Dietary changes and seizure control

How much coconut oil do you take every day?


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I started using coconut oil on my skin twice a day just last yr. and it has done wonders
reducing my seizures along with keeping my skin soft in the winter months. I went 1 month this past Feb. without a single seizure and that hasn't happened since I got epilepsy 44 yrs. ago. Wishing you well and May God Bless You!

Sue
 
I started using coconut oil on my skin twice a day just last yr. and it has done wonders
reducing my seizures along with keeping my skin soft in the winter months. I went 1 month this past Feb. without a single seizure and that hasn't happened since I got epilepsy 44 yrs. ago. Wishing you well and May God Bless You!

Sue

That's wonderful news, Sue.

I really do think that coconuts qualify for the (often overused) term "superfood".
Basic rule of topical body care products is don't put anything on the outside of your body if you wouldn't put it on the inside, basically if it is not edible. Coconut products are great for the outside and the inside of the body.

Some body care uses of coconut oil:

Dry skin care (as Sue can attest)
Sunburn relief
Takes the sting out of bug bites
Cures athlete's foot fungus
Great makeup remover particularly around the eyes
<Ahem>"personal lubricant" particularly for post menopausal ladies
All natural underarm deodorant (mix Cnut oil with baking soda and any fragrance you like such as lavender oil)

Another beautiful property of MCT oils is that they absorb through the skin very readily so they don't leave a greasy feeling at all.
 
Here's a great paper by a participant here on Coping with Epilepsy (CWE), Paolo Mainardi:
From the Ancient Diets to the Recent Acquisitions on the Role of Brain Inflammation in Epilepsy, Are there Any Links?
http://www.omicsonline.org/open-acc...ere-any-links-2155-9562-1000304.php?aid=59373

This is the CWE thread where I became acquainted with Paolo Mainardi. I was exploring microbial imbalances related to seizure disorder and Paolo's views which have been gaining much strength over the years.
http://www.coping-with-epilepsy.com/forums/f22/does-tryptophan-help-prevent-seizures-5183/

So, Paolo, if you're out there reading, thank you for your excellent contributions!!
 
Thanks Keith for that very interesting article. ^^^

It gives some additional insight into the mechanisms behind how ketogenic and other anti-inflammatory diet protocols operate. Rather deep scientific waters but well worth wading into, IMO.
 
Here's a great paper by a participant here on Coping with Epilepsy (CWE), Paolo Mainardi:
From the Ancient Diets to the Recent Acquisitions on the Role of Brain Inflammation in Epilepsy, Are there Any Links?
http://www.omicsonline.org/open-acc...ere-any-links-2155-9562-1000304.php?aid=59373

I could never using treat this as legitimate research. Putting aside the fact that the journal has an impact factor of less than 1, just browsing the beginning I've found inaccuracies & his citations either hold no water or are very preliminary yet he is claiming these as proof.
For example, he says
"Major limitation to evaluate the diet’s efficacy by gold standard protocols is that it cannot be administered to patients following the double-blind, crossover vs. placebo studies. For this reason the diet is nowadays largely considered as non-conventional medicine"
There have been numerous double blind studies done, some even linked to here on CWE but here are a couple more:

A blinded, crossover study of the efficacy of the ketogenic diet.

Ketogenic Diet for Child Epilepsy and Seizure Control

He also claims:
Today, we know that ketones are not responsible for anticonvulsant action [4].
First off, the journal states
The purpose of Medical Hypotheses is to publish interesting theoretical papers. The journal will consider radical, speculative and non-mainstream scientific ideas provided they are coherently expressed
https://www.elsevier.com/journals/medical-hypotheses/0306-9877/guide-for-authors

Secondly, Pablo wrote his own citation himself.
So not only did Pablo cite a journal that has no validity in terms of showing proof or valid studies, he wrote the claim himself & tried to use that to claim a falsehood and base a whole article on that. It's hard not to see that as deceptive behaviour.

However, it's a great example of why we should be careful, even if something looks scientific or official we should still not be scared to check citations, impact factors & just the reputations of the journals overall before we accept certain claims.
 
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The whole point of a double blind study is that, not only do the patients not know who is in the test group and who are the control subjects, the medical practitioners are also kept in the dark.
This would be rather difficult to do logistically speaking when studying ketogenic protocols. The only way I could see to make it work would be devising some kind of generic looking "shake" which could be heavy on the coconut cream for the keto subjects and heavy on the non-fat yoghurt for the control group. If one group is getting bacon and eggs for breakfast and the other is getting shredded wheat with skim milk, it is going to be pretty obvious which group is which.

I don't think that Paolo meant that there had never ever been a double blind study of ketosis, just that this double blind "requirement" to be considered "gold standard" worthy has traditionally been an impediment to getting the captain spaminators of the world to take otherwise solid research seriously.

Also in Paolo's case I think that we would all be well advised to remember that he is managing to express extremely complicated scientific ideas in a language that is not his first. How many of us could write as cogently as he does in Italian?

Before anyone gets accused of being deliberately deceptive, more questions need to be asked.
 
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, just that this double blind "requirement" to be considered "gold standard" worthy has traditionally been an impediment to getting the Captain Spaminators of the world to take otherwise solid research seriously.

I was finding reading both "sides" of the issue interesting today, until I read this put-down comment 'Captain Spaminators of the world. ' It just isn't necessary to this or any discussion to make personal jabs at anyone, regardless of how passionate they are about a topic.
 
I read all the same material that Epileric did. He called Paolo's work "illegitimate", and "deceptive". Those weren't "put downs"?

In reading that same research what I saw was someone writing in a language they didn't grow up with trying but not always succeeding in being clear about which citation tracked back where. If my Italian were not so rusty it would be interesting to read it in the original. Perhaps it would be more clear. But instead of asking for clarification, Eric chose character assassination.

I think we should be more welcoming when people of different nationalities want to participate in CWE. Diversity makes the experience richer for all.

Besides, he calls himself the Spaminator. All I did was elevate him to the rank of Captain :)
 
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Besides, he calls himself the Spaminator. All I did was elevate him to the rank of Captain :)

Eric didn't call himself spaminator, Bernard has added these subtitels to members when he asked them to be moderators.
Eric was 'promoted' by Bernard to 'spaminator' thanks to his great effort to identify and report/ban new members who just sign on to our forum to post spam, in which he does a great job. He can be called 'captain spaminator' righteously for doing so and we should all be very grateful for that.

But that's not what you meant with this comment. The spaminator title has nothing to do with this discussion because there was no spam posted at all. So please keep it on content and debate him with arguments, let's avoid the use of sarcastic remarks like this when you don't agree.
 
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I read all the same material that Epileric did. He called Pablo's work "illegitimate", and "deceptive". Those weren't "put downs"?

That's right, I referred to the work. You referred to me personally.

In reading that same research what I saw was someone writing in a language they didn't grow up with trying but not always succeeding in being clear about which citation tracked back where. If my Italian were not so rusty it would be interesting to read it in the original. Perhaps it would be more clear.
Citing a non-peer reviewed journal has nothing to do with language, neither does trying to fool people by citing oneself there.

I find it amazing that you can call his study unclear because of language in one breath & "deep science" in the other.

I think we should be more welcoming when people of different nationalities want to participate in CWE. Diversity makes the experience richer for all.
The only reference made to nationality was by you and that is also off topic. As Dutch Mom said, please stay on topic rather than making personal attacks.
 
On topic again: there has been performed an awful lot of research on the ketogenic diet, including double blind placebo controlled animal studies, rats ans mice are the most used test animals.

Human research are usually cohort studies and retrospective case studies, no double blind placebo controlled studies because of the reason Aloha mentioned.

But this type of research has become very well possible using the ketogenic formula Ketocal developed by Nutricia for bottle fed babies and toddles + tube fed children. Thanks to the formula nutrition which as a perfect ratio (4:1 and 3:1) it's possible to feed one group with a ketogenic diet and a control group with formula on lower ratios and non ketogenic formula without researchers and parents knowing which formula the children are fed with, as long as they don't measure blood or urine ketones.

A human research using Ketocal is currently being performed in The Netherlands. Results not published yet because the trial is still running, I know some of the kids involved, their parents are members of our Dutch forum. The study is being performed by the Dutch Epilepsy Center Kempenhaeghe in corporation with two academic hospitals,
The Utrecht Wilhelmina Childrens Hospital and the Rotterdam Sophia Children's Hospital.


Overview with many references to other studies
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3321471/

https://books.google.nl/books?id=cvk76-ZpmSEC&pg=PA310&lpg=PA310&dq=double+blind+placebo+ketogenic+diet&source=bl&ots=SzjYptGXhL&sig=m3KJdtEjNcnG7lAVen4eoxsPrpE&hl=nl&sa=X&ved=0ahUKEwjvuJf_vfrNAhWE7xQKHbA-BGkQ6AEIVTAE#v=onepage&q=double%20blind%20placebo%20ketogenic%20diet&f=false


https://nutritionandmetabolism.biomedcentral.com/articles/10.1186/1743-
7075-6-31
Study of the ketogenic agent AC-1202 in mild to moderate Alzheimer's disease: a randomized, double-blind, placebo-controlled, multicenter trial.
Henderson ST, Vogel JL, Barr LJ, Garvin F, Jones JJ, Costantini LC
Nutr Metab (Lond). 2009 Aug 10; 6():31.
[PubMed] [Ref list]

http://www.ncbi.nlm.nih.gov/books/NBK209323/ (dated because of 'the study mentioned above.)

There are no known human clinical trials evaluating the role of ketogenic diet in TBI; however, ketogenic diets have been shown to be effective in difficult-to-treat childhood epilepsy syndromes in many cohort studies and two recent clinical trials. The classic 4:1 ketogenic diet, as well as modified ketogenic diets like the MCT diet, demonstrated similar efficacy in symptomatic generalized epilepsy syndromes and partial epilepsy syndromes, with the majority of cohort studies indicating greater than 50 percent reduction in seizures (Beniczky et al., 2010; Coppola et al., 2010; Nathan et al., 2009; Porta et al., 2009; Sharma et al., 2009; Villeneuve et al., 2009). A combined analysis of outcome data from eleven cohort studies published since 1970 estimated that 15.8 percent of patients became free of seizures, 32 percent experienced greater than 90 percent reduction in seizure frequency, and nearly 56 percent of the patients had greater than 50 percent reduction of seizures (Cross and Neal, 2008). Similar results were found in a systematic review of 14 studies (Keene, 2006); however, the 2003 Cochrane review on the ketogenic diet for epilepsy concluded that although the diet is a treatment option for patients with difficult epilepsy (those taking multiple antiepileptic drugs), there is no reliable evidence from randomized control trials to support the diet’s general use in people with epilepsy (Levy and Cooper, 2003).

When the first multi-center, randomized control trial was reported in 2008 (Neal et al., 2008), the results at three months showed a significant effect in achieving seizure control, with a greater than one-third reduction in seizure frequency in the diet group compared to controls. This study found no significant differences in efficacy at 3, 6, and 12 months between classical ketogenic diets that contained long-chain fatty acids, and a modified ketogenic diet with MCTs (Neal et al., 2009). A clinical trial of children with intractable Lennox-Gastaut syndrome investigated the efficacy of the ketogenic diet in conjunction with a solution of either glucose or saccharin (60 g/day) to negate ketosis after a 36-hour fasting period, and found a similar significant decrease in seizures (Freeman et al., 2009).

Long-term beneficial outcomes to 24 months have been demonstrated with the ketogenic diet in certain childhood epilepsy syndromes (Kossoff and Rho, 2009). These studies have led to even more recent understandings regarding the mechanism of action, such as recent evidence that suggests the ketogenic diet mechanism is related to its increasing extracellular adenosine and the actions of adenosine at the A1 receptor, which include inhibiting glutamergic effects (Masino et al., 2009).

Studies show that the percentage of patients remaining on a ketogenic diet beyond 24 months decreases over time. Hemingway and colleagues (2001) found that 39 percent of patients remained on the diet at two years, 20 percent at three years, and 12 percent at four years. The main reason given for discontinuing the ketogenic diet beyond 24 months was the patient being seizure-free or having a significant seizure reduction. Although there are no human short- or long-term studies evaluating the ketogenic diet for TBI, these data suggest that use of the ketogenic diet should be most strongly considered during the initial rehabilitation interval associated with the greatest gains.

As mentioned earlier, several observational studies have investigated the use of ketogenic diets modified in an effort to improve tolerability. In 2009, Evangeliou and colleagues exam ined the role of branched-chain amino acids (BCAAs) as a supplemental therapeutic agent to the ketogenic diet in children with intractable epilepsy, based on evidence of antiepileptic action in animal models (for further discussion on the role of BCAAs in TBI and other CNS injuries, see Chapters 4 and 8). Although the fat-to-protein ratio was altered from the classic 4:1 to 2.5:1, there was no observed effect on ketosis. Furthermore, 47 percent (n = 17) of the patients who had already achieved a reduction of seizures on the ketogenic diet saw an even greater reduction after the BCAA supplementation, with three patients experiencing a complete cessation of seizures (Evangeliou et al., 2009). Further studies are needed to examine this particular combination; however, the results of this prospective pilot suggest a possible synergistic action between the ketogenic diet and BCAAs.

Pharmacological research on dementia has used a cognitive assessment instrument known as the Alzheimer’s disease (AD) Assessment Scale-Cognitive subscale (ADAS-Cog), which provides quantification of cognitive domains such as memory and attention in order to assess outcomes. There is some evidence that administering a form of MCTs in patients with a normal diet increased the serum level of the ketone body gamma hydroxybutyrate and increased ADAS-Cog scores in a population of patients with mild to moderate AD compared to placebo in the same population (Henderson et al., 2009; Reger et al., 2004). Given that multiple studies have shown a decreased risk of developing AD in those consuming foods high in essential fatty acids, it is also possible that the ketogenic diet may confer greater neuroprotection in people with AD than normal or high-carbohydrate diets (Gasior et al., 2006; Henderson, 2004; Morris et al., 2003a, 2003b).

Animal Studies

Studies with a rat model of TBI have suggested reduction in volume of damage and improved recovery with use of the ketogenic diet (Prins, 2008). One study demonstrated increased protection against oxidative stress and deoxyribonucleic acid damage because of increased redox status in the hippocampus (Jarrett et al., 2008). Several investigators have identified an age-dependent effect in rat TBI models, with greater levels of reduction of edema, cytochrome c release, and cellular apoptosis being observed in younger rats (Appelberg et al., 2009; Hu et al., 2009a).
Evidence of neuroprotection has been demonstrated with 24-hour fasting in rodent models of controlled cortical impact injury following moderate but not severe injury. Fasting for 48 hours demonstrated no significant benefit (Davis et al., 2008).
As mentioned earlier, animal studies have evaluated the ketogenic diet in stroke, another form of acquired brain injury, as well as in neurodegenerative disorders such as AD, Parkinson’s disease, and ALS (Gasior et al., 2006; Prins, 2008; Zhao et al., 2006). The majority of experimental studies in other models of CNS injury support the evidence suggesting beneficial effects of the ketogenic diet. It is also important to note that age-related differences in ketogenesis and cerebral utilization of ketones have been observed in animal models, and suggest the developing brain has a greater capacity to generate, transport, and utilize ketone bodies as an energy substrate (Appelberg et al., 2009; Prins, 2008; Prins et al., 2005).
Because the only TBI data available has been from rodent models, there are significant limitations (as stated in Chapter 3) in correlating the results from animal studies to humans (e.g., rodents tend to eat immediately after injury, which is not typical human behavior). An additional limitation encountered when conducting energy metabolism studies with rodents is that they have lesser energy reserves than humans and a higher metabolic rate; prolonged fasting also can be more devastating to rodents than to humans. Fasting rodents for longer than a few days will likely result in their death, while uninjured humans can fast for five to six weeks without mortality. However, feeding rats a fat-only diet has been demonstrated to prolong survival (Moldawer et al., 1981) and should be investigated as a possible model to measure the efficacy of compounds that alter energy metabolism
 
Dietary Changes and Seizure Control--Response to Epileric's Post

Dutch Mom,

Thanks for all the information you posted on this thread. However, I also want to respond directly to Epileric's post (and keep on the topic in our title)

First of all, thank you Keith for posting this insightful and important article on Dr. Mainardi's research.
Second, Epileric, you wrote, “…just browsing the beginning I've found inaccuracies & his citations either hold no water or are very preliminary yet he is claiming these as proof.”

You also wrote, “"Secondly, Pablo wrote his own citation himself.
So not only did Pablo cite a journal that has no validity in terms of showing proof or valid studies, he wrote the claim himself & tried to use that to claim a falsehood and base a whole article on that."

Dr. Paolo Mainardi is a research chemist at the University of Genoa. He got his chemistry degree in 1981 and has been in research with his specialty in neurochemistry since around 1982. He has focused some of his attention and expertise on the link between the gut and brain in neurological disorders, including epilepsy.

[PDF]Paolo Mainardi Department of Neuroscience University of Genova ...
http://www.coping-with-epilepsy.com...355/www.gutbrainaxis.org/pdf/.../pepcon08.pdf
Apr 24, 2008 - Paolo Mainardi. Department of Neuroscience. University of Genova. Italy. Shenzhen, 22 – 24 April '08. This study was supported by. Davisco
http://www.gutbrainaxis.org/pdf/2008 04 22 pepcon shenzen/pepcon08.pdf

With his 35 years in the field, please explain your qualification to make the criticism you made in your post. Did you look into studies and articles he authored at Research Gate? Research Gate is a site where scientists share their research and writing with other scientists.

Those publications can be found there:

Paolo Mainardi - Publications - ResearchGate
https://www.researchgate.net/profile/Paolo_Mainardi/publications
Paolo Mainardi • Università ... No preview • Article • May 2006 • Neurochemical Research. Request ... No preview • Article • Jan 1998 • Neurochemical Research.
https://www.researchgate.net/profile/Paolo_Mainardi/publications


Does tryptophan help prevent seizures? - Epilepsy Forum
www.coping-with-epilepsy.com › ... › Peer Support › The Library
Dec 7, 2008 - 20 posts - ‎4 authors
I’m Paolo Mainardi, I’m a chemistry and I work on epilepsy in the Neurological Clinic of University of Genoa since 1982. ..... The idea born on my results on amino acid anaylisis in blood of epileptic pts: I found all large ...
http://www.coping-with-epilepsy.com/forums/f22/does-tryptophan-help-prevent-seizures-5183/

Did you look up his bio on CWE,where he states he is a PhD and in the field of Chemistry since 1981? You didn’t even bother to notice that his name is Paolo, not Pablo.

And You also wrote, ""However, it's a great example of why we should be careful, even if something looks scientific or official we should still not be scared to check citations, impact factors & just the reputations of the journals overall before we accept certain claims. "

What citations, impact factors & just reputations of the journals did you check? 35 years as a neurochemist at the University of Genoa doesn't count?


Considering that Dr. Mainardi has been in the neurosciences department at the University of Genoa since 1982, I believe you owe him an apology for attacking his credibility as a scientist and as a member of this group.

This is a support group for people with seizure disorders. We are fortunate to have a researcher in the field among our members. You have misinformed and misled everyone in this group with your poorly researched post and prejudicial statements. It won’t surprise me if Dr. Mainardi reads your post and decides to abandon CWE.

You also owe an apology to everyone in CWE for so seriously denigrating and misconstruing not only Dr. Mainardi and his research, but all research done on the Ketogenic diet. Your poorly informed attack makes it difficult to take what you write seriously.



July marks 18 years seizure free for me, due in large part to diet and behavioral modification. I urge everyone in this group to look up Paolo Mainardi’s research, particulary those also dealing with other disorders such as Parkinson’s, autism, fibromyalgia, gluten intolerance, as well as his writing on the Ketogenic diet. “The answer’s out there,…somewhere.” :clap:
 
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Yes Zoe, I saw that & it is true that he has those qualifications but if your only argument is that he must be right because he has letters after his name and years of experience then I'd have to kindly disagree.

One does not need a PhD to see how it might be questionable to post something in a non-peer reviewed journal & use it as a citation to back something he claims as fact in another journal or to claim that double blind studies can't be done when they have. To say that we shouldn't question something because the person has a certificate or so many years of experience would not be a good idea.

Many times researchers, doctors etc with many years experience have done dishonest/bad things so there's nothing wrong with pointing out questionable behaviour or claims. Maybe he has a good explanation but you have to admit that what he did does look questionable and to say that we shouldn't question the people who are making decisions on how we treat our epilepsy is not a good idea In my opinion. It's actually been my experience that the people who dislike being questioned the most are the ones that we should be the most suspicious of.

That said, there might be a good explanation for those but I don't think it is a good idea to automatically accept treatments without question.

I do apologize however for calling him Pablo. I was looking at what Aloha called him before she edited her mistakes.
 
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From this point on Epileric, if you have anything to say to me about my response to your post regarding Dr. Mainardi's article, send them to me pm. This thread is about dietary changes and seizures.
 
Human research are usually cohort studies and retrospective case studies, no double blind placebo controlled studies because of the reason Aloha mentioned.

But this type of research has become very well possible using the ketogenic formula Ketocal developed by Nutricia.
A human research using Ketocal is currently being performed in The Netherlands. Results not published yet because the trial is still running, I know some of the kids involved, their parents are members of our Dutch forum. The study is being performed by the Dutch Epilepsy Center Kempenhaeghe in corporation with two academic hospitals,
The Utrecht Wilhelmina Childrens Hospital and the Rotterdam Sophia Children's Hospital.
This is very interesting information, Dutch Mom. Please keep us posted if you hear anything in your Dutch forum as the results from this trial come in. Thank you.
 
I have run across a couple of interesting products that others interested in ketogenic diets might like to research.

http://getmoreketones.pruvitnow.com

This^^ is a powdered supplement that claims to put you into dietary ketosis within 15-20 minutes. I have an email in to the company asking about their definition of "natural flavors" which is on the label. I'm wanting to make sure that is not hiding any MSG or other "natural" but not really healthy ingredients. I will update if I hear back from them.

http://www.ketonix.co

^^^This is a portable re-usable ketone measuring device that you blow into instead of having to prick your finger for blood or rely on somewhat less than accurate urine strips. Has anyone tried this out yet? I'm curious as to how accurate it proves to be. I was thinking that, if it is accurate, it might be very useful particularly for parents like KarenB and Dutch Mom who are caring for children with epilepsy using a ketogenic diet. Less pokes in the finger is always a good thing.
 
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Hope For Adults With Uncontrolled Seizures: Atkins Modified Diet

When The Modified Atkins diet was developed, it was used mostly for children. Now it is proving useful for adults as well.


Adult Epilepsy Diet Center: Johns Hopkins Epilepsy Center
www.hopkinsmedicine.org › ... › adult
Johns Hopkins School of Medicine
The modified Atkins diet is a low carbohydrate, high fat alternative to the ketogenic diet for adults, created at Johns Hopkins in 2002. Recent studies have shown that the modified Atkins diet lowers seizure rates in nearly half of adults that try it, usually within a few months.
"Starting in August 2010, we are excited to offer the first ever clinic specially designed for adults with epilepsy using dietary treatments at the Johns Hopkins Hospital in Baltimore, Maryland. As Johns Hopkins Hospital is one of the world leaders in dietary therapies, this is a significant advance in using diet therapy for adults. We have highly skilled dieticians and neurologists that can help customize the diet to fit your needs. Although we do not start adults on the traditional ketogenic diet, we will see adults who are already receiving the ketogenic diet but need an adult dietitian and neurologist to manage their care.

Our clinic is recommended to people:

Who have epilepsy,
Who have tried multiple medications in the past with limited success,
Who have a vagus nerve stimulator,
Who have been on diet therapies in the past with benefit and would like to try again,
Who are overweight, or
Who are awaiting epilepsy surgery or another new treatment that is not yet available."

http://www.hopkinsmedicine.org/neur...cs/epilepsy/adult/adult-epilepsy-diet-center/
 
When The Modified Atkins diet was developed, it was used mostly for children. Now it is proving useful for adults as well.
Indeed it is. The diet I'm on is closer to the MAD than to the traditional keto protocol. The MAD allows for a higher percentage of one's calories to come from protein which I find helpful in maintaining muscle mass as I am aging.
 
Agreed, as we age, diet is more than a little critical. So many conditions we are led to think are normal aspects of aging, are not; they are the result of years and years of degeneration from unhealthy diet habits.
 
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