Category Archives: Comment

The Zolpidem Question

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

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

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 Ladan often has quite normal reflexes which are superseded by extensive behaviour (stretching out her arms and legs) if she remains disturbed or uncomfortable for a “prolonged” period.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

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

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

Possibly to sleep more…

At 9:30 this morning (British Summer Time) Ladan had her second dose of Zolpidem, this time she had the full recommended 10mg of the drug. It is now an hour and twenty minutes later and there are no uncommon observations. If anything the medication has made her more restful for a while and more reflexive when moved (this needs a fuller explanation on the different ways the body can respond to things, which I will provide another time soon).

In the 10-15% of people, in similar conditions to Ladan, who tried Zolpidem that reacted well to it, a positive reaction was usually seen after the first dose. There is at least one case where the first positive reaction was after more than a week of using the medication at 10mg/day, so hopefully we will continue for a couple of weeks to see if anything does eventually happen. There certainly don’t seem to be any negative side effects appearing from the medication.

Thank you so much to everyone who has been thinking of Ladan and praying for her through this. I really appreciate it very much indeed.

Initial dose of Zolpidem

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.

Sleep more or awaken?

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.

The Baha’i Faith and homosexuality

Several news sources are reporting that an Interfaith group, including the Baha’is, staged an anti-homosexuality march in Uganda yesterday in response to an increase in pro gay rights activism in that country. While the protesters were united in their hope that the law would not be changed such that it would discourage family values, there were a variety of views on homosexuality being expressed by them and the banners they carried.

I feel it is worth saying a few words on the Baha’i attitude toward homosexuality here. In the Baha’i Faith sexual acts between two people of the same sex are not permitted. Sex is only permitted within marriage and marriage is viewed primarily as the institution for bringing children into the world, becoming a Baha’i when you are not married involves a commitment to abstain from sexual activity, just as it requires a commitment to abide by other laws too.

As with all religions, the Baha’i Faith presents love as a very powerful force, and for the love between any two people to be strong is to be seen as a positive thing, much moreso than popular culture generally dictates. It is only the sexual expression of that love which is forbidden outside of marriage.

A Baha’i would typically treat a homosexual and a heterosexual with the same dignity and respect, a homosexual is not seen as an evil person. The Baha’i teachings are for every individual Baha’i to apply to their own lives, and every Baha’i will have some short comings in this respect. Baha’is do not judge people simply because there is one obvious aspect of their life which is not in keeping with the teachings of Baha’u’llah, whether they have accepted Baha’u’llah or not. Within the Baha’i community if an individual is seen to be actively engaging in homosexual activity, as with any Baha’i law that is broken, they are likely to be discouraged or have certain administrative privileges removed. An addiction to, or inability to restrain from, homosexual activity is seen in the Baha’i teachings as a condition which can be treated.

The fundamental laws and teachings of the Baha’i Faith were set in stone by Baha’u’llah. There are some matters that were left for the Universal House of Justice (International governing body) to decide in accordance with the needs of the age, but they cannot change the basic laws of the Baha’i Faith to meet with popular opinion. Any individual who becomes a Baha’i will investigate the laws and teachings of Baha’u’llah, be inspired by the Holy Writings and recognise that the religion is from a Divine source, it is inevitable that somewhere in the laws and teachings there will be something that is incompatible with an individuals personal beliefs to that date, but to accept Baha’u’llah as a Messenger from God is to accept that His teachings are correct and our ideas are flawed, to suggest that Baha’u’llah may be wrong on one issue is to deny His divinity and thus reject the Baha’i Faith. It is common for an individual to have problems or issues accepting a view-point which is contrary to everything they have believed throughout their life, it is not unreasonable that such issues may never be fully reconciled or understood, so long as a Baha’i understands the Baha’i perspective as the Truth and their own perspective as restricted by the limitations of human understanding then there is no harm in such differences.

Religion is not about finding a code of living that everybody agrees with, it is about discovering the path for our spiritual development as individuals and as a society. Religion has never been popular for changing standards, but many religious standards that were unpopular in the past are accepted as proper today. For example (though somewhat disconnected from the overall subject matter) in the mid-nineteenth century the explicit Baha’i message that men and women should have equal rights was seen by many as outrageous, within a century it was globally prevalent and society is better for it.

There is a fairly good Wikipedia article on the Baha’i Faith and homosexuality which can be found here.

Infection and Immobility

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.

Culture of Suspicion and Blame

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.

Blog Issues

This is a techy grumble. My blogs are still damaged by Google’s new beta version of blogger. If you read their blurb on progress you would think that everything was close to perfection. If you use he new blogger in the most simple of ways then there are indeed some nice new features available to you, but if you use FTP to host your own blog then the new blogger just introduces a few cosmetic changes, including the formatting of the atom XML feed. I had decided to transfer over to WordPress which would remain more under my control but the import feature of WordPress does not work with Blogger Beta. So, my site remains a little damaged for a while until I can find a work around for the cross-blog links to work again. I am concluding that while Blogger is an excellent entry vehicle into blogging, I have always felt it wins over Yahoo, MSN and MySpace in many ways, but at the end of the engine is still remotely-hosted, and somebody else controls your blog presence.

Google damaged my blogs

Anyone who uses blogger will be familiar with the way that Google have been encouraging us to switch over to their new beta version. Well, I finally gave in and now the links to my other blogs, in the left column of each page, do not work because the “atom feed” created by blogger has changed its format. That probably means nothing to most of you, but hopefully we will get around the problem soon.