We all feel so bad that we at times feel desperate and would do ANYTHING not to feel miserable even eat rocks if we thought this would make us feel better.
So perhaps some of you have heard some in your circle mention a ketogenic diet. But, what the heck does this mean? This is an extremely high fat, normal or adequate protein and very low carbohydrate diet primarily instituted back in the 1920’s for the used of refractory or intractable epilepsy in children.
However, this is not a diet for the faint of heart it requires discipline and fortitude and above all a good support system. I am afraid that many of the stories that have been circling around in the Parkinson’s sites regarding the exaggerated benefit of the ketogenic diet is just that -a myth. Furthermore upon closer inspection, the ones I have reviewed are not truly considered ketogenic diets some at best approximate a modified Adkins diet. A true ketogenic diet and any diet, in particular in a chronically ill population as we are, requires the close supervision of a dietician. The ketogenic diet typically is begun in the hospital or in a close supervised environment. This is because it is extremely strict with calorie, protein and fluid intake. The name ketogenic means it produces ketones as the body uses fat as its source for fuel rather than glucose as it typically does. The body particularly the brain and other organs like the heart, the eyes, the kidneys are exquisitely sensitive and prefer to use glucose as its main source of fuel in the form of carbohydrates (simple and complex like breads and pastas and pure sugar). The brain alone consumes roughly 20% of the glucose.
The typical diet consists of 3-4 grams of fat for every gram of carbohydrate and protein. The dietician recommends for kids – i imagine same for adults, but don’t have that paper, 100 grams per kilogram (2.2lbs) of body weight and 2 grams of protein for every kilogram. must have incredible disciple, fortitude and a lot of assistance to be weighing in food multiple times a day before preparation. Also eliminates any deviations like surprised birthday parties at a restaurant or night out with the gang because a single day even a meal of going off the diet aborts the entire diet effect. This is the typical 4:1 ratio diet.
It is an extremely difficult diet to keep as you might be able to tell just from my description if you are to do it properly. Those that do within the PD population only about a third notice some improvement of their PD symptoms. But, even so most can not maintain this regimental diet past 6 months. ( these patients were admitted under the care of a physician in Boston who monitored and regulated their diet daily for months- still only these many improved and could not last longer than 6 months with all the support available to them).
Complications of staying on this type of diet for too long aside from the difficulty of maintaining long term because even a drop of toothpaste can have more sugar than anticipated and throw diet off the curve. Those that choose to enter into this type of treatment should do so ONLY under the guidance of a knowledgeable physician who would monitor routinely their blood and urine among other tests.
Long term side effects of prolonged ketogenic diet:
- kidney stones
- increased cholesterol
- constipation
- dehydration
- weight gain
- bone fractures
plus these persons will need to supplement diet with vitamins since diet lacking in essential nutrients – also as i mentioned before the glucose sensitive organs don’t take lightly to being deprived of glucose and they begin to infarct/ die out. Looking at the adverse effects, these are some of the most troublesome and bothersome problems we experience as Parkinson patients aside from kidney stones and high cholesterol. why would we want to make our lives more miserable?
so in my personal and professional opinion this diet would be at the bottom of the pile to try as last resort if everything else in the world had failed.
resources:
http://www.epilepsy.com/information/professionals/diagnosis-treatment/ketogenic-diet
@Aug,15 2017
All Copy rights reserved Maria De Leon MD
defeatparkinsons 
I worked with adult Brain Cancer patients on Keto Therapy. I used 4/1 Keto Therapy for our research study but have found that people are able to achieve and maintain ketosis on 2/1 Keto Therapy and below. The diet is no longer initiated in the hospital but can be done outpatient. The diet is calculated on the REE for 3-5 days until the patient is in ketosis. We can measure urine or blood ketones. When in ketosis we liberalize the diet to their TEE. Some of my patients also measure their glucose. There are many applicable recipes on the internet. I suggest the Charlie Foundation in the US and Matthew’s Friends in Europe as good sites to visit. Anyone who is following the diet should be consulting with an Registered Dietitian Nutritionist and have the consent of their medical provider.
This therapy is an emerging treatment and presently have only case studies or small research studies published. We can not presently say we have enough research to say this diet makes a difference in all neuro-disorders.
Thank you for your wonderful insights and comments and for those resources…I agree most in the past been used for treating intractable epilepsy…not much data outside of that for other neuro disorders and if you do decide to undertake need close supervision from trained health professionals. Thank you
I have a daughter with a seizure disorder whose neurologist will take her off of her meds when she’s been on the keto diet for a year. She and I have been on modified-atkins type of keto diet now such as is popular for wieght loss, for about six months. It’s true that the diet takes the self control to eat purposefully, but I feel like this article is making it sound much more difficult than it is. The research I’ve seen shows that PD patients using even a moderate keto diet had a 43% decrease in their symptoms after only 28 days. It’s not unreasonable to skip the cake at the party. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2367001/
thanks for your input..everyone is just so different and have many other underlying issues that a single ketogenic diet has not been proven to be beneficial to most and is extremely hard to maintain for long periods of time