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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: Coenzyme Q10

Co-Enzyme Q10, Ubiquinone, Ubiquinol

Day by Day with a Movement Disorder Posted on July 15, 2012 by DBMay 8, 2016 2

I’ve spent a great deal of time during the last year doing research on vitamins, minerals, enzymes,  cofactors, foods, and herbs that promote the best possible energy production in the mitochondria of our cells. So I figure it’s time to try to pull together some of what I’ve learned.

You don’t have to have a Mitochondrial Disease to reap the benefits of proper nutrition. Whether you are trying to improve or maintain your health, I hope you’ll find some of this information to be useful. But of course I am not a medical professional, so I can only tell you about what I’ve read and tried.

Since I have been gradually adding a wide variety of supplements, it’s hard to decide how much of my improvement can be attributed to any given effort, but so far I’ve not stopped taking most of what I’ve tried.

I’ve chosen to start this series of posts with information about Co-Q10, because that’s the only supplement that was suggested to us by the UAB specialist who diagnosed my Mitochondrial Myopathy. I was told at that time that it might help, but there is no known treatment and no known cure for this disease.

Almost immediately I started working up to an 800mg dose of CoQ10 spread over the day. Because I have a tendency toward insomnia, and I had read that taking CoQ10 late in the day could cause sleep issues, I decided to be finished with the CoQ10 with my afternoon snack. From what I have read it can take several months of use before a person can tell any difference. I seemed to be a little stronger within about a month of starting it. And I’m certainly stronger now than I was in October, 2010.

WebMD is a good place to get simply written information concerning medical issues, so read more about Coenzyme Q10 here. It is a vitamin like fat soluble substance. CoQ10 is a key ingredient in the chain of chemical reactions within the mitochondria in our cells. This process generates 95% of the human body’s energy.

It is also an extremely powerful antioxidant. Antioxidants are needed because all the natural processes that are constantly going on in the body produce free radicals. And we eat, breathe, and come in contact with a world full of chemicals that release free radicals into our bodies. Left un-neutralized by antioxidants, these free radicals can cause genetic mutations that can lead to serious diseases such as Diabetes, Parkinson’s, and Cancer.

The cells can’t directly use CoQ10 in the less expensive version, which is ubiquinone. But normally humans can easily convert the ubiquinone into the ubiquinol form that the cells can use.

But I’m far from normal when it comes to the way my Mitochondria function, or should I say fail to function. So I decided it made more sense for me to take the more expensive Ubiquinol form, which is not supposed to require as high a dose to receive the same benefit, as it’s immediately available to the Mitochondria. I’m currently taking 600mg Ubiquinol, still taking the last dose in the afternoon.

From Fibromyalgia to Heart Disease, there’s a long list of diseases and disorders for which taking CoQ10 might be beneficial. I hope you find this post to be useful, and I look forward to reading your comments.

Posted in MITO, Nutrition | Tagged anti-oxidant, Coenzyme Q10, energy, Mitochondrial Myopathy, nutrition, supplements, Ubiquinone. Ubiquinol | 2 Replies

Very Busy Week

Day by Day with a Movement Disorder Posted on February 10, 2012 by DBMay 9, 2016 2

We had quite a week this week. With two Physical Therapy appointments, a Neurology appointment, a Podiatrist appointment, and a Hygienist appointment at the dentist, we’ve been very busy. And I’m really worn out. I’ll be sure to not let the appointments end up like that again.

We go to the dentist regularly, but I’ve always had trouble keeping my mouth open wide all that time. Now I understand why, as my jaw muscles simply fatigue so much that it’s very painful. And that has set my neck into spasms in the past. I sure didn’t want that to happen right now, as painful as my neck has become.

I found out a long time ago that I could deal with any lengthy dental work better if I asked for a bite block. That wedges my mouth open without me having keep it open myself. So this time I asked for the bite block when I got my teeth cleaned, and it helped a lot.

The Hygienist said my gums were bleeding more than usual. But that didn’t surprise me, since I’m now on a rather large dose of Coenzyme Q10. It acts like Warfarin, a blood thinner. So I guess the next time I have work done, I’ll need to stop the CoQ10 ahead of time.

The Physical Therapist is spending most of my time there trying to relax my neck, shoulder, and back muscles with moist heat and the TENS unit, as well as some wonderful massages and some neck traction. As far as “exercise” I spend time in between the heat and massage sessions just “sitting”. That doesn’t sound like exercise to you I’m sure. But for me to sit unsupported with less pain in a regular chair without the neck brace is really exercise, because my neck muscles have to hold up my head all on their own. It was easier to do today than last time. So the little home exercises he gave me to do, plus what he’s doing at therapy are already helping a little.

He set my TENS unit for my current needs and gave me a diagram of where my hubby will need to put the electrode pads. Hopefully that will mean I can use the TENS unit more and depend on the muscle relaxer and pain meds less.

So I continue to do what I can to improve my situation as much as possible.

Posted in Exercise, MITO | Tagged blood thinner, Coenzyme Q10, CoQ10, dentist, exercise, muscle spasms, pain, Physical Therapy, TENS, weakness | 2 Replies

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