Quote:
Originally Posted by johnt
I agree with Made It Up.
Perhaps I read your posts wrongly, but you seem to have spent a lot of time investigating supplements (which I consider a good idea), but not so much time investigating prescription drugs (which I consider a bad idea). And your doctors have not been generous in the amount of time they have given you in discussing the options.
I think before going down the DBS path you should explore again your Parkinson's drug options:
MAO-B inhibitors, e.g. rasagiline, can have a part to play in symptomatic control, and may also slow down progression.
Agonists, with their longer half-life, may have a part to play, even though you have had one bad experience.
You don't seem to be doing well on Rytary. I think there may be some advantage in going back to levodopa/carbidopa and exploring as many combinations of dose and timing as possible, including the relationship with your diet.
As I see it, most PwP find it easier to get their medication right in the morning, rather than later in the day. It makes sense, therefore, to begin your investigations with your morning medication. Also, it makes sense to only change one thing at a time. So, as a first step, while keeping your present drug regimen as it is, I would ask your consultant what she thinks about adding a dose of immediate release levodopa/carbidopa first thing in the morning. This should be titrated up from 50mg.
You mention walking problems, but it wDould help if you can find an exercise that you can do.
John
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Hi John,
Thanks for your opinion. I have noticed over the years that your erudition and compassion have helped many who come here seeking advice or knowledge.
I have spent a lot of time investigating alternative medicine (I have a company in that field) but I am also a semi-retired pharmacist, so I have some experience with conventional medicine. I read a book on dosing levodopa and other treatments for PD but I do not find the cookbook to be as helpful as learning about what people do from reading this forum and others.
My problem has mostly been the short and erratic on times from the various levodopa products available. This might be related to taking the large doses of levodopa sans carbidopa previously in the Hinz protocol. Enzyme induction? At any rate, agonists were deemed to be risky due to having fainted 3 times for no apparent reason. The other side effects are almost as scary. I could go in that direction but the WA doc was not enthusiastic, either. I could add an MAO-B inhibitor but I have come across little enthusiasm for that by the docs or their patients on line. I don't need amantadine since I have mild dyskinesias, nor do I need apomorphine since my freezing is infrequent. That pretty much covers the drugs. That leaves the question of what DBS will accomplish that the meds don't.
It would seem to provide more on time and less feet shuffling so I can be more ambulatory again. I might go out socializing again without having to worry if my drug dosing intervals will be long enough to last through a dinner and a movie or whether it will stop working too soon just to surprise me or because I ate something more than a cracker. Maybe I could even feel well enough to exercise.
The current thinking is not to wait until you get too old or advanced in the disease progression to get a maximum benefit from DBS. Early moderate disease is the sweet spot. Neurosurgeon Dr. Vansickle in Colorado says it turns the clock back on your condition an average of 7 years. That would be great for me. I hardly had any symptoms then.
If I had information about the pharmacokinetics, i.e. drug absorption, distribution, metabolism, and excretion of levodopa, perhaps I could fashion a dosage regimen that made rational sense. As it is, I don't know why I can't
just pop another pill when I feel the current dose wearing off. Levodopa doesn't give me side effects to speak of and it doesn't accumulate in the tissues and elsewhere more than the smidgen in the neuronal vesicles that I know of.
I am not sure what titrating the morning dose will do. I already take a big dose of Rytary at 6 AM and that sometimes doesn't kick in, even with the occasional sleep benefit.
I appreciate your opinion and perhaps you are more familiar with this subject than I, but DBS looks like the option whose time has come.