I remember a TV show years ago... the title was 'Mr. Terrific'. It was a very corny superhero series that featured a below average, mild-mannered type guy (sound familiar?) Once he took this special pill, however, he basically became superhuman - kinda like Superman. But it only lasted one hour - once the drug wore off, he returned back to his 'normal' state; which of course left him in all kinds of humorous situations if this happened while he was in the middle of an important mission! I can still hear the theme music when he took the pill - it would start playing, his face would change colors, and then he would get this slow, smirky smile as he 'powered' up!
I often wished I had a pill like that - one I could take and be a superhero, even just for an hour! Now, of course, I wish there were a pill which I could take and get rid of Parkinson's; but alas, science hasn't caught up that far yet! Maybe some day we'll get a pill that both cures Parkinson's -and- makes us into a superhero! Hmm... I wonder what I would name myself???
Anyway, I want to talk a little bit today on the topic of supplements - what I take and why. But I need to be very careful with recommending anything... So, before I begin, let me say this again:
What I am going to talk about today are the supplements that I take. They are only my recommendation of what I take and why. My neurologist and general doctor are completely aware of these; so before you even think about trying any of these supplements, you should discuss them first with your doctor and/or neurologist! Some may have interactions with other medications you take. Therefore I take NO responsibility for these recommendations. ALWAYS discuss what you take or are planning on taking with YOUR doctor first!!
OK, with that said: Before I jump into the discussion of supplements, I want to recommend a website you can use, if you wish, to keep track of your meds, and - most importantly - see interactions.
That site is Drugs.com - specifically their 'MedNotes' section. I happen to use this, because it makes it easy for me to let my doctor know what I am taking - I simply print off a copy for my neurologist or doctor every time I go to see them. Once you enter in your meds and supplements, here is an example of what you would see:
Not only do you see each drug you take but also any interactions warnings ( in my case denoted by the yellow ! triangle - you see quite a few for me, but most of these are just warnings).
Not only can you see your meds and supplements, but also conditions, allergies, etc. And if you are 'researching' some different medications, there is a section for that also:
When you are ready to go to your doctor appointment, and want a print out, just click Print and you will get the following printout of your drugs:
They also provide both iPhone and Android apps, so you can take your med list with you on your smartphone!
* I don't work for or receive any compensation from Drugs.com - just a site that I recommend.
What I think EVERY PD Patient Should Take
First I am going to discuss a 'prescription' (not a supplement) that I take and believe would be a benefit to every PD patient and why. Then we'll dive into some of the supplements I take and why I take them. Finally, we'll cover some other supplements that have been proven to NOT be beneficial to PD patients, and some to completely avoid.
Note: At the end of this blog entry I have listed some references I found for each of the items I am going to be discussing. These are what I have found while researching this blog entry and may not have been the original set of references I used in determining whether I should take a supplement or not!
Azilect (or generic name Rasagiline) is what they call an MAO Inhibitor - in this case specifically an MOA-B inhibitor. It's used to treat the symptoms of Parkinson's disease (stiffness, tremors, spasms, poor muscle control) by inhibiting the breakdown of dopamine by the body. Of course, if you keep the body from breaking down dopamine, there is more for the brain to use - thus inhibiting symptoms of Parkinson's.
However, Azilect is not as 'powerful' as levodopa itself - it's effects on PD symptoms is rather mild. It's used a lot as the 'first-line' drug that is prescribed when a patient is first diagnosed with Parkinson's and their symptoms are mild (Levodopa, for instance, may not be a first-line treatment because it causes more side effects the longer it’s used). I recommend it, however, because there have been studies done that suggest taking these kind of MOA-B inhibitors - specifically rasagiline - might possibly be neuroprotective; i.e. it may help keep the disease from progressing.
My first neurologist (the one who diagnosed me with PD) was pretty positive on Azilect - I believe he participated in the trials and firmly believed that it was neuroprotective. That is how I got started on it; and if it is safe to take and there is even the slightest hint it could help slow down the disease, then I definitely want to be in on it. HOWEVER, there can be a lot of interactions with other drugs, so you have to talk with your own neurologist and discuss whether this would be beneficial for you to take.
The good news is that Azilect became generic this year, so if your insurance plan covers generics, you should be able to get this rather cheap. Again, talk to your neurologist first about rasagiline to make sure it won't interact with anything else you take.
Now let's discuss what supplements I take and why:
TURMERIC CURCUMIN w/BioPerine
Turmeric (curcumin) is a member of the ginger family. It's best known as a spice. It's one of the main components of curry powder and is usually a bright orange. You may just have it in your spice cabinet right now! (I bet you are going to the kitchen right now to check, huh?)
One thing you may not know is that turmeric curcumin is a powerful antioxidant. It is believed to also have anti-inflammatory, and perhaps even anticancer properties. In fact, there is growing evidence suggesting that turmeric may help protect against Alzheimer’s disease. The main constituent of turmeric - curcumin - appears to block the progression of Alzheimer’s disease in mice. Studies of Indian populations, whose diet is rich in turmeric, show that rates of Alzheimer’s disease are very low in these groups. Of course, more research is needed to confirm or disprove the effectiveness of this, but there is evidence.
As far as Parkinson's goes, there have been ongoing studies that suggest PD could be related to inflammation, so an herb like turmeric might be very useful in reducing inflammation and maintaining brain health. Also, curcumin is capable of crossing the blood-brain barrier, which is one factor that has led researchers to investigate its potential as a neuroprotective agent for neurological disorders such as Parkinson’s and Alzheimer’s disease.
"Ok, you've convinced me. So I'll just sprinkle more turmeric on my food each day!" Not so fast, bub. You see, one of the issues with curcumin is poor intestinal absorption - you could sprinkle a gallon of the stuff on your food, and maybe less than 10% of it would reach your brain! It has to be combined with another substance to make it more absorbable in the intestinal tract - and that substance is black pepper extract, or what is known as BioPerineTM. So if you want to try turmeric , make sure it contains BioPerine; or check the label for 'Black Pepper Extract'. That is what you want.
One more thing before we move on: Some people may experience heartburn or indigestion when taking Turmeric. Also, it could interfere with certain meds, like blood thinners and aspirin. So again, talk to your doctor before you begin taking any sort of supplement, including turmeric.
"NAC? What the hack is NAC?" (ha ha, bad joke... sorry) NAC stands for N-Acetyl Cysteine. NAC, on it's own, is used to treat paracetamol (acetaminophen) overdose, and to help clear the lungs in COPD and cystic fibrosis. Pretty impressive, but one very important thing that is sometimes overlooked is the fact that, when taken internally, NAC replenishes intracellular levels of the natural antioxidant glutathione (GSH), which helps to restore a cells' ability to fight damage from reactive oxygen species (ROS). Glutathione is one of the body’s most powerful antioxidant defenses, and studies have suggested that glutathione deficiency could possibly be involved in neurodegenerative diseases like PD. GSH may support the mitochondria - the cell’s energy producers. This could prevent cell death, meaning that glutathione could possibly be neuroprotective, and therefore may slow or stop the progression of PD.
In researching NAC, I found it an obscure and poorly understood compound - at least until quite recently. There is a lot of research going on with the study of NAC and GSH, and scientists are finding it to have quite a few applications beyond just being a GSH precursor.
According to Stanford University’s Dr. Kondala R. Atkuri, “NAC has been used successfully to treat glutathione deficiency in a wide range of infections, genetic defects and metabolic disorders, including HIV infection and COPD. Over two-thirds of 46 placebo-controlled clinical trials with orally administered NAC have indicated beneficial effects of NAC measured either as trial endpoints or as general measures of improvement in quality of life and well-being of the patients.”
One might ask, "Well, why take NAC then? Why can't I just take a pill form of GSH instead?" The answer is that GSH, like turmeric, has a record of poor oral absorption - it gets broken down in the digestive system and/or the body, so little to none of it makes it to the brain. There are new applications of this being tested using intranasal administration (i.e. nasal spray) but it's going to be awhile before this would be available, if at all.
Here are some of the good things that are reported to come from taking NAC as a supplement, including:
High antioxidant properties.
Protection of tissues from the effects of exercise-induced oxidation stress.
May protect against avian influenza and more common seasonal flu symptoms.
Reduces the frequency and duration of attacks of chronic obstructive pulmonary disease (COPD).
Fights the stomach infection Helicobacter pylori.
Blocks cancer development at virtually every step in the process.
May even help with psychiatric problems like depression.
For the most part, has been reported as safe to use. The only thing really noted is that it -may- reduce blood clotting, so those folks taking blood thinners should not take NAC until they talk to their doctor!
I take a 1000mg supplement of this each day, in order to boost my GSH levels, in the hope that it will help maintain my brain function and possibly act as neuroprotection. From what I have seen, I think NAC would be useful for anyone - not just PD patients - who want to help maintain their brain health. But again, those are MY thoughts based upon MY research - check with your own physician first.
Multivitamin (without iron)
I'm including a multivitamin her because I believe (and I think research proves) that taking a multivitamin a day is helpful for everyone - but especially PD patients. Why? I can tell you from experience that one of the side effects of having PD can be Gastroparesis - in layman's terms, a slowed down digestive system. Because of the slow digestive process, some vitamins from food are poorly absorbed or not absorbed at all into the body. Taking a multivitamin can help a 'parkie' get more vitamins and minerals into their body.
But why 'without iron'? I saw a number of articles suggesting that excess iron may actually contribute to PD (although this is unproven at this time); more importantly, extra iron may affect the way levodopa is absorbed. So unless your physician says you need iron supplementation, I would suggest you stick with a multivitamin without iron.
Green Tea Extract
Green tea has been around forever - in fact, some studies have been done that show there is a fewer rate of Parkinson's reported in countries that drink a lot of green tea.
Green tea contains a group of chemicals called Green tea polyphenols (GTPs). It's these polyphenols that may help provide neuroprotection of brain cells. It may also have a protective effect on other disease processes, including some cancers and some forms of heart disease.
"Green tea, you say? I love green tea! Can't I just drink it instead of taking a pill?" Sure, that is completely acceptable - except you really need to drink a lot of it to get the full benefit. Plus, remember what I said before about gastroparesis? It may be hard for us parkies to get enough tea through our systems in order to get the benefit. Or, heaven forbid, some of us (myself included) are not particularly fond of green tea, or don't have enough time during the day to drink cups of the stuff. Hence, I take a pill form of Green Tea Extract, which is the extracted GTPs.
The only real drawback to green tea that I can find is that it DOES contain caffeine - so I try to take mine in the morning so it doesn't affect my sleep.
"Ah ha! I've heard of this before - something you take to help you sleep!" Yep, I'll bet a lot of you are probably familiar with melatonin as a sleep aid. It's a hormone produced by our brain and helps controls our circadian rhythms - or biological clock. When the eyes sense it is getting darker, our brain releases melatonin which is what makes us sleepy.
But did you also know that melatonin is one the body's most powerful antioxidants? Also, a lot of us with PD experience sleep problems - either not being able to get to sleep, or waking up during the night. This is most likely due to (1) As we age, our melatonin output decreases, and (2) It's been shown that those of use with PD usually have very low levels of naturally produced melatonin as opposed to the general population.
Sleep problems is one of the 'gifts' old man PD has given me - hence that is why I take a 3 mg melatonin every night. Now, I know the next question is: How much? And that is really up to you AND your doctor. Too little - no benefit... too much - you could be very sleepy the next day, or worse, experience side effects. It's all based upon you, your metabolism, your age, if you have PD and/or what stage of PD you are in, etc. In my case, I find that 3 mg helps - and I've heard recommendations from 10 to 100 mg as well. Also, note there are some side effects from melatonin, including:
Excessive sleepiness and/or dizziness during the day;
Might cause stomach cramps;
Might make bleeding worse in people with bleeding disorders;
Might increase blood sugar in people with diabetes;
Might increase the risk of having a seizure for those with seizure problems.
Very Important: Due to it's hypnotic effects (i.e. sleepiness) DO NOT DRIVE after taking melatonin!!
Just to be aware, there have been some studies that say taking melatonin for an extended period of time may cause your body to acclimate and re-adjust and produce less melatonin over time which will work against you. More research would have to be done, I would think, for this to be affirmed. But now you know!
Some other supplements that I have taken or researched that may help with Parkinson's include:
Resveratrol (the antioxidant compound in red wine)
I may have taken some of these in the past, and/or just researched them a bit based upon what I read; but I'll let you do your own research on them. Just remember to check with your doctor before trying any of them - remember, some may affect you personally or mess with your particular meds!
What has shown to NOT be beneficial
When it comes to supplements, there have been some that looked really promising but in the end didn't do anything for Parkinson's Disease. Here are some of the more 'noteworthy' ones:
There was a lot of hype earlier in the decade suggesting that CoQ-10, a co-enzyme, could possibly protect or even reverse the neural damage from Parkinson's. However, after a number of clinical studies were done, it was shown that CoQ-10 did basically nothing for Parkinson's.
Creatine, an amino acid, plays an important role in cellular energy production, and therefore could suggest a neuroprotective effect. However, clinical trials have found that treatment with creatine, compared with placebo, did not improve clinical outcomes.
Things to Avoid
Finally, here is what I've found (via research) that Parkinson's patients should avoid and why (note that this could change in the future if further research proves otherwise):
L-tyrosin - A precursor to L-dopa, because it can interfere in transport of levodopa to the brain, and it's been recommended that you do not combine the supplement L-tyrosine with the medication levodopa or take L-tyrosine instead.
D-phenylalanine - Used as a health supplement for the relief of discomfort - both neurological and joint. However, it can also interfere in levodopa's transport to the brain.
5-HTP - May help with depressive symptoms in Parkinson's disease; also, it's been shown that can elicit significant antidyskinetic effect in two different pre-clinical models of Parkinson’s disease. However, as with the other aforementioned supplements, it can also produce a reduction of the therapeutic effect of levodopa.
Again check with your doctor if you have further questions on these compounds.
I apologize for such a long blog entry today, but I wanted to give some education on these various supplements I take for my Parkinson's and why. My idea has been: If it doesn't hurt me, and may or has been shown to be helpful, and doesn't cost me two arms and a leg, then I will research it and maybe try it. But that is me - and all my doctors know what I take and why. So, for the final time today: Talk to your doctor(s) before taking any supplements for Parkinson's disease or for anything else!
Irregardless, I hope this entry has been useful to you and maybe given you something to think about and even chat with your doctor about. So, before you go, feel free to give me your thoughts and ideas on what you take and why by using the Comments section below. I'd be interested to know!
Till next time!