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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: mitochondria

Nutrition Information Sources

Day by Day with a Movement Disorder Posted on December 14, 2017 by DBDecember 18, 2017  

Energy Blueprint

We have been working on improving our diet and supplement choices for some years now. My Type II Diabetes diagnosis started us on the journey to more healthy eating. And hubby has been more interested in making improvements since his triple bypass heart surgery. We’ve been following The Energy Blueprint* protocol for about six months with considerable success. There are many strategies in the program that help to increase mitochondrial function. The program contains tons of good nutrition information. And it does not limit a person to eating one particular dietary lifestyle. So we were able to take what we were already eating and just improve it a bit.

We have lived in the South all our lives, but we certainly don’t eat “Southern”.  We have upped our serving of raw greens and other healthy raw veggies and fermented foods. Today we grated turmeric root into our huge lunch salad, a new experience for us. I had no idea what it was going to taste like and was pleasantly surprised it was not “weird” – maybe like a cross between a radish and a carrot??

Examine.com

Another source I recently found for reliable information about supplements and nutrition is Examine.com*. They do NOT sell any supplements, but they do sell a reasonably priced pdf encyclopedia of Supplements, plus some other materials. You can search the encyclopedia by supplement and by health concern. Each supplement has a graph showing results of medical research using that supplement to treat various health problems. I’m finding it extremely useful. And they keep the encyclopedia updated with results from current medical journal studies. There are also lots of free articles, such as this one on Super Foods, and if you open an account with them you will get informative emails.

We continue to learn ways to improve my health and my hubby’s. We may be in our 70’s, but we want to be as healthy as we possibly can. We’ve seen first hand the devastation of dementia while we were caregivers for our parents, and we want to do everything we can to enjoy a high quality of life as long as we can.

Nutrition Information

I could only wish that we had been this health conscious many years ago. But I thank God that hubby found The Energy Blueprint* program and we took the leap of faith to buy it. It has certainly been money well spent. And I’m glad I found Examine.com*. We continue to use the internet to learn as much as we can. And I plan to continue sharing sources of nutrition information with you. Hopefully something I write encourages you to improve your own lifestyle.

 

Posted in Nutrition | Tagged energy, examine.com, mitochondria, nutrition, Quality of Life, supplements, The Energy Blueprint | Leave a reply

Lifestyle Changes = Feeling Great

Day by Day with a Movement Disorder Posted on October 5, 2017 by DBDecember 2, 2017 8

I’ve made a lot of lifestyle changes over the last few months, and I’m feeling better than I have in years.

Exercising Again

As part of the changes I’ve been making, based on The Energy Blueprint Program*, I’ve gradually increased my activity level over the last few months. I can now walk briskly around the perimeter of our yard four times – maybe 1600 feet. When I started, walking 50 feet wore me out. Hubby and I have used Handicap stickers for years, and we’ve always needed them. With his paralyzed leg, hubby still needs his. Me…. not so much. THAT’s a huge improvement for me.

I’ve also found online a Qigong program that suits me, called the Satori Method Flow Form. The Sensei teaches a Westernized version of the Asian practice. And he’s a good teacher. I used to do Tai Chi regularly. But I quit practicing it as I got weaker, and eventually I forgot how to do the forms. This time, I had a lot of tension from the high powered steroids I was on after surgery. I was considering getting a series of massages as a way to relax and stop the insomnia.  Buying this program seemed to be a better use of the money to me. And I’m glad I did.

I’m still learning how to do this method, but the downloaded lessons are well done and only cover a few moves at a time. Plus there is a practice video for each section. That way I can work on the forms a little at a time and then try to follow as the pieces are put together. The squatting leg movements have done a lot to strengthen my legs, but I still have a long way to go before I can practice for 30 minutes without being worn slap out. But even though I’m tired, and even a little sweaty by the time I stop, I’m very relaxed.

Nutrition Improved

Ari Whitten, the originator of the Energy Blueprint, does not advocate any particular diet style, other than to emphasize a Whole Food Plant Based diet, preferably organic. He leaves the choice to eat meat or not up to the individual, but really does emphasize that any meat needs to be grass fed and hormone free. We haven’t made the change to organic yet. He really emphasizes eating large numbers of raw vegetables and fruits, so we’ve greatly increased the size of our usual lunchtime salad. I’m also eating something fermented at every meal. I’ve even learned how to make kefir and sauerkraut, and I add home grown broccoli sprouts to every meal as well – even breakfast!

Mitochondrial Energy Increased

Energy Blueprint explains many scientifically researched strategies that directly increase the energy level that the mitochondria create in the cells. I’ve consistently been sunbathing since learning that this will increase my energy without having to eat more calories. And I can definitely testify that it is working for me.

Since sunbathing will be out of the question once the cold weather comes to Alabama, I have also made a home-made version of an infra-red sauna in our bathroom. I Googled DIY sauna to come up with something that works for me. I can use this regardless of the weather or season.

Since I have had cold intolerance for many years now – a common symptom of Mitochondrial Disease – the heat feels fantastic. And it’s been so long since I could sweat, I know that’s helping me heal. Hopefully I’m getting rid of some toxins that are released in sweat, but don’t leave the body any other way.

Lifestyle Changes Making a Noticeable Difference

A lot of people at church have been asking me lately how I feel. I think it’s because my tan makes me look healthier, and I’m walking so much better! It’s wonderful to be able to say I’m feeling better than I have in years!

Thanks be to God for his Healing Hand in leading me to the right surgeon to deal with my serious sinus infection and bone overgrowth. And we thank Him for making us aware of the Energy Blueprint Program. Because of that program I’ve made a lot of positive lifestyle changes. I plan to continue gradually making changes the program suggests to improve my mitochondrial function. The reward of feeling so good makes the new lifestyle changes worthwhile, even though it means changing habits of a lifetime!

 

 

Posted in Quality of Life | Tagged energy, exercise, mitochondria, nutrition, qigong, Satori Method Flow Form, The Energy Blueprint, whole food plant based diet | 8 Replies

IMPROVING!

Day by Day with a Movement Disorder Posted on September 16, 2017 by DBDecember 2, 2017  

Improving a LOT

I’m really improving, and it’s only been six weeks since my skull base surgery! I saw my own ENT this week to have more debriding done to remove crusting in the nose and sinuses. This was at the direction of my surgeon. As usual, it did not feel good, even though he used a numbing material in my nostrils. And I took a muscle relaxer ahead of time, attempting to keep my neck from such painful spasms afterwards. I did have neck pain, but it was nothing like the last time at the surgeon’s office.  That’s when he removed the splints in the frontal sinuses that he completely re-designed. (I now have one large cavity above my eyebrows, rather than two separate ones with bone in between.)

Energy Improving

I started a few weeks before surgery to increase how much I walked, and I also started a new program that is supposed to improve Mitochondrial energy. Hubby found the program, and we watched the free introductory videos. It appeared to be compatible with everything I had learned on my own about how the mitochondria work. We prayed about it and talked a lot about it. So we decided to take a leap of faith that this program would help me. And we bought the program. I was assured before purchasing that I could get a full refund if I decided my Mitochondrial Myopathy had not shown improvement with the lifestyle changes that were being recommended.

The Energy Blueprint

So I have now been studying and using for the last two months many of the Energy Blueprint* program strategies. It’s all explained by Ari Whitten in great detail in video modules, summary documents, podcasts, and information on a private Facebook group. And I can say without a doubt that I do NOT want my money back! I feel more energetic than I have in years. I am sure a lot of that is due to finally getting rid of the inflammation in my sinuses. But I credit the Energy Blueprint diet and lifestyle changes I have made to improving so fast after surgery. My sinuses are a long way from being healed, but everything is progressing as it should. And that certainly did NOT happen with my first sinus surgery two years ago, when the bone overgrowth first began.

It takes at least two months to watch everything in the Energy Blueprint program and even begin to implement the lifestyle changes. Ari does a good job of offering many strategies, understanding that no one would be able to do all of his suggestions at once. I’ll probably be making lifestyle changes for at least a couple of years to even come close to using every suggestion that is appropriate for me. He always spends time explaining which strategies are more suitable for people with Chronic Fatigue Syndrome and similar fatigue causing diseases. So I feel comfortable going slowly and building up very gradually.

Sunbathing??

For instance, Ari goes into great detail to explain the science of how the sun can increase the energy in the mitochondria. I had never before read that the sun had anything to do with my energy level. So this 74 year old lady started sunbathing at noon, no less, after years of wearing a long sleeve fleece jacket outside, even in the summer. At first I turned over like a rotisserie chicken, staying maybe two minutes total. Because I have cold intolerance, the 100 degree days at noon in the Alabama sun felt good to me.

But I was terrified that I would burn. As I have approached all the changes I’ve made with this program, I increased time to my sunbathing routine extremely gradually. Now I stay on each side for about ten minutes. For the first time I can ever remember – I am beginning to tan – I even have some tan lines! And yes, I can tell I am feeling more energetic, without having to get all my energy supply from food calories. I’m actually losing weight, even though I am eating a huge amount of fresh greens – much of it raw.

If I’ve said anything that peaks your interest in increasing your energy level and improving your health, you can learn more about The Energy Blueprint and about Ari Whitten HERE. There are several free videos you can watch to decide if this is something you would want to try. The course is not cheap, by any means, but I am convinced it was the right decision for me. If you decide to buy the course, I’d appreciate you using my affiliate link* for your purchase. But that’s definitely not necessary, if you don’t feel comfortable doing that.

Thankful!!

I am very thankful that we made the leap of faith to buy The Energy Blueprint program. I am thankful to God for leading us to this course. And I’m thankful to Him for how much I am improving at this point after surgery. I look forward to all the positive changes I will see over the next few years! And I’ll be writing from time to time about some of the Energy Blueprint lifestyle changes I’m making to improve my health and energy.

Posted in Quality of Life | Tagged energy, exercise, fatigue, mitochondria, Quality of Life, recovery, The Energy Blueprint | Leave a reply

3 Parent DNA in the News

Day by Day with a Movement Disorder Posted on September 30, 2016 by DBOctober 17, 2016  

You may have seen the news stories about a baby boy born this year with 3 parent DNA. If you’re interested, it’s easy to find with a Google Search for “3 parent dna”. This form of artificial conception is legal at this time only in the UK. So the American doctor who performed this procedure went to Mexico, where rules are evidently more lax.

2 Kinds of DNA

The human egg cell from the Mom has two distinctly different kinds of DNA. The DNA in the nucleus carries all those characteristics we associate with family, like hair color, ethnicity, stature, etc. The other kind of DNA is NOT in the nucleus. This DNA is in the mitochondria organelles found in each cell, including the mother’s egg cell. The Mitochondria are responsible for converting our food into the energy each cell needs to function properly.

We ALL have some level of damaged nuclear and mitochondrial DNA. Mutations occur naturally over many generations of procreation. Over our lifetime, we eat unhealthy foods and take chemicals into our body intentionally and unintentionally. We are assaulted by various viruses and bacteria. The older we get the more faulty DNA we have.

The mother in this news story had already miscarried 6 times and had carried 2 babies to full term. But they were not healthy babies, and both died very young. They had Leigh’s Disease, which is caused by faulty mitochondrial DNA passed from the mother to her babies.

Mitochondrial DNA is passed from mother to child. The baby does NOT receive any mitochondrial DNA from the father.

So, they harvested egg cells from the mother and fertilized the eggs with the father’s sperm. Many people who cannot conceive naturally go through in vitro fertilization. So that’s not that unusual.

How it Was Done

What made this conception so ground breaking is what they did BEFORE they fertilized the egg with the father’s sperm. They literally took the Mom’s nucleus out of her egg cell and put her nucleus into another woman’s egg cell. This prevented the mother’s defective mitochondria from being passed on to her baby. And then they implanted the fertilized embryo into the mother’s womb.

The baby boy has all the genetic characteristics of his Mama and Daddy, except the donated mitochondria work the way they should.

Controversy

Obviously this little boy’s health is going to be followed by the medical community – probably for his whole life. And just as certain will be a debate on whether this doctor should have performed this procedure without sanction from the medical community.

Having miscarried and having trouble even getting pregnant myself, I now suspect my own mitochondrial disease contributed to our difficulty conceiving. Let the medical community and legal authorities deal with the ethics, research methods, and legality of this 3 parent DNA conception.

I can only pray that this little boy will grow up to be a healthy young man.

Posted in MITO | Tagged DNA, energy, Michondrial Disease, MITO, mitochondria | Leave a reply

Continuing with the LCHF Lifestyle

Day by Day with a Movement Disorder Posted on February 2, 2014 by DBMay 8, 2016 7

I’ve spent the last month gradually changing over to eating on the Low Carb High Fat (LCHF) lifestyle. I say lifestyle, not only because it’s such a drastic change from what we’ve all been told was best for us, but because it’s not really a weight loss diet. And that’s what everyone thinks if you say you’re on a diet.

Anyway, I was well on my way to eating this way already, since I’m diabetic. So it’s probably not been as hard for me as it would most people. But it’s still been quite an adjustment to stop eating ALL grains, beans, and below ground vegetables.

I have enjoyed eating all the eggs! And they have naturally the right percentage of fat, carb, and protein. Other diets, such as Atkins, replace the carbs with more protein. But this diet replaces all the carbs with fat calories. And I can state categorically – I’m not hungry!!

There are lots of possibilities as far as what I could be eating, but here’s a general idea of what a day is like for me now. Breakfast is 1/4 cup of nut pieces, a tablespoon of flax meal, and a cup of almond or coconut milk. I eat it as if it were cereal, and that keeps me going just fine until lunch.

Lunch at home is what it’s always been (since I was diagnosed with Type II Diabetes). Hubby cooks a stir fry of vegetables in olive oil, often with ham. He still eats whole grain bread with it, but I don’t.

Afternoon snack is usually half of an avocado or something called a chocolate Fat Bomb. It’s a homemade chocolate candy that is basically unsweetened cocoa, butter, and coconut oil.

I’m keeping track of my food intake on http://www.myfitnesspal.com, so I can tell how many calories I have left for the day. I do hope to lose some belly fat on this diet, so I’ve set a calorie limit for myself. And I need to learn how to keep the protein and carb intake low and the fat count high, so tracking my nutrition is helpful. Once I see where I stand nutrition wise, I decide how many eggs I can have for supper and whether I can add cheese, spinach, and/or mushrooms.

It’s really weird. I’ve not craved any sweets I was used to eating, like ice cream on Sundays. I do miss the great sandwiches chock full of veggies that hubby used to fix me for dinner, but I can still have them as a salad.

I found an easy to fix coconut flour and egg bread substitute that cooks in the microwave. I make that when I’m craving bread.

Eating out has been the hardest to adjust to, and we eat out several times a week on average. But again, I was already used to finding suitable foods in restaurants, because of the diabetic restrictions, and that helped. So far I’ve been able to stick to the ketogenic diet pretty well.

And the Ketostix test strips I use show that I am in Ketosis. That’s the secret to this lifestyle. The goal is to change the cells over to using ketones for energy, instead of carbs. Mitochondria use ketones more efficiently than they do glucose, which is supposed to increase my energy level. It has definitely done that. There’s no difference in pain level yet, and as long as I stay on the pain meds I may not see an improvement in the brain fog, but I’m still optimistic about that improving in the future.

As I see my energy level increase it gives me reason to continue with this lifestyle, with the hope that the brain fog will lift, and the improved mitochondrial activity will lessen my muscle pain. Only time and patience will tell.

Posted in Nutrition, Type II Diabetes | Tagged diabetes, fat bomb, high fat, intake diary, Ketogenic, ketones, ketosis, LCHF, low carbohydrates, mitochondria, nutrition | 7 Replies

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