REQUEST FOR ASSISTANCE FROM PARLIAMENT FOR SEVERELY DISABLED
GRAHAM CHRISTIAN CLARKE.

Graham Christian Clarke has been living in an institution for the physically disabled since 1985 after having suffered a stroke at the age of 26 while working for the Department of Environmental Affairs on the remote Marion Island. He is appealing to parliament for assistance to supplement his current pension. He receives a civil pension that is R56935.44 p.a.

(R4 744.62pm). less than the amount he needs for the most basic care. The rent charged by the home he has to live in, is R6 535.44 p.a. more than this grant.

1.Background:
Marion Island
The weather station on Marion Island is used by the said Department for essential research, as is the case with Antarctica. The Department sends a team of 41 contract workers there for twelve to thirteen moths at a time. These people are volunteers who apply for the positions and are selected after strenuous tests. Because of the remoteness of the island and the lack of supporting infrastructure, the team members have to be highly skilled, responsible and devoted young men.

After having served on the island as ordinary member of the team on two expeditions, the department approached Graham Clarke to lead the expedition of 1984. According to the motivation to have him appointed, written by Mr. Sam Oosthuizen of the department he was an exceptional leader, completely versatile and one of the best members they ever sent to the Island.

Graham Clarke was appointed and consequently served as leader and paramedic of the team on the 41st expedition in 1984. After three months on the island he fell ill, experiencing exhaustion and acute headaches combined with nausea after a day out in the field where heavy snow made walking very difficult. This developed to slurred speech and vomiting and later he slipped into a coma.

There was no medically trained staff on the island and doctors in Pretoria were consulted by radio. They had to rely on information relayed by the team members on the island. The initial diagnosis was that he had contracted some form of meningitis brought about by sinus. Medical supplies on the island were very basic and limited and, as his condition worsened over the days, aeroplanes were sent to drop medication for the suspected menigitis on the island. He consequently began showing signs of developing pneumonia after which it was decided that he had to receive professional medical treatment as soon as possible. There are no landing facilities on the island, which meant he had to be rescued by navy ship.

Two doctors were sent along with the ship. Bad weather delayed the rescue operation and once they had him on the ship it was established that his condition was worse than originally thought. He also showed signs of developing quadriplegia. When the ship eventually returned to Cape Town Mr. Clarke was admitted to Tygerberg hospital more than ten days after he fell ill. After extended tests it was established that he had suffered a massive brain stem infarction (basically a stroke/thrombosis). He was totally paralysed from the nose down. This meant he could not move any of his limbs, swallow, or talk. (See medical report below.)

As his condition would be permanent Mr. Clarke, through his father, approached the Department for financial support. The request was rejected. The Commissioner of Workman's Compensation was also approached, but his decision was that Mr. Clarke did not suffer an injury caused by an incident while on duty and that legislation makes no provision for him to receive Workman's compensation. The Department felt they had no obligation to assist, as the expedition members were contract workers and not permanent staff.

It is important to note that the following was not taken into account:

2 Medical report on his condition published the SA Medical Journal in 1986.

"Locked-in" but not "Locked-out"

A case report
A. S. DE GRAAF, MERYL. D. RYBNIKAR

Summary: The application of modern electronic apparatus in-patients with the 'locked-in' syndrome can significantly improve communication. South African Medical Journal vol. 69 21 June 1986

The term 'locked-in' syndrome was introduced by Plum and Posner' in 1966 and since then has been generally accepted as a clinical concept. It describes a selectively de-afferented state of lower cranial and spinal cord neurons while leaving consciousness preserved. In most cases the only means of communication is by vertical eye movements and blinking.

Although most patients die after a cerebrovascular accident causing this syndrome, partial recovery with years of survival has been reported. As mental functions are fully preserved it is of paramount importance to establish some form of communication as soon as possible.

Although many papers on the 'locked-in' syndrome have appeared, scant attention has been paid to its management. Electronic, computerised devices can significantly contribute to the patient's well being. Attention is drawn to this aspect of management.

Case report A 25-year-old man was transferred from a South Antarctica Island weather station to the intensive care unit of Tygerberg Hospital. A detailed history was not available but it was learnt that his initial symptoms had appeared about 10 days before admission. He had developed a headache and slurred speech, and had the later become anarthric. This was followed by quadriplegia, urinary incontinence, and inability to swallow.

On arrival this strongly built and overweight male was mute, and only able to react to questions by blinking his eyes. His consciousness was somewhat decreased, pupils were equal and reactive, fundi normal, eye movements full and the corneal reflexes present and equal. Frowning was seen when emotionally upset or in pain, and vocalisation was a groan when crying. No voluntary movement below the upper face could be elicited. Sensation appeared to be largely intact. There was a flaccid paraplegia and urinary incontinence. Except for bronchopneumonia, further physical examination was normal; the blood pressure was 130/90 mmHg.

A tracheostomy was performed because of swallowing difficulties. Nutrition was provided by nasogastric tube, a urinary catheter was inserted and intensive physiotherapy and occupational therapy started.

Neurology Unit and Department of Occupational Therapy, University of Stellenbosch and Tygerberg hospital, Parow-vallei,

A. S. DE GRAAF md

MERYL D. RYBNIKAR, dot

Although sleep was not recorded polygraphically it appeared to he normal.

Except for heavy cigarette smoking and a strong family history of heart attacks and varicose veins, the patient's previous medical history was unremarkable.

Results of the following laboratory tests were normal: full blood count, erythrocyte sedimentation rate, serum electrolytes, hepatic and renal function tests, lipogram, CSF analysis, and aerological tests. Serum electrophoresis showed an acute-phase reaction, probably due to the bronchopneumonia. Blood coagulation studies were compatible with an acute stress reaction. ECG, echocardiogram, EEG, brainstem auditory evoked potentials and somatosensory evoked potentials were within normal limits. Computed tomography revealed an area of decreased density centrally located in the pons. Vertebral angiography disclosed a complete occlusion of the proximal basiliar artery. The vertebral arteries were patent.

During the following weeks spasticity, with both increased and pathological reflexes including an increased jaw jerk, developed. About a fortnight after the initial symptoms he could snake lateral movements with his head and lift it slightly from the pillow.

Rehabilitation could only involve the senses, information processing, voluntary eye and head movements. Based on these facts, an intensive therapeutic programme was developed.

'Interface', a new association recently formed In Cope Town with the aim of enhancing the quality of life for the mentally or physically handicapped by adapting computers, was contacted.

A BBC computer and disc drive was lent to the patient, specific software written and an interface made, the minimum number of movements required to control the computer being two.

An occupational therapist designed a harness to facilitate activation of the microswitches by the mandible. The switches needed to be static as they responded to very light pressure. The harness allowed lateral head movements, while eye contact with the monitor was not lost, thus minimising eye muscle strain (Fig. 1). The initial program (the alphabet) needed re-evaluation within a week, because it was too slow and therefore frustrating.

A record program was written, using the patient's ideas. Morse code was considered too slow and was not attempted. Other systems were not available, e.g. the long-range optical pointer.

The approach to the patient was very important since he did not yet fully realise the extent of his physical disability and the consequences. The idea of communicating through a computer was discussed over a few days and the need for adaptation explained.

The adapted computer enabled the patient to state his problems as they occurred and he was therefore able to obtain the appropriate help and therapy without delay, and to start working through his emotional reaction to his physical state towards self-acceptance. Thought content improved from 'They [the nurses) are nice' to 'Please do not talk when I am working on the computer' to precise instructions about how to change the software program.

One of the initial problems was hypertonus which built up to flexor spasms towards evening. This was alleviated through expression of emotion, the ability to indicate needs and neurodevelopmental techniques.

While using the computer, the patient had a tendency to flex his head and therefore increase flexor tone in the arms. The head position was carefully monitored to prevent this.

Within three weeks, endurance improved from 15 minutes to 40 minutes twice a day. The pace of the treatment was set by the patient. Previously there was a passive acceptance of all therapy and medical care. Now there was the stimulation of being able to exert control, self-expression and communication, which gave a more positive approach towards future planning the ability to help others through trying out equipment and systems gave self-confidence and improved self-image. Improvements were also noted in posture and control of voluntary movement.

The patient was then transferred to a hospital nearer his home. Future planning included wheelchair control, specific software programs to state needs or thoughts, a printer to encourage correspondence, increased access to computer control resulting in personal independence where possible and, ultimately, environmental control. Self-study and possible employment was a long-term project for the future.

A 'locked-in' state is the result of one or more strategically placed lesions in the intracranial pathways. Most lesions are localised at the pontine base because of basilar artery occlusion or critically placed infarcts in the pontine basis. Bilateral peduncular infarcts and selective bilateral defects in the posterior part of the internal capsule and genu have also been documented as causative factors. Causes other than infarcts have rarely been described; among these are: haemorrhage, abscess, central pontine myelinolysis, heroin abuse, and trauma. Polyradiculoneuropathy, myasthenia gravis and the terminal stages of motor neuron disease may also produce a 'locked-in' syndrome.

In our patient thrombosis of the proximal part of a diseased basilar artery was thought to be the cause of his condition because of the gradual onset and lack of evidence for a source of embolism. This is in agreement with the report of Costaigne et al.on basilar occlusions, 94,4% of which resulted from atherosclerotic thrombosis.

After basilar artery occlusion the development of a stable collateral circulation is crucial. This is largely dependent on the anatomy and patency of the vascular system and its anomalies.

In order to overcome ischaemia of the posterior circulation during the first critical weeks, treatment in the supine position has been recommended, specifically for subjects with fluctuating signs.

Opinions on the use of anticoagulants and drugs which decrease platelet aggregation are still divided. During the first few weeks elementary questions can only be answered by eye blinking and eye movements. Morse code signalling in later stages has been successfully applied in isolated cases. In less critically placed lesions, eye and perhaps head movements provide additional possibilities. Among the factors influencing the final therapeutic achievements are the patient's personality, intellect, mood and interests.

Sensitivity to the patient's needs is required from the medical and paramedical staff and the family.

Modern electronic technology can provide an ever-increasing range of specially adapted devices.

Addendum

Since submission of this article practical improvements in the alphabet were introduced; technical procedures facilitating its reading are in progress and the patient is starting and driving his wheelchair by electronic devices connected to his chin.

The authors wish to thank Miss R. van der Walt and Mr C. Joubert of 'Interface' for their knowledge, time and devotion to make the programs a success, our patient for his enthusiasm and determination, and Mrs A. Allen for secretarial services.

3 Medical Cover

During a meeting to discuss passports, power of attorney etc. before his first trip to Marion Island the new members were told by a representative of the Department that medical cover was unnecessary. Before Graham left on his second trip, he was advised to take out medical cover while doing team training as he was travelling a lot. He joined the Public Servants Medical Aid Association (PSMAA). Monthly deductions were made while he was on Marion Island but ceased once he returned to South Africa as his contract with the department had expired. As far as can be established this paid for his hospitalisation when he was moved to a Durban hospital. All support ceased when Graham was discharged from hospital.

Grahamís late father negotiated with the pensions department and "bought back" pension in order to assure Graham of a "reasonable" monthly pension for the rest of his life. This pension however, is substantially below his rent. The monthly civil pension is R1755.38 while the rent at the Cheshire Home is R2 300.00. (It is important to note that at the time there were only three institutions in the country that were prepared to accommodate Mr. Clarke because of his severe disability.) As his father who handled Grahamís financial and administrative matters at the time, is now deceased, it is difficult to obtain full and accurate information on who carried what part of the expenses at the time.

4 Care required.

Clarke has complete quadriplegia. He is paralysed from underneath the nose. He does have some neck movement, which means he can drive a motorised wheelchair with his chin. He is unable to speak but communicates by using an American computer (a Liberator) that is attached to his wheelchair. He operates the computer by pointing a light pointer attached to a cap on his head.

These two devices are absolutely essential for him to live a reasonably dignified life. Both are old and outdated, but costly pieces of equipment. It will cost about R25 000 to replace his existing wheel chair while a communication device like the Liberator would cost in excess of R80 000. As he cannot speak, the Liberator or a similar device is absolutely essential. It also enables him to operate a personal computer of about R10 000 that allows him communication with the outside world and other non-speakers and their organisations through the Internet. He does a lot of counselling in this way and is often asked by the University of Cape Town to assist with their patients. (See attached e-mail from Dr. Boonzaaier from UCT below.) Graham does not receive renumeration for this and sees it as his moral duty to help other non-speakers.

The personal care he requires is extremely intense. Showering, bed baths, feeding, drinking, lifting in and out of the wheelchair/bed, night care and miscellaneous chores throughout the day/night. He requires a permanent person/carer in his surroundings.

He currently resides in the Cheshire Home in Milnerton. It is a home with forty-five physically disabled residents. As intellectual stimulation is a problem, Grahamís dream is to leave this environment and live independently out of an institution. If he can buy a vehicle into which he can drive with his chair, like a Volkswagen Kombi, he will be able to pursue a career and work with non-talkers and people in rehabilitation full time. He is especially interested in working with disabled children and has already made a difference in helping staff at the Vista Nova School for the disabled, Interface (an organisation that works with augmentative and alternate communicators) and the University of Cape Town Speech Therapy Department. Unfortunately he is cloistered to the home he lives is as he has no means of transport to visit patients.

5 Financial Situation

 

Annual Expenses

Annual Income

Annual Shortfall

Civil pension

 

R21 064.56

(R1 755.38pm)

 

Rent

R27 600.00 (R2300pm)

 

R6535.00

Wheelchair maintenance

R4 200.00

(R350pm)

 

 

Electronic Equipment

Light pointing wires, charging wires for the Liberator etc

R2 400.00

(R200pm)

 

 

Insurance of essential equipment

R3 000.00

(R250pm)

 

 

Day to day personal costs. (Clothes, toiletries, medication, medical equipment, etc.) @ R600 p.m.

R7 200.00

(R600)

 

 

Batteries for wheelchair

R1 200.00

 

 

Telephone and Internet

R7 200.00

(R600pm)

 

 

Transport

(ONLY 4 X 10km. trips per month.)

R9 600

(R800pm)

 

 

Salaries (Add. Staff)

R15 600

(R1 300pm)

 

 

TOTAL

R78 000

(R6500)

R21 064.56

(R1 755.38pm)

R56935.44

(R4 744.62pm)

Please note that the above is a conservative calculation and does not include any normal recreational activities like visiting the cinema, etc. It also does not include replacing his essential equipment. Especially his wheelchair is very old and will soon need to be replaced.

His mother has been able to make some contribution. However she is now quite elderly (78) and might not be able to do this for much longer.

  1. Conclusion

Graham Clarke was an exceptional young man who was very highly recommended by his superiors for the sought after position of leader to Marion Island. This able bodied, hard working young leader of 26 had the potential to become an independent and successful person who would have been able to make an important contribution. It is impossible to determine what his state might have been if he had received medical treatment immediately.

He is now entirely dependent on people. His only undisabled faculty is his brain, which is clear and alert. This unfortunately increases the intensity of frustration. He needs staff, equipment and technology to live. His days are filled with humiliation, frustration and limitation in an institution. A better income would allow this brave man who served the Department of Environmental Affairs with distinction to regain some dignity and would empower him to again make a vontribution. We therefore request that this submission be considered with great empathy.

Letter from Dr. David Boonzaaier

Subject: Your professional help

Dear Graham
I went to see an AAC client in Stellenbosch on Friday. A Mr Nico
Visser, a builder, who is 35ish. He has MND and has been
deteriorating for the last 3 years - albeit slowly and atypically so.

He now communicates by very soft and quite dysarthric whispers and
types on his computer with a mouth-stick.

He desperately needs a conversational and I think would benefit from
a Liberator/Vanguard -level device, as he is completely cognatively
able and very enthusiastic.

I know that he would benefit from your wise counsel and personal
experience. I'd really appreciate your support.

All the best
David Boonzaier
Dr David Boonzaier
Director: Rehabilitation Technology
& Augmentative and Alternative Communication
Department of Human Biology
Faculty of Health Sciences
University of Cape Town

Addendum
ADDENDUM: PETITION-GRAHAM CLARKE

Although the presented document concerning the financial situation was created in February 2001, the initial research and costing was done in June of 2000. Since then there has been a substantial increase (R2400 per annum) in the Cheshire Home rent. As you will appreciate, other expenses have also increased.