‘Use it or lose it’: a way of life and a goal!

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‘Use it or lose it’: this popular phrase has significance and meaning much greater than the simplistic choice of words fools us to think. It’s a phrase that I use in my personal life as admonition, as reminder, as a reason and even as a goal. From a physical point of view, any muscles that you don’t use will lose their strength, if you don’t walk your legs will become weaker and thinner. If you don’t keep using a mental faculty you tend to lose it, eg if you don’t keep practicing arithmetic or a language, you become less able to do it . If you don’t use any of your gifts or talents, they diminish with time: at age 5 all of us are artists and abstract thinkers and story tellers, but how many of us go on to be that as adults? Even attitudes like kindness, benevolence, generosity, consideration, compassion…. if we don’t keep practicing these , we lose them. As a goal and an admonition, I use this phrase to remind myself that any of my material belongings that I don’t use, I should lose them to put them to better use ( mind you, I have problems carrying out this goal, as my husband will be able to attest who is witness to the ever increasing size of my shoe collection, half of which I will never wear!)

Coming back to the subject of Brain Injury: this phrase holds most importance in directing rehabilitation and managing the residual effects of the injury.

Discussing the acute management of brain injury {which may include collections of blood in the skull cavity, or penetrating objects or infection, or fluid build-up or brain swelling causing pressure or damage on brain-stem}  and also the management of extreme situations in which brain injury leads to coma, minimally conscious state or vegetative state etc is beyond the scope of this article. I have deliberately limited myself to focusing on the general management of brain injury survivors who are left with significant deficits, but are conscious.

The following are the problems or effects of brain injury that I will have in mind while giving a general account of management of these patients:

Seizures; Paralysis; Cranial nerve damage affecting face, smell, swallowing, vision; Cognitive problems; Communication problems;Behavioral change; Emotional change; Sensory problems: ringing in ears, balance, hand eye coordination, double vision, or visual field defects.

The first and foremost requirement of all brain injury patients is movement and change in body positions. There are several reasons to stress on the importance of movement, both active and passive. Regular movements will help in preserving the muscles tone and also aid in quicker recovery. For patients who are paralyzed ‘passive movements’ should be done: this means that even if they can not move the limbs themselves, someone should move it for them. In most cases physiotherapists are employed to carry out this task, and they will take care to regularly move and stretch all the different muscle groups. It is important to note while carrying out passive movements all opposing muscle groups should be moved, for instance, making a fist of the hand, and then opening all the fingers and stretching them out as far as possible. A well trained physiotherapist or doctor will teach these passive and active movement techniques to the patient and their carers, as they know that this is not a matter of a day or a week or a month, but this should be carried out continually, with or without the therapist.

In addition to physiotherapy of muscle groups, it is important to pay attention to the posture and balance. If a head injury patient spends a lot of their time lying down on the bed their bones can become weak (osteoporotic) and this can result in fractures later on. So efforts should be made to encourage antigravity movements: from sitting in chair, to standing and then ultimately walking. If it is not possible to even sit or stand un-aided (especially in the early stages of recovery), then support and help can be employed. For instance, an antigravity stretcher can be used, whereby the person can be strapped on to it and then tilted to stand straight.

The longer the time on the bed, the greater the complications for the patient. The two main concerns for long term immobility or bed bound patients are risks of clots forming in their veins, and risk of bed sores forming on their pressure points. My readers who are not medically inclined may not immediately appreciate what terrible menaces the clots and bed sores can be: both these can be life threatening to the patient.

The clots in the deep veins can form as a result of prolonged in-activity, and can dislodge and travel up with the blood stream and get deposited in areas like the lungs or brain. This can lead to conditions like stroke, pulmonary embolism and death. While regular active and passive movements of a person will lessen this risk, some patients may need to be given extra medication in form of injections or tablets to make their blood thin and prevent the formation and propagation of clots.

Bed sores occur on bony pressure points if a person is left lying for too long. The common sites of bed sores are the bottom of spine, the bony parts of the hips at the back, the heels, the shoulder blades etc. The reason why these happen is because prolonged pressure ( the weight of the body) on these bony parts obliterates the blood supply to the skin in these areas. Without the blood supply the skin dies and opens up to form an open wound which extends down to the lower layers. The bed sores can get infected and can be very hard to treat because the protective layer of the body which initiates healing, i.e, the skin is not there! Infections from the bed sores can seep in the blood and cause septicemia, or they can infiltrate locally and erode the surrounding structures by gnawing at the tissues. Bed sores can be prevented by religiously moving the patient and changing their sides to make sure the bony points are given a rest and a chance for blood to circulate all around.

Why am I stressing so much on movement ( if it is already not obvious enough)? One reason is that in some countries and cultures, especially the asian cultures, there is tendency to show love and care for the ill by offering to do all their work for them and for allowing them to rest and minimize movements. While this attitude would be kind and appropriate in certain debilitating diseases like cancer, it is certainly not advisable, rather it is discouraged for patients with neurological  diseases, especially brain injury. It is the time soon after the brain injury when healthy coping habits can be inculcated both in the patient and the carers by stressing on and encouraging movements.

In developed countries with comprehensive rehabilitative facilities, the management of a brain injury patient is considered a joint effort of a team of trained individuals, each of whom take care of specific aspect of the road to recovery. Some of these professionals are:

Physiotherapist: dealing with movement and posture of all muscle group, balance and mobility.

Occupational therapist: who helps the person learn, relearn or practice skills of everyday living, like holding cutlery, utilizing equipment etc.

Speech and language therapist: all patients with a brain injury receive a speech and language therapist assessment, who first determines whether their swallowing and speaking apparatus are in order or not, and how much and what kind of speech and language deficit the person has suffered. In patients with speech problems, the speech and language therapists help improve communication skills, use alternate communication methods if speech is too severely affected and use assistive communication devices.

Neuropsychologist or Psychiatrist: for patients whose effects of brain injury are principally in form of behavior problems or emotional problems, the neuropsychologist and psychiatrist plays key role. But even for other patients, their involvement with the patient will ensure detection of subtle psychological problems which invariably result from a life altering event like brain injury is helpful.

Social worker, who deals with issue of access to service agencies, care decisions and planning, communications between care providers and family etc.

Nurses, who play a pivotal role in the in hospital care of brain injury patients and might also be required to be involved in subsequent management to ensure general health and wellbeing of the patient, especially those who are not totally ambulatory or who require assisted bowel and bladder care, or breathing tube care or wound management etc.

Doctor: a rehabilitation doctor, or a neurologist or a physiatrist, someone who overseas the complete care and ensures a holistic and well integrated care plan. They are important to identify the problems, physical, psychological, behavioral, cognitive, etc.They will look after and manage medical conditions like seizures for which anti-seizure medication need to be provided and monitored. They will also involve other specialists to help in managing the other problems patients may have like visual field defects, tinnitus, etc.

Other specialists like vocational consultants, recreational counselor etc.

Family/carers/loved ones: The role of the family/ carer/ loved one in the ultimate outcome of a brain injury survivor can not be over emphasized.  By the miraculous powers of love, hope, faith and commitment, the kith and kin can motivate, inspire and encourage the patient to work hard and carry on. In the developed countries, where there are well structured rehabilitation facilities, the general observation is that those patients fare better who have a loved one or a family support system keeping them going. The ties of emotion and feeling are a strong potion for even the worst ailment. But another more measurable reason for this is that even the most specialized therapists will only be investing a specific number of hours a week with the patient, but will not be able to carry out the practices continuously as is required for real improvement in them. While the role of therapists can not be denied in identification of problems and finding a solution for them, it is the continuation of these practices by the patient, which is encouraged by the family, that actually brings out results.

On the other hand, in countries where rehabilitation facilities are not well structured, the family invariably becomes more involved in patient care and management than they are ready for, or even able to. My purpose of identifying the areas that need to be monitored and outlining the role of the specialists who manage them is to enable common people see that these are the roles that they can adopt in order to provide good care to their patients. Even if there were good rehabilitation centres present in some of these places, people would not be able to afford them as they are generally poor populations. In a country like Pakistan, where the comprehensive rehabilitation facilities are either not comprehensive enough, or are very expensive, the survivors of brain injury have to rely on their family for support.This is not an easy situation, but with the right guidance and training, it can be done!

Arshia. June 30, 2013.

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