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By Gardy Chacha
Wouldn’t it be weird to wake up one day and find that you are unable to practically do anything, including; speaking, eating or going to work? People with locked-in syndrome experience this weird scenario.
They develop complete paralysis, unable to move or do anything for themselves; yet entirely aware of what is happening around them and their own situation.
The syndrome can result from brain injury, diseases of the circulatory system, damage to nerve cells or medication overdose. In a journal published by America Heart Association titled Stroke, researchers note that ‘locked-in’ patients have restricted motor function but remain conscious and aware of the environment.
Tony Nicklinson, 58, who had sought to end his ‘dull, miserable, demeaning, undignified and intolerable’ life after he was left paralysed below the neck, following a stroke seven years ago, wept uncontrollably on international television when he lost a case to be given rights for him to undergo assisted suicide. Tony died from severe pneumonia last month, a week after he lost the case forging for legalisation of assisted suicide.
Victims of the condition are unable to speak but might like Nicklinson, be able to communicate by moving their eyes. Locked-in syndrome patients experience total paralysis of all the muscles. This means they are unable to speak or move. They can usually move their eyes and are most times able to communicate by blinking.
Causes
Locked-in Syndrome (LIS) has been determined to result from lesions at the brainstem (medically termed as pons). The severe impairments result from the complete disruption of the motor pathways controlling eyes, face, trunk and limbs movements, as well as breathing, swallowing and phonation.
Another locked-in syndrome sufferer—who can only be named as Martin by the international media—had sought permission for volunteers to help him get to the Dignitas clinic in Switzerland.
“I wish to be able to exercise the freedom, which everyone else would have—to decide how to end this constant tortuous situation,” Martin said in a statement issued by his lawyers. At the clinic, Martin wanted to be euthanised to end his ‘painful’ existence.
Regarding Tony and Martin’s conditions, a UK publication quoted someone to have described locked-in syndrome as “terrible predicament faced by these men struck down in their prime and facing a future bereft of hope.” This statement might seem cantankerous to many but if the computer truly communicated Tony’s feelings, then such a statement would be understandable.
“Although I didn’t want to raise my hopes, it happened anyway, because a fantastic amount of work went into my case and I thought that if the court saw me as I am, utterly miserable with my life, powerless to do anything about it because of my disability, then the judges would accept my reasoning that I do not want to carry on and should be able to have a dignified death,” he said through his computer monitor.
Treatment
Although there is no cure, therapy can sometimes benefit victims. One type of therapy, functional neuro-muscular stimulation, uses electrodes to stimulate muscle reflexes. According to experts, this may help activate some paralysed muscles. In rare cases, some patients may regain certain functions, but the chances for motor recovery are very limited.
There is neither a standard treatment for locked-in syndrome, nor is there a cure. Stimulation of muscle reflexes with electrodes has been known to help patients regain some muscle function.
Other courses of treatment are often symptomatic. Assistive computer interface technologies such in combination with eye tracking may be used to help patients communicate. New direct brain interface mechanisms may provide future remedies. Some scientists have reported that they have developed a technique that allows locked-in patients to communicate via sniffing.
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