[boann]

looking in from the outside in terms of the levodopa experience, this is how it looks to me.

levodopa is like a miracle for the first X years (could be one year, could be 10, could be more, but it is unlikely) and then its usefulness begins to deteriorate - wearing off, on/off fluctuations, and dyskinesias all set in sooner or later, and the younger one is, the sooner they set in.

at the onset of such side effects, perhaps one's dosage or one's dosing schedule is changed, but eventually, another drug is added, ostensibly to alleviate these side effects. it could be amantadine to alleviate dyskinesias, or comtan to ameliorate wearing off, or perhaps a dopamine agonist or an MAO-B inhibitor. and eventually another drug is added, and potentially even another - all to try and alleviate the side effects of levodopa.

ultimately, one ends up arranging one's life as best one can around a precisely choreographed dosing of a cocktail of drugs, their benefits, their side effects, and of course, symptoms, a system which, unfortunately, rarely works better than adequately, and ever more often falls farther and farther short.

and then one has DBS, the ultimate levodopa adjunct.

how accurate is this perception, in your knowledge/experience?

thank you,
boann

[lou_lou]

hi boann,
you must realize this is a disease - that is unique to each PD patient,
we have a very good documentary with the link, at the end of my page -

"In Search of A Champion"
mostly the stories of the individuals and their loved ones, are most useful,
they are all told by the patients themselves. and will be helpful for you to watch, it answers your questions, so click the link.

also Congressman Lane Evans who is retiring from Congress after 22 years
of service, is also a PD patient... He speaks on the documentary.

we won many awards - the bronze telly -I believe is one of the collection.

[boann]

thank you for the link - will watch it Wednesday. yes, i understand that PD is a different experience for everyone, but there are, and in order to be identified by a single disease name, must be, some broad-stroke similarities from one experience to the next. for example, at least one standard of diagnosis requires the presence of at least two of the three cardinal symptoms.

another telling method of diagnosis, which is particularly pertinent to my question, is the levodopa challenge - if your symptoms a lessened by a dose of levodopa, you have PD. that is a pretty fundamental bit of shared experience, considering that most PWP do end up on levodopa at some point.

i recently read that as a rule, UPDRS scores are expected to increase (i.e., worsen) *on average,* at a rate of 3 points per year.

And the research literature is rife with references to the inevitability of what i will call the cardinal side effects of levodopa.

My point is that while each PWP has her/his own constellation of symptoms and responsiveness to meds, there are certain fundamental commonalities.

I wish I could watch the video now! thanks for the link.

Boann

[chasmo]

on average your observations are right on. Keep in mind however everyone is unique in their disease progression and how they deal with it. I went from 3X 25/100 to 8X 25/250 in 10 years. I also added Tasmar, amentadine and mirapex, all at maximum dosages. My off's after 10 years, were "hard" offs, in that I could not walk and the dystonia pain was intense.
I know of other PD'ers who have successfully treated their symptoms with sinemet for 20 years and counting and others who got only 3 years out of sinemet therapy. Like the saying Joanie is so fond of "there ain't no way through it but to do it", (hope I did not screw it up too badly).

The bottom line here is one needs to be proactive, and so what works for you.
A good MDS can make this journey a lot less painful. We all come to the "big decision" eventually about having a DBS. I do not regret having mine for a second, but it is not for everyone. When you find yourself looking forward to the surgery, thats when it is time to have it.

Charlie

[MikeTTF]

Originally Posted by boann

how accurate is this perception, in your knowledge/experience?

Very accurate.

MikeTTF

[Cate]

Hello Boann,
It seems as though your perceptions are very accurate.
When I was finally dx'd in 1996 after 7 years of testing times -all I wanted was my life back...sinemet granted that wish. I was 35, my sons were 7 & 5,and life was good. Today - 10 years later- dbs + agonist + amantadine, my sons are 17 & 15 and life is still good.
Since DBS in March 2005, Sinemet is no longer required but I will be forever thankful for the life levadopa gave me.
Levadopa is there to be used and life is to be lived not endured.
Cheers
Cate

[boann]

Hi Cate,

thank you for the feedback - i am so glad to hear that life continues to be good. it is my understanding that in order to qualify for DBS, one must be experiencing severe levodopa-induced motor complications that cannot be managed pharmaceutically - i am not quite clear on the state one's actual symptoms must be in - but i am under the impression that intractable motor complications are a prerequisite. Is that accurate?

[Ronhutton]

Hi Boann,
Your perception of the saga of drug taking over time is very accurate.Others in this thread have confirmed the accuracy. Very useful for a newly diagnosed to know what the future holds. I don't believe in hiding it from them. It is not all bad news, it means for the next decade, they can lead an almost normal life. After 15 years, I have enjoyed 3 Caribbean holidays in the last 2 years I guess I followed your peception fairly closely, until I got involved in researching the disease on the internet. I had taken all the drugs you mention, entacapone for wearing off, amantadine for dyskinesia, agonists to prop up my diminishing effect of sinemet, also selegiline. I got up to 8 sinemet plus (800mg, L-dopa) per day plus all the above, around year 10 of my 15 years with the disease.
Then I started taking several supplements, curcumin, Citicholine, in particular. I was able to drop to 5 sinemet per day, (500mg L-dopa) after about 2 years, and today, I am on all day with 250mg of L-dopa. i have a new neuro who has introduced Zelapar,(dispersible selegiline) and a new one to me, trihexyphenidyl, which combats rigidity. I have also exchanged pergolide for pramipexole, which is an improvement.
I think what we should all be concious of is the placebo effect is extremely strong in PD. Not surprisingly,people WANTto believe a new treatment is the end of this nightmare. You get led down many false trails, but there are some truly beneficial experiences, and we must do a Sherlock Holmes, and pool knowledge. We need to carefully sort the wheat from the chaff.
I really believe that the cure or at least a much better quality of life is close, judging by the level and quality of some of the research being carried out today.
I recently posted an idea that those of us with PD, simply have a defective blood brain barrier. BBB. Anything that widens the pores, (like stress) makes our symptons worse. Anything that closes the pores, (like curcumin), makes our life easier. I have not found anything which dissproves this concept. It has already ben shown that Parkies have a defective BBB.
This allows toxins, circulating harmlessly in the blood of a normal person, to enter the brain and cause our problems.
It must be the approach this month of my 70th birthday, turning me into a philosopher!!!
Ron

Barrier dysfunction in Parkinson's disease
KL Leenders, R Kortekaas, AL Bartels, J Oostrom, A Willemsen, J Bart
S77, P257 Blood-brain

"The blood-brain barrier is defective in PD patients, according to
this study."

[Ronhutton]

Deleted due to duplication of same post

[boann]

thank you all for responding and for the suggestions regarding alternative to traditional pd therapy. all is much appreciated.

tenalouise, i could not get the video to work past the first five minutes - anyy suggestions?

Boann