At 9:45 this morning Ladan had her first dose of Zolpidem (see last blog entry), it was a 5mg dose and the recommended dose for this use is 10mg, it is now just over an hour since that dose was given and there is no obvious effect from the drug.
The prescription written for Ladan says 5mg a day on it so now I will ask to get that changed so we can try the proper dose. The drug does not seem to have had a particularly sedative effect on Ladan either, which is its intended use in patients without impaired consciousness or brain injury.

In the coming week Ladan, my beautiful wife who is in a minimally conscious (coma-like) state, 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 long term 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 a significant number of 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 might climb up to 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. I also blogged about it 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 Parkinson’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. Back in 2005 I asked Ladan’s consultant if we could try levodopa with Ladan and he said that he would have been willing to consider it if Ladan was on less medication. As time has passed the other medications that Ladan required have all been removed or reduced to a minimal level and so a few months ago I asked Ladan’s GP if we could give Zolpidem a try. He contacted Ladan’s consultant who said that he did not believe it would have any effect but had no objection to it being tried. These processes always take a long time with letters being sent between different parties and we waited some extra time because Ladan came off another medication last month and it is wise not to do two new things at once, if avoidable, as it makes determining the source of side effects harder… we are now, however, at the point where the nursing home have a prescription and so we should be just days away from being able to try Zolpidem.

I am still unsure as to whether I should have asked to try levodopa first. In searching for Internet based information on levodopa there is at least partial similarity between Ladan’s condition and the cases where it has quickly brought people out of PVS (persistent vegetative state) or MCS (minimally conscious state), but I have been able to find more information on Zolpidem, its use seems to have been reported on more globally, and because of the major publicity last year I was able to find the names of the doctors that had pioneered the trial of Zolpidem for brain-impaired patients and was able to contact them directly by email for advise. They were very helpful and forwarded even more fascinating information about the effects of Zolpidem where it has been successful.

If you are reading this blog and have experience of using levodopa and/or zolpidem in a long term state of impaired consciousness then I would be very interested to hear from you.

One of the most interesting findings with Zolpidem is that brain scans have shown areas of brain tissue that were formerly considered to be “dead” come back to life during the awakening period that the drug induces. This probably isn’t the place to go into more technical detail on this but here is an article that touches on this, with further references at the end.

Ladan will hopeful be recieving her dose of Zolpidem during the mornings, the recommendation is an hour after breakfast. It usually starts to work after the first dose - if it is going to work at all - within about 30 minutes or so. If there is no discernible benefit after two weeks then it is recommended that the medication be stopped.

Even if Ladan is one of the 10-15% for whom this drug might have an impact then there is no way of telling what that effect will be. I will update the blog when we have tried the medication.

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.

18th June marks the anniversary of the execution, for being followers of the Baha’i Faith, of ten women in Iran in 1983. Among the ten women was Ladan’s aunt, Shirin Dalvand, pictured above holding Ladan several years earlier in Shiraz.

Baha’is were persecuted and put to death in very large numbers, this is not the anniversary of a rare event. The occasion is noted for the fact that all the Baha’is executed on this occasion were women, many of them young, one of them only seventeen years old.Shirin herself was twenty-five at the time. Ladan had fond memories of her and Shirin displayed great affection toward her too. Shirin’s parents, her brother and two sisters, all live in Newcastle and the family remember Shirin, and the numerous other Baha’is who’s lives were taken because of their Faith, at this time.

Links:
18th June 1983
Persection of the Baha’i commun ity in Iran
Music Video about Mona
Mona’s Dream, a film in production

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.

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

Ladan has been generally more settled recently, compared to my last post. We are awaiting results from blood tests which were finally done on Thursday, it takes about a week for the results, then I’ll try to write another, fuller update.

This is a very difficult blog entry to write without causing offence to people whom I do not wish to offend. This post is not specifically about the way things happen in Ladan’s current care home, it is about the way in which over the last few years, as family members, we have often been accused of wrong-doing without a sound context, and warning that this seems to be, as told to me by other people who are involved in similar environments, endemic to the care profession.

I am not going to include any examples in this revised blog entry, I want to avoid upsetting the people involved in any specific incident, but you will just have to understand that I can give examples from every place that has cared for Ladan.

You would like to think that family members would work hand-in-hand with clinical staff in deciding and providing the best level of care for their loved one. Many care institutions want to offer this and try to offer this, but it is not something that they know how to do. Most people with serious neurological or physical conditions are left by their families for most of the week with just occasional visits. In cases where there is a significant rate of recovery some patients prefer a smaller amount of visiting and so this is not necessarily a bad thing, but this means that clinical teams are not familiar with a situation where the family members have a better picture of the day to day state of a person in their care than anybody else, or where they even want to contribute to the care for their relative. My objective is to get Ladan home as soon as is practical and good for her, most people prefer to leave their relative with a caring team. Carers and medics are not, therefore, very familiar with working along side a family member.

For some reason, as kind, caring, loving and friendly as nurses and care workers can be, they are generally over eager to feel that a family member is doing something wrong, they may hear a sound and guess that it is the sound of the relative doing something they shouldn’t, they may see a sign and assume it is a sign that a family member did something they shouldn’t have done, they may see something they don’t understand and assume it is something quite dangerous.

While there are a small number of people who will ask you about any suspicions they have or point out if there is something not right, it is very common for staff to chat about what they heard or saw and to share their concerns about what it might have been, these concerns, rather than the sound or sight that was actually witnessed, eventually get to somebody in a position of seniority who then decides to talk to the family about it. The family are then presented with an allegation, the senior member of staff will not have had the time to investigate the source of the allegation properly before bringing it to the family and will usually present the allegation as a statement of fact rather than a query. Sometimes the allegation itself is even broadened to be an allegation of general wrong doing in a whole area, based on one related allegation, itself generally false. Almost always, if a family member denies the allegation the denial is treated as dishonesty. If the family member is able to work out where the allegation originated, and point out the true facts, they are again accused of being dishonest.

As I am not including examples, it is important for me to repeat that everything I am writing is an accumulation of our experiences in this environment and that not everything I am saying is relevant to Ladan’s current care home.

There is usually somebody you can find in an establishment who will listen to the facts of a matter, it is not always the case, however, that they will be present when the allegations are being made. Or if too many allegations are being made at once then the opportunity may not exist to get to the bottom of each one in detail.

These instances leave me deeply hurt, insulted, and upset for long periods of time, they make me less relaxed around Ladan, which I do not believe is good for her, it winds up the rest of the family and like wise they start talking in an agitated fashion around Ladan, which is again not good for her. Friends and family tell me to get Ladan out of the place she is in, or to take serious action against them, which are not things I want to do. It makes me feel like there is no point trying to communicate with people who treat us with suspicion, blame and as dishonest. It is hard to discuss these matters with people else-where without them becoming concerned that Ladan is not in safe hands. The reality is that she is, and always has been, in generally safe hands, the staff do care, and have always cared, they just have this endemic process that leads from suspicion to blame and is fundamentally down to people not talking to the family, working as a team and feeling able to ask questions about the sight or sound that makes them suspicious rather than letting it become an allegation for which the family get blamed.

If anybody who has been involved in Ladan’s care is reading this and is upset by it then I apologise for that, this is my personal diary on the Internet, it is for friends and family to know how Ladan and I are. This problem has been a continual frustration for us and I feel it is something that should be shared. I have found all of Ladan’s carers to be wonderful people, some of them have helped us get through hard times as a family and they have looked after Ladan well. I always find it hard to understand how such difficulties of communication arise as to lead to these hurtful accusations from such nice individuals.

When I first wrote this blog entry I referred to a specific incident which had triggered me into writing the article, the person involved in that incident was identifiable to many people whom I was not aware were reading this page and, although I later went on to say that the same person is very good at getting to the facts of a matter after a false allegation has been made, they were upset by this inclusion in my blog. I can understand that and do not want to imply in any way that they are not doing their job well, they are a very good listener and have always made time to listen to our concerns. If ever things feel wrong here, they are the life-line and it is incorrect and improper if they are seen as a main player in the problems I have detailed above because of the examples I used. These matters arise everywhere and the person I referenced is one of those who can be sought to help sort them out, there should be no doubt of that.

Hello, it’s been a while. I’m sorry for the silence, I’ve been without a suitable computer to call my own for the first part of this year and not got myself back into the blogging habit. Still, Ladan’s uncle has handed me his old computer and I’m pleased to be back in blogger land.

How is Ladan?

Ladan is in a similar condition to the last time I wrote an update. There are some changes. In terms of awareness Ladan seems to have at least a low level of awareness for more of the time than he has done for most of the last couple of years, the moments of higher awareness where Ladan seems to be trying to communicate and can follow certain basic requests are still less frequent, say a couple of times a month, but those moments have also been encouraging.

Medically Ladan has remained quite stable. She has not been calm all the time, she has had a few things bothering her over the last five months but nothing too serious, so far at least.

Ladan was on a lot of medication for her Churg-Strauss vasculitis which caused this whole scenario, that medication has been relatively rapidly reduced to almost nothing. We will need another blood test to be sure that this has gone ok, hopefully that will take place very soon.

This last week, in particular, something has been bothering Ladan on and off, it may be an upset stomach or even a touch of hay fever, or it may be a symptom of medicine being withdrawn or it may be negatively related to vasculitis. There are no obvious symptoms other than Ladan’s episodes of distress several times a day. I’m usually able to calm her down when she is starting to show signs of distress, otherwise her distress tires her out after a short while and she goes to a deeper sleep again for a while.

I have to leave it there for a moment, I’ll hopefully update you again soon.

By the way, the talk to Ladan link doesn’t seem to work at the moment, in as much as the recordings aren’t reaching me, I’m looking into it.

Send your message here.

Ladan generally responds to voices and frequently looks at people or tv/computer images. There are several indicators that Ladan is not only aware of the people around her but also understands them too, at least some of the time.

I have always felt that Ladan appreciates hearing and seeing her friends and having a variety of people talk to her but, since many of you are far away from Newcastle, there has not been much variety of late. Therefore I think it would be great for Ladan if you could send something of yourself to her which I can share at a time when I think she will be most able to appreciate it.

To this end you can now upload any audio, video or image files you wish to prepare and/or share with her and you can directly record a voice message from within your web browser.

If you don’t know what to say to Ladan then there are several ideas at the bottom of this page to help you.

Don’t be shy, give it a try! I’ll send you feedback on how Ladan responds.