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Old 06-02-2016, 12:02 PM
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stevem53 stevem53 is offline
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Join Date: Aug 2006
Location: Rhode Island
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15 yr Member
stevem53 stevem53 is offline
Senior Member
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Join Date: Aug 2006
Location: Rhode Island
Posts: 1,221
15 yr Member
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Quote:
Originally Posted by Bergamotte View Post
Thank you, stevem53. I found your post extremely interesting (sorry you had to endure some substandard care). It's encouraging that your appointment scores are improving over time, even if the DBS system is turned off for now. A couple of things:

Yes, the Madopar which is my husband's mainstay treatment is a European equivalent to Sinemet, but it replaces carbidopa with benserazide, which has slightly less side effects. Madopar comes both as regular hard tablets which kick in slowly but have a good "on" time, and as water dispersible tablets which kick in rapidly but don't last quite as long. The morning dose is a combination of both, so that he has levodopa support quickly but doesn't run out of steam too soon. He'll continue on this combo for the morning dose, for so long as we can obtain the water dispersible tablets. They're not always available.

The Exelon patches are rivastigmine, an acetylcholinesterase inhibitor (intended to support the memory). Exelon at 4.6 mg a day does nothing for my husband as far as I can tell. It seems to do no harm, though. The neurologist wants him on it, thinking it MAY be neuroprotective and delay disease progression (no hard proof of that however).

Regarding PD and stress: I completely agree with what you're saying. My husband worked in a high-stress office job until he retired; I would bet that his adrenal glands became huge, having to constantly produce cortisol and adrenaline to deal with low level and high level stress at unpredictable times. I mentioned that he has flushing as a "wearing-off" symptom; maybe, when dopamine goes low, cortisol is produced to try to compensate. The flushing may be from high cortisol.

Since developing PD, my husband loses his memory completely when under stress. For example: He had an appointment at a new doctor's office, but he drove to the wrong clinic. He phoned the receptionist asking for directions to the correct clinic. Although he knows the layout of the town very, very well, he forgot everything he knew about it as the lady gave him directions and landmarks to look for. He was shaking his head and asking, "You're located past the town hall? But where is that?"

stevem53, we'll take your advice and see a psychiatrist, if any psychiatric meds really become necessary. Thank you for that tip. All the best to you too.
Thanks for your reply Bergamotte..Yes, my first neuro was an arrogant and insensitive man..A friend of mine recommended a nuero that his wife was seeing, and I have been with him since 2004..Good Dr..Good man

The DBS mystery has the DBS team that did my surgery at Beth Israel in Boston at a loss for why the leads implanted in my brain, are treating my symptoms with the stimulator batteries off..If it lasts, it will be a blessing..The MRI that they are going to do at the hospital tomorrow, might provide an answer..The care, the surgery and the communication at that hospital is the best I've ever had..Very accommodating, and when I call there and ask to speak to the Dr, he always returns your call at his first possible convenience
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There are those who see things as they are and ask..Why?..I dream of things that never were and ask..Why not?..RFK
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"Thanks for this!" says:
johnt (06-03-2016)