This article is written by:
Dr. Hasanah Che Ismail,
Consultant Psychiatrist,
Department of Psychiatry,
Hospital Universiti Sains,
Kubang Kerian, 16150,
Kelantan.
What I am going to present to you here is really nothing spectacular than a case of chronic schizophrenia. Even among professional colleagues, the news on my presentation of a case of chronic schizophrenia were met with a disappointed and disapproved response of “what is so interesting in a chronic case of schizophrenia?”. However, for me the illness schizophrenia is most enigmatic and intriguing illness, in the sense that it led us to plethora of abnormalities described in the brains of patients with schizophrenia, but from which surprisingly few conclusions can be drawn. The reason being due to the fact that up to now, there is still no laboratory test to determine the illness, and researches into identifying the aetiology were not easily reproducible as the illness itself is heterogeneous in manifestations and there are always many comfounding factors.
Not infrequent that people equated schizophrenia as madness, and also many even in the field of psychiatry itself felt that it is impossible to bring back a chronic case of schizophrenia to a life as before the illness, and that was in fact my feeling in the past.
The anguish is real both to the victim and the victim's loved ones, who long for the return to a full rich life which may forever remain a memory. Even when patient responded to treatment, showing signs of returning to a healthier mental state, some stubborn symptoms tend to remain, disabling the daily routine and serving as a constant reminder of the deterioration wrought by the illness.
Each time the patient relapses and the condition
deteriorates, the family experiences deepening frustration and helplessness.
As the patient gradually changes into a hollowed shell, a pale replica
of a once functional being, the likelihood of a full recovery becomes ever
more remote. This was the story of the patient and his family, that will
be presented here, and the frustration and hopelessness of the family were
to some extent paralleled by similar feeling on my part as the clinician
treating him.
Patient is Mr. AIB. He was first seen
on the 5th of September 1993, few months after my return to Hospital Universiti
Sains as a consultant psychiatrist. He was 37 year old at that time, single
and unemployed.
He was brought by his father with a complaint of change in behaviour for over one year, and few days prior coming to the hospital, he was uncontrollable at home because he became restless and aggressive.
The change in behaviour was precipitated when he began working as a general worker in a school. He felt that the staffs at the school were talking about him, and that they did not like him. He was unable to get adjusted to his new job and working environment. Thus his father had helped him to get a transfer to another school. Unfortunately he complained of the same experience at the new school.
While at home he was noted to be preoccupied and preferred to be on his own. He also had difficulty sleeping at night. After three months working in the second school, he refused to continue his job as he believed that the people at place of work were talking about him over the phone.
Since then he had stayed at home. He gradually deteriorated to social isolation. During that time he seemed to be lost in his own thoughts and he rarely communicated with family members. His family had taken him to numerous traditional healers but he had not responded significantly to any of the treatment.
Few days prior to coming to hospital, he turned restless and showed aggressive tendency even to family members. As such the father had brought him to HUSM.
He was subsequently admitted for inpatient treatment.
He never experienced similar experience prior to the onset of this present problem and had no record of medical illness in the past.
Prior to the illness, he was a shy person to the opposite sex, but able to socialize and made friends with males. He had many friends but he was unable to say which one was his close friend. He had not committed any antisocial behaviour in the past.
He passed his SRP after second attempt, and he obtained grade 3 in SPM after the fourth attempt. He failed his STP four times. Later he took up a clerical job in Kuala Lumpur and after three months he quitted to join a course as an assistant pharmacist. He failed after the first year and he regretted his failure as he was already near 30 year old at that time and thus too late for him to join the government service.
His father is a retired schoolteacher. Father was very supportive but tends to be quite critical of patient's behaviour and condition.
AIB is the eldest of five siblings. His father is a retired schoolteacher and in his family his paternal grandmother had a period of abnormal behaviour lasted for six months. Her abnormal behaviour resolved after traditional treatment. AIB's father was unable to describe the nature of the illness as it occurred a long time ago.
AIB stayed in the psychiatric ward for one month during which he was treated with anti psychotics in the form of tablets and injection. After one month in the ward his psychotic symptoms in the form of hearing voices of his families criticizing him (auditory hallucination) and his belief that people were out to harm him (persecutory delusion) resolved.
His father was quite reluctant to take him home as he worried that AIB might turn aggressive again. However after seeing that his son maintained improvement and continue taking his medication while on home leave, he was confident to accept the discharge from the ward.
Since discharged from the ward, AIB was brought regularly every month to the outpatient clinic for follow-up. However AIB had failed to regain his pre morbid personality and functioning. He had deteriorated to a life of seclusion in his room, preoccupied with his own thoughts. On asking AIB of his thought content he was unable to say that he has much thoughts, in fact he has much difficulty in communicating as he was slow to respond and has poverty of speech.
According to his father AIB had difficulty sleeping at night and needed to be given sleeping pills quite often. If not instructed and pressured AIB will go without a bath or meal during the daytime. He said that he felt too cold with the water even if he bathe with warm water.
Each month on follow-up, AIB’s condition often haunted me, for he had slowly lost his body weight and his skin seemed to be a fertile ground for fungal infections. He was slowed in his movement and he had almost no noticeable facial expression (flatted affect). AIB was able to say that he can't make himself move into activity, even activities that had been so simple to him in the past. He had no interest to listen to radio, watch TV or read the newspaper. He seemed to have lost all pleasure in life and he felt that his life was meaningless and he had no more hope of being cured. He often thought about death, but he still know that it is against his religion to take his own life.
All along he has been continued on the same medications as he was in the ward, i.e. Tab. Haloperidol 10 mg twice a day, Benzhexol 2 mg twice a day, and monthly injection with depo Fluanxol 40 mg. At some time during the follow up he was taken off the tablets for a while, as I felt that the side effects (parkinsonism) from the anti psychotics were exacerbating his negative symptoms or deficit syndrome (characterized by flattened affect, reduced goal directed activities, reduced speech and thought content, inability to feel pleasure, no motivation etc.).
He had became restless and irritable without the anti psychotic, and thus it was reinstituted. Because he was having poor sleep most of the time, tablet diazepam 5 mg was added every night. An antidepressant prothiadine 50 mg on night, was also added as he had been significantly depressed and had often thought that his life was meaningless and that death was much more attractive than his life of suffering. However he never had any intention of taking his own life as he still believed that according to his religion, one cannot take his or her own life.
At this point in time, I as the therapist was equally helpless as AIB and his love ones, in relieving him of his suffering. All those medications seemed not to be working and he had descended into a life of bleak darkness as the time goes by. As his therapist, I had exhausted all ideas of helping him. Even a well planned token economy system to be carried out at home failed as he preferred to be left alone rather than gaining points for exchange with cigarette, the one thing that he still seemed to be quite keen in having.
At this point I was only able to hope that either one of the many medications that he was taking will work for him. I had also substituted Tab Haloperidol with other conventional anti psychotics but Haloperidol seemed to work best in controlling his relapse into paranoid aggression. What I could do was to to add multivitamins, dulcolax and all the supportive medications that were available to relieve him of his added distressing symptoms. My helplessness was reflected by the recipe of medications that I prescribed to him. The peak of my therapuetic nihilism was when I started giving him folic acid tablets and neurobion in the hope that some miraculous answer will be brought by this good vitamins.
I think during all those years when he was under my follow-up, his father had really helped him to hang on to his life. AIB's father will take him to see me every month, without fail, and had ensured that AIB had his medication and injection. Besides that his father had also supervised his cleanliness and food intake during the four years he lost his ability to take care of himself.
Then in early 1997, risperidone was brought into Malaysia, but it was still not listed in the Ministry's pharmaceutical list. The cost of risperidone was also expensive as 1 mg tablet cost $2.20 in the pharmacies in town. However I was able to close a research deal with the company supplying the risperidone i.e. for a free drug supply for six months, for 30 of my patients.
Thus AIB was one of the fortunate patients that received the six months aid in mediations. AIB's father was keen and consented for a change to this new drug, and he was put on Risperidone 1 mg twice a day. All his other medications were taken off except for benzhexol 2 mg daily to reduce the remaining parkinsonism and diazepam 5 mg at night which was to be tapered off slowly.
He was reviewed every fortnightly and on each visit he showed more improvement. His body weight increased from 50 kg prior to Risperidone to 60 kg after two months on the new drugs. After two months he had gone to take a driving license on his own and had passed the test with no difficulty. He also had started to go out with friends to social gathering and fishing. He took a job as assistant lorry driver after three months on the medicine. At that time he felt 80% improvement.
He made continuous progress and for the last six months he had only taken Risperidone 1 mg nightly, with occasional drug holidays and had been working regularly as a labourer. He works six days in a week and he earned $30 a day.
Today on 6th August 1998, at exactly 15 months after starting the medication risperidone, AIB feel that he is 100% back to normal. He had been feeling this way since the past 8 months or so. He is now 70 kg in weight, physically fit and tanned with hard labour under the hot sun. He said that he had never felt this good before. He is now like before his illness, in fact better as he now had a dark experience in the past that enable him to appreciate his functioning life at present.
He felt so healthy now, that it made
him feel confident that his illness will not recur again. He is hoping
that he can stop taking his daily risperidone, but he is still taking it
as regularly as he could because he was advised to do so by me.
As in the case above, it exemplify the role of an association as PERSIKOL in aiding people with the same fate as AIB. Without PERSIKOL's help this novel anti psychotic may not be bought by the patients. Many psychiatric clients/users/patients though able to afford the medication, were quite reluctant to buy it from the outside pharmacy at its present cost. Since the hospital could not afford to include the drug in its pharmacopoeia many psychiatric clients still preferred the cheap conventional anti psychotics that are available in the hospital.
Sometime the attitude of the therapists themselves maintained the clients with the same old treatment even though it was obvious that the quality of life of the clients were compromised by the inefficacy as well as the side effects from the conventional anti psychotics. Changing medication needed the therapist to monitor his clients' condition more closely and also needed him to give more counselling to clients. These type of therapists may find it easier to continue with the same medications as long as his clients do not turned restless or aggressive with the conventional drugs.
However having presented the story of one of my patients here who had recovered from chronic schizophrenia from risperidone, I also have to remind that risperidone is not a miracle drug for every person with chronic schizophrenia. There were patients whom I had put on risperidone that had not done well and in fact from my practical experience, once a person do not respond to risperidone over a dosage of 6 mg over the first three months, there is no reason to continue with the drug if he happens to be from a low social economic groups, and could not afford the drug.
From my experience, the optimum period of improvement as assessed by PANSS (Positive and negative syndrome scale) was three months. Patients do improved further but the improvement between the three and six months period was not significant. Further improvement may be seen if added behavioural and psychological treatment were given.
If a person takes risperidone at the recommended dose of 6 mg a day and if he have to buy the drug from outside then he have to spend $396 per month (1 mg x $2.20 x 6 mg x 30 days). However from my experience many patients who did well with the treatment can be maintained on much lower dosage, e.g. 1 mg to 4 mg a day. Recognizing patients problem in meeting the high cost, PERSIKOL had tried very hard to make the drug available to them at a lower price. However being a new association, and a non profit making association, we do not have much fund and thus this sort of aid can only be offered to limited number of clients. So far our effort was supported to some extent by the company providing the drug but to continue this program in aiding clients not only with schizophrenic illness but also depressed clients who need to be treated with costly Selective Serotonine Re uptake Inhibitor and other novel drugs, PERSIKOL needs more support and aid from other resources.
Thus PERSIKOL hope that as many people come in and register and be a member, as the annual fee amounting to $5/= can be gathered to increase PERSIKOL's fund. Besides that we in PERSIKOL are planning a launching ceremony for PERSIKOL where on that day, we will hold an exhibition, a fun fare and a seminar to the public.
The date of the event will be on the 18th of September 1998, the venue will the the DEWAN HAL EHWAL PELAJAR, Universiti Sains Malaysia, Kampus Cawangan Kelantan. The exhibition and the pasar ria will start at 8.30 am and a free Nescafe drink will be provided by NESTLE till 5 pm. At night at the same site, we are going to hold a seminar on "TEKANAN PERASAAN DARI PERSPEKTIF ISLAM DAN PERUBATAN" and the eminent speakers will be Dato' Haji Syukri Mohamad (Timbalan Mufti Kelantan, Darul Naim) and Prof Madya Haji Azhar Zain (Consultant Psychiatrist, Department of Psychiatry, HUSM).
The above story on my patient examplify that
a person who was once doomed to a life of living dead can returned to a
rich meaningful life by just $1.40 a day (PERSIKOL's sponsored price of
1 mg risperidone). We as clinicians and paramedical staffs in Hospital
Universiti Sains are trying to give more than what are required of us by
our official duties to help many more unfortunate people in the community
but we will be more motivated to continue this effort if you who are reading
this can also show your support. So do come in full force on the 18th of
September to our exhibition, pasar ria and public seminar. Also register
and be a member of PERSIKOL and last but not least show us your support
by leaving behind your supportive words in our guest book.