I stop short of defining what is Cortico Basal Ganglionic Degeneration in my last entry.
I'm not going to bombard with some chim medical terms here.
It simply means the loss of nerve cells in the brain, the shrinkage of of some areas in the brain. The areas that shrunk is called cerebal cortex and basal ganglia. Therefore, we have this disease called Cortico Basal Ganglionic Degeneration.
What this disease does to one is a slow and painful process, over a period of 6 to 8 years, where our body's command centre (the brain) refuses to function certain departments. It calls up the Movement Department 1st, eating into its grip, its balance, its control of one's limbs, jerking uncontrollably at times (just like Parkinson's) and ultimately, the whole body is motionless.
Then the Speech Department is next, making it unable to swallow, unable to talk, unable to eat or drink.
And the sad part is - the mind is still active, recognising faces, remembering the past, understanding the present. Its like someone being kidnapped, being tied up and gagged, trying hard to free oneself, yet unable to make a single movement, a single sound.
This is rare disease. No one knows the cause. No one knows the prognosis. None of the pharmaceutical companies has any drugs to offer, not even one under clinical trial.
What do you think will happen to the organs since the body is practically dead? The liver? The lungs? The kidneys? Of course, they will listen to the Command Centre too!
Death will likely be caused by pneumonia.
Since there is no drugs for CBGD, why am I spending hundreds of dollars every month on medication for my mother? I have medication for Parkinson's, the closest medicine to CBGD. I have one medication for anti-spasm. One for gastric ulcer since she is on gastrostomy (feeding) tube. One for brain supplement. Brain supplement? I can't believe I just said that. Another one, again for Parkinson's and thanks to the patent protection, I'm paying $3 a tablet.
Does all these medication help her? In one way or another? The answer is NO.
As the name of the disease says it all - DEGENERATION. It will get worse and worse and worse, until death.
Then, I wonder....
Am I spending money buying time for my mum?
Or am I spending money prolonging her pain?
Or am I spending money delaying her death?
There is no cure, no answer, only one destination - DEATH. And then she will be release of the suffering.
As for me? I have no cure, no answer, only one objective - TO MAKE HER SHOW ONE SMILE ON HER FACE EVERYDAY.
I'm not going to bombard with some chim medical terms here.
It simply means the loss of nerve cells in the brain, the shrinkage of of some areas in the brain. The areas that shrunk is called cerebal cortex and basal ganglia. Therefore, we have this disease called Cortico Basal Ganglionic Degeneration.
What this disease does to one is a slow and painful process, over a period of 6 to 8 years, where our body's command centre (the brain) refuses to function certain departments. It calls up the Movement Department 1st, eating into its grip, its balance, its control of one's limbs, jerking uncontrollably at times (just like Parkinson's) and ultimately, the whole body is motionless.
Then the Speech Department is next, making it unable to swallow, unable to talk, unable to eat or drink.
And the sad part is - the mind is still active, recognising faces, remembering the past, understanding the present. Its like someone being kidnapped, being tied up and gagged, trying hard to free oneself, yet unable to make a single movement, a single sound.
This is rare disease. No one knows the cause. No one knows the prognosis. None of the pharmaceutical companies has any drugs to offer, not even one under clinical trial.
What do you think will happen to the organs since the body is practically dead? The liver? The lungs? The kidneys? Of course, they will listen to the Command Centre too!
Death will likely be caused by pneumonia.
Since there is no drugs for CBGD, why am I spending hundreds of dollars every month on medication for my mother? I have medication for Parkinson's, the closest medicine to CBGD. I have one medication for anti-spasm. One for gastric ulcer since she is on gastrostomy (feeding) tube. One for brain supplement. Brain supplement? I can't believe I just said that. Another one, again for Parkinson's and thanks to the patent protection, I'm paying $3 a tablet.
Does all these medication help her? In one way or another? The answer is NO.
As the name of the disease says it all - DEGENERATION. It will get worse and worse and worse, until death.
Then, I wonder....
Am I spending money buying time for my mum?
Or am I spending money prolonging her pain?
Or am I spending money delaying her death?
There is no cure, no answer, only one destination - DEATH. And then she will be release of the suffering.
As for me? I have no cure, no answer, only one objective - TO MAKE HER SHOW ONE SMILE ON HER FACE EVERYDAY.
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