Need Input re: "Meds" specifically for tremor
 

Here I am, again, looking for input from you. Now that Doreen is being titrated off the Cogentin (the "med" that seems to have been responsible for her recent cognitive impairment), we now need to find a "med" specifically geared to treating/controlling her tremor. As well as the Cogentin controlled her tremor (almost non-existent), it severely impacted on and impaired the cognitive...and as we expected, the tremor has returned...not to the extent that she had been experiencing BEFORE taking the Cogentin...but, nevertheless, it has returned on the lowered dose of Cogentin...soon to be eliminated completely, I hope, so that the tremor will, once again, pose more than an annoying problem...and one that will, again, interfere with her work as a medical assistant. I am now asking you about what might specifically "work" well for tremors for any of you so that I will be able to discuss any recommendations that you may have somewhat intelligently with Doreen's neurologist by week's end. I am happy to say that the cognitive is very much improved on the lowered dosage of the Cogentin...and hoping that once eliminated, all will return to "normal", i.e., cognitively. It is just too bad that a medication that seems to "work" so well for a specific PD symptom has such dire and undesirable side effects...but, then, all of you already know this! Thank you for any information you might be able to provide.

Therese

Therese,

Could you tell us what other medications Doreen is using?

Karl

Thank You, Kari
 

for responding so quickly to my post. At the present time, Doreen is taking only Sinemet...3 1/2 tabs...25/100 daily. Tremor has been her only PD symptom throughout the 10+ years since diagnois, i.e., other than the medication-related side effect of dyskinesias. I will add that she is still titrating off the Cogentin brought about by the terrible cognitive side effects she had been experiencing with this medication. Cogentin had been prescribed precisely for the tremors...and it certainly "worked" extremely well in that she really had no tremor while taking the Cogentin. Now that she is taking 1/2 the dosage of this "med", the tremor has returned...not as badly as before the Cogentin...but, nevertheless, it has returned and we fully expect it to be more enhanced once she eliminates Cogentin completely; thus, the need to find something specifically geared to controlling tremors. Thank you again, Kari, for your prompt response.

Therese

in the background for now
 

Hi Therese and Doreen,
I’m going to stay in the background for now until you’ve heard from everyone else – then I have some ideas. Regards, Guy

Therese
 

Artane, trihexyphenidyl, is an old drug that my mother used for years to pretty effectively control her PD tremor. Check it out on Google.
Robert

Thank You
 

Robert and Guy...

Robert...I am aware of Artane, but it is in the same class of drugs (Anticholinergic) as Cogentin...the "med" that seems to have been the "culprit" in Doreen's recent "battle" with cognitive behavior. I realize, though, that this does not necessarily mean that it would cause the same very adverse side effects as did the Cogentin. I'm just recalling that Doreen did take Artane at one time (for a very short time), but, for some reason...and I'm sure it was not related to the adverse cognitive side effects...I would definitely remember that...but it just must have caused some kind of undesirable side effect at the time. This was prescribed by another neurologist...not the one she is seeing now. At any rate, Robert, I thank you for responding...may even ask Doreen's neurologist about Artane when we speak with him...thanks, again...

and Guy...I will anxiously await your response...you have definitely piqued my curiosity....thank you for responding, Guy....

Therese

medication called "peace"
 

dear therese,
there is an excellent reason to remove stress from the equation of life...
joy, + calm + alternative thought -minus -" the illness" equal's a much better quality of life.

tell her the best advice I was given was by a man with PD who is past away -

" everyday - pretend as much as it is possible - that you do not have PD"
quote -James Vidamour

:hug:

Thank You, Tena
 

The message..."everyday pretend as much as possible...that you don'thave PD"...excellent in that it is "in sync" with "mind over matter" more or less..."in sync", too, with how the mind really "works"...either to negatively or positively impact on our lives...it makes all the sense in the world...just a matter of discipline, really, but most probably, easier said than done. How much better it would/could be if one could eliminate the "demon drugs" and replace them with this very positive philosophy. It is quite evident with Doreen that when she is absorbed in her work, she is much less conscious of having PD. I can ask her at the end of the day if she had much tremor...much dyskinesia...and many times, she is able to say that she really hadn't noticed because she had been so busy. Her tremor is most noticeable if/when it "acts up" while she is assisting her doctor with specific medical procedures...then, it becomes a problem for her...not particularly for her doctor...but for Doreen who then feels that she is hindering him...a burden to him rather than a help. I just hope that there IS a "med" out there that can help her specifically at these times. This in conjunction with trying to adhere to the advice of the pwp who said: "everyday pretend as much as possible that you don't have PD" would seem to be a very real solution.

Thank you, again, Tena...very sage advice..thank you.

Therese

Still Waiting
 

Guy...I wonder how many more responses you will "require" (lol) before you respond with your ideas!!!
Please just remember...I need to gather ALL information no later than tomorrow so that I will be able to speak at least somewhat intelligently with Doreen's neurologist on Friday...still waiting!!!

Therese

I must learn to be brief . . .
 

Good day Therese and Doreen; I can’t contain myself any longer. Wonderful to hear that the fog has lifted despite the exacerbation of that pesky tremor. Tremor may be aggravated further by the titration of Cogentin or some residual withdrawal if you like. But to take a step back – before looking at another one of the Anticholenergics: have I understood you correctly in that Doreen has never been on any of the Agonists? .i.e. Parlodel, Mirapex, Requip, Apokyn. Even having a diagnosis of PD for a decade, seeing it’s tremor dominant and slow in its progression, one of the agonists might settle it down. My tremor virtually disappeared for over 5 years thanks to Requip and later Sinemet -- it’s only the last couple of years that I was loosing my ability to type in the off-times. If you end up considering Requip, I should forewarn that it is quite sedating in my experience, but largely responsible for keeping me mobile. And I know you wrote that Doreen gets dyskenesia so I assume more Sinemet was tried and that dyskenesia was the result. Others with more experience will correct me, but it seems she’s on a modest amount of PD meds. You can tell by this point I’m no fan of the Anticholenergics – they are good for treating side effects from prolonged use of major antipsychotic medications, but are often noted to cause blurred vision and confusion. That said, there are many of them: Artane, Cogentin, Ethopropazine, Kemadrin … so if one doesn’t agree you may find another does the trick with fewer or no side effects.

Touch wood, I’m still not tremoring since starting Amantadine 100mg each morning. There is some tremor, in some of the damnedest places, but really decreased. I typed about 8 hours yesterday, which would have been unthinkable 2 weeks ago. Even the number of typos is on the decline – now it’s just bad writing I have to worry about.

So, in summary, some suggestions for the next chat with the neuro:
1. wonder if you can squeeze in another Sinemet without increased dyskenesia
2. an agonist if not tried before
3. Amantadine – my miraculous antiviral, anti-tremor
4. a gentler kinder Anticholenergic if necessary
5. hopefully you’ll get other folks testimonials re: other meds that help with tremor
6. and this is a reach - Antispasmodics (muscle relaxants) valium years ago, but there must be something less habit forming on the market now; that may offer some relief.
I have great faith that you two will win the battle and hopefully the coming days are better. Regards, Guy

PS I try to plan med changes when I have the fewest obligations and my larder is stocked to last through a nuclear war. - Could live here for 3 months without going to the grocery store. Lastly, if a drug is expensive and I’m experimenting I’ve been asking for 1-2 weeks supply. You pay the dispensing fee twice, but still save if the drug isn’t up to snuff and has to be replaced with another. – depending on your coverage of course.

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

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

...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

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

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

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