I got my genetic results back recently and went thru my gene snps that relate to PD. I have 3 specific snps that relate to MAO-B so yesterday I tried 1600 mg of curcumin spread thru the day (an MAO inhibitor I had on hand) and it seemed to make a minor difference yesterday .. more stability, better hand/eye, etc.

Today though, I'm feeling more trembly than I have in quite a while.

Does anyone remember if this is what they experienced when they first started it and did it go away or did you have to ratchet up or decide to leave it alone.

Thanks

BreezyRacer, many, if not most, of the people I know with PD take curcumin as a supplement. However, I'm not aware of any who use it for symptomatic treatment. I doubt you would notice much, if any, changes in symptoms from taking 1600 mg. It potentially has many other benefits, maybe even neuroprotective, but its not likely that one day's use would cause any change. I certainly have never noticed any changes. In addition, I've been taking Rasagiline for three years, a much stronger MAO-B inhibitor, and only notice very mild symptomatic benefit. I've never had any negative side effects from either curcumin or Rasagiline.

Thanks Tupelo, for the feedback.

I'm gonna let it go for a day or two and revisit it again. 1600 mg is fairly close, though a bit low for many curcumin/peperine mouse model studies which seem to see effect at 20 mg per kg.

Then again, mine was spaced into two dosages thru the day and maybe they just give it all in one hit.

I'm just not sure why I was tremory feeling this AM. Tremor hasn't been a problem for me for a couple of months. It wouldn't seem that curcumin would do that but it's the only thing I did different lately.

BreezyRacer,

First, let me say that as I see it, it's a terrible shame that you live in a society that for whatever reason leaves you writing that you "see no good in getting diagnosed at this point". Not only does this mean that you are unsure whether you have PD, but it leaves you unable to access prescription drugs.

On the substantive issue, soccertese in a thread two years ago referenced a paper which lists natural MAO-B inhibitors:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3521852/

On the issue of whether you would notice the effect of a MAO-B inhibitor, it is worth noting that 1mg of rasagiline does the job and there's no marginal benefit from increasing the dose.

Roughly speaking 1mg of rasagiline has an integrated benefit equivalent to 100mg of levodopa. But, since it is active for approximately 24hr as opposed to the 3-4 hours of levodopa, the intensity is much less: 100/24 cf. 100/3. Or put another way, I'd estimate that including one's own dopamine production, which continues until late in the disease, a person probably needs about the equivalent of 2000mg levodopa per day. With this in mind you're unlikely to notice any impact from rasagiline.

I've taken 1mg of rasagiline per day for the last 8 years. I've had no problems with it. I see its constant effect, as opposed to the up and down effect of levodopa, as an asset.

John

breeze, you got diagnosed with RLS and are taking mirapex, doesn't that imply you were diagnosed not to have pd?

sorry if i'm wrong about the RLS and mirapex.

What the RLS diagnosis means is that I have RLS, separate of any features of PD. If it makes anyone happy I will be seeing my GP soon and I imagine he's gonna forward me onto a neurologist for my issues. I will not hide anything from my GP.

One real concern is that I'm in small business (similar to what you might think is a consultant) and I perceive that a PD diagnosis wouldn't sit well with my clients, as well as having to deal with family members, etc. I have no desire to have that diagnosis and I have no desire to have to take a prescription drug if I can keep from it. Yes I do take pramipexole now for RLS but that's not PD.

Also a PD diagnosis is subjective. I have enough symptoms that I can get a diagnosis. Maybe if I'm lucky I'll get "parkinsonism" instead of PD. If that'll impress everyone here on the board, well great. Eventually I do have to face the prospect though if I cannot manage it myself should things continue to the trend.

There's also the small matter buying health insurance. Right now there are no less than 15 presidential candidates all promising to end Obamacare here in the US. If that happens (unlikely at this point but so was 911 or the 2008 meltdown or the Iraq war) I can tell you I won't be able to afford it with a diagnosis of PD. Preexisting conditions will be back on the table.

But I'll freely admit that all of this is a bit of a red herring .. I just don't want to have it myself. It will be an admission that there's no turning back. A life of PD will be with me forever. I'm still not ready for that.

Breezy,

Three most important things for EVERYONE, not just us Parkie's....
Exercise, Diet, Sleep.

Exercise: Keeping active is critical, cardio & weight.
Diet: A friend swears refined sugar is the bane of health. My daily limit is 20g.
(Hint that Made in Mexico Coke I love has 33g sugar... I gave it up)
Sleep: Do what every you can to get a good nights sleep.

Disability Insurance -- great thing to have. I have a "three year gap" coverage. Basically if I am unable to work (or find a job at 80% current salary) it will cover me long enough to get on SSDI (not something I want to do!).

Life Insurance -- Ditto. Parkinson's is exclusion for most (you can still get it, but don't expect the lowest rate with a Dx of PD).

On the good news is one fellow at my docs is 92. Still active, and was Dx at age 50. Yes, forty years later he is active and mentally sharp. Just amazing. He also walks something like four miles a day (lean tall polite Texan).

Friends in college, when I was 20 can recall my old gait and no arm swing. I was Dx last year at age 55. Did I really have PD in my teens? Just with sinemet my arm was swinging one day, and it seemed so strange. Wife called old College Friend of mine who comments "his arms never moved, but always straight at his side.... " Hmm. By the time I was seen by a MDS... there was zero question that I showed four out of four symptoms of PD.

For me, in my 20's I was a cycling fool. Century (100 mile ride) no problem. Hills, bring them on. Ireland, New Zealand, Europe... have bicycle, will travel. I suspect that had more to do with delaying the disease than anything else. I've slowed down, but need to up my game and stay active.

BREEZY,
if curcumin had any significant affect on pd it would be in an active thread imho, supplements are a widely discussed topic here. and it likely wouldn't be taken by millions of people, the side affects would be too great.

you can get a pd diagnosis and not have it be public knowledge, you just have to pay for everything privately. that's what i did for 11 years after diagnosis, paid for my neuro visits and meds out of pocket. this would be very difficult to do for most people but luckily or unluckily i found a MDS who was willing to charge me medicare rates for office visits, i was a one man company so i wasn't going to fire myself for having pd right away - i eventually did when i stopped working - and never had to change insurance so didn't have to hide my pd from a new medical insurance company. and, my business was installing retail rx filling computers in independent pharmacies who were glad to fill my carbidopa/levodopa rx's at cost and generic C/L is cheap, maybe less than 20cents a day.

so obviously not easy to do. but it can be done which would allow you to get into clinical trials for pd and test C/L to see if it helps your symptoms since you need a RX.
Mirapex doesn't seem to be helping your pd symptoms, i've read that one reason for that is people just don't take enough.

my advice is pay out of pocket for a pd diagnosis - i'm still wondering how someone could diagnose you for RLS and not be able to diagnose you for pd, seems you are leaving something out. if you have to take C/L for a few weeks as a diagnostic test, big deal, it's easy to stop. if it gets you back to "normal" and you have a pd diagnosis, then at least you can get on with your life and start making plans for the future, get your life insurance if you have been holding off on that, make career decisions - i was about to close my software company and get a teaching certificate, then i got my pd diagnosis and kept my company going, who was going to hire me for anything with pd?

also keep in mind that if you want to apply for SSDI, eventually everyone has to entertain that possibility, having a start date sooner than later for diagnosis will help plus having your progression noted in your medical records which means seeing a MDS at least once a year. i was denied SSDI 12 years after my diagnosis because i avoided seeing my neuro and some other reasons that were entirely my fault and really stupid. if i had to do things over again i'd base more research on ssdi earlier in the disease and what you'll need to do to document you are disabled. depressing, i know. but that's the system we have.

if what you think are pd symptoms are greatly affecting the quality of your life and especially are keeping you from exercising, sleeping and/or having a social life, then you really need to stop playing doctor and get that diagnosis.

Thanks Tom and Soccertese. Reading of your own wrestlings with these concerns I have tell me that I'm not alone in being concerned about them and acting accordingly.

Life insurance .. covered
disability plan other than SS disability .. nothing

In general I'm doing far better than when I first come to this board. Getting my methylation problems under control along with intestinal problems has helped with the day to day immensely. The methylation problem requires daily control and analysis but I've got my routine to a place where tremors are minimized and balance has become pretty normal as well. I'm functional.

The last few weeks though I've made what seem to be clumsey mistakes in handling things and times where my feet weren't raised as high as they normally are, like going up stairs, etc. When that happens just once or twice it's easy to discount but when I detect a pattern it concerns me.

BTW, my GP gave me prami for RLS. I described the symptoms and knew it was RLS from reading about my symptoms. I did not see a neurologist about it. I did try to enroll in a sleep study but was not accepted for whatever reason. It would have required a good deal of travel and my wife wouldn't be able to be a control for the study.

The plan is to see my GP for a physical and I've managed to reserve some extra time with him specifically to address my situation and hopefully he will send to to a neurologist for a sleep study first. Sleep is my real challenge at this point. My shoulders and neck hurt like hell when I sleep. Relatedly I also have bicep pain in both arms a lot too.

These MAO inhibitors, in low doses are being used for RLS when prami doesn't do it. Given my genetics I figured an MAO inhibitor was worth a shot and from reading the studies I knew curcumin was one and I had it around. When I got tremors the next morning I wondered if it was something that happens. That's how I started this post, which has morphed into being about my diagnosis. Really I'm not trying to be a pain. I'm just figuring out my problems and deal with them accordingly.

Best of luck to everyone, and Soccertese, you and I have a lot more in common than you would ever think.

Getting this post back on track .. Curcumin: A Potential Neuroprotective Agent in Parkinson's Disease

http://www.ingentaconnect.com/conten...00001/art00012

Sadly the abstract doesn't give anything away and the study is quite pricey. Does anyone out there have access to this study?