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How I Started Exercise with Charcot Marie Tooth

Exercise - Weights

About a week ago I posted an article, “Exercise Routine for Someone with Charcot Marie Tooth,” about my exercise routine. In the article, I mentioned that I started out slow with exercise, but I didn’t really go into much detail. There was some negative feedback from that article. Feedback like, “you’re prescribing a dangerous and potentially deadly lifestyle for people with Charcot Marie Tooth.” My assumption is that the people giving this feedback misunderstood the article. I wasn’t prescribing any sort of lifestyle. Instead, I was merely sharing my success story. I was not advising anyone to suddenly start an intense exercise routine without building up to it.

With that said, I’d like to describe in detail how I started out with exercise. It is my hope that this will show that exercise is not at all unhealthy for people with CMT. In fact, it is necessary for people with CMT to exercise. We must build and maintain our muscle in order to retain strength throughout our life. Otherwise our muscles and peripheral nervous system will waste away.

Read through to the end for Reader Participation. I’d really love to hear feedback and inspirational stories!

My First Exercise

Exercise - Bike

I began trying to be active about two years ago, well before I thought about changing my diet. I started with just bike riding and nothing else. Finally, I got a bike and attached it to a trainer. This turns it into a stationary bike, so I can ride in private. It was tough, I have to admit. I could ride for maybe 20 minutes before my muscles were too fatigued to continue. Instead of losing motivation because of this fatigue, I just kept telling myself that it would improve with exercise. The fatigue had to improve, right?

The fatigue did indeed improve. After about a week of riding each day, I could ride up to 45 minutes each time. That was a huge improvement for just one week! That showed me that even with CMT, I can build muscle and improve my energy. I just had to try, and I had to stop listening to all the discouragement out there.

The Slow and Steady Climb

Exercise - Slow Climb

I didn’t add to my bike riding routine for months, nearly a year. I had tried to be active earlier on in life, and I learned very quickly that I need to take things easy and build up. Having an injury with CMT can set a person back months in exercise. It was only when I was riding my bike up to two or more hours each day that I decided I could add more to my routine.

My Starter Routine

To start out, I lifted very light weights. I wasn’t about to compete with any body builders! To give you an example, here is a list what I did when I started out:

  • Bike for 1 hour
  • Wrist Curls – 10 lb, 2 sets of 8
  • Arm Curls – 10 lb, 2 sets of 8
  • Shoulder Press – 10 lb, 2 sets of 8
  • Chest Press – 15 lb, 2 sets of 8
    • Yes, that’s the equivalent of bench pressing 30 lb. Start out easy!
  • Squats – 2 sets of 8
    • No weights! And easy squats, not real ones. I squat down onto a low weight bench and stand back up in the squat position. Squat down on something as low as a bathtub rim, for example.
  • Calf Raises – 2 sets of 8

This routine might sound intense to sedentary people, but it isn’t. The weights above are light, so light that I figured I wouldn’t see any improvement at all. I had to start somewhere, though. Keep in mind that my “light” may not be your “light”. Start with a weight that is so easy that you don’t even feel like it’s exercise (yet). You’re just getting your muscles used to moving and being active.

Time to Climb

After a couple of weeks of doing this routine, the weights were so light that it felt like I was picking up an empty glass. I could honestly feel that my muscles were adjusting to exercise. It wasn’t as much that they got stronger as it was that they had become used to the movements. My muscles were ready when I told them to lift something, even if that something was light.

This told me it was time to move up in weight. I continued my routine, but I increased the weight by 5 lb, and I also added 2 repetitions to each set. My new routine looked like this:

  • Bike for 1 hour
  • Wrist Curls – 15 lb, 2 sets of 10
  • Arm Curls – 15 lb, 2 sets of 10
  • Shoulder Press – 15 lb, 2 sets of 10
  • Chest Press – 20 lb, 2 sets of 10
  • Squats – 2 sets of 10
  • Calf Raises – 2 sets of 20

As you can see, I also increased my Calf Raises repetitions to 20. They were just getting too easy, so I felt the need to increase. I want to emphasize that I’m listening to my body here. I don’t want to injure myself, but if something is so easy that it doesn’t feel like I’m doing it, it’s time to increase.

Recap of the Climb

Before moving on to current day, I want the time frame of how I built up my routine to be very clear. I started biking two years ago, and it took a year of biking every single day for me to feel comfortable adding strength training to my routine. Others may be different, but that’s how it went for me.

I started with light weights, so light that it wasn’t even exercise. I just wanted to get my muscles adjusted to moving more often. After I added light weight training into my routine, it took me a couple of weeks to feel like I could increase the weight to any significant amount. I increased the weight the smallest amount I could, by 5 pounds. No need to jump up to anything dangerous. I just steadily and slowly increased weight over time. Sometimes it would take me up to a month or longer before I could increase the weight again.

Current Day

Although I detailed my exercise routine in my previous article, it has changed up a little since then. I fast every other day now, and I don’t exercise when I fast.

I’m posting my current routine here as well, just for convenience and to show it has changed a tad.


  • Wall Slides, 3 sets of 10
  • Prone Y’s, 3 sets of 10
  • Shoulder Dislocations, 1 set of 20
  • Foam Roller Back Stretch, 2-5 minutes of 30 second intervals

3-5 Days a Week

  • Cardio, 1 hour bike ride
  • Wrist Curls, 3-4 sets of 15
  • Arm Curls, 3-4 sets of 10
  • Bent-over Row, 3-4 sets of 10
  • Shoulder Press, 3-4 sets of 10
  • Dumbbell Butterfly, 3-4 sets of 10
  • Chest Press, 3-4 sets of 10
  • Lat Pullover, 3-4 sets of 15
  • Arm Extension, 3-4 sets of 10
  • Calf Raises, 3-4 sets of 20
  • Squats, 3-4 sets of 10
  • Sit-ups, 3-4 sets of 20

Notice that I still do my back exercises everyday. I moved the cardio to 3-5 days a week, and it’s only for 1 hour now.

Consult Your Doctor

Personally, I don’t believe any of this is dangerous. I believe people convince themselves that an active lifestyle is dangerous in order to excuse themselves from exercising. I say this because I used to do the exact same thing. Doctors and people with CMT told me exercise was dangerous, and I was happy to use it as an excuse to stay lazy, sedentary, and unhealthy. It simply isn’t true, though. Exercise is good for you, plain and simple.

With that said, please be sure to consult your doctor before making any significant changes in your lifestyle. Bear in mind that I have a team of doctors and a very capable nutritionist who monitor my progress.

Audience Participation!

Here comes the fun part! I’d like to hear the reader’s opinion on exercise, negative or positive. Also, I’d like to hear success stories.

Why don’t you exercise? If you do exercise, what convinced you to start? What do you do for exercise? Comment below, or share this article on social media along with your story!

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An Avocado a Day Helps Keep the Doctor Away


I recently published an article, “Electrolytes Not Optional for Keto and Charcot Marie Tooth,” that details the importance of electrolytes. Electrolytes are especially important for keto dieters and patients with Charcot Marie Tooth. In the article, I mentioned avocado as a good source of both potassium and magnesium. Just how nutrient dense is an avocado?

Avocado, the Superfood

An average avocado has almost double the amount of potassium as a banana. Furthermore, an avocado provides 10% of the recommended daily amount of magnesium. One avocado can  provide someone with almost half of their daily fiber. It also has plenty of healthy fat, lending itself to the Keto diet.


Avocado a Day - Oatmeal

Even while counting net carbs (total carbs minus fiber), I sometimes hear complaints that it is difficult to find fiber within a ketogenic diet. Due to the Standard American Diet, the popular school of thought is that most healthy fiber comes from grains. This is simply untrue. Many vegetables have plenty of fiber in them, including broccoli, spinach, and artichokes. These can’t beat avocados, though.

A single avocado has around 13 g of fiber, or 52% of the recommended amount of daily fiber. That’s quite a lot of healthy, from-food fiber packed into one superfood.


The body uses magnesium in more than 300 biochemical reactions. Considering this, magnesium is fairly underrated. Magnesium helps to maintain normal nerve and muscle function, supports a healthy immune system, regulates the heart beat, and helps bones remain strong. With this in mind, a magnesium imbalance can cause a multitude of health issues.

The average avocado has 10-12% of the daily value for magnesium. That’s a good amount of magnesium.


Our body needs potassium to build proteins, build muscle, maintain normal body growth, and control the electrical activity of the heart. These are important functions for the body! As a result, it’s important to get the recommended daily amount of nearly 4,700 mg of potassium.

Potassium is where avocados shine. One whole avocado has around a whopping 1,000 mg of potassium. That’s a lot, but it’s still only about a fourth of the recommended daily amount. Still, that’s quite a bit of potassium for one fruit. Yes, the avocado is a fruit.


Our bodies need fiber, potassium, and magnesium in order to function normally. Avocados provide these nutrients in abundance. A whole avocado provides 13 g of fiber, 58 mg of magnesium, and 1,000 mg of potassium. That’s 52% of fiber, 10% of magnesium, and about 20-25% of potassium for their recommended daily amounts. This is why I have one whole avocado every single day. The saying really should be changed to, “an avocado a day keeps the doctor away.”

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Electrolytes Not Optional for Keto and Charcot Marie Tooth

Electrolytes - Balanced Rocks

Electrolyte imbalance can cause many health issues. In fact, a lack of electrolytes can cause irregular heartbeat, fatigue, muscle weakness and cramping, nausea, vomiting, and headaches. That’s just a few side effects of not consuming enough electrolytes daily. As a matter of fact, these side effects are usually what cause some of the symptoms that people associate with the Keto Flu. For that reason, taking in enough electrolytes can help ease and even avoid the Keto Flu.

Furthermore, people on the ketogenic diet are prone to electrolyte imbalance. On a high-carb diet, the body retains more water and therefore more electrolytes. In contrast, on a low-carb, high-fat diet, the body retains less water and electrolytes. This means a person, especially a patient with a neurodegenerative disease like Charcot Marie Tooth, on the ketogenic diet should consume more electrolytes than normal.

So what exactly are electrolytes, what are they for, and how much should we be consuming?

Important Electrolytes

There are quite a few different electrolytes. Electrolytes commonly found in the body include:

  • Sodium
  • Potassium
  • Magnesium
  • Calcium
  • Phosphate

For this article, we will be focusing on sodiumpotassium, and magnesium.


Electrolytes - Salt

Sodium is important for a couple of reasons. According to “Sodium in diet” on the Medical Encyclopedia. “the body uses sodium to control blood pressure and blood volume.” The article adds, “your body also needs sodium for your muscles and nerves to work properly.” With that in mind, sodium is quite important for patients with Charcot Marie Tooth.

On a ketogenic diet, we simply need more sodium in our diet. “5 Most Common Low-Carb Mistakes (And How to Avoid Them),” from HealthLine mentions that low sodium intake is a common mistake on low-carb diets. A low-carb diet lowers insulin levels, which makes the kidneys excrete excess sodium from the body. As a result, this can lead to a sodium deficit in the body.

Sodium is the easiest of the three electrolytes to consume. One just needs to increase their intake of salt by adding it to foods. Many keto dieters and nutritionists agree that people adhering to the keto diet should consume between 2,000-4,000 mg of sodium each day.


Electrolytes - Potassium

As an electrolyte, potassium is just as important as sodium. “Potassium in diet,” from the MedlinePlus Medical Encyclopedia, states that potassium helps to build protein, build muscle, maintain normal body growth, and control the electrical activity of the heart. Due to potassium’s influence on muscle growth, it’s even more important for those of us with Charcot Marie Tooth. With this in mind, be sure that you’re taking in enough potassium in your diet if you have a neurodegenerative disease or a disease that causes muscle wasting.

Supplementation will not work with potassium. Basically, most potassium supplements will have a limit of 99 mg per serving, and it is suggested to consume 4,700 mg of potassium each day. Therefore, you would need to take a lot of supplements to supplement dietary consumption.

Luckily for us keto dieters, there are many more options than just bananas for potassium. Here are a few foods high in potassium:

  • Avocado
  • Spinach
  • Zucchini
  • Broccoli
  • Eggplants
  • Mushrooms

I’ve found avocados and spinach to be the best sources of potassium and magnesium.


Magnesium is a very important and highly underrated electrolyte. The body needs magnesium “for more than 300 biochemical reactions,” according to “Magnesium in diet” from the MedlinePlus Medical Encyclopedia. Furthermore, magnesium is necessary to maintain normal nerve and muscle function, making it important for patients with Charcot Marie Tooth disease. Magnesium also helps regulate the heartbeat, supports a healthy immune system, and helps bones remain strong.

Magnesium supplements exist, and you can get them in significant dosage. Although it’s very rare, it is possible to take in too much magnesium. The suggested daily amount of magnesium is between 400-500 mg. It’s easy to exceed this amount if you’re taking more than one, 250 mg magnesium supplement each day. Make sure to monitor your intake and to stay between the daily recommended amount. I suggest just getting magnesium from your diet, as it’s fairly easy to reach the daily amount with the proper foods.

Foods high in magnesium include:

  • Spinach
  • Avocado
  • Almonds
  • Pumpkin seeds

Spinach is a wonderful source of magnesium. I include spinach and avocados in my daily diet to help reach my potassium and magnesium goals.



No matter what diet we’re consuming, electrolytes are important to our body. During a keto diet, our kidneys excrete more sodium from the body than normal. Therefore, a person adhering to the keto diet needs to consume more sodium than normal. We also don’t retain as much water when consuming so little carbs, so we have less electrolytes in our body in general while in ketosis. This all means that we should monitor our electrolyte intake carefully while on the keto diet.

Charcot Marie Tooth is a neurodegenerative disease that causes muscle weakness, cramping, and wasting among many other symptoms. The effect that CMT has on our muscles means that electrolytes are extra important to patients with CMT. A sports drink isn’t going to cut it! Patients with CMT needs to monitor their electrolyte intake and be sure to get enough electrolytes in their diet each day.

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Boost Effectiveness of Intermittent Fasting

Intermittent Fasting - Coffee

Intermittent Fasting (IF) has been of interest for me since I saw some presentations by Dr. Jason Fung about a year ago. It took me awhile to work up the courage to try fasting. I was apprehensive due to my health issues. Little did I know the benefits of intermittent fasting that I would see. See “Benefits of Intermittent Fasting for Charcot Marie Tooth,” where I detail the benefits of IF for CMT.

Prolonged vs Intermittent Fasting

The more I enjoyed the benefits of intermittent fasting, the more I began to wonder if there were ways to boost fasting benefits. I started slow with intermittent fasting before moving on to prolonged fasting. There are differing opinions about what these two types of fasting mean. For this post, I define these types of fasting as follows:

  • Intermittent Fasting – Fasting for 24 hours or less. Example: 16/8 Fast, 16 hours of no calories with an 8 hour window to eat each day.
  • Prolonged Fasting – Fasting for longer than 24 hours. Usually limited to 72 hours, but some people go for even longer than 3 days.

One can gain the benefits of fasting from either of these techniques. It really comes down to personal preference and which one is most convenient for one’s lifestyle. I personally prefer the prolonged fasting. I find it convenient to not eat for two days out of my week. My routine is currently a 48 hour fast each week. After reading this study about IF and CMT, I may switch my routine to Alternate-day Fasting, or a cycle of 24 hour fasting followed by 24 hours of food.

I was feeling the benefits of fasting, but I wanted to find out if I could maximize the efficiency of each fast. I wanted to burn as much fat as possible during my fast.

Boost Intermittent Fasting Benefits

There are two tools I now use to maximize the efficiency of my fasts: Bulletproof Coffee (BPC) and cardio. Combining these two the morning of my fast immediately puts me into ketosis and keeps me there throughout the fast. I’ve tested doing a fast with and without these two and different combinations of both to see just how my body would behave. I always lose the most weight and feel the best during a fast when I start it with a BPC and cardio.

Bulletproof Coffee

Starting my fast with a Bulletproof Coffee helps me sustain my energy throughout the fast. If I don’t start my fast with a BPC, I always seem to wake up groggy the next day and have a hard time prolonging the fast over 24 hours. I also seem to get more hunger pains when I don’t have a BPC before my fast. I believe it’s all the fat in the BPC that helps me feel sated throughout my fast. After trying to fast with and without a BPC several times, I have decided to always start my fast with a BPC. If you’d like to know more about my experiences with BPC, please read my Bulletproof Coffee for Thirty Days and Beyond post.

The Bulletproof Coffee at the start of each fast helped sustain my energy and sate my hunger throughout the fast, but it didn’t make much of a difference in how much fat I was losing during the fast. There was a slight difference in weight loss, but nothing significant. I knew I was in a higher state of ketosis during my fast, but was there a way to increase my fat burning during the fast?


An obvious answer to boost fat burning during a fast seemed to be exercise at the beginning of the fast. I started with just an hour of cardio the first time I tried cardio with fasting. The next time I fasted, I did the same hour long cardio session. I seemed to consistently lose an extra 1.5 pounds or so when I included an hour of cardio at the start of my fast. Keep in mind that this cardio is not intense. It’s just steady, easy cardio. I keep my heart rate in the fat-burning to just at cardio level, 100-140 bpm for me.

After a few times of doing this, I started to wonder how far I could push it and if I could control the amount of fat loss I had during a fast. I eventually got to where I could do four hours of cardio at the start of each fast. Doing four hours of cardio seemed to consistently help me lose 2.5 to 3 pounds during a fast. I don’t do four hours of cardio at the beginning of each fast mind you, but it was nice to know that it was possible for me to control my fat loss. Now I average 2-3 hours of cardio at the start of each of my fasts.


After many experiments, I believe I have found my optimal way of fasting. Each person will have their own way, but I felt like sharing my experiences might help others find a way to experiment themselves. For me, the best way I’ve found to fast is to have a 24-48 hour fast each week and to start that fast with a Bulletproof Coffee and 2-3 hours of cardio to boost fasting benefits.

Note: I only do BPC and cardio at the start of the fast. Afterward, I do not continue to do cardio throughout the fast. I tried this once and consequently ended up fainting. I do not recommend doing cardio or any other exercise throughout a fast. Please consult with your doctor before significantly changing your diet or exercise routine.

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Benefits of Intermittent Fasting for Charcot Marie Tooth

Benefits of Intermittent Fasting - Empty Plate

Intermittent fasting (IF) refers to various diets that cycle through defined periods of fasting and non-fasting. Generally, the periods of fasting are 24 hours or less. People usually refer to fasting longer than 24 hours as prolonged fasting.

Examples of Intermittent Fasting

  • Time-restricted Feeding (TRF)
    • 16/8 – Fast for 16 hours and eat in an 8 hour window each day.
    • 12/12 – Fast for 12 hours and eat in a 12 hour window each day.
  • Whole-day Fasting (WDF)
    • WDF – Fasting that involves regular periods of 24 hour fasts. Example: Fast for 24 hours once or twice a week.
    • Alternate Day Fasting (ADF) – Fasting for 24 hours every other day.

Benefits of Intermittent Fasting

There has been plenty of research in the last two decades about the benefits of intermittent fasting. In fact, Healthline has an article that lists evidence based benefits of IF with plenty of resources. Moreover, could IF have specific benefits for Charcot Marie Tooth? Researchers in Florida published a study in 2010 that explored the benefits of intermittent fasting in mice with Charcot Marie Tooth type 1A.

The study, “Intermittent fasting alleviates the neuropathic phenotype in a mouse model of Charcot-Marie-Tooth disease,” kept mice with CMT1A on a five month long IF regimen while monitoring their locomotor performance. The results of the study “indicate that dietary restriction is benificial for peripheral nerve function [..], as it promotes the maintenance of locomotor performance,” researchers concluded in the article. Before we can go into detail about the study, it’s best to understand the Schwann Cell and how it plays a role in CMT.

CMT and the Schwann Cell

The term Schwann cell refers to any of the cells in the peripheral nervous system that produce the myelin sheath around neuronal axons. Consequently, researchers believe the Schwann cell is thought to play a big role in the abnormal expression of the gene PMP22, the cause of CMT1A. Specifically, the altered processing and turnover rate of a mutated protein within Schwann cells. In simple terms, unhealthy Schwann cells produce unhealthy myelin sheaths. With this in mind, the study set out to discover if the biology of Schwann cells in mice with CMT1A could be improved somehow. Could Intermittent Fasting do the trick?

Intermittent Fasting for Healing

The study references a few articles that show how IF can help with neurodegenerative disease and protein degradation. One of the many benefits of IF is that it puts the body into survival mode, making it repair itself and normalize bodily functions. Therefore it makes sense that IF could potentially help normalize the biology of Schwann cells in patients with CMT. The researchers put that exact hypothesis to the test in this study.


The researchers put mice on a five month long IF regimen. There were four test groups: healthy mice fed normally, healthy mice on an IF regimen, CMT1A mice fed normally, and CMT1A mice on an IF regimen. The mice on an IF regimen were fed every other day, basically the Alternate-day Fasting technique. Over a two year period, the researchers performed this same experimental design three independent times with four to ten age-matched mice in each group. At the end of each trial, they collected the sciatic nerves from each mouse for biochemical and morphological studies. Here is a list of the tests performed:

  • Rotarod test
  • Grip strength test
  • Morphological studies
  • Primary antibodies
  • Biochemical analyses
  • Immunolabeling of nerve sections
  • Statistical analysis

The article itself goes into great detail about all these tests and the results. For the sake of readability, I will be omitting the description of these tests. Please refer to the materials and methods section of the article for more detail.


The results were promising. They showed that IF improves locomotor performance. Intermittent fasting enhanced myelin protein expression, meaning healthier, thicker myelin sheaths. The researchers also discovered that IF reduced the inflammatory aspects of neuropathy.

These results were clear. Intermittent fasting could benefit patients with Charcot Marie Tooth by improving the biology of Schwann cells, producing healthier myelin sheaths and reducing inflammatory aspects of neuropathy.


The benefits of Intermittent Fasting have been studied for decades, centuries even. Additionally, there is now research that shows specific benefits for Charcot Marie Tooth disease.

I have been practicing IF for several months now. I started even before reading this article. Intermittent Fasting seemed like it would inadvertently help with CMT symptoms, but I hadn’t thought that IF might have a direct impact on my disease. I have felt the benefits of IF ever since starting, and now I have solid research that explains why.

It is always a recommended to consult your doctor before altering your diet or exercise routine in any way, especially with a disease like CMT. Please do so before trying IF. That being said, I recommend patients with CMT look into this way of dieting.

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High Fat Diet Can Improve CMT1A, Study Suggests

High Fat Diet - Lab

Charcot Marie Tooth 1A is a gene mutation that causes less myelin production. Myelin coats the ends of nerves and helps with their conduction. Less myelin means less nerve conduction. Furthermore, less nerve conduction means muscle waste and atrophy over time.

The myelin sheath is mostly made of fat lipids, 80% or so actually. Consequently, phospholipids make up most of the myelin sheath. Does this mean a high fat diet, specifically one high in phospholipids, could improve CMT1A?

A new study, “Targeting myelin lipid metabolism as a potential therapeutic strategy in a model of CMT1A neuropathy,” was published in the journal Nature Communications. The study found that increasing the phospholipid intake in rats with CMT1A, a technique the study calls phospholipid therapy, had promising results of overcoming the myelin deficit caused by CMT1A.

The Problem

Researchers in Germany and Egypt studied the alterations in fat metabolism in rats with CMT1A. In over-simplified terms, the researchers found that the rats were producing phospholipids at a low rate, and therefore the composition of the myelin sheath was lacking in phospholipids. The study describes that there is a deficit in phospholipid production.

Among the phospholipids, the metabolism of phosphatidylcholine, a major myelin compound, was severely impaired at the transcriptional level in sciatic nerves of CMT1A rats.

Would it be possible to offset the deficit of phospholipids? Furthermore, would myelin sheath production utilize phospholipids produced outside of their body? The study aimed to find this out.

The Tested Treatment

In Vitro, Injected, Phospholipids

The next step was to test treating this phospholipid deficit. To do so, the researchers injected the rats with fluorescently labeled phosphatidylcholine. Finally, they observed that myelin production utilized the labeled phospholipids. As a result, they discovered the body can utilize phospholipids produced outside the body.

Dietary Supplementation of Phospholipids

After testing phospholipids through injection, the researchers wanted to test if the rats would utilize phospholipids supplemented through diet. The researchers describe how they enriched the experimental diets with phospholipids.

The experimental diets […] were enriched by either 0.3 or 3% soy bean-derived PL composed of 55% phosphatidylcholine and 20% phosphatidylethalonamine in addition to trace amounts of other lipids.

The researchers conducted thorough tests with varying levels of phospholipids. They were able to conclude that supplementation through food worked as well.

Study Conclusion

The study continues to detail different tests the researches conducted in order to discover if phospholipid supplementation was feasible. By the end of all their tests, they finally concluded that dietary lipid supplementation can be helpful.

In conclusion, we have identified perturbed lipid metabolism as a disease mechanism downstream of Pmp22 duplication in CMT1A, and found that dietary lipid supplementation acts as a downstream effector of Schwann cell function, which bypasses the inefficient expression of genes for lipid synthesis in Pmp22 transgenic Schwann cells. This improves myelin biosynthesis and the neuropathic phenotype of a CMT1A rat model, demonstrating that lipid supplementation should be considered as a new therapeutic approach to CMT1A disease.

Keto, a High Fat Diet

Ketosis has improved my life greatly. As a result of ketosis, I feel improved energy, little-to-no nerve pain, better muscle response, increased strength, and a myriad of other benefits. I can only assume that the healthy fats I am consuming are helping to mend my mitochondria as well as helping through the rest of my body. The body uses fat in many vital functions, including myelin sheath production. It only makes sense that providing your body with plenty of healthy fats is a good idea.

I’m feeding my body healthy fats already. However, I think I could improve results by increasing my intake of phospholipids. Due to reading this study, I plan on upping my phospholipid intake in hopes of having even better results with Keto.

Foods High in Phospholipids

  • Egg Yolks
  • Liver
  • Soy lecithin
  • Dairy
  • Fish
  • Peanuts
  • Sunflower seeds
  • Cabbage
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Different Types of Keto and Nutrition Importance for CMT

Different Types of Keto - Nutrition

There are different types of Keto, and a rainbow of types in between for each individual. It’s important that we get all of our daily nutrients, especially for those of us with Charcot Marie Tooth. I have tried a few different types of Keto since I started doing Keto. I plan to detail each that I have tried, my experience with that type, and which I have had the most success with and do now. Please keep in mind that this is my personal experience with these different types of Keto. Each person is different. You should consult your doctor and possibly a fitness and/or nutrition expert before significantly changing your diet in this way.

Different Types of Keto

Standard Keto Diet (SKD)

The SKD is a low-carb, moderate-protein, high-fat diet. Some would also say that the SKD is low-calorie, but this isn’t true. The Keto diet is only calorie restrictive if one is trying to lose weight. The Keto diet can be high-calorie if the person’s goal is to gain weight or muscle mass. The SKD macro profile typically consists of 75% fat, 20% protein and only 5% carbs.

My experience with the SKD was a good one. After starting with the Ideal Living Program at Avera, and with some guidance from my nutritionist, I slowly migrated over to the SKD. That makes it my first experience with Keto, and therefore how I fell in love with Keto. The SKD is definitely a good place to start! Remember to always do your own research and consult your doctor first, though.

Cyclical Keto Diet (CKD)

When a person follows CKD, they will have certain lengths of time where they consume high-carbs to reset their metabolism. For example, a CK dieter could do a month of Keto followed by a week of a high-carb diet and repeat.

I didn’t much like this type of Keto. Cycle weeks just dragged me down. I would feel great during Keto, and then I would feel tired and weak during the week of high-carb eating. It just didn’t seem worth it to me. CKD didn’t appeal to me. I didn’t miss bread, fruits, desserts, or other carb-heavy foods. With that said, someone else might find the CKD perfect for their lifestyle!

Targeted Keto Diet (TKD)

TKD is when the dieter consumes most of their carbs around workouts. The theory is that the carbs will give you a boost of energy for the workout and prevent your body from using any protein as an energy source, allowing the protein to be used for muscle growth.

TKD was an enjoyable way to do Keto. It allowed me to work in higher carb foods like berries into my diet. I would eat next to zero carbs for the day except for before a workout. Strawberries and blueberries were my favorite. A handful of these an a protein shake before a workout helped fuel me through the cardio and weight lifting.

High-protein Keto Diet

A high-protein Keto diet is exactly what the name implies: a SKD with more protein. An example macro profile for a high-protein keto diet would be 60% fat, 35% protein, and 5% carbs.

The high-protein Keto diet has obvious benefits for those that exercise and patients with Charcot Marie Tooth. With the extra protein, less muscle wasting tends to take place. There is some evidence that excessive protein can be dangerous. Dr. Mercola speaks of about excessive protein, and gives advice. There are studies that warn against excess protein intake, so be careful about how much you consume. With that said, a standard high-protein Keto diet is just fine as long as you keep in mind the maximum amount of protein you’re supposed to intake for your own body.

What Type to Follow?

Well, I’m obviously going to advise that you figure out which is best for you after consulting your doctor and a fitness and/or nutrition expert. Each person has different goals and a different body type. Please keep in mind that any Keto diet is a significant diet change from a Standard American Diet.

For me, a combination of the Targeted Keto Diet and the High-protein Keto Diet works best. I now have an intense exercise routine as well as Charcot Marie Tooth disease. In order to have to energy to workout everyday, I use the TKD method and eat carbs around the time I exercise. My goal is to not only build muscle, but to build muscle. I use the high-protein Keto diet and increase my protein percentage to gain muscle. To summarize, I follow the TKD with a macro profile of 60% fat, 35% protein, and 5% carbs.

Micronutrients and CMT

Micronutrients are very important as well, especially electrolytes. I haven’t found a study to backup this claim, so I’m just speaking personally: I’m very sensitive to electrolyte imbalances, and I blame my CMT. If I’m low on potassium and magnesium especially, I start to not feel OK. I have fainted before due to this. Please be sure that you’re getting the proper amount of sodium, potassium, and magnesium each day. It’s a lot more than one might think! I consume a lot of avocados and spinach, as well as using potassium enriched salt in my diet. Avocados and spinach are both great sources of potassium and magnesium.

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Exercise Routine for Someone with Charcot Marie Tooth

Exercise Routine - Weights

I cannot remember a time in my life before now that I had a regular exercise routine. After having over a dozen reconstructive surgeries on my feet during my early teenage years, my daily activity level plummeted. If I wasn’t working at a computer, I was reading articles or watching YouTube videos at one. This meant I was sitting for 90% or more of my day while barely moving. I gained weight, became overly lazy, felt fatigued throughout the day, and generally felt miserable. I had every excuse to be this way, though, right? After all, I had Charcot Marie Tooth and had endured countless surgeries on my feet.

All of that changed about a year ago when something snapped in me, and I decided to take charge of my health. I can’t really pinpoint exactly what it was. Maybe it was a feeling of coming to terms with my own mortality. I didn’t want to live half a life just because of laziness and use my disease as an excuse. I had to at least try, and I had to try longer than a week, longer than a month. It was time that I made a lifestyle change that I would continue throughout my life. It was time I started an exercise routine I could handle. To my surprise, even with Charcot Marie Tooth, I could handle a lot.

Next Steps Fitness Program

A local fitness center here in Sioux Falls, SD offers a program called the Next Steps Fitness Program. It is a medical fitness program that offers specific support for a myriad of ailments, such as: Cancer Fitness, Orthopedic Fitness, Diabetes Fitness, and many more. I cannot be more grateful for the team at the fitness center for getting me up to speed on physical fitness.

I chose the orthopedic fitness track, and a personal trainer worked with me to form a routine I could handle. The trainer taught me that I can do almost all workouts. I just needed help figuring out the form I needed to do while having fused joints in my feet. I learned a lot through the program at the fitness center, and now I have an exercise routine I can perform at home.

Home Exercise Routine

To exercise at home, I went the simple route and bought a very cheap, adjustable weight bench along with a few dumbbells. Everything together cost me less than $100. Once I had all the equipment, it was as simple as trial and error until I figured out a routine that my body could handle. I started out easy. I did half an hour of cardio every single day and about fifteen minutes of weight lifting afterward for 3-5 days out of the week. The weight lifting was simple then:

  • Wrist Curls
  • Arm Curls
  • Arm Extensions
  • Chest Press
  • Shoulder Press
  • Calf Raises
  • Squats

My routine evolved over time. I also started wanting more out of my exercise. I didn’t want to just look good. My goals had changed, and I wanted serious strength, a strong heart, and good posture. That last part was something I never thought I would have due to scoliosis, but I had to try something regardless of my condition.

Exercise for Posture

Straightening my posture has been something I have wanted to do for quite a long time, but I had assumed surgery was necessary. During all my research about exercise, I came to find many people with scoliosis and similar deformities were able to better their posture through routine exercise. Surely it could work for me if it could work for others. This is the exercise routine I perform every single morning to improve my posture:

  • Wall Slides
  • Prone Y’s
  • Shoulder Dislocations
  • Foam Roller Back Stretch

I perform these exercises every single morning as a warm-up before my cardio. My back strength has improved along with my posture, and I’m sure it will continue to improve as I continue these exercises.

Current Exercise Routine


  • Wall Slides, 3 sets of 10
  • Prone Y’s, 3 sets of 10
  • Shoulder Dislocations, 1 set of 20
  • Foam Roller Back Stretch, 2-5 minutes of 30 second intervals
  • Cardio, 2-4 hour bike ride

3-5 Days a Week

  • Wrist Curls, 3-4 sets of 15
  • Arm Curls, 3-4 sets of 10
  • Bent-over Row, 3-4 sets of 10
  • Shoulder Press, 3-4 sets of 10
  • Dumbbell Butterfly, 3-4 sets of 10
  • Chest Press, 3-4 sets of 10
  • Lat Pullover, 3-4 sets of 15
  • Arm Extension, 3-4 sets of 10
  • Calf Raises, 3-4 sets of 20
  • Squats, 3-4 sets of 10
  • Sit-ups, 3-4 sets of 20

I do this exercise routine while dealing with Charcot Marie Tooth and Scoliosis. I say this not to brag, but to emphasize that it is possible to improve your health and quality of life even with these ailments. The key is to push through and try longer than just a week. I have spells that last up to a month long where exercise feels dreadful, then suddenly I feel amazing and can exercise no problem for awhile. We all have our ups and downs, and we should allow our body time to adjust before judging whether something is possible or not.

With that said, I was very careful when starting out, and I didn’t increase weight to anything significant until I was comfortable with knowing my body. I highly suggest that anyone trying to exercise while having a disease like CMT consult with their doctor and maybe a fitness and/or nutrition expert first. Start out easy and slow, just as I did. Professional supervision is always a good idea as well, especially at first. Now, go exercise, and be careful!

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Ketosis and Charcot Marie Tooth

Ketosis - Avocado

Ketosis is the metabolic state in which the body burns fat as its primary source of fuel. Fat as a fuel is burned more efficiently by the body than carbs. Fat for Fuel by Dr. Josheph Mercola goes into detail about the benefits of fat and how diet can heal the body’s mitochondria. Does this mean ketosis could have a positive impact on Charcot Marie Tooth? This is the question I posed to myself before starting the ketogenic diet six months ago. I quickly learned that a healthy diet and ketosis do indeed have a positive impact on life with CMT. Ketosis targeted several symptoms of CMT.


Fatigue is a notorious symptom of Charcot Marie Tooth. Patients with CMT report being tired most of the time. I was no exception. Before following a ketogenic diet, I felt tired throughout the entire day, everyday. There were no exceptions, and things like caffeine only worked for a small amount of time before I was tired again. This haunting fatigue finally went away when I entered ketosis, and my energy only improved as my body became fat adapted.

The first day I entered ketosis, there was a noticeable difference in my energy. I woke up and didn’t feel groggy like I normally did. I got to work around the house the moment I woke up instead of dragging my feet. It was as if I was suddenly a morning person. It had to be ketosis. I tested my blood ketone level, and sure enough, I was in ketosis. From that day on, my energy improved as my body adjusted to its new energy source: fat.


Surprisingly, some of my pain was taken care of. I don’t want to get anyone’s hopes up by making them think all of my pain was taken care of with ketosis. I can only assume that some of my pain was caused by inflammation throughout my body, because I noticed a significant amount of overall pain had gone away after a few days of being in ketosis. Carbs are known to cause inflammation in the body.

Muscle Weakness

Muscle weakness is common in patients with Charcot Marie Tooth. This feeling of weakness isn’t just normal muscle weakness. It’s a specific feeling where muscles feel much weaker than they should. One day I could feel strong just like I’m a normal person without CMT, then the next my muscles feel half as strong or even worse. From my experience, being in ketosis has made this feeling of weakness scarce. I’m able to feel consistent strength for longer periods of time. Instead of only being able to do five repetitions on my bad days, I’m able to do a full set of 10 repetitions while I’m in ketosis, regardless of a bad or good day.

Muscle Wasting and Atrophy

Due to not feeling weakness as often and being able to exercise much more, I can only assume that my muscle wasting and atrophy have slowed. I’m not trying to write, nor am I implying that ketosis will stop muscle wasting and atrophy, or that ketosis even has a direct impact. I’m merely saying that because ketosis provides better energy and strength, I’m able to exercise more often and for longer lengths of time. I believe this means I will be building and retaining muscle longer than I would have if I hadn’t stayed in ketosis.

Poor Tolerance to Cold Temperatures

In my experience, my poor tolerance to cold temperatures was due to poor circulation. Due to low energy and inactivity, my body had grown accustomed to moving blood at a slow rate. I had a low resting heart rate, around 50 bpm or lower, and I was almost always cold. Having a resting heart rate of 50 bpm isn’t necessarily bad, but it’s not really a good sign when you aren’t an athlete.

Once I entered ketosis and became much more active in life, my poor tolerance to cold temperatures went away within a few weeks. My resting heart rate is still around the same, but my heart beats with more strength and moves more blood. My extremities no longer turn into ice blocks in the night. Both my hands and feet stay warm throughout the night. I thank ketosis for the energy it delivers in order to achieve good blood circulation.


As you can see, ketosis can directly and indirectly target symptoms of Charcot Marie Tooth. Fat burns more efficiently than carbohydrates. It’s also readily available throughout the body, so you have a steady energy source throughout the day. This takes care of fatigue. Without fatigue, I’m able to exercise more and be active throughout the entire day. This address muscle weakness, wasting, and atrophy. Stronger muscles and a stronger heart means better circulation throughout the body. This means ketosis indirectly helps keep me warm in cold temperatures.

I’m quite satisfied with my new lifestyle. I don’t see myself switching from the ketogenic diet in the foreseeable future. There are just too many health benefits for someone like me.

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Bulletproof Coffee for Thirty Days and Beyond

GMM Bulletproof Coffee

At first glance, Bulletproof Coffee (BPC) didn’t seem groundbreaking to me. I was skeptical to say the least. Fat and caffeine? Surely it was just a placebo effect. I was already feeling energy gains from ketosis. Could I really boost the benefits of ketosis with a BPC every morning? I did what I always do and started down a long road of research.

History of Caffeine and Fat

Turns out that caffeine mixed with fat is nothing new. Humans in 9th Century Ethiopia would mix coffee beans with animal fat before coffee was even used as a drink. The mixture was given to warriors before battle to boost energy. Tibetan Butter Tea, or Yak Butter Tea, is very similar to Bulletproof Coffee and has been consumed for centuries by Tibetans to increase their energy in the high altitudes. The more I looked into the history, the more it seemed that humans discovered the benefits of caffeine and fat a long time ago. Somehow the Western world had lost or never adopted this tradition.

Standard Bulletproof Coffee Recipe

  • 8 oz Coffee
  • 1 tbsp Grass-Fed Butter
  • 1 tsp – 1 tbsp MCT Oil or Coconut Oil

This is the standard recipe for most Bulletproof Coffee lovers. I personally add protein powder to my BPC.

My Bulletproof Coffee Recipe

When I feel like having a sweet coffee, I use the Isopure Cookies & Cream Protein Powder. It makes the Bulletproof Coffee taste like hot chocolate! I use Bulletproof Brain Octane MCT Oil and Collagen Protein Powder simply because of their proven quality.

First Week

There were a few things I noticed when I drank my first Bulletproof Coffee. I immediately felt energetic, and more so than if I had just drank a cup of regular coffee. The higher boost to energy might have been a placebo effect, but the sating property of the beverage was not. I felt full. Full enough that I didn’t need to eat until hours later when I had a late lunch. All that fat really did work to fill me up. I assume the fat also helped to sustain the energy, because I felt the energy throughout the entire day.

Even with all the benefits, there was a negative that made me question whether I could continue drinking BPC. Drinking a BPC heightened my energy so much that it also heightened my anxiety. I even had a panic attack so strong that I ended up in the hospital. I don’t give up that easily, and I was determined to find the exact reason my anxiety was being triggered by BPC. After doing some research, I discovered MCT Oil was likely the culprit. I detail how I made my discovery in my Anxiety and MCT Oil post. Once I discovered what the issue was, it was fairly easy to tweak my dosage and solve the problem.

Rest of the Month

The following weeks were fine. My anxiety was rarely triggered, and I was able to control the anxiety if it ever was triggered. Over the next few weeks, I grew to love Bulletproof Coffee. The steady energy boost that it provides aids in mental clarity and focus. I have yet to grow any sort of tolerance. Each day that I consume a BPC, I feel the same mental boost.


Even with the panic attacks and heightened anxiety, the benefits of consuming a Bulletproof Coffee held too much weight. The benefits of energy, focus, and mental clarity motivated me to find a way to keep consuming BPC every morning. After my experiments, I’m able to continue with BPC, and I will continue for the foreseeable future.