Why do we some days feel that we have no PD?

[Kia17]

Why do we some days feel that we have no PD?

Please share your thoughts here,

[laglag]

Good question. There really hasn't been a whole day I haven't felt it, but maybe close to a whole day occasionally. Maybe what we eat, what supplements we take, meds we take & the amount of stress we have. If all those things are perfect then we feel much better?

[S70AWD]

You must still be in the early stage. Savor these days, they may not last forever.

[Lisl]

Alas, we don't ...

[Lisl]

Alas, we don't ...

[KERRINGTON]

I am maybe a total of 5-8hrs symptom free maybe twice, three times a year. I am astonished on these rare occasions to be able to move my fingers effortlessly, and prance about....normal gait, fluid movements, relaxed shoulder etc. I also say to myself that somehow research is missing something....my neurons can't be dead because I am feeling normal. Maybe they go into some kind of hibernation, and when all bodily systems are aligned, the neurons temporarily wake up. I was diagnosed about 14 mos. ago, have had it about 10 plus years.

[Despe in reply to KERRINGTON]

Kerrington, YES, neurons HIBERNATE, according to Dr. Bergman. I believe so, too.

[KERRINGTON in reply to Despe]

WOW, how interesting ! Now, I will investigate 'hibernating neurons'. and Dr Bergman. Thanks Despe.

[Despe in reply to KERRINGTON]

You're welcome. Search him on YOU TUBE.

[JAS9]

I think it has to do with being slightly and temporarily overmedicated. Last year I was overmedicated for a few months and, yep, it felt great. Instead of walking down hills I was sprinting up hills. When you're feeling good for a few hours, it's probably because you're experiencing a brief release of dopamine from somewhere (the limbic part of your brain grabs and stores as much as it can, then might release it later when adrenaline blows through it). If you're close to being overmedicated, that might be enough to put you over the top briefly.

But the possible brain damage from long-term overmedication is definitely not worth it. Since then I've cut back my doses by 20%, slowly - very slowly (10% every 2-3 months). Now, I'm feeling the PD symptoms again and I sort of miss being able to sprint up hills, but I want to put off the dyskinesia as long as possible (my dx was 10 years ago). Some will say that PD meds don't cause dyskinesia, but I don't buy it. Other dopamine-enhancing drugs used for depression cause dyskinesia, so it doesn't make sense that meds like Sinemet wouldn't also, at high doses.

[Hidden in reply to JAS9]

Actually, according to Dr. Okun at the University of Florida & Parkinsons.com, the level of medication that is necessary to obtain optimum functionality is what one should aim for. According to him, the amount of Levodopa that you take does not cause problems even at high levels or “over medication “ compared to so called lower levels of Levodopa taken at those levels solely to avoid issues.

[JAS9 in reply to Hidden]

Attached to every bottle of Rytary I get, there's a tightly-folded paper. I unfolded one once out of curiosity. I'm looking at it now.

"Adverse Reactions: ... Dyskinesia [See warnings...]

... Rytary can cause dyskinesia which may require a dosage reduction of Rytary or other medications used for the treatment of Parkinson's Disease."

I'm sure that similar warnings come with similar meds.

Certainly, find the "level of medication that is necessary to obtain optimum functionality". But for me being overmedicated had its down-side. I took unnecessary risks, didn't feel like myself, was illogical, and was strangely calm. So that's not "optimum" either. Someone who wants to be like that might wait until dyskinesia starts happening before reducing (an unnecessary risk), but by then the damage would already be happening. Or so it seems to me.

[Hidden in reply to JAS9]

Talk about being between a Rock and a Hard place! Damned if you do and damned if you don’t. Most MDS’es say the same thing. Dr. Okun says different. BTW, have you tried googling him?

[JAS9 in reply to Hidden]

I have now and he seems fairly mainstream. What the doctors seem to all be saying now is: "Use L/C as much as you feel you need to, we'll deal with the problems later." Later, they say "Dyskinesia? Take amantadine as much as you want." Etc.

Here's a sobering statistic: "After a ten-year period, nearly 90% of people treated with levodopa therapy develop dyskinesia." Also: "Treatment with levodopa is the current standard of care, but as PD advances, higher doses of levodopa are needed. Disease progression and long-term use of levodopa at higher doses can lead to dyskinesia." (Notice that "can" = 90%)

Source: gocovri.com/what-is-dyskinesia?

But L/C has been used for several decades while amantadine is relatively new. What did they do in the 70s? From "Once Upon a Pill":

"In the 1970s, when Parkinson's disease patients no longer responded to their drugs at starter dose, or if their increased doses produced symptoms of overmedication, they were admitted to hospital and abruptly taken off their drugs.

After a painful period of drug-withdrawal, during which they were carefully monitored, they were once again able to respond well to their drugs at their starter doses.

Unfortunately, as MDs became more cavalier in their prescribing and accustomed to the bizarre symptoms of dyskinesia, they allowed the drug levels to get much higher before suggesting a drug holiday. Then, abruptly stopping the drugs from these new, higher dosage levels often proved fatal.

Not understanding that it was their own prescribing patterns that had changed the relatively safe “drug holiday” into a lethal dopamine free-fall, some doctors in the early1980s announced that it was evidently unsafe to ever decrease any antiparkinson’s drug by any amount.

Now, in the twenty-first century, even though the role of dopamine is better understood, and the value of a drug holiday, as soon as the lower doses become ineffective, is once again being proposed by bold researchers, insurance programs will not support this expensive hospitalized “drug holiday.” Instead, despite the fact that drug holidays proved that the need for ever-increasing dopamine was due to "accommodation" (a well-understood component of addiction), most young MDs assume that decreased drug effectiveness and even symptoms of overmedication are simply signs of advancing Parkinson’s disease."

Me again: I've decided to keep my L/C dose lower than "optimum" - to where I'm feeling some of the PD symptoms, but still gaining benefit from L/C. If I can stay low enough, maybe I won't ever have to experience dyskinesia. But if I ever think that I'm getting close to that point, I'll hopefully have the option of a "drug holiday".

If you haven't seen this yet, here's a story written recently by Gary Sharpe, whose condition became so severe that he had to undergo a drug holiday in order to save his life. Warning: it's a long and depressing read, but full of information. Unfortunately, he had let it get so severe that even after the drug holiday he still had some pretty bad Parkinsonism-type symptoms: outthinkingparkinsons.com/a...

[JerMan22 in reply to JAS9]

I always get a LOT out of your posts. Seriously, everyone on this forum should read this! This information could save lives. THow, exatly, can I reduce my dose safely? Thanks for putting in the effort.

[JAS9 in reply to JerMan22]

Notice that I never, ever, NEVER give advice on doses or medicines. That's illegal and dangerous. You can read about it yourself. In addition to the sources I've given, another good book (but older) is "Awakenings", by Oliver Sacks. But the best starting point is the National Institute on Drug Abuse (NIDA). The NIDA website is full of information. Search for "dopamine" to get the latest on the role of dopamine in drug addiction. Well-informed patients are less likely to go along when their docs tell them that their drugs are not addictive, or that their drugs are not playing a big part in their dyskinesias, tremors, and more.

[ConnieD in reply to JAS9]

What drugs used for depression cause dyskinesia? Thank you

[JAS9 in reply to ConnieD]

"Perfectly legal drugs, especially those that are used in the treatment of anxiety, pain, or depression, may change dopamine levels and set in motion drug-induced parkinsonism."

Tardive dyskinesia is one symptom of "parkinsonism".

"Tardive" just means that it can begin even years after stopping the use of the drug.

Here's one site that has a (very partial) list. Look down the page for the list: uspharmacist.com/article/ta...

You can google "drugs that cause tardive dyskinesia" to find more.

[ConnieD in reply to JAS9]

Thanks !!😊

[Despe]

I don't usually trust MDs' advice, don't know what kind of relationship they have with big pharma. However, there are always exceptions to the rules. Our MDS at Vanderbilt told us that "Less meds is more!!!" He is also very knowledgeable when it comes to natural levodopa, fava beans and MP. Never thought I would hear that from the mouth of an MDS!