t playing along with the previous signs or it knew that nobody was taking any notice and took a “What’s the point?” attitude to giving any kind of warning. Of course, there were no delays and the next sign said “End”.

I am reminded of the parable of the boy who cried wolf. During my journey I saw a few accidents and delays on the opposite carriageway. One man I saw sent a cloud of smoke across the road as he burned his tyres coming to a sudden stop from over 70mph… had he seen a warning sign about queues ahead or were they only telling lies this weekend, or had he indeed seen so many false warnings that he had decided not to take any notice anymore.

I have no idea why the overhead warning signs were so outrageously wrong this weekend, but it is dangerous for them to be so. The overhead signs are a means of communicating important information to drivers but if the drivers lose their trust in the communications they are receiving then the communication becomes useless and it can no longer be used to improve safety on the road.

Back to Lady’s Gift Road for a night

I had intended to get back to the old flat, pack our remaining things and give it a good tidy before collecting my Mum from Heathrow airport. I had forgotten how much stuff was still there and so I didn’t even finish the packing part, though I did pack as much as I would be able to bring back the following day. My Mum is in the country for a few weeks and should be coming up to Newcastle to visit me here soon. On Sunday morning I had the pleasure of seeing my brother Robert, his partner Anne and my nephew Finlay for the first time in over a year. It was a relatively short time before I felt the need to get back on the road but it was really great to see them all. Finlay is so very cute and cheerful.

Unfortunately I will need to make another visit to the flat to get the rest of our things from there, I had hoped this trip (my second quick visit) would be the last so that next time I go south I might just spend my time visiting friends or family rather than packing and loading. Hopefully the next trip will be the last.

Over the last ten days I have been blessed with two family visits, one from my two aunts and another from my Dad, I have also stood as witness in a magisrates court against the man who was arrested for assaulting me in Peterlee back in February.

The visit from my aunts was a short, pleasant and unexpected surprise, they came up for an afternoon, spent some time with Ladan and I and took me for a very delicious meal at the Cafe Royal in Newcastle. My father’s visit was timed to coincide with the court case in Peterlee. Something that these visits reminds me of, for which I consider Ladan and I to be very lucky, is that my whole family and some of Ladan’s are very supportive of my own continuing love and support for Ladan.

Our trip to Peterlee was an interesting experience, it was my first time inside a court and the actual process of giving evidence and being cross-examined was significantly less intimidating than I had imagined, I was surprised to find that when the solicitor for the defence put a question to me I was allowed to give a full and elaborate answer which would have been more useful for the prosecution than the defence, rather than the “yes or no answer, please Mr Herbert” that you often see on television and which could have given a stronger impression of holes in the case. The main argument against the prosecution was that I could not be certain who had assaulted me as he had hit me from behind and broken my glasses so that my vision after the assault was impaired. Because the attacker had been both unpredictable and threatening on the night and because he seemed to have several friends and/or family members there I did not want to hang around to the end of the case to see what the results were, due to computer problems the witness service have been unable to tell me what happened yet, I should know by early next week.

Here, for anybody who doesn’t know what I am talking about but is interested, is the report of the incident that I wrote previously in my main blog…

“I had just got myself some cheap comfort food in the form of a chicken burger and chips and was walking back when a youth started walking the same way, I didn’t think much of it at the time, in fact he had some features in common with a friend of mine which reassured me that I shouldn’t think of him as being dodgy. Anyway, as we got out of the centre of the town I was initially about 20 metres ahead of him a a less well-lit area with nobody else around and I noticed his shadow rapidly getting closer, then he hit me in the side of the head knocking me into the road, he ran off into some trees opposite the road. I got up and picked up what I could find of my broken glasses and shouted after the guy asking why he had done it, he didn’t reply. As I continued along the path he came out from the trees so I stepped in to a driveway and knocked on a door, he went back into the trees and shouted something like “don’t call the police”, a couple of ladies then came along and asked what was going on, they walked with me down to the entrance to the hospital car park, at that point the youth came out again running after me and I ran into the hospital - this is a hospital next to the rehab centre Ladan is in - there was some bleeding around my eye and so I asked them to take a look at it, the security guard described somebody acting suspiciously outside the entrance and called the police with my consent, the police came and took the guy away for questioning, I spent much of the rest of the night giving statements and getting my eye checked in the A&E department of another hospital as the one in Peterlee was too small, it is okay mind, my glasses damaged the surface layers of my eye so I needed to take some antibiotics for a while, and I still have some scarring and tenderness around that eye.”

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.

Following on my theme of visiting interesting places in the rain, Simon Batchelor chose to jump on a train to Manchester and then, with Ali Khosravi, meet me in Windermere in the Lake District while the clouds and rain minimized the view of the spectacular hills and countryside around us. Below is a picture from our cruise of the lake:

It was Thursday last week that we met up, Manoocher (see below) had left at 01:30 that day to have NTL sort out his Internet and TV problems in Oxford later that morning. I headed out in the torrential rain storm that often greets those who step outside in this part of the world and raced out toward Hexham, knowing that the scenic route I had chosen, though fairly short, was likely to take a while to get me to Windermere.

Scenic is an understatement here, the rain was not quite as bad once I was halfway west across the country but even with the remaining downpour and cloud the scenery I witnessed as I drove up and down a winding road that passed through Alston was breath-taking. The road goes 1900 feet up into the hills and one could easily die for a view of the scenery up there, not just because it was so spectacular but moreso because the road made several 180 degree turns past deep drops and if I had taken my eyes off the road and onto the scenery for more than a passing glance I would surely now be lying in a VW Coffin somewhere south of Carlilse.

Then came the road from Penrith to Windermere and for the most part that was a much safer affair, though it would have been easier to drive in an Automatic with all the clutch control and gear changes, again this road took me 1500 feet up into the sky with the green mountainous terrain of the northern Lake District rolling up and down along side the lakes. Amidst this beauty I wasn’t too worried about how long the journey was taking and I was suprisingly calm about people driving their vans at 20mph in front of a convoy of 15 cars without pulling over. I mention this drive for one reason, it was spectacular, the A roads between Penrith and Windermere and between Hexham and Penrith are very beautiful drives, espcially, I would assume, for passengers.

The scenery wasn’t really my reason for going to Windermere so finding myself in a wet and windy place that was beautiful but not really as stunning as the drive was of little consequence, I was really there to see Ali and Simon. We’re not seasoned Lake District tourists as yet and so we weren’t sure what to do in the wind and rain, all we really knew was the kite flying was out. We booked tickets for a lake cruise up to Ambleside and then played a few games in an arcade, which Ali won, of course, before boarding our crowded boat. Initially we headed upstairs where I gave everyone a free demonstration on how to fall over on a non-slip surface, hitting my leg hard against a chair as a bonus feature of the display. Once I had got up and hobbled over to a covered seat Ali and Simon felt it wiser to keep me downstairs in a dryer environment.

On arriving in Ambelside our tickets allowed us to disembark, walk around and enjoy all the joys and wonders that Ambleside had to offer and catch another boat back to Windermere. Since the ship’s crew could only think of one hotel and bar as representing all that Ambelside had to offer we decided, however, to stay on the boat and return to Windermere straight away. On our return journey Ali and I ventured up onto the top deck again and, being much emptier on the way back, I elected not to do a repeat demostration of falling over. The picture above was taken through a downstairs window on our cruise of the lake, below are some other photos taken from the ship.

see more here

Lately Simon has had a liking for finding a beautiful place outdoors to sit and say some prayers, so we drove south from the harbour at Bowness in search of a quiet secluded spot by the lake. Simon and I both like to say the longest of the Baha’i healing prayers at least once each day and so I asked if I may say it, while Simon was all for it Ali was somewhat hesitant with the cold wind chilling his Persian blood. Noting Ali’s hesitance Simon said a shorter prayer than he had planned while I proceded to follow with the long healing prayer, Ali then followed through with three of the longest prayers left in the Baha’i religion, namely the Fire Tablet, The Tablet of Ahmad and The Tablet of Visitation (of Baha’u'llah). It was a very special moment for us, although we were brought together as friends by our faith it is rare that we do anything particularly spiritual when we are together. Here are a few shots from the area where we were sat:

see more here

Cold and hungry, as we were by then, we set off to find somewhere to eat and found a small restaurant serving local fish over which we shared our last couple of hours together.

Being dark as well as wet I chose a less scenic route home, rather than 90 miles in 2 and a quarter hours, which was my journey to Windermere, I drove 120 miles in just over two hours. I stuck to the main roads but am sure there was a quicker route, one of the great frutrations of north-east England is that there are few sign posts even on the A routes, and with the rain very heavy again on the eastern side of the country I wasn’t in the mood for turning down small country roads looking for a place I could stop and check the map, so I just drove until I hit the A1 somewhere 45 miles south of Newcastle.

Simon and I have discussed the possibility of another trip to the northern part of the lakes in a month or so. We’ll keep our finger crossed for an Indian summer in the north west.