If I remember right, at one time Ron was taking it. I will email him and ask that he weigh in if so.

Rick did email me, but as I mentioned to him, I did reply some time ago on this one, and nothing much has changed, except I have now had PD for 19 years. I must be doing something right, since I am on no more than 150mg levodopa per day now. The question is what is it due to. CPD choline is given to stroke victims, it aids brain metabolism. I have taken it for years(> 6 years), combined with curcumin. I have been treated for SIBO (small intestine bacterial overgrowth) about 2 years ago. I have had helicobacter pilori erradicated 2 years ago, and more recently was prescribed trihexyphenidyl as an anticholinergic, to reduce acetyl choline so the dopamine /acetyl choline ratio is in balance. I have stopped taking Zelapar (Selegiline) and started rasagiline.
So what with other things I have tried over the years, as a white rat, I could not put my hand on my heart and say what has slowed my progression. My worst symptom is my walking and balance. However, after 19 years, I still drive, have just decorated a room 24 feet long with a 15 feet high ceiling, regularly take demanding holidays, and maintain a half acre garden.
Ron

Ron, this is really encouraging. Were you on a lot more levodopa before? In other words, were you taking more like 300 mg daily before and it's lowered, or did you start out on 150 mg of levodopa?

Thanks, -Laura

Hi Laura,
I started 19 years ago on 300mg levodopa when I really did not need it. I worked for 5 years after diagnosis, running a large chemicals factory. I retired at the 5 year stage, still on 300mg per day. My symptoms, particularly gait gradually got worse, and my neuro increased the dose accordingly. I got up to about 800 mg of levodopa, and decided to do something about it. Up to then I had been enjoying retirement going on long holidays, and did not study the disease. I must have been around the 12 year stage, when I read Briantalk, and corresponded with researchers. I read positive things about curcumin and CPD choline and I have been taking them since that 12 year stage, or for the last 7 years or so. I gradually reduced my levodopa to around 300 to 400mg. 3 years ago, I corresponded with a research group in London, who impressed me, and they invited me to see them. They treated me to erradicate helicobacter etc.
Since the 12 year stage, I have tried countless ideas and supplements. but I could not say any were definitely of value. Useful advice from the London group are don't allow yourself to become constipated. Take a fibre supplement like Fybogel. Avoid infection wherever possible from open cuts etc. (Remember my famous infected tooth).
I forgot to mention that I get dreadful dyskinesia when I take sinemet. Today I have only had two 50mg of levodopa and have had a lot of dyskinesia. However, each 50 mg had me on for 4 to 5 hours. So only 100 mg today gave me 9 hours on.
I should add the curcumin/ CPD choline is not an instant fix. It seems to work over years, not weeks. But at least I find it encouraging that our neurons can't be dead, just disabled, and can be brought to life again.
Another effect I have posted on before, asking has anyone else experienced it, but no replies, is switching on without any meds. It happens to me about 3 to 4 times a month. Sometimes I get up in the morning, no meds and say to my wife, watch, and I can race up and down when normally I can only shuffle. Other times it can happen late at night long after my meds have worn off.
Ron

Ron, are you not also taking DM? I thought you were, and if so, about when did you begin taking that? Seems like a lot of folk take either LDN or DM, depending on cost and sympathetic docs.

Hi Lurking,
No, I have never taken DM or LDM. It must be the only supplement I haven't tried!!.
Ron

I think that Paula's quote gives a pretty good summary. Citicoline is a nutritional supplement that promotes the synthesis of phosphatidylcholine (lecithin). This pathway is common to humans and yeast and so must have existed way before the evolution of brains. When brains evolved, rather than inventing new molecules, often pre-exising molucules were given different functions. For instance, the energy molecule ATP and the amino acid glutamate became neurotransmitters. It is not at all surprising, therefore, that another derivative of choline acetylcholine should be used as a neurotransmitter.

The fact that citicoline helps to build phosphatidylcholine, essential to the brain, does not at all mean that it cannot also be used as a precursor to acetylcholine, a neurotransmitter. This does not mean (and Paula did not suggest) that it works in the same way as Aricept, which acts to delay acetylcholine breakdown. It could just be another nutritional factor that makes sure that we have enough acetylcholine. It still needs to be released into the synapse in order to have an effect.

However, some neurological pathways might be limited by not having all the chemical ingredients, so I don't find it impossible to believe that acetylcholine pathways might be more active if you take citicoline as a nutritional supplement. Perhaps though citicoline's primary effect might be to supply the essential phosphatidylcholine.

That could lead to benefits for some people but not to others. It would depend on what your brain nutrition is like and whether or not making more acetylcholine would make any difference.

I suppose that leaves us having to "suck it and see".

When I did this I did not improve after a month, indeed I think that I felt a bit worse. This could have been coincidence. It might also mean that acetylcholine was temporarily more active. However, I might need to go through that in order to achieve the benefit of increased levels of phosphatidylcholine. That is what prompted my curiosity as to whether anyone else had any symptoms. I should say that what I felt was not severe so if there was a long-term benefit then it would be worth putting up with.

So, the converse of my earlier question is: Do you feel any benefit?

CS

Somewhere along the road I read/heard/hallucinated that in Europe, citicholine is prescribed for PD. Does anyone know if this is so?

Found an interesting article: Therapeutic Applications of Citicoline for Stroke and Cognitive Dysfunction in the Elderly: a Review of the Literature

"Pharmacokinetic studies on healthy adults have shown oral doses of citicoline are rapidly absorbed, with less than one percent excreted in feces. Plasma levels peak in a biphasic manner, at one hour after ingestion followed by a second larger peak at 24 hours post-dosing. Citicoline is metabolized in the gut wall and liver. The byproducts of exogenous citicoline formed by hydrolysis in the intestinal wall are choline and cytidine. Following absorption, choline and cytidine are dispersed throughout the body, enter systemic circulation for utilization in various biosynthetic pathways, and cross the blood-brain barrier for re-synthesis into citicoline in the brain."

Things that "peak in a bi-phasic manner" make life soooo interesting. And any study that doesn't take that into account may not have any value.

It is hard to follow the technical details but from another thread I gathered that as dopamine is depleted, acetylcholine/dopamine balance is upset and anticholinergic drugs aim at restoring the balance.
Now I understand that CDP Choline enhances acetycholine which is good for cognitive power but would it not exasperates PD by upsetting the acetylcholine/dopamine balance?

Can any body explain it in nontechnical language?

Imad

No answer to either of your questions but wanted to thank you breaking it all down to the the core:

"suck it and see"

This is the first I have truly laughed over being drug dependent. Of course, in my memoirs this time in my life will fall under the euphemism "the experimental drug years".

May I ask if anyone can find any brand of CDP Choline that does not use the patented Cognizin Citicholine as its source? Kyowa, the same Japanese pharma, that has Istradefylline in Clinical Trial right now patented and branded this stuff. I notice that many of us respond to various formulations of drugs (Sinemet vs. generic) and wonder if same can't be said of supplements? I imagine the Cognizin is more expensive but am hard pressed to find a brand that does not use it.

Thanks!

Laura