[Virginia Therese]

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

[K.Ibsen]

Therese,

Could you tell us what other medications Doreen is using?

Karl

[Virginia Therese]

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

[wwally0]

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

[RLSmi]

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

[Virginia Therese]

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

[lou_lou]

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

[Virginia Therese]

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

[Virginia Therese]

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

[wwally0]

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.