Parkinson's Disease Tulip


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Old 10-17-2007, 06:15 PM #11
Virginia Therese Virginia Therese is offline
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Default Well Worth the Waiting

Guy...so much information...such good information...thank you so much...and, never mind being brief! So many times...when I read what I have written, I realize I could have written in ONE or TWO sentences what I've written in "epistle form"I am the epitome and Queen of "non-brief"...but then, I enjoy writing. I noted, particularly, your summation of all the information...typically a method I used while teaching...and I wondered if you are a teacher.

Guy...yes...Doreen HAS taken Mirapex along with Sinemet and, in fact, she fared extremely well while taking this "med"...but, unfortunately, she was one of those who developed the potential undesirable side effect of Obsessive/Compulsive behavior. This was so unfortunate because Doreen had an overall good feeling while taking the Mirapex and her tremor was well controlled. However, her neurlogist eliminated it completely when this happened...and certainly for good reason. What I have conjured up in my mind, however, is to discuss with Doreen's neurologist on Friday the possibility of "reinstating" the Mirapex but at a lower dose than the maximum 4.5 mg. that seemed to have causesd the O/C behavior. I want to discuss with him, also, the possibility of spacing the Sinemet differently (to try to alleviate the dyskinesias), i.e., dosing less more frequently throughout the day. (arrogant one, I am, I guess).I think I will have to use a method that "works" quite well for me, i.e., make him think it's HIS idea! This usually "works" well with other situations that I have encountered and will see how well it "works" with the neurologist!!!! I just seem to have "gut" feelings that are leading me to what COULD be a good resolution to all this. Interestingly, I have posted my questions to the doctors at the National Parkinsons Foundation based in Miami, FL (their site is "Ask the Doctor"). I feel that, in a way, I am getting expert opinions and options...and ALL THREE of these doctors have responded to me individually and ALL THREE have concurred that Cogentin should probably be eliminated from Doreen's medication regimen based on its possible/probable side effects that are very much "in sync" with what Doreen has been experiencing, i.e., short-term memory loss...confusion...lack of concentration...disorientation...so that I feel somewhat affirmed in what my "gut" is telling me...just seems to give me the courage and support I need to discuss the situation at least somewhat intelligently with Doreen's neurologist.

Guy...I am so happy to know that you're doing so well on the Amantadine. This, too, is on my "agenda" to discuss with the neurologist!!!! Thank you so much, Guy...both for the information that you provided AND for your encouraging and hopeful words...thank you so much.

Therese
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Old 10-17-2007, 08:19 PM #12
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Default talk to your gut again . . .

Let’s see what the collection of docs comes up with, but talk to your gut again <lol> as mine tells me stay away from a drug that has already triggered a serious psychiatric disorder, seriously. Consider Requip (I posted my med. sheet on the Amantadine thread a few days ago and that may help). And if stroking the neuro’s ego is essential, you know what you have to do and I’m sure you will do it marvelously. Besides, they’ll have loads of free samples on the premises, set up in bubble pack, so you don’t even have to think about titration – it’s all laid out for you. Spacing the dosing times of Sinemet is something I had to do myself to avoid severe dystonia. My left foot was contracting at the most inopportune times – could have decorated the walls and windows if I wasn’t careful.
You needn’t worry about intelligent discussion, just couch it in effusive politeness, so you don’t intimidate the *h*e*l*l* out of them (the medical set). I’ll close with another bit of good news. My “Proposal for a Parkinson’s Disease Drug Program” has landed me a meeting with the Director of Provincial Drug Programs Oct. 25, so here is hoping. And yeh! Amantadine! Still typing. Keep us posted re: Doreen’s progress please. Good luck.
PS You caught me; I did teach an undergrad course for a couple of years called “Expository Writing.” Loved it, loved my students. And I’m not surprised about your revelation, at all, at all, your teaching that is.
PS 2 – my suggestions are always just that; the 6th sense always works better when you’re there—in the situation…
Best regards, Guy

Last edited by wwally0; 10-17-2007 at 08:34 PM.
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Old 10-17-2007, 10:10 PM #13
Virginia Therese Virginia Therese is offline
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Default ...and Thank You, Again

Guy..for your most recent post and your encouraging me to "got with my gut". I am so "bent on" having the Cogentin eliminated from Doreen's "med" regimen that I have documented everything that has happened since our last discussion with her neurologist...and when he halved the dosage of Cogentin...stressing, of course, the still-present cognitive difficulties but to a much lesser degree...about 80-90% of the way, I think. The end result of my documentation, to date, is a definite improvement in the cognitive...but, I am aiming for that 100% making clear that with ANY cognitive impairment, this poses great difficulty for Doreen at work AND on the heavily- traveled Interstate Highway that she travels every day (that should "do it"!) In actuality, what I've said is absolutely valid. I will be tactful (or, as you said..."just couch it in effusive politeness so you don't intimidate the *h*e*l*l out of the medical set"...so funny, Guy. I really enjoy the humor that you interject within the more serious...and the "bubble packs"...how funny! The "collective docs" have already affirmed my "gut" so that it is easier for me to "go with my gut"..."spill my gut" as the saying goes (I can't believe I said that!)...so, along with the docs' consensus...the help I've received, here...from you and others, I believe that I'm ready for Friday's discussion.

...and so, I "exposed" you for what you are...or, were...a teacher!!! My teaching was on a much lower level than yours, i.e., age-wise (7th and 8th grade English); however, while working in bank marketing (after teaching) I taught basic English (yes...BASIC ENGLISH)...from the "ground on up", i.e., from teller right on "up the ladder" to the "execs". This was a real challenge which I truly enjoyed. It was a challenge because all these people were at different levels of understanding the basics..didn't want to "lose" those with little understanding, yet, didn't want to bore and lost those with a fairly good understanding so that many times I prepared at least 3 lesson plans before I arrived at one that I felt was suitable for all. (I seem to have strayed from the topic...I apologize for that....

...and Guy...how wonderful...your landing a meeting with the Director of Provincial Drug Progams to discuss your "Proposal for a Parkinson's Drug Program"...you are a true advocate for all of us here...I'll be cheering for you. Again...I thank you for all your support, encouragment and best wishes for a successful resolution of our immediate medical situation.

Therese
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Old 10-18-2007, 08:17 AM #14
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Default Requip and sleep attacks

- Morning Therese, Doreen. Haven’t had my 1st cup of coffee yet, so bare with me. I didn’t realize Doreen was still driving. That changes the water on the beans a little bit. Which ever agonist she tries or whatever cocktail she ends up with, driving is a concern, at least until you know how a change is going to effect you. Requip, that I was so glowing about, and still am, has a track record of causing sleep attacks; link for info:
http://www.metacrawler.com/info.meta...17/top/-/-/1/1
which is why I ended up taking Modafanil at breakfast and lunch (I was still at the office 5 days a week then). Docs aren’t so quick to prescribe Modafanil because 1. they don’t necessarily think about sleep attacks. 2. since everyone doesn’t experience them they don’t want to throw another drug into the mix unless absolutely necessary. 3. It is a glorified upper to be sure. Just please take care re: driving with all of these changes.

Even the increased tremulousness that will result from the removal of Cogentin should be addressed immediately. Also, I agree with you, mental acuity is just as important. When I introduced Amantadine into my mix, aside from a day or two of being a little light headed, my thinking cap was still on and the tremor control was immediate. I hope I haven’t served to confuse the multiple issues in any way, and I’m so glad you have several opinions to help you navigate.

If you initiate a change on Saturday, given the Friday appointment, at least that gives you a trial run to see the effects – good, bad or indifferent.

On the lighter side, my 94 year old Grandmother told me a couple of weeks ago, “if you don’t have a sense of humour ya’ just have a cramp where ya’ can’t put a plaster.” Gottta love Nova Scotia dialect. And sometime that I have more time to dissect the world of teaching I have to say what you were doing in the class room has far more honesty and dignity and contributes more to society than many of the goings on within the ivory tower. And ESL teaching – I only had a taste of it, and know you have to have the patience of Jobe. I’ve enjoyed the writing and mutual support and continue to wish for the best possible results.
Regards, Guy
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Old 10-18-2007, 10:25 AM #15
Virginia Therese Virginia Therese is offline
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Default Oh, ha ha, Guy

..."that changes the water on the beans"...and yes...we are aware of the possibility of sudden sleep attacks with the agonists. When Doreen was taking Mirapex, this was definitely a huge concern of mine...especially in that she travels on a very busy highway every day. You can well imagine, too, with this most recent cognitive situation how concerned I was about this...really didn't want her to drive and probably shouldn't have...but, it was her choice, and I haven't yet "arrived" at a point where I choose for her...I still suggest/advise...but do not make choices for her and hope that I never have to do that. She had no problems with the sudden sleep attacks...even at the maximum 4.5 mg. dose so that I would be hopeful that it would be the same at the lowered dose, although I'm sure that this might not be necessarily so...and would have to watch carefully.

Amantadine seems to be a good drug for many...certainly, it is for you...and in reading about it in the National Parkinsons Foundation Manual on Medications, it states:" Amantadine is an interesting compound with little known about its precise mechanism of action in the brain.......intially developed as an anti-viral medication for flu.....only by coincidence was it disovered to have sympomatic benefit in PD....there is renewed interest in using the drug for PD...the compound can help lessen levodopa-induced motor fluctuations and dyskinesia...recent studies show that it may also have neuroprotective properties." If nothing else, it could be a protection against the flu as the winter flu season is upon us. My internist actually once discussed with me taking Amantadine because I am unable to take the flu shot.

..and yes...we usually initiate any changes over the weekend which now includes, for Doreen, three days in that she's only working four days a week.

I just NEED to get her off the Cogentin completely...I really think that will "do the trick" cognitively...then, we'll deal with the tremor. (notice the WE'LL deal with the tremor). Just this morning, Doreen asked me exactly how I planned to do this. I assured her that I have already chosen my words well...but, we'll see just how "smart" I am after having the discussion with the "neuro"!!!!

...and it seems that you have inherited some of your grandmother's humor, Guy..."laughter...the best medicine".

...and indeed...one MUST have the patience of Job as a teacher. God knows...what 7th and 8th grade student really enjoys coming into a basic English class??? However, that is where humor had its place. For whatever concept/principle I planned to teach on a particular day, I ALWAYS wrote a very humorous sentence on the board (illustrating the concept) so that I "tricked" them into WANTING to come to my class. It "worked" every time...and I even used this approach while I was teaching at the bank...it "worked" with these people, too!!!

I, too, have enjoyed the writing, Guy...very much...not only for the informative exchanges related to medications, etc...but also, for the humor it has provided...and just simply enjoyable, friendly chat.
I wonder, though...do you think we should consider using the PM feature...only in that we would have the freedom to chat, at will, without "cluttering" the board itself. Please let me know what your thoughts are about this...and, if you feel that it's a good idea, which "WALLY" are you as listed on the Members List?

Thank you, again, Guy...for your wisdom...for your very good input/responses...for your humor. I always look forward to reading your messages.

Take good care...
Therese
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Old 10-18-2007, 05:17 PM #16
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Default sandpaper for the eyeballs

I comfortable writing as we have been, or via private message – which ever suits. I’ll just have to remind myself to keep an eye out for notifications. If you click on wwally0 it gives you a dropdown list with the private message option. Good luck with your appointment tomorrow. I’m a bit worse for wear tonight as I’ve been scouring the provinces’ and territories’ budgets for costing of drug programs. It helps if you want treasury board to part with some money for a program to know how much is required. Legislation should be called sandpaper for the eyeballs. Cheers for now. Guy
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