Schizophrenia - Stealing back a life.

2011-11-25T14:08:00.001Z

David has made great strides over the last two years. He is the founder member and lead guitarist in a new band. There are 4 other members and they have no idea of his medical history. His concentration has improved to such an extend that he has only to complete two more tracks to publish his first album. It will be 10 or 11 instrumental tracks where David has written the music and played every instrument.
We still have to see him four or five times a week because he needs regular reminders and encouragement with everyday tasks. He still cannot work, mostly due to the ignorance and prejudice of the general public and partly due to the effects of the Clozopine. However, he is proof that if you have a close relative with schizophrenia you should never give up on them.

Update

2010-04-24T17:52:00.000+01:00

I have not posted to this blog for a couple of years now. In fact I had forgotten all about it so here is an update.

Three years ago, when David was still in the awful sheltered accommodation we described in earlier entries we decided that we had to do something ourselves to improve his living conditions. We got some help from relatives and spent our life savings on a house for him. It was half built when we first viewed it and the developers told us it would be finished in three months. They lied and it was over a year before the house was ready for occupation. It cost in the region of £220K and, as we are both retired pensioners, it has left us very vulnerable but there seemed to be no alternative. In fact, the recession means that we shall lose a great deal if we have to sell.

David has been at the house for two years now. He is mostly happy but as he is completely alone we spend our time visiting him nearly every day. We buy most of his food, pay his bills, petrol, water rates etc etc as he gets very little to live on. We receive nothing from the authorities for his use of the house so they have gained a great deal - this, after my wife and I both worked for 30 years paying into the system.

David still keeps up a regime of fitness and a strict diet, constantly worrying about his health and weight. Often the old, dark thoughts come back so we spend hours on the phone talking him through it. He is on only 200mg of clozopine per day now. On the positive side he is becoming more independent and there are several local venues where he regularly jams with other musicians.

Schizophrenia at Hyde Park and the great John Mayer

2008-06-29T10:06:00.006+01:00

No, this is not another misuse of the term for a very serious neurological condition. There actually was a paranoid schizophrenic at Hyde Park this weekend. I took David to see Eric Clapton, Cheryl Crow and John Mayer and no-one recognized that someone with treatment resistant paranoid schizophrenia was amongst them - in fact, David was better behaved than many of the intimidating, smoking, view obscuring males around us.

John Mayer stole the show. Eric Clapton seems to agree because he gave John a big hug and lots of space to riff the blues during the last number. Eric is a big man and John Mayer is the new man on the block and the next big influence on Davids own guitar playing.

Update on the last post

2008-06-01T18:04:00.002+01:00

I have added some notes to the evidence pages:

The situation.

Three recovering mental health patients are sharing a house. The last to join the household (R) moved in during May 2007. He is a tee-total, non smoker with a healthy lifestyle.

The residence is a newly built semi-detached house with shared kitchen, lounge, bathroom and toilets.

The following pages document some of the conditions created by the two clients already in occupation.

The two other residents (T & S) are chain smokers and indulge in this habit throughout the house. Apparently there is nothing the landlords can do about this so that R cannot use any of the shared facilities owing to the general filth and choking stench of tobacco smoke, stale bodies and dirty clothes. In addition S is a self confessed recreational drug user and T is an alcoholic who is often incoherent by mid-day.

Other worrying incidents include various acts of vandalism, such as the theft of the pay phone, permanent damage to the new phone which eventually replaced the first one, drawing on the walls, holes cut in the lounge carpet and the opening and destruction of other peoples mail.

Recently, there was a bad atmosphere between T and S so R left the premises to stay the night with relatives. That evening the police had to be called to the house to deal with a violent incident.

Sometime in February 2008, just after dawn R was awakened by someone shouting and kicking his door. As usual S had left the back door unlocked and one of his drug suppliers had entered the house uninvited, found the wrong bedroom and demanded access to deliver drugs and, presumably, obtain some cash. Neither S nor T made any attempt to intervene so R was left to guard his door from the inside whilst the unknown intruder shouted threats and kicked the door for 20 minutes or more. Eventually the interloper left and has never been identified.

A few weeks after the last incident there was another threatening intrusion, this time at 3am in the morning. Again, as usual, S had left the house unlocked (he regularly loses his keys so keeps all the doors unlocked even if they are secured by the other residents) and someone let himself in to stand outside T's bedroom door to kick it and make violent threats to kill T by stabbing him. Again S or T made no attempt to deal with the intruder who eventually left.

I relate the last two incidents to emphasise the lack of privacy and security in the building. Acquaintances of S and T regard the house as public property and roam around uninvited at any time, night or day.

Evidence

2008-03-31T22:56:00.002+01:00

Some evidence of the conditions at the shared residence can be viewed here.

Still trying.....................

2007-11-12T00:31:00.000Z

Living conditions are still very bad for David. We sent this letter a few days ago.

We shall see………….

Dear Madam ,

we were pleased to receive a "Comment Card" from mcch. It arrives five months after our son first moved to 7 Thirlmere Close at a point when we are again frustrated in our efforts to improve the conditions there. At present (late October) most of the house is uninhabitable.

Following a meeting with Maria Oconnor, David, and the staff at Thirlmere on the 13th of June, one month after David moved in, Maria took matters seriously. She made her own investigations and took action which did lead to improvements and a letter to all resident’s outlining their responsibilities. We are grateful to her for her speedy response.

This is a copy of an email sent to Maria on 12/08/07

"Dear Maria

We are prompted by our recent visits to 7 Thirlmere to update you following your letter to the residents. On Friday afternoon on the 10th of August we noted that both toilets had faeces on the seats and inside the bowl. The one upstairs had diarrhoea splashed over the seat. They were both so filthy that David was unable to use them.

In the morning before we arrived David was due to clean the kitchen but another resident (as usual) had left so much mess including opened food containers, plates of half eaten food and clothing strewn everywhere that it was impossible to find a vacant surface. One of the care workers had arrived so we picked up David hoping that the resident responsible for the mess would be made to clear it. On our return there had been no improvement. The house was empty and, as usual the back door and side gate were left open with no sign of a back door key to secure the premises. Three bags of rubbish, which had appeared several days earlier, were still blocking the landing and there was no light here or in the top toilet. David has since told us that he managed to vacuum and mop some of the kitchen floor after we left.

We visited briefly on Saturday to find that more filth had been added to that of the previous day. I noted a full ashtray and two cigarette lighters in the kitchen. One of the other residents, the only one present over this period, set the fire alarm off twice while we were there. There was an unbearable stench of tobacco smoke everywhere. Both toilets were still too filthy to use and the lounge was in a similar state to the kitchen.

If you need them, I can send photographs. They are not too clear because the lights were not functioning upstairs.

The situation with the lavatories is an unacceptable health hazard. We urge you to give it a high priority. Might I suggest that, pending a permanent solution to this problem, you limit the occupant who is not toilet trained to using the downstairs lavatory only so that the one upstairs can be kept clean enough for the other residents.
David will be away for a week so we trust that this letter will help you to pursue matters to a satisfactory conclusion by the time he returns.

We appreciate the steps you have already taken but feel that further, more drastic measures are needed to deal with the person who is continually making this shared accommodation uninhabitable for anyone else. We reiterate that David is content with his own room and wishes to stay, even though at present the rest of the house is too dirty to use.

David

Here also is a copy of a letter sent to Terry White from David’s social worker.

..............................................

"Re: 7 Thirlmere Close
I am writing in my capacity of care co-ordinator of David who resides at the above supported housing scheme to express my concerns about the appalling conditions that he has to live in. When I visited today, David showed me the kitchen, which was filthy. The sink was piled high with dirty plates and the worktop was covered in food. The fridge, which was also dirty contained an empty egg box, two half empty food cans, some butter and a half eaten meal of beans on toast, which David had informed me, had been there for two weeks. The living room again, was filthy and smelt, as did the whole house. The downstairs toilet had excrement over the pan and David informed me that the upstairs bathroom was worse. (I didn’t view this as I was feeling a little delicate - but when I viewed it on a previous occasion there was excrement on the floor. This was reported to Dean, Support worker.) David informed me that he is using toilet seat liners, because he is concerned about the poor hygiene and how it will affect his health. Finally, the back door is being left open at all times, despite this issue being raised at a previous meeting. I was particularly concerned to hear that the pay phone in the hall had been stolen and that the residents are unable to contact support staff if an emergency arises.

As I informed you today, fortunately, David is self sufficient. He has a fridge and a microwave in his room and is preparing all his own meals there. He loves his room and is really happy residing in the area. In my opinion, David is a good tenant and it is unfair that he has to tolerate this.

Yours sincerely

Terry “

______________________________

To be fair there have been positive changes to the facilities provided.
The TV signal has improved and towel holders are fixed. The rubbish on the landing was removed but has since been replaced by another pile.
Earlier this week a new lock was put into the back door and a shower fitted in the upstairs bathroom.

We also need to note that the gas has been left burning on several occasions and that the fire alarm is set off regularly, at all hours and there has always been a huge pile of dirty clothes on the dining room table.

Recently the staff did spend time cleaning up the house. They made a very good start but on Sunday the 14th of October we found the kitchen and toilet in their usual appalling state with a breathtaking stench throughout.

David’s friends and relatives are still unable to contact him as the telephone is still missing. We have been informed that when one of the tenants’ moves in mid November the emergency telephone will be replaced immediately.

Despite us all being assured at the first interview that there will be no smoking in the downstairs cloakroom, kitchen, bathroom, hall and stairways, this is clearly not true. In fact, the conditions have become much worse since the smoking ban has prevented the other residents from smoking in the local pubs. David is now concerned about the effect this is having on his health. We hope that when one of the offending tenants moves out mcch will take the opportunity to eliminate this hazard and consider the legitimate rights of non-smokers.

We trust that this letter will be of assistance to you in improving the conditions at 7 Thirlmere Close.

More on the disgusting state of David's house....

2007-09-09T20:19:00.000+01:00

Following our first meeting and an inspection by the housing manager a letter was sent to all three residents outlining their responsibilities. Some rubbish was cleared and the weeds in the garden were cut down. However the general squalor has got worse despite verbal assurances that matters would be rectified. David has to regularly leave the house to find a toilet clean enough to use and visits his gym, local swimming pool or a friends house in order to take a shower. This is the email I sent on the 12th of August. Nothing has changed. In fact, it is worse. The house is almost uninhabitable and David has not stayed there for several days..........

(To the landlords)

We are prompted by our recent visits to (the house) to update you following your letter to the residents. On Friday afternoon on the 10nth of August we noted that both toilets had faeces on the seats and inside the bowl. The one upstairs had diarrhoea splashed over the seat. They were both so filthy that David was unable to use them.

In the morning before we arrived David was due to clean the kitchen but another resident (as usual) had left so much mess including opened food containers, plates of half eaten food and clothing strewn everywhere that it was impossible to find a vacant surface. One of the care workers had arrived so we picked up David hoping that the resident responsible for the mess would be made to clear it. On our return there had been no improvement. The house was empty and, as usual the back door and side gate were left open with no sign of a back door key to secure the premises. Three bags of rubbish, which had appeared several days earlier were still blocking the landing and there was no light here or in the top toilet. DEavid has since told us that he managed to vacuum and mop some of the kitchen floor after we left.

We visited briefly on Saturday to find that more filth had been added to that of the previous day. I noted a full ashtray and two cigarette lighters in the kitchen. One of the other residents, the only one present over this period, set the fire alarm off twice while we were there. There was an unbearable stench of tobacco smoke everywhere. Both toilets were still too filthy to use and the lounge was in a similar state to the kitchen.

If you need them, I can send photographs. They are not too clear because the lights were not functioning upstairs.

The situation with the lavatories is an unacceptable health hazard. We urge you to give it a high priority. Might I suggest that, pending a permanent solution to this problem, you limit the occupant who is not toilet trained to using the downstairs lavatory only so that the one upstairs can be kept clean enough for the other residents.
David will be away for a week so we trust that this letter will help you to pursue matters to a satisfactory conclusion by the time he returns.

We appreciate the steps you have already taken but feel that further, more drastic measures are needed to deal with the person who is continually making this shared accommodation uninhabitable for anyone else. We reiterate that David is content with his own room and wishes to stay, even though at present the rest of the house is too dirty to use.

David's new home!

2007-09-09T20:00:00.001+01:00

This is some of the correspondence relating to David's new residence, which turned out to quickly deteriorate after he had moved in. This was due mostly to the unsavoury habits of one of the other tenants. I included photographs.

................................................

You spoke to my wife today and asked for the pictures from Tuesday the 19th of June and the notes used in our meeting a few days ago. It is worth noting that all of the pictures, apart from a few of the lounge, where taken when the house was unoccupied. That is, they do not represent a work in progress but the state the house is left in from day to day.

In addition the rubbish on the landing, outside and in the shed remains. The side gate was left open and the French window unlocked with the key still missing so that there is still no security.

Thank you for your time on this.

Notes for meeting on 13th June.

Persistent smoking in communal areas causing a constant obnoxious smell throughout house – I expect this to be rectified in accordance with the law by the 1st of July.

Still no shower

Excessive drinking often starting in the morning

Dirty dishes, clothes, dish cloths, food left out, dirty toilets etc. I was told that the source of this problem would no longer be at the house.

Pile of rubbish on landing and garden left for 8 weeks or more

Feeble TV signal in my room

Towel holders and rail still not fitted, no replacement carpet etc

Damage to car - no secure area for bicycle

No key for back door, side door left open – lack of security.

On the positive side……..
I appreciate the freedom to benefit from a healthy diet
I like my room
I like the area around Rochester and the esplanade
I am independent now, but know that that there are people around who can help if I ask.

However, apart from my own room, for much of the time the rest of the house is a no-go area. The fact that I have been ill should not mean I have to tolerate these conditions – it is not what I am used to.

Fighting the stigma...

2007-08-24T22:03:00.000+01:00

Just found this from Australia................

What is the conscious mind?

2007-06-20T10:28:00.000+01:00

“The conscious mind is a spin doctor, not the commander in chief. It is the great rationalizer, spouting off convincing (and false) reasons for why we do what we do."
(Pinker)

I write a blog on schizophrenia and one on religion. This quotation appears on both.

Tom

2007-06-13T18:55:00.000+01:00

Dear Tom,

You might like to leave a comment occasionally to make it look like someone actually reads this rubbish.

J

The benefits of exercise

2007-06-09T11:36:00.000+01:00

David went on a kiteboarding course on Thursday and Friday. He got himself up by 6:30 am and drove 30 miles to the venue. There was very little wind so little was accomplished and he missed his usual session at the pool and gym. Yesterday he told us that his voices were back and were causing him to worry. At our suggestion he did a two hour session at the gym until about 9pm. This morning he rung to tell us the voices had gone and that he felt a lot better. We have noticed before that he tends to regress slightly if he is prevented from following his exercise regime.

He has gone onto Denzapine. It is cheaper and the blood tests can be done locally. However, there is a marked increase in the frequency of his dyskenesia. His mouth is twitching more often and now his right eye is affected. I shall get a message to his consultant on Monday.

Are English Churches onto a nice little earner at the taxpayers expense?

2007-06-02T12:27:00.000+01:00

I have just seen the breakdown of expenses paid by the taxpayer for David's room. The item for rent is £61 (sterling) per week. There is an extra for £30 service charges giving £91 per week altogether. There are three occupants giving £183 per week rent or £732 per month. As I peruse my local paper I see that this is very close to the commercial rate in this vicinity. David's property is owned by English Churches, listed as the landlord. Presumably as a religious charity this organisation benefits from generous tax concessions. House prices have risen sharply in this area so the house has been a very lucrative investment in other ways.

From these figures it seems that English Churches is onto a nice little earner at the taxpayers expense. I think its charitable status should be in question.

Schizophrenia is a job for life.

2007-05-25T17:19:00.000+01:00

Recently I had conversation with the proud parent of a university graduate. It went something like this:-

"Oh, yes. Peter left Uni last year with a degree in history and now works at Clayson's. He got one of the best results in his year. How is David doing?"

"David? He went into schizophrenia. He's doing very well."

"What!"

"Yes. He's a schizophrenic. He passed all his tests. Did a brilliant practical. He completely smashed the opposition."

"Oh?" followed by a questioning look.

"He really enjoys it. The hours are a bit long but he gets to rest during the day and has a free medical every month. You wouldn't recognise him now. He has really filled out."

"Peter wants to go on to something else next year."

"Oh no. David is well into schizophrenia. He will be doing exactly what he does now in ten years time. Once a schizophrenic, always a schizophrenic. It's a job for life."

Exit stout party.

David is living with chain smoking alcoholics!

2007-05-22T22:35:00.000+01:00

One of David's housemates, lets call him Teddy, was so drunk he was incoherent by four o'clock this afternoon. He was the same the last time we visited. I am sure this is the third time in a week he has been paralytic and he went home for two days over the weekend. That is at least three out of five days. The other resident smells of drink most of the time and they are both still chain-smoking with all the doors open. David telephoned at eight o'clock to say that he was trapped in his room because the rest of the house is so unpleasant. There are also some strange, hippy-looking characters who visit from time to time.

David is uncomplaining but we, as parents are very unhappy. Would you like any member of your family to live with two chain-smoking alcoholics?

Also, we discovered that David now weighs fifteen stone. He was less than twelve stone when he was first admitted to hospital. One reason we wanted him to leave the last place was to stop the staff pushing unsuitable food onto him. I am beginning to think we are heading toward a crisis brought about, not by Davids illness but by the so called care system.

Intrusve, impertinent carers.

2007-05-22T10:48:00.000+01:00

Two days ago David phoned us in distress. One of the care staff had persisted in asking him what he had for breakfast. She is probably younger than David and I am sure, meant well. David saw the episode as a confrontation, refused to give any details about his eating habits and retreated to his room until she left. David is determined that people he does not know well or people he sees as authority figures know as little as possible about him. This includes information of where he goes and what he does during the day. The carer had no idea she had this effect on David. It is another instance of him not being able to judge body language, facial expressions or voice intonation. He was much happier after I had reassured him.

There is a basic staff training issue here.

On Monday Darren, another care worker - the bouncy, jolly one - took David to the benefits office with some personal documents. I anticipated a problem if David was expected to reveal these so he put them in an envelope marked "confidential". He phoned me later to say that it had all gone well and that he had not been asked to open the envelope until he was with the benefits officer and that he was much happier with Darren.

Day three in a new home

2007-05-17T00:00:00.000+01:00

We took David to a meeting with his consultant today. They had the longest conversation so far. Dr S agreed to tactfully let David's key worker know that he should not be quite so noisy, talkative and hypo with schizophrenic clients. David was really wound up after a morning meeting because this staff member insisted on trying to engage him in working out etc with the other clients. I have already tried to explain that David will not let anyone know what he does or where he is going. It is part of his illness and his psychiatrists have agreed that we should not challenge David on this as he does tell us everything.

We also noticed that David does not get a TV signal to his room. He cannot use the lounge because the other two chain smoke in there. As they leave all the doors open most of the house is out of bounds to David when they are home so David will have no-one to talk to and nothing to do in the evenings. If this smoking does not stop David will be very lonely.

Much better today

2007-05-16T10:23:00.000+01:00

When we visited David yesterday a care worker was busy cleaning up the kitchen. It seems that some frank comments from my wife the day before had hit home. The other two clients spent most of the afternoon and evening smoking in the lounge with all the doors open so that everywhere reeked. David found parts of the house uninhabitable. There is a clear problem in UK mental health facilities. The rights of non smoking clients are not being met.

However, David was robust and claimed he liked his room. He was also more cheerful when he found it took just fifteen minutes to get to his Gym.

David has moved

2007-05-14T21:40:00.000+01:00

David moved today. It is now the evening and we have serious misgivings.
The kitchen and toilets were filthy, one of the other tenants is known to us as he was thrown out of the David's last residence for being very unpleasant to other residents and for his unhygienic habits. The other resident is an alcoholic who was drunk by early evening. We were told he begins drinking in the morning and is often very high by the afternoon. Perhaps we shall feel better about the place after a nights sleep.

David's new home

2007-05-14T10:01:00.000+01:00

Today David is moving to a house that will give him more Independence. Three "clients" share a three bed roomed semi in a nice part of a neighbouring town. Staff presence will be in normal working hours only with a phone link for all other times. He will also do all his own catering. His mother and I will need to visit regularly at first to get him into a proper regime. David is very concerned about his weight and the diet at his present residence still serves up too many calories. There is a great need for staff training in this area.

The new house is only one hundred metres from the riverside where he can easily get to the countryside where he can jog. He can have his own fridge in his room so he will have more choice over his food. This can go two ways. If he has the will power and stocks only lean meat, vegetables and salad he should be able to change his lifestyle. If he can lose weight he will be a lot happier.

We have some concern over the cleanliness of one of the other clients - and the other two smoke everywhere. In due course we will have to rectify this.

Stealing back more life

2007-05-08T10:48:00.000+01:00

My early pessimism with regard to David's illness is now tempered with more hope. There are numerous reports outlining new findings about the condition.

Functional magnetic resonance imaging now allows the study of live subjects and can provide more detailed images. It seems that large areas of the brain are effected, in particular the grey matter. This, and the evidence from gene research is indicating a link with the genes responsible for the production of myelin.

Several genes are now known to be implicated or altered in people with schizophrenia.

Components in nicotine and cannabis have been shown to improve cognitive impairment in animal models. Cognitive deficits are symptoms which continue even after the successful application of atypical anti psychotics.

Cognitive behavioural therapy is once more being tried with some success.

More details will be found through my link to "schizophrenia.com - news items".

A new home for David

2007-04-28T19:13:00.000+01:00

As I had predicted the last new residence David visited was not accepted. I felt that it was a good sign that he was assertive enough to turn it down. The management at the house also thought that they were not right for David. In the interview he had been very picky about the cooking arrangements and the smoking.

He now has the offer of a new place and he has accepted. He moves in May. We are all looking forward to it. There is some staff cover for a few hours during weekdays and a telephone link for all other times. David will be responsible for all his own catering and medication. This is a big step.

Looking around town

2007-02-13T10:12:00.000Z

The day before yesterday (Sunday) David and I went for a long walk in the area around his proposed new residence. As I have said, the house itself is very good but the surrounding area is vile.
David had made up his mind to move but was repulsd by what he saw on Sunday. There were very narrow streets, old, scruffy, terraces with no front gardens and cars parked all the way on both sides on the pavements. Groups of strange (should I say ethnic) people staring threateningly. Not a nice place. I think I would prefer to sleep on the street in a better part of town. I do not think David will be going.

Visit to a place in town

2007-02-09T16:18:00.000Z

We took David to see a new residence run by the Carr Gomm group. We were very impressed with the room and the way the house was organised but unfortunately it is in a horrid part of town with densly packed terraced housing, no front gardens and cars crammed everywhere. The house was very good but the location gave us the creeps. David is stressed and becoming quite tetchy. He has started twitching with is a sign that he is finding tis hard to deal with. He invents so many things to worry about and still had unresolved issues which prevent him from making the most rational decision. We have left him to think things over.

A new direction for D

2007-02-07T19:11:00.000Z

We spent 2 hours at the Carr Gomm offices today discussing a possible move to a residence with a lower dependency. David was alarmed at the idea of food being prepared by other clients. He is going to be difficult to cater for as he insists on a healthy diet - somehing that some care staff (big ones usually!) have called a special diet.

We are also very annoyed at the idea that clients have the right to smoke in several parts of the building so that their fumes effect non smokers. He is justified - don't healthy people have any rights?

However he is keen to go and look so we shall see the place tomorrow.

A Two Hour Jam Session

2007-01-07T20:23:00.000Z

Spent two and a half hours strumming with David this afternoon. He played the most sublime lead improvising without repetition. It is a shame we could not record it but the sound quality of previous attempts has not been good.

If only he was this alert all the time - but alas there are still off days, probably due to his medication so he is not yet ready to move on or take on any employment.

Also started a new blog yesterday at http://enlightened-observer.blogspot.com/

Welcome progress

2007-01-06T15:56:00.000Z

David is still making progress. He is now driving and becoming more independent. He has had several days shore fishing with another client in his hostel. The dexterity with which he ties his own traces demonstrates an improved concentration although this does not show up in all spheres. He still avoids reading and the only other skill he will spend time on improving is his guitar playing which is amazing.

Two weeks ago his daily medication was packed wrongly. David took some extra closopine on two mornings before he noticed. He was very worried because he was so tired until late evening and could not follow his regime of swimming and gym. Luckily he noticed the problem hmself and we have had it corrected.

The staffing problems in NHS mental health units are giving us reason for concern. There seems to be no choice but to employ staff with limited skills, some not very bright, some ill informed and some with cultural issues. There are several clients in Davids hostel who, during the long periods when they are well, are far more capable than some of the staff.

Self Medicating

2006-09-19T12:53:00.000+01:00

We went to a CPA meeting last week. It was very productive. David is to self medicate and will be given a weeks medication in one go. This will give him more freedom and is another step toward his independance.

He has also began sea shore fishing with two others in his hostel. He is becoming quite sociable.

Davids driving

2006-09-05T20:07:00.000+01:00

David got his car today. We spent about half an hour making sure he had not forgotten how to drive. He was, in fact, very competant. It was nice to see a rection from him. None of the other clients have access to a car so this might do wonders for his self confidence.

Getting up to date

2006-09-04T20:19:00.000+01:00

At last David has his car back on the road - I shall deliver it tomorrow. It took the DVLA about 8 weeks to re-issue his license.
David continues to make progress. The abilify is helping a great del with the negative symptoms.

For the first time (ever) David has been sociable enough to go night fishing with two other members of the house. He actually said he enjoyed the company and the banter.

He accopanied us to the Stones concert at Cardiff. Jagger is an example to us all. At 63 he leapt about like a teenager for two hours with only a 5 minute break. I could not have done it when I was teenager!

New guitar

2006-03-31T20:29:00.000+01:00

We took David out to look at guitars today. He was far more receptive than he had been before, even a little assertive. The abilify seems to be doing its job. He found one that played very well and it was not too expensive. We went back to his room where he played like a demon. I hope to post more of his music soon.

It's a collared dove - we see several in the garden on any day.

Abilify seems to make a difference

2006-03-26T22:53:00.000+01:00

It was Mothers Day today so we went to see Rowland and spent a few hours with him. He was more conversational than he has been for four years. He looked more "normal" and seemed more assertive. The abilify may be responsible. If this lasts it has been a major step forward.

The previous boss left the hostel very suddenly after a bad report from a quality control team. I do not understand this because she was very good. So far I have been impressed with the replacement though.

It is a house sparrow.

"X"

2006-03-20T10:24:00.000Z

There is definitely a problem with staffing at David's hostel. The boss is excellent and so are most of the others but there is a quick turnover with good staff leaving, sometimes without even saying goodbye to clients they have known for several months.

However, there is one individual I shall call "X" who just does not get it. There are certain practices that would be deemed unprofessional in any area of work. There are some things a visitor would not expect to see. These would include a member of the staff, sometimes whilst being the only one on duty:

entertaining friends on the premises, sometime for the best part of an afternoon,
lazing about with a display of three or four personal mobile telephones and making lengthy calls to friends and relatives,
occupying furniture and rooms designated for the clients who are nowhere to be seen because they have retreated to their own rooms,
lounging in an office, feet up on the desk, no shoes or socks,
apparently asleep in the office
taking many minutes to answer the door or telephone, which does not occur when others are on duty

All of these happen regularly.

Yesterday I discovered that, despite being told by the person who administers David's medication, myself and having written instructions "X" has given David an unnecessary sleeping pill for three days. David was told he could ask for the pill if he needed it and so took the ones he was given as he did not know what the new medications looked like anyway. On one occasion he took his late doses at 5 o'clock in the morning after a night out. Consequently he was complaining of the effects until the evening. In my opinion "X" is not fit to continue.

The bird is a chaffinch.

Abilify - no side effects yet

2006-03-18T10:38:00.000Z

I telephoned David after two doses of 5mg Abilify. He seemed to be quite lively and reported no change whatsoever. I would expect any side effects to kick in very soon but any benefits to become apparent only after a few weeks. He went out "clubbing" on his own last night, expecting to arrive back at the hostel at about 5 o'clock this morning. He would not normally emerge until after mid-day so I have not telephoned today. We sent off his passport renewal but the photograph was rejected. I have to take more which will mean another trip later today.

We are sighting more birds in the garden but I am ashamed to admit that we cannot identify all of them so I did a bit of research. The one shown is a goldfinch.

Abilify

2006-03-15T22:29:00.000Z

We had a meeting today to discuss Davids care programme. We have decided to try "abilify" to sort out some of his residual symptoms. If it helps we can then lower his clozaril by 50mg per day. I am not too optimistic having just read of a trial in Canada where combining atypical antypsychotics did not lead to any benefit.

Music Sample

2006-03-10T00:07:00.000Z

Managed to persuade David to lay down a couple of tracks this afternoon. He was not at his best. Usually he is much more fluent and inventive. Nevertheless, this is worth the 2.9 Meg download. It sounds best in stereo.

Go to:

http://nbd.acandanex.co.uk

and click on the Music link. Follow the instructions to download the Mp3 file called "SharkFest".

Not so good today

2006-03-09T18:32:00.000Z

We needed a passport photograph but could find nothing recent where David did not have his mouth open. After about 15 tries I managed to get something I could use. Schizophrenia leaves sufferers with a certain look - open mouthed and expressionless. It was sad to be reminded how far he has deteriorated.

David has a night out

2006-03-06T11:11:00.000Z

I phoned David yesterday at the hostel. It was 1:30 pm and he was still in bed. Apparently the day before he went to the gym in the afternoon (for about 4 hours) and at about 7 pm took a 10 mile bus journey to the cinema followed by 5 hour a session dancing in a night club. He hired a taxi home at 5am the next morning, took his meds and watched "A Clockwork Orange" until 7 am.

I am amazed at his stamina, particularly as a dose of clozapine usually puts him to sleep within half an hour.

He is making progress, I think, although, from his accout, there has been little social contact.

New Directions - A Schizophrenia Journal

2006-03-05T19:19:00.000Z

I found another good blog site today at:

http://mindriddles.blogspot.com/

It is written by the father of a schizophrenia sufferer from the point of view of the carer.

I think I shall dedicate this blog to "David" and use it to continue the story of the recovery of my only child. He was first hospitalised with Early Onset Paranoid Schizophrenia 4 years ago at the age of 20. He did not take drugs - of any kind. He spent two years on hospital wards on several medications before Clozopine was tried. Two years ago he was well enough to be moved to sheltered accomodation - a room in a Welcome Trust hostel with 24 hour cover. My wife and I visit him frequently. I read as much as I can about the conditon so that we can assist in his recovery.

To begin you should go to "Losing David" at:

http://nbd.acandanex.co.uk

As David (not his real name) progresses I shall add more art, music and his observations to this site.

recording my own MP3

2006-02-26T19:32:00.000Z

I bought a Korg 4 recorder a few weeks ago but have not had much time to find out how it works. I managed to lay down a blues instrumental with just two guitar tracks. Find it at

http://sounds.acandanex.co.uk

What do you think?

Paris

2006-02-23T11:45:00.000Z

Went to Paris for three days. The Eurostar made me a bit travel sick and it was a bit colder than it was in the UK. Paris is a must visit. We went to the D'Orcy museum and the Little Palace (opposite the grand palace). There were lots of paintings by great artists - whole galleries of Cezanne, Redon, Monet, Degas, Van Gogh, Renoir, Mondrian, Burn Jones, Rodan sculptures and lots of Art Deco stuff. I wandered around a corner and came across Whistlers Mother. She looked to be in good health. You see all this stuff in books and cannot quite believe they are real when you see the actual article. Last May we went to the Louvre - The Mona Lisa kept me in one spot for almost an hour. She is magic. There really is nothing else like her. Da-Vinci knew something beyond words.

On Evolution and Religion

2006-02-21T14:17:00.000Z

There is so much evidence for evolution that no one person can know or understand all of it. Some people do not recognise or understand the facts. There is nothing wrong in admitting this. Even scientists who have been studying the data for many years exchange ideas about the details. However, there is no evidence for creationism or intelligent design. Intelligent design is not an alternative explanation because without evidence it is no explanation at all. It is clear to me that something sinister is developing. As a rationalist I need to know why so many people are adopting such a dangerous, primitive superstition. Belief without evidence is not faith, it is delusion. So, how can so many people be deluded on this and many other religious matters?

Childhood indoctrination accounts for many of the unfounded ideas we adopt when we are young and cannot shed in later life. Some, like me, are lucky. I come from four generations of atheists so, as for the supernatural and despite attending two religious schools, I have always been a sceptic. The indoctrinated cannot change a belief that has been engraved into their minds at an early age. I need to repeat that – they cannot change their beliefs. No amount of discussion or reasoning will convert them in any significant way. It is not their fault. They have been subjected to childhood indoctrination amounting to child abuse and deserve our pity and understanding.

That is the difference between them and me. I can be converted in a few minutes. All they have to do is direct me towards some evidence. In over 50 years of discussions they have been unable to produce any.

Appreciating this, it is clear that we have to be charitable and tolerate their foolishness as far as we can but our forbearance should be limited. We must find ways of protecting future generations.

2006-02-21T01:33:00.000Z

I went to look at some guitars today. Just cannot make up my mind.

Old Sewing Machines

2006-02-18T20:19:00.000Z

In 1997 I constructed a web site around my obsession with collecting very old sewing machines. I learnt HTML and lots of other techniques in its production. It is windows 95 based using free coding and graphics editors so by todays standards the presentation is dated but you may still find it interesting. It is listed in the links section opposite.

Schizophrenia - a Neurochemical Brain Disorder.

2006-02-18T01:04:00.000Z

I have just seen yet another example of the media’s distorted perception of the mental illness called schizophrenia. The reference was to someone who displayed two sides to their personality.
Schizophrenia is nothing to do with split personality – the split refers to the contradiction between the invasive thoughts inside the mind and the reality outside. It is these invasive thoughts and delusions (amongst other symptoms) that constitute the illness. The actions of the victim may be a rational response to what is happening to them. Go see my website on “Losing David” listed in the links section. ( http://nbd.acandanex.co.uk/ )