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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: low carbohydrates

Still on LCHF Lifestyle – Still Dealing with MITO

Day by Day with a Movement Disorder Posted on February 23, 2014 by DBMay 8, 2016 2

I’m continuing on with the Low Carb High Fat lifestyle and finding it very easy now to comply with the no grain, no below ground vegetables, and no legumes or beans other than green beans.

I’m using an easy to make dessert that satisfies my chocolate craving and a no wheat egg bread recipe that cooks in the microwave oven in less than 2 minutes. Those two recipes alone are probably responsible for keeping me on this diet.

My eyes are better, but still not back to normal. My eye doctor really doesn’t think the change in diet is at fault, as tears are made of lipids (fats), and I’m certainly getting plenty of good Medium Chain Triglycerides in the Coconut Oil I consume daily.

He would normally prescribe steroid drops at this point, or Restasis. But we’re both reluctant to do that, because of my Mitochondrial Myopathy. So he’s recommended hot compresses twice a day and massaging the lids with a water and baby shampoo solution. The hope is that my tear glands will start producing more tears due to the stimulation.

I am losing weight for sure, and I’ve only felt hunger a few times since I started this diet in earnest in mid January. The first couple of weeks in January were spent gradually changing over and using up the food that was already in the house.

The digestion issues resolved themselves, as I had hoped they would. I do take MiraLax every morning, but I’ve been doing that for many years. My digestive system muscles are weaker than normal, thanks to the MITO, so dealing with constipation is par for the course.

I did have an upsetting situation develop in church today. We’re having some kind of short in our sound system that has caused me to go into Myoclonic jerks the last few weeks. But it seemed like today there were more sudden high squeaks from the organ and more crackling sounds out of nowhere that just set me off. By the time the service was ending I was in full Myoclonus and crying. Everyone nearby came to find out if I was OK, but all I could tell them was that I was OK, but the genetic disorder I have makes me have a hyper startle reflex.

I really appreciate their concern, but it embarrasses me when I go into one of these “fits”. The more I try to stop the jerking, the worse they get. I just have to find a way to relax and wait them out. It’s been some time since I had this much trouble with the jerking, but the constant pain I’ve been in for months now probably contributes to my tolerance level for unexpected noise being way down low.

So I continue to have muscle issues and other odd problems caused or exacerbated by MITO, but I’m also working hard to find the right combination of diet and activity to maximize my quality of life. I have been reading every book on nutrition I can get my hands on for several years now and continue to do so. And I’m currently going to physical therapy twice a week, hoping to strengthen the muscles in my neck, back, and shoulders and alleviate my pain.

Posted in MITO, Nutrition | Tagged coconut oil, constipation, high fat, LCHF, low carbohydrates, MCT, medium chain triglycerides, Miralax, MITO, Mitochondrial Myopathy, myoclonus, nutrition, pain, Physical Therapy, startle reflex | 2 Replies

Irritated Eyes and Digestive System – UGH

Day by Day with a Movement Disorder Posted on February 6, 2014 by DBMay 8, 2016  

I’ve been dealing with eye issues for the last few weeks. I figured it was just allergies, as I’ve had a runny nose, too, but I obviously didn’t have a cold. Lots of itchiness and feeling like I had an eyelash in my eye, and it was progressively getting worse. I reached a point where being in sunlight or in bright lights was very painful.

So off to the eye doctor I went, reluctantly, but I really didn’t have a choice. Turns out it was a bacterial infection, and he put me on antibiotic and steroid eye drops.

I was still very uncomfortable, even after I finished the bottle, so we went back to the doctor. I have a history of dry eye syndrome, so this time he plugged the lower tear duct holes with lachrymal implants. The purpose of these is to keep the tears from evaporating off the eyeball so quickly.

Thanks to my Mitochondrial Myopathy, we both agreed that the implants were a better choice than Restasis, the usual drug prescribed for this issue. The fewer toxins I put in my body the better. He had tried the implants some years ago, but they came out. At least they got me through the allergy season that had me irritated at that time. I’m hoping for the same good outcome this time.

I’ve also had constipation problems ever since we were stuck in a hotel for two days after a harrowing two plus hour drive to get out of the unexpectedly heavy snow storm that hit the South last week. I shouldn’t be surprised, considering both of our stress levels had to have gone through the roof while we crept along that three miles to the hotel.

We weren’t able to eat what we normally would either, which I’m sure just added to the problem. But the reason I bother to mention this is the new LCHF diet I’m on makes me wonder if the constipation was more due to stress or to the drastic change in what I eat, particularly the huge increase in my fat intake. Time will tell whether it’s diet related, or just a blip caused by such an unusual week.

I know how to deal with the constipation, as that has been a recurring problem for many years. One of the ways my Mitochondrial Myopathy presents itself is a slow digestive process, called gastroparesis. But not being able to read for any length of time or work on the computer is bothering me greatly.

I pray that the implants stay in long enough to improve the quality of my tear production and heal my irritated eyeballs. And I hope the constipation problem was temporary and not caused by the LCHF lifestyle I’m trying very hard to live.

Posted in MITO | Tagged allergies, constipation, gastroparesis, high fat, lachrymal implants, LCHF, low carbohydrates, Mitochondrial Myopathy, Restasis | 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

Still Improving

Day by Day with a Movement Disorder Posted on January 4, 2010 by DBMay 19, 2016  

Well, the Christmas and New Year’s holidays are over, and things are about to get back to “normal” around here. I made it through all the holiday foods without upsetting my stomach again, and I’ve finished the round of antibiotics. So I really can tell that I’m still improving.

I’ve stopped taking the Reglan and also the Nortriptyline for now. One of them was giving me horrible nightmares, and I haven’t gotten back to my usual sleep pattern yet. The Reglan is not to be taken long term anyway, as it can cause Dyskinesia, and I sure don’t want that! I plan to ask the doctor why he put me on the Nortiptyline, since it’s an anti-depressant. So many of these meds have off label uses, that I don’t want to just stop it completely without knowing why I was taking it.

I still am taking the Carafate an hour before meals and at bedtime, and I won’t go back to the supplements and vitamins I normally take until I stop that. It was just too hard trying to schedule all those extra pills and have my stomach empty for the Carafate.

I even managed to lose another pound during the holidays!! That surprised me, because I allowed myself to enjoy meals with family without concern for glucose readings or calories. I guess my stomach has shrunk, plus my eating habits have changed considerably since April 1, 2009, when I started dieting in earnest.

I am now trying to build back my exercise routine. I did Tai Chi yesterday morning for the first time in I can’t remember when, and I used the treadmill for 3 whole minutes. I know that doesn’t sound like much, but it’s an inexpensive manual one that only has the one incline setting, and walking on it for 2 minutes at a time has been all I could muster, until yesterday. I’m such a weakling! LOL

I never have been much for New Year’s Resolutions, but I guess mine needs to be to get back on a regular exercise routine and stick to it. I’ve lost enough weight now that I’m really in need of some toning up. I don’t know if this old body can recuperate from the baggy skin, but I need to try, at least. And I certainly do need to improve my stamina.

I didn’t do a very good job of testing my glucose levels regularly during the holidays. My results page has lots of empty spots in it. It seemed like every day I would either forget to take it, or we would be out of our normal routine, and I couldn’t take it at the right time. We went to see a lot of movies over the last couple of weeks, and I couldn’t take it then. The rest of the times were just negligence on my part.

My Diabetes doctor said I was doing fine and not to be so concerned about the high readings, and I think I’ve succeeded in not stressing over them to the point that now I’m not diligent any more. It’s always hard for me to find balance, and this is just another example. I’ll try to do better in January. I see him at the end of the month, and I guess he’ll do another A1C then. That will tell the tale, for sure, from my holiday laxness. I’m growing more and more confident that my weight loss will eventually get me out of the diabetic range. I know that’s my goal for April, 2010. I expect to have lost 50 pounds by then, and no longer be diabetic.

At my heaviest ever in March, ’09, I weighed 182, and I’m down to 142 now. So I’ve come a long way. I’m totally motivated to get the rest of the 12 pounds off that I set as my goal, and who knows, maybe I’ll lose a few more than that! I know I couldn’t have done it without keeping track of my calories and carb intake daily. There again, the test will be whether I can achieve a balance of right eating without having to count calories when I’m down to 130. I’ll have to watch the scales pretty carefully to keep from gaining it back!

Sounds like I do have some New Year’s Resolutions after all! And I’m sure I join lots of others who plan to eat more healthy foods, exercise, and lose weight this year. I look forward to twenty ten as being a good, healthy year for me!!!!!

Posted in Quality of Life | Tagged blood glucose, diabetes, diet, exercise, insomnia, low carbohydrates, off label, prescriptions, Quality of Life, stomach, Tai Chi | Leave a reply

Blood Sugar Aggravation Grrrrrrrrrrrrrrr!

Day by Day with a Movement Disorder Posted on June 30, 2009 by DBMay 21, 2016 2

Constant aggravation is how I’m feeling these days. There have been way too many days this month when my blood glucose level was higher than my doctor wants it to be, and with only a few obvious exceptions, I have absolutely no idea why.

I was scheduled for an appointment with him at the end of July, but I changed the appointment to this week.

I’m trying to read through the Atkins book for Diabetics, but it’s very detailed and is slow reading. It’s extremely well written, but I am taking it in in small increments. I’ve read quite a bit of what is presented from other sources, but this book seems to put all the puzzle pieces together quite well. I’m really not finding anything that I am currently doing incorrectly, so I don’t understand why I still keep getting so many high readings.

My biggest problem with reading something this involved is that I keep falling asleep. I plan to ask my Diabetic doctor if one of the meds he put me on causes daytime sleepiness, because that has been a real problem for me for some time now. I’m sleeping soundly all night long now, so it’s not because of insomnia that I’m falling asleep so easily. I feel like I need to apologize to our preacher, as I nod off during almost every sermon! LOL!!

I’ve been trying to “get a life”, too, and not spending as much time on the computer. There’s this book that I’m very interested in learning as much as possible from, plus we are both trying to learn how to sing Sacred Harp shape note music. And I’ve gone back to working Sudoku puzzles, as I felt my brain needed more stimulation. Now that the television is all digital we have lost some of the stations we used to watch, so we have more time for other endeavors.

I continue to lose weight slowly but surely, and it’s beginning to show up with clothes that are too loose. That’s encouraging. At the rate I’m going I could possibly lose 50 pounds by the end of this year! I’m doing pretty well at resisting sweets, enjoying fruit instead. And we continue to emphasize low carbohydrates in our diet where possible. Hubby’s losing weight, too!

So, I’ll continue to read my book, exercise daily, and watch what I eat. Hopefully he can tell me what else I need to do to stop all the high test readings and possibly make a prescription change that will help me stay awake.

Posted in Type II Diabetes | Tagged Atkins, brain fog, low carbohydrates, Sacred Harp, sleepiness, Sudoku, weight loss | 2 Replies

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