Category Archives: Diary

May he live in peace for evermore…

Ebrahim Alaeinia
22/12/1933 – 19/09/2005

As mentioned in my recent blog entry, Mr. Alaeinia passed away in Iran following a sudden and unexpected heart attack which sent him into a coma from which he sadly did not recover. The delay caused by the coma did, at least, enable some loved ones to be by his side before his passing.

Mr Alaeinia was present at our wedding and also visited when Ladan was in intensive care in the first week following Ladan’s fall into a coma.

Several services have been held for Mr Alaeinia both in the United Kingdom and in Iran and it is clear that he and his family have touched many hearts.

One and a half years

Ladan and James dancing

An eighteen month anniversary may not sound like anything special to write about, but when doctors feared that Ladan wouldn’t live for our seventh, the tenth day of each month became an even more special occasion for me. Ladan and I had a fairly joyful evening in which I read our wedding programme over the sound of a jazzed up Pachelbel’s Canon and some instrumentals by Kenny G before listening to some other slushy favourites.

Nine flat months

The night of the 24th/25th September marks 9 months since the siezure that started in the early hours of Christmas day last year, a siezure which caused such a sharp deterioration less than 2 months into Ladan’s recovery. Extra prayers for Ladan would be appreciated on this occasion.

I would like to give an inadequate mention here of Mr. Alaeinia who was in Newcastle when Ladan fell into a coma and visited her, and whose wife and son (Arash) have continued to visit Ladan and to give support to the family while Mr. Alaenia has been back in Iran.

Last week I heard that Mr. Alaenia had a short heart attack as he left a shop in Iran and as a result he fell into a coma, this week the even sadder news has reached me that he has passed away and there is a memorial meeting for him in Newcastle tonight (Saturday 24th) which I intend, of course, to attend.

Ladan moves on

A couple of weeks ago, on September 1st, Ladan moved from the Newcastle General Hospital to the rehabilitation unit of The Hawthorns in Peterlee, a small town near the North Sea coast and about 25 miles south of Newcastle. This was move was sprung on us quite suddenly and is intended to be temporary while waiting for a bed at another rehabilitation centre in Newcastle to become available. Ladan has a nice room in Peterlee, pictures of which can be seen here on webshots, and the staff are all very friendly. Ladan herself has been quite cold and very sleepy since we moved there, physically she is showing some minor signs of improvement but as for even the most basic appearances of obeying commands or communicating she is not staying awake long enough for any seemingly successful interactions to be repeated, and without repetition there is no way of distinguishing between coincidental reflexes and deliberate responses. Unfortunately this change cannot be fuuly appreciated by the rehab staff in Peterlee.

From a rehabilitation perspective I have been sadly unimpressed with the slowness of any action besides physiotherapy. Recently we were informed that once they have established even a basic awareness of the outside world, such as some response to sound, they can work with that. It has taken the Primary Care Trust a ridiculous number of months to approve sending Ladan somewhere that can begin a scientific assessment to see how much awareness she already has and even now, after more than two and a half weeks in a rehabilitation centre, such assessment has not begun. The Hawthorns are aware of our concerns and are trying to speed things up.

What’s happened to Ladan?

[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.

Ladan Update

Just a short update, more because I prefer to keep Ladan at the top of this blog than that there is anything major to report!

Ladan with a wallaby on the Isle of Wight

Ladan is seeming to become a little more stable again and her eyes are showing more movement but are still a long way from where they were two weeks ago, in other words they are still divergent and often have a slightly distant look, rather than a present look. This look to which I refer is something which Ladan went through twice before when she started opening her eyes after the initial bleed in November and again after she opened her eyes following the serious seizure in December. For a short time (just a couple of days in each case) Ladan was opening her eyes and you could look into Ladan’s eyes but not feel like Ladan was aware of you and/or looking back at you. Since two weeks ago Ladan’s eyes have often been more like this as well ass being very divergent and restricted in movement, doctors have blamed it on infection or rogue red blood cells causing post-surgical irritation, we have not been given a time-frame for it to improve though it does seem to improve very gradually. A good friend of mine suggested it should take several weeks for improvement to occur if blood cells are causing the problem.

Ladan seems to be suffering from something too, possibly stomach pain, which I am sure is not helping, she is not getting any help with that at the moment, in fact it feels like she has been a bit neglected over the last few days while something is clearly still troubling her. Ladan’s father is currently over from Australia and we were due to meet with Ladan’s consultant yesterday morning but the consultant was held up and Ladan’s father, who has not been at his best, needed to go and get some rest after waiting for several hours. The meeting is rescheduled for Monday and on Tuesday we have arranged to visit the rehabilitation centre, Hunters Moor, where Ladan is expected to go to next.

I have been managing to slightly intensify my own prayers of late, encouraged by a very sweet iranian lady who had a short stay in the cubicle next to Ladan’s last week. She had survived multiple stabbings and was herself, along with many of her visitors, a great believer in the power of prayer. She and most of her visitors popped in to see Ladan quite often, it was touching, but as soon as it was found that Ladan had a couple of infections they were asked not to come any closer than the doorway. Prayer is a great source of strength, but I find the height to which it elevates my faith and submission to the Will of God also lends itself to some pretty hard bumps down to ground, particularly when Ladan appears to be suffering a lot. I should blog about tests, faith, and prayer again some time soon, I’ve had a lot of experience lately!

Martins Volks Werks Ltd

Martins Volks Werks of North Farm Road, Tunbridge Wells, offer a very polite and friendly service, but their invoices can be almost three times their initial quote without warning or explanation either while they have your car or when you are querying the invoice.

If you are not in the Tunbridge Wells area then this will probably be of much less interest to you, but when my wife, Ladan, wanted a service and MOT for her VW Golf in Tunbridge Wells she initially wished to use the main VW Dealer, but as their quote was well over 200 pounds she was encouraged to hear from an employee at that dealership that other VW specialists may be of similar quality but cheaper, she was even given a couple of names. One of those names was Martin’s Volks Werks Ltd. Ladan called them and got a quote of “about 120 pounds” for a service and MOT on her vehicle. Ladan liked the sound of the man on the phone and chose them over a slightly lower quote elsewhere.

The job was done within one day and Ladan arranged to collect the car, the owner of the garage offered to pick her up half way between home and the garage using her serviced Golf. He was very friendly with her and chatty and said that he had even found a problem with the rear brakes which he had fixed free of charge. Ladan, expecting to pay there and then, asked how much the work had come to and she was told that an invoice would be put in the post and she should not worry because it had not come to much as the car was in very good condition. The car’s driver side wing mirror had been broken while in the garages possession and they replaced it with a smaller one as the specialist did not have the correct size for her car in stock.

I know that the motor trade has had a bad reputation in the past for trying to get extra money out of people, in general this is done by phoning the customer part way through a check-up or service to announce that something serious has been found wrong with the car and that it will cost several hundred pounds to fix. I say “in the past” because I have received excellent service and spot-on quotes from Brake Thru in Tunbridge Wells for many years now, and even Kwik Fit are now proving excellent at carrying out only the work that is needed and giving clear, VAT inclusive quotes, in advance (they later phone you and try to sell car insurance on the back of their good service). I was working from home on the day of Ladan’s service and Ladan had her mobile phone with her, we were relieved to receive no such calls from Martin’s Volks Werks. A few days later an invoice arrived, and ‘not much’ against a quote of “about 120 pounds” turned out to be over 300 pounds.

Having just got married and had an exotic honeymoon money was in short supply for us. Ladan visited them and asked what had gone wrong, the man she spoke to said that he did not understand why we had not received a call during the day before they proceeded with the extra work that added the extra costs and apologised for the error, but he said the invoice was correct and that they would split it into two invoices and allow her to pay it over a long period of time without any interest if she wished.

I analysed the invoices that we had been sent, beyond a service and an MOT the only additional cost I could see was a single wiper blade. We decided to write and ask them what they believed cost the additional sum over and above the quote, because everything on the invoice, apart from the actual figures, seemed in keeping with their earlier statement that the car was in good condition and had not required much work. As a show of good faith, which I am now unsure was justified, we sent them a cheque for about 200 pounds with this letter.

That letter was sent in August, the reply was received several months later and did not contain any justification for charges being nearly three times the quote other than, in addition to a wiper blade, the changing of a set of spark leads and an emissions test. Their letter also now claimed that, whilee they did acknowledge that they had no authorization to carry out the additional work (an emissions test and spark leads?), they had tried to call before proceeding with it – a claim which I, having sacrificed my lunch-time walk that day, knew to be false. I was slow in replying to this letter, Ladan had fallen into a coma several weeks before this letter came and I was not sure then whether her condition would be improve quickly or not. That said, I still face every day with the optimism that Ladan may make a substantial recovery during the course of it. Another couple of months on, Martins Volks Werks wrote again saying that if Ladan did not pay the remaining amount within 7 days then they would take legal action. I wrote back immediately informing them of Ladan’s condition and stating that while, if they wait for Ladan to recover she might have another opinion, I did not feel their reply had referred to any work that should not have been included in the original quote. I gave them my mobile phone number in case they wished to further try to settle the matter through me. Although I replied immediately it was still two weeks on from the date of their letter because most of my mail is being forwarded from Tunbridge Wells to Newcastle by a neighbour and there is therefore a delay in correspondence reaching me.

Martins Volks Werks did not, however, try to take any legal action, but nor did they try to contact me, instead they forwarded the matter to a debt collection agency called Network Debt Recovery who have persisted in sending threatening letters addressed to Ladan in spite of me contacting them several times and them assuring me that the matter would be put on hold. Included among the threats was a letter, sent after I had informed them of Ladan’s condition and location, threatening that somebody would come to visit Ladan and if she did not pay the requested amount (doubled by fees) before that visit then she would not be dealt with amicably, Network Debt Recovery’s staff were unable to tell me exactly what this threat had meant and the man I apparently needed to speak to in order to understand what this meant, a Mr. D. Steele, has never been available for me. Thankfully this threat was not carried out. I sought legal advise on whether I should pay or not and I was told to send a letter by recorded delivery to Network Debt Recovery explaining the whole situation, my advisors said that any reputable debt collection agency would drop the case but that in any case I should get back to the legal advisors with their reply. Network Debt Recovery ignored my letter and continue to send threatening letters addressed to Ladan, even though they are clearly fully aware that Ladan is in a comatose state and the letters only serve to cause me additional distress. All further attempts to contact Mr. D Steele by email and by phone have also been ignored. I may blog some more about Network Debt Recovery and their methods at a later date, if you have found this article and are receiving threats from them at the current time, especially if it is also over a claim that you have disputed, email me via jherbert@warble.com with “blog” in the subject.

For the record, Martins Volks Werks are fully aware of the kind of actions that Network Debt Recovery are taking on their behalf as they were copied in on my letter to NDR in which everything to that date was summarised. Asking what seemed like a simple question over how an invoice was triple the price they had led us to expect it would be has resulted in Martins Volks Werks taking actions, while aware of Ladan’s inability to act, for which they have added over 200 pounds worth of additioonal fees, this will make the matter difficult to settle even if they finally extend the courtesy of explaining what the original charges were actually for.

If you have any comments to make about Martins Volks Werks of Tunbridge Wells, good or bad, please do add them below.

Blogging about Ladan

I often feel I would like to write more about Ladan here and some people encourage me to keep the blog more up to date, but in reality it is hard to keep a blog that reflects a balanced picture of how Ladan is doing if I update it with news about her daily.

Being by Ladan’s side every day is a rough ride, an emotional roller coaster, that has many more lows than highs but most of the lows are short lived worries and frustrations while, overall, Ladan very slowly continues to progress in the direction of recovery. I know that many people who care about Ladan check this blog regularly and their prayers and thoughts for Ladan are very much appreciated, I would not want to send the emotions of some of my blog readers onto the same roller-coaster that my emotions have to endure, that is a test for me and other members of Ladan’s family to face, just as the strength to engage with these circumstances and hold strong our hope and faith under these conditions is a blessing with which we have been endowed and one which is strengthened from many sources and I could not sufficiently relate the possitive attitude with which the rougher side of the ride becomes balanced such that concerned readers would also maintain such enthusiastic support for Ladan.

By taking a longer term approach I can assess which positive aspects are real enough to report and what other developments are of serious concern and should be mentioned.

I do however take on board that a few more updates would be appreciated.

Two infections have now been found which doctors feel may have been contributing to Ladan being a bit more poorly recently, I expect that even having two different antibiotics at t he same time will also zap Ladan quite a bit this coming week. As you can tell messages change daily, just a couple of days ago they were thinking that there probably wasn’t an infection after all, such complicated issues in diagnosis are unfortunately common for somebody in Ladan’s condition.

We have also received a letter of reply concerning the events of Christmas when Ladan suffered a serious seizure since which she has been unable to communicate with us, the letter implies that the failures to provide essential care to Ladan that night were not down to a plan gone wrong but rather a complete failure on the part of the staff on duty that night to communicate essential information to each other on several occasions. The reply does not really provide a complete explanation as to what happened and who was responsible but rather leaves open many further questions which I hope to clarify in another letter to the NHS Trust shortly.

A little more stable

Following my Ladan Update two nights ago things have become a little more stable again, her eyes aren’t quite back to normal but they are getting there. Current thinking among the doctors is now that infection is not responsible but rather a large number of red blood cells loose inside Ladan’s head as a result of the three recent operations are causing some irritation to the brain stem and/or other areas or nerves in the brain, they expect this to settle by itself.

Yesterday I had a surprise visit from a hospital chaplain, when your wife has been somewhat less well over the last couple of days and a chaplain appears saying that he has been asked to come and visit your wife it initially rings a few alarm bells, but he explained that he was not the regular chaplain for the General Hospital and that as he was covering from another hospital he had a list of patients to visit and Ladan was on that list because, he checked and confirmed, somebody had gone into the chapel and filled out a prayer request card for Ladan. We had a nice chat about prayer and healing and some of the interesting experiences he had had with patients he had been asked to pray for. The chaplain’s son lives in Chicago and he had himself visited the Baha’i House of Worship there so he had heard of the Baha’i Faith before. The chaplain offered a prayer by Ladan’s side for her recovery and for the doctor’s who were looking after her.

Ladan update

Today Ladan appears to be in a worse way, possibly due to an infection somewhere.

Back on May 17th I reported that family members were seeing small but encouraging signs in Ladan, and in the weeks that followed these continued but tailed off in their frequency, there are still some signs of improvement, including better physical responses from time to time, but overall progress has been slow, though real. Doctors have been encouraged by what has occurred recently, particularly as Ladan has also been much more stable in terms of blood pressure and temperature and had remained almost free of infection since my last update. Ladan was also taken off the slightly oxygenated air supply and has been breathing normal air again without problems.

The hydrocephalus (increased ventricle size in the brain usually due to excess fluid) persisted and doctors are unsure of the cause, On Wednesday 20th July Ladan had another shunt revision hoped to help resolve remaining questions over this problem even though the existing shunt was thought to be in working order.

That operation did not work quite as expected, 36 hours later she was showing some breathing irregularities and not being easily woken from sleep, a scan confirmed that things were not right. Ladan’s neurosurgical consultant came in and carried out late night emergency surgery to remove any immediate danger, he requested that Ladan be moved back onto the High Dependency Unit for closer monitoring for a while. This allowed for a few brief tests to be done over how Ladan responded to pressure. Then, on Wednesday 27th July Ladan had surgery for a further shunt revision. Following that surgery Ladan seemed very agitated for several days, though the shunt seems to be working okay, the surgery can leave patients feeling very sore but there is also an increasing suspicion, due mainly to spiking temperature, blood pressure and high heart rate, that Ladan has an infection, though it is proving difficult to detect from test results.

We have moved back to Ward 30 now but are in a different cubicle. Ladan has just had a slightly worrying 30 hour sleep accompanied by a fair amount of twitching, having woken her eyes are somewhat divergent and less lively looking than they were, but it is still thought that all of this is due to an underlying infection which has not been identified as yet.

The prayers and supportive messages from around the world have been most encouring, thank you very much for them.