Motor Neurone Disease aka. ALS
Part of understanding pathology is understanding the patient who lives with the disease. It is very easy as a medical student to view every patient encounter as an "interesting" pathology, a list of conditions to collect in your logbook so to speak.
But two days ago I was slapped in the face yet again in Rehab Clinic when I met a severely tired, skinny and strange man with his wife. A man diagnosed with a horrible neurodegenerative disease - Motor Neurone Disease otherwise known as Amyotrophic Lateral Sclerosis or Lou Gehrig's Disease.
For those of you who has never heard of this disease, it s the very same ALS made popular in literature by famous "Tuesdays with Morrie" by Mitch Albom. You can read more about the disease here.
Now the thing about ALS, it's a disease that affects only nerves that innervates muscles. Everything else is intact. Sensations, cognitive function, thinking, reading, counting, reasoning, joy, hearing, smell - all other functions that make us human are left untouched.
And because the disease is progressive more and more muscles get paralyzed; slowly, over time.
We use muscles to walk, so independence would be the first to go.
We use muscles to write, and when that goes chances are we would be unemployed.
We use muscles to remain continent, and when that goes we become completely dependent.
We use muscles to produce legible speech, and when that goes we lose the power to communicate.
My patient has reached the level of not being able to produce legible speech.
We use muscles to breathe, and when that goes is when we die of ALS. This is his fate in a not too distant future.
There is no cure, only the promise of an expensive drug that can buy more time like all other neurodegenerative diseases. A drug I know full well he will not be able to afford.
But my patient does not know that.
And in the meantime, he is a man full of vigor trapped in a shell that refuses to move. His wife tells me he was an active sportsmen, and up till a month ago (when he lost his speech) he still had happy afternoon tea with his friends. He worked for the government all his life, an honest earning man who raised his children well.
And now he is alone, with only a wife who is aging as much as he is, completely dependent on her care.
...
ALS is rare, who can blame physicians who are not neurologists from mismanaging? But could we do better than that? Surely we can.
He shouldn't be in a Rehab clinic. At his rate he should be in palliative care.
Yet they are beating around the bush. Stuck in a rubbish healthcare system with no proper coordination between departments. No proper specialist to care for the right patient and the right quota.
He could have used his time to get his affairs in orders if he was given proper prognostic information.
This stresses to me the importance of studying. Rare disorders may be difficult to remember but it is better to know something than nothing. Every physician can make a difference. We should never let the system defeat us in patient-centered care.
I wish him well in the rest of his life. May divine intervention make his remaining days worthwhile and full of beautiful memories before he finally stops breathing. And may there be comfort to those he will leave behind when it happens.
#inspired to study neurology, and improving care in neurodegenerative disease.
But two days ago I was slapped in the face yet again in Rehab Clinic when I met a severely tired, skinny and strange man with his wife. A man diagnosed with a horrible neurodegenerative disease - Motor Neurone Disease otherwise known as Amyotrophic Lateral Sclerosis or Lou Gehrig's Disease.
For those of you who has never heard of this disease, it s the very same ALS made popular in literature by famous "Tuesdays with Morrie" by Mitch Albom. You can read more about the disease here.
Now the thing about ALS, it's a disease that affects only nerves that innervates muscles. Everything else is intact. Sensations, cognitive function, thinking, reading, counting, reasoning, joy, hearing, smell - all other functions that make us human are left untouched.
And because the disease is progressive more and more muscles get paralyzed; slowly, over time.
We use muscles to walk, so independence would be the first to go.
We use muscles to write, and when that goes chances are we would be unemployed.
We use muscles to remain continent, and when that goes we become completely dependent.
We use muscles to produce legible speech, and when that goes we lose the power to communicate.
My patient has reached the level of not being able to produce legible speech.
We use muscles to breathe, and when that goes is when we die of ALS. This is his fate in a not too distant future.
There is no cure, only the promise of an expensive drug that can buy more time like all other neurodegenerative diseases. A drug I know full well he will not be able to afford.
But my patient does not know that.
And in the meantime, he is a man full of vigor trapped in a shell that refuses to move. His wife tells me he was an active sportsmen, and up till a month ago (when he lost his speech) he still had happy afternoon tea with his friends. He worked for the government all his life, an honest earning man who raised his children well.
And now he is alone, with only a wife who is aging as much as he is, completely dependent on her care.
...
ALS is rare, who can blame physicians who are not neurologists from mismanaging? But could we do better than that? Surely we can.
He shouldn't be in a Rehab clinic. At his rate he should be in palliative care.
Yet they are beating around the bush. Stuck in a rubbish healthcare system with no proper coordination between departments. No proper specialist to care for the right patient and the right quota.
He could have used his time to get his affairs in orders if he was given proper prognostic information.
This stresses to me the importance of studying. Rare disorders may be difficult to remember but it is better to know something than nothing. Every physician can make a difference. We should never let the system defeat us in patient-centered care.
I wish him well in the rest of his life. May divine intervention make his remaining days worthwhile and full of beautiful memories before he finally stops breathing. And may there be comfort to those he will leave behind when it happens.
#inspired to study neurology, and improving care in neurodegenerative disease.
Comments
Post a Comment