PSP Association
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palliative care suggesting new meds

Dad's neurologist had him see palliative care for evaluation, basically they said there is nothing medically they can do.

The doctor in palliative care was very nice, listened and appeared genuinely concerned but offered nothing really in the way of help. She does want to try a different med called Buropion (bue-PROE-pee-on). It an anti-depressant that is usually used with treatment to stop smoking, dad doesn't smoke nor does he seem depressed. I pressed the doctor on WHY she felt this medicine would be of help and she told us "it MAY help restore balance of certain natural chemicals (neurotransmitters) in the brain".

I proceeded to ask how much she knows about the PSP/CBD family of diseases to which she replied not much. I tried to explain what I knew from talking with other doctors and research on the 'net that it's more the brain cell dying off due to Tau protein buildup and not the transmission of brain signals. I used the layman's example of a toaster plugged into a dead outlet, the toaster is fine, the plug cord is fine there's just NO electricity coming from the dead outlet to power the toaster. In the end we (I) agreed to a 1 month trial of the med and if no improvement stop the doses.

Ron

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Your Dad is so lucky to have you fighting his corner. It makes me want to weep each time I read how little doctors know. Surely they could look it up on the internet as you have done? They can't have many patients with PSP? Hence the reason they know nothing about it? I would like to think if I were a doctor who had a patient with a condition I knew nothing about I would at least look it up!

I hope this drug helps your Dad but you were right to question why!

Marie x

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