Palliative Care and new medication


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Palliative Care and new medication

Postby HelpingDad » Sat Jul 15, 2017 8:58 am

Dad's neurologist had him see palliative care for evaluation, basically neurology 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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Re: Palliative Care and new medication

Postby eplowman » Sat Jul 15, 2017 12:40 pm

Right on, Ron! I'm not sure how you can work it out, but somehow check to make sure your dad's condition doesn't worsen in short order. We were blessed to have a neurologist in northern Va. who had experience and knowledge in diagnosing PSP, who sat us down and explained the PSP facts of life to us (long before we noticed any overt symptom in Rose beyond an occasional unexplained fall), referred us to Dr. Stephen Reich (then at Johns Hopkins) to get a second opinion, and declined to prescribe ANY med because of the high risk of adverse side effects making the patient worse.

That's why it's so great having experienced, knowledgeable, scientifically curious, faithful caregivers of a loved one with PSP (as you and other key members of our "community of care" are), share their advice, concerns, wisdom, and encouragement with others in the forum needing such.

Ed P.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Palliative Care and new medication

Postby Robin » Sat Jul 15, 2017 3:08 pm

I like that example you gave.

Wellbutrin (bupropion) is an antidepressant often used by movement disorder specialists for Parkinson's Disease as it acts on the dopamine system. So it's a reasonable choice if there's depression. Otherwise, I'm unclear as to the point.
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Re: Palliative Care and new medication

Postby HelpingDad » Fri Jul 21, 2017 11:13 am

Dad was on the new medicine for almost a week before unusual things started happening. His speech which is bad normally almost disappeared, he was only grunting and moaning at times, he became emotional over the littlest things, at times he appeared confused. All this happened over a 30 hour span, a few days after he was at full dosage of the medicine.

I talked to his Primary Doc about all this and the obvious 2 things were he just progressed farther rather fast OR the new medicine is to blame. Per the doctor instructions the medicine has been stopped and he'll be here early next week to check up on things. The medicine has a long half life so it will be a few days before it's out of his system.

Ron
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Re: Palliative Care and new medication

Postby myownwoman » Fri Jul 21, 2017 11:39 am

We never had a medicine for Phil to which he didn't respond poorly. At least you gave it a try; one never knows what just might be a break-through drug.
Kate
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Re: Palliative Care and new medication

Postby Robin » Sun Jul 23, 2017 1:03 pm

I agree - you only know if you give it a try, and now you know. That's quite a paradoxic effort.
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