Tag Archives: nutrition

Co-Enzyme Q10, Ubiquinone, Ubiquinol

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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.

Doctors, Doctors, and More Doctors

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I’ve all but lost track of how many doctor’s appointments I’ve had since I last wrote. I’ve been to my Gynecologist twice, a Urologist, my Podiatrist, three Neurologists – one of those at the Muscular Dystrophy Clinic, as well as my own Dermatologist twice and a Dermatology Surgeon.

The upshot of all those visits is that the Neurologists can’t tell me any more than the UAB Neuromuscular specialist told us after the muscle biopsy results came back – there’s no treatment and no cure. I can’t even get any advice from them on beneficial supplements or my nutrition. So we have basically fired the UAB Neurologist and the MDA Neurologist and don’t intend to return to them. I will continue to see my own Neurologist regularly, however, as I need to touch base with someone from time to time for prescription refills and to have someone I can get an appointment with when needed.

I’ve been having urinary difficulties ever since my muscles started weakening, so I finally decided it was time to try to get help. My Gynecologist referred me to a very nice Urologist, and I have confidence that he will find a way to help me deal with these problems.

I’m spending hours a day doing my own research on vitamins, minerals, and herbs that might help maximize my cellular energy production and minimize oxidative stress at the cellular level. It’s a good thing I have a chemistry background. I never thought I’d have a use for that Biochemistry course I took almost 50 years ago! LOL! Not that I actually remember any of what I learned back then, but it has made reading all these online papers a little easier.

I’ve found several excellent books that I’ve read from cover to cover more than once, making notes about combinations of nutrients that work synergistically to improve energy production in the cells and decrease the level of gene mutation. And I’ve also wasted my time on a few books that turned out to be selling some proprietary program, rather than really trying to educate.

Thanks to my research, I’ve been gradually adding a variety of megadose vitamins, enzymes, and minerals, as well as continuing to use the herbal formulations. And all these capsules, powders, and tablets are showing a positive result. I continue to do my physical therapy, but I seem to have plateaued as far as how much I’m able to do at one time. The muscle fatigue takes over pretty quickly. But I definitely feel stronger walking in public than I did a few months ago. And my neck and back pain are more under control than they were. I was able to find a back support that stabilizes my neck and head, so I can manage sitting in a church pew a little easier, and the Neurontin and Robaxin help with the pain, too.

Mitochondrial diseases are caused by mutations of the DNA in the mitochondia, so it didn’t come as a complete shock that my Dermatologist found a squamous cell carcinoma on my face. I had Mohs surgery the next week, and it seems to be healing very well. I had to return to the Dermatologist last week, however, when a patch of skin very close to the scar became painful. The biopsy showed that spot was precancerous, so that area had to be frozen.

Next week I see my Opthamologist for my yearly exam. The retina, particularly the macula, is extremely susceptible to oxidative stress, so it’s very important that I do all I can to keep my eyes as healthy as possible.

My Diabetes continues to be under good control with diet, but I have been gradually gaining weight for the last few months – something I’m not happy about at all. I know some of it is water weight, because that’s a known side effect of some of the nutrients I’m on – but it’s not all water weight by any means. I think some of these supplements have increased my appetite, and my will power isn’t holding up too well to the urges. That’s definitely an area I need to work on right now.

I’m very thankful that I have been able to improve as much as I have in the last few months. I know a whole lot more about the process of cellular nutrition and ways to slow the genetic mutations. My hubby and I have faith that God will give us the wisdom to make good choices for supplements, exercise, and nutrition, and that He will guide the decisions my doctors make.

Making Progress

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I’m pleased to report that my exercises are actually showing improvement. My neck is still giving me trouble, but I have been able to add a small resistance to some of the neck exercises and still do 10 repetitions. I see this as a sign of progress. But I am particularly pleased with improvement in the leg exercises. When I started I could not do a straight leg lift with my left leg at all. It simply would not budge. Now I can raise it for 10 repetitions, although the muscle starts complaining after the first 5. That is a huge improvement! And I can tell that I’m walking better, too.

I’m now on many of the natural herbal versions of my vitamin and supplement routine, as well as taking the full Mito Cocktail regimen. There’s really no way to be sure if the muscle improvement I’m experiencing can be attributed to the exercising, the supplements, or a combination of both. I assume it’s a combination of consistent exercising and the high powered doses of vitamins and cofactors I’m taking. Insurance won’t pay for any of these supplements, so to say the least – they’re expensive. But less pain and my increased energy make it worth it to us.

I continue to read everything I can get my hands on about vitamins and supplements, and I’ve learned a lot and been reminded of much I had already read about. I am now taking a low dose of Prozac, and my Neurologist prescribed Neurontin for pain, so maybe my improved outlook can be attributed to that – but I’d like to think I’m feeling better because I AM better! Either way, I’ll take it!

Hocus Pocus Dominocus

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I did something the other day I would have never thought I would ever do. I went for an herbalist consultation.

You have to understand that I have a science background, having taught Chemistry and Physics. I’ve been to a Chiropractor within a doctor’s office a few times over the years, but never felt comfortable doing it. So making an appointment with this person was a real leap for me. But you also have to understand that hearing the words from your doctor – there’s no treatment and no cure – leaves you looking in different directions for help.

So, I did a lot of online searching about this particular herbalist and was impressed with what I read. I’m certainly not opposed to medicating with natural substances – I’ve been taking the Indian herb Turmeric for years at the recommendation of hubby’s Oncologist. After all, part of the Mitochondrial DNA mutations I have were caused by some of the prescription meds my doctors previously had me taking, so there’s no guarantee that common prescriptions are safe for everyone.

But I was extremely skeptical about HOW the process of deciding what I needed would be determined.

It’s called Applied Kinesiology, and it sounds like something that could win the QUACK Award of the Century! But it wasn’t invasive in any way, and we are at our wits end trying to find someone who will help with deciding what vitamins and supplements would help me. Through research on the Mito sites I’ve gradually added the supplements recommended in the Mito Cocktail, with no real way of knowing if we’re wasting the money on them or not. Plus over the years I had gradually added a bunch of antioxidants and vitamins, trying to improve my general health. We’d also improved our diet considerably, so now we eat a large number of Super Foods, with a good many being raw.

So we’re desperate for some guidance with what to spend our money on and what not to waste it on.

I can honestly say that we DID see an obvious strength or weakness in my muscle strength when holding in turn each of the vitamins and supplements I’ve been taking. (There was absolutely NO attempt to test my prescriptions, or to imply that I should not continue to use them or stop seeing my doctors.) After “testing” my box of supplements, the herbalist proceeded to test a variety of different herbs and vitamins on me, noting those where my muscle strength was the greatest.

After about an hour of this process, we were given a list of specific vitamins, supplements, and herbs that were supposed to be more affective for me than some of those I had been taking. But most of what I had been using were said to be effective and useful for me.

We left with the list, and I spent the next day researching each of these recommendations, checking for side effects and possible interactions with my prescriptions and other supplements. As far as I was able to determine there should be no problems with any of them. I didn’t order all that were recommended, but I did order several substitutions for over the counter versions of vitamins I had been taking, replacing them with herbal versions supplying the same vitamins more naturally.

So my new herbs should be arriving any day now, and I’ll let you know in a month or so if I can tell any difference. Wish me luck!!

I Have Mitochondrial Myopathy

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Diagnosis!

I finally got the results of the muscle biopsy I had back on Dec. 8, 2011! The Neuromuscular Specialist from UAB told us that I had a significant number of ragged red fibers in my muscle tissue, with a diagnosis of Mitochondrial Myopathy. He had suspected that, based on the level of muscle weakness I have, plus my complete medical history and family history.

The muscle biopsy site is now healed, with a good size cavity in my upper arm. I had no idea he would take such a large section of muscle tissue out. But this test is the only way to know for sure if I had MITO or not. It’s a good thing I don’t wear sleeveless outfits, as it’s really quite ugly.

Mitochondrial Myopathy

Mitochondrial Myopathy is classified as a Rare Disease by the National Institute of Health, affecting about 1 in 5,000 people. The Mitochondria are found in all human cells except for mature red blood cells. They are the engines that provide energy to the cells to function properly. When they are defective in some way the cells cannot properly use the food fuel to provide that energy needed for normal cell activity.

Exactly how this disease affects a person depends on which type of cells are most significantly affected by mutated Mitochondrial DNA. I was born with this disease, and the doctor says the mutations have been building up in my body my whole life. Now I have accumulated a significant number of muscular tissue cells with defective Mitochondria. So my symptoms have finally progressed to a point that it was possible to make an accurate diagnosis, confirmed by the muscle biopsy.

Adult onset MITO is not a life threatening disease. We are extremely thankful for that. It certainly does affect my quality of life, however. The specialist does not think I will ever end up in a wheelchair, which is wonderful news. There is no cure and no real treatment, however. That’s the bad news.

No Treatment?

There are some vitamins and cofactors I can try taking. But I’ll basically have to experiment on myself to see which ones, if any, will possibly give me more energy. He suggested I try Coenzyme-Q10, so I started taking it last night. Antioxidants may also be helpful. I had stopped taking all but the most essential meds and supplements early in 2011. That’s when my liver enzymes were first elevated and the weakness became pronounced. Now that we know what I have, I plan to start taking Turmeric, Vitamin E, Omega 3, and Lutein again, as well as the CoQ10. I already eat a diet rich in green leafy vegetables, nuts, and fruits. We consciously eat high quality proteins and limited complex carbohydrates. These are all recommended for Diabetics and people with neurological disorders.

Mitochondrial Myopathy Plan of Action

When I see my own Neurologist next time I’ll probably ask for a prescription for Physical Therapy again. They can help me build up a safe exercise routine based on this diagnosis. In the mean time I’ll try to increase my activity level VERY gradually.

I’ve joined the United Mitochondrial Disease Foundation, MitoAction, and the Muscular Dystrophy Association. And I’m studying all the information on this disease they provide.

So I feel like I’m developing a plan of action. And I have hope that I will be able to slow the progression of this disease with supplements and good nutrition. I’m thankful to God for our close proximity to such a world renowned research hospital as UAB and for the specialists there. Waiting so long to get these test results has been extremely hard on both of us. But now we have an enemy with a name. And we can deal with my Mitochondrial Myopathy emotionally and physically.

Great News about my Diabetes!!

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My doctor is very proud of me for having an A1C of 5.5 two times in a row. That means for the last 8 months I’ve had a better sugar level than most people without diabetes! He actually said I was no longer Diabetic, and he halved my Metformin dosage. To say the least I’ve been celebrating this week, and with Christmas right around the corner I’m sure I’ll indulge more than I did last Christmas! After that, I’ll have to go back to eating more properly and checking my blood glucose levels, but for right now…we’re just celebrating.

I could never have lost and kept off the 60+ pounds over the last almost 2 years now if it hadn’t been for my dear sweet hubby, who does the grocery shopping and cooking. He’s read everything he could get his hands on ever since I was originally diagnosed with Parkinson’s way back in 2005 to be sure I eat the very best possible diet of high antioxidant Super Foods, as have I. And he checked Nutrition labels on every processed food he bought for the last 2+ years for sugar and carbs. I was determined to beat the Diabetes, if at all possible, but I wouldn’t have done it without his considerable help. And we wanted to alleviate the Movement Disorder symptoms as much as possible, too.

So here’s a great big {{{{HUG}}} to the love of my life!

As for the jerks of my current diagnosis – Essential Myoclonus, the news isn’t as good, but maybe I’m doing better than I was. The Depakote plus Primidone combination seems to work a little better than the Neurontin plus Primidone did. It just doesn’t take much to break through and send my shoulder into a jerking fit. The least bit of stress, and it can go on for what seems like hours. Like at the dentist the other day. I jerked in the chair the whole time he did a filling. I like my dentist, but I have childhood memories that have left me dealing with high stress every time I go. I’m better than I used to be, but all the jerking reminds me of how deep seated this fear is.

So hubby and I are celebrating our 50th Christmas together (if you count the years we dated or were engaged), with our family in good health. We are very thankful to God for seeing us through some rough times, but I have faith that times are going to get better.

I pray you and your family will know the Spirit of Christ during this Christmas season.

Grrrrrr Those Blood Glucose Numbers Are Frustrating!!

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Try as I might, I don’t seem to be able to consistently keep my blood glucose numbers where they’re supposed to be. Oh, there are always times when I know exactly what I splurged on that shot it up, and I can accept that as a rare occurrence. It’s when I think I’ve eaten a really good diabetic meal and still have a high reading that is so frustrating.

Hubby thought maybe my testing equipment was just registering high, after we read an article stating that home testing equipment can give results as much as 20% in error. So, just to see what would happen I double tested for several days last week, using the same blood drop with two different testing kits. Sometimes the second one would be lower, and sometimes it would be higher. But both kits consistently showed me too high when it went over the limit my doctor set for me. So I can’t blame it on the 20% inaccuracy findings.

I seem to be particularly susceptible to a glucose rise if I eat most whole wheat breads, something I thought I could have in moderation. So it’s a small piece of sour dough bread with lunch and occasionally a few whole wheat Melba toast pieces with dinner. And I can only manage a very small amount of fruit, which seems to work better if I eat it first. I guess it gets mixed in with the rest of the meal that way and doesn’t have a chance to make a big spike of sugar. So, in effect, I eat my dessert first now.

So I continue to learn what my body will tolerate and what it will not, and we both read everything we can get our hands on that might help me beat this disease as quickly and completely as possible.

Seeing My Neurologist This Week

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It’s time for another visit to my Neurologist this week, and I’m looking forward to seeing what he says about the Diabetes diagnosis and my Physical Therapy exercises. I’m still having some difficulty keeping my blood glucose numbers where they should be, and that keeps me somewhat down in the dumps. I feel like hubby and I are doing everything possible to put the right foods in me, so I just don’t understand why I can’t keep my levels in range all the time. It is just another complex disease to have to deal with.

I’ve been working really hard to get our new Collectibles Catalog online for the last few weeks, and the clutter I’ve made with all my stacks of plates and such is getting to me. It seems like we’re living in a warehouse these days, with boxes stacked everywhere, full of plush animals and vintage items, too. It’s a fun business, and we enjoy going out on the buying jaunts, but then I come home and have to try to find a place to store our “finds”. It seems I can’t have my cake and eat it, too … a clean house and keep on buying new lovies and collectible finds.

I’m still practicing with YouTube videos of Sacred Harp music, and it’s a slow go to learn how to do it. My brain power is definitely not what it used to be, but that could be old age creeping up on me, too. All I know is that I don’t learn new things anywhere near as easily as I once did, and it’s aggravating and frustrating! I read the other day about a 90 something year old lady finishing college, and I thought to myself how impossible it would be for me to absorb all that information now.

I am being very successful with my weight loss attempts. I’m down another couple of pounds, losing at the rate of 1 pound about every 10 days. I’m hoping that by going this slowly and steadily with it that I will not end up with the baggy skin they always show on TV.

Speaking of TV, we’ve been without any TV reception now for several weeks, thanks to an electrical storm that killed our amplifier and antenna rotator. We’ve discovered some of our favorite shows on hulu.com, and I have my notebook hooked up to the TV, so we can both watch the same thing at the same time. We have a large collection of movies, too, so we’ve managed to “watch the tube” several hours a night. I’ve ordered a new amplifier, and do plan to replace the ruined parts and get our television shows back. I do feel good about my success in getting the picture on my laptop to show on the TV. So some neurons are still firing up there.

I’ve done a lot of whining today, and for that I’m sorry. I considered erasing the whole post, but I want this blog to be a true look at what it’s like to have my health problems, so you’re stuck with it. My apologies.

It’s Finger … Finger Prinkin’ Time

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I’m pretty much in the finger prinkin’ routine now of checking glucose levels, and there have only been a few times lately when the result was outside of my target levels. I had a really stressful day yesterday, but my test results right in the midst of the chaos were good, and I’m pleased with that for sure. You see, not only eating carbohydrates will raise blood glucose levels, but also eating until you’re stuffed, even when it’s healthy foods, and also stress, can make the glucose levels high.

I’m doing a pretty good job of sticking to a fairly low calorie diet. I’m aiming for 1200 calories a day, and I’m close most days. The Metformin, or Glucophage as the brand name is known, is supposed to suppress appetite a little, so that is helping. Another side effect that about half the people on it get is diarrhea. For me, that’s a welcome change from the constipation I normally fight. For now, anyway, I’m getting a nice balance, with little problem eliminating.

I went to the Podiatrist Monday morning and had a toenail removed from one foot and a corn I didn’t even know I had removed from the top of the big toe on the other foot. My toenails are so badly deformed with fungus that I hadn’t even noticed it, but I sure knew when he cut it out!! The toenail had to be taken off, because I had stubbed my toe back a couple of months ago, and it never healed. Turns out, there was an abscess under the nail. With reduced feeling in my feet from the Diabetes, and the possibility of future problems if I’m not careful, I guess I’ve added my Podiatrist to the list of doctors I’ll be seeing on a regular basis.

It’s really gotten comical. This year already I have seen my Neurologist, General Practitioner – several times, Dermatologist, Gynecologist, Podiatrist, Diabetic Specialist, Dentist, had a chest X-ray and Blood Glucose Tolerance Test, and I’m going for Physical Therapy about once a month!!! The only one I haven’t seen is my Gastroenterologist. And hubby?? … the Dentist. Not that he doesn’t need to go, but we’ve been so busy going back and forth to my appointments that I’ve gotten nowhere with trying to get him to make one for a good annual checkup.

I’m still reading everything I can about what I can do to eat properly and hopefully diet my way out of needing the Metformin. My Diabetic Specialist thinks I can go off the medicine if I lose the weight. And now that I’m not ravenously hungry all the time I feel confident that I will get back down to a good weight. I need to lose a total of 50 pounds, and that’s going to take awhile. I’m trying to change habits, rather than going on some weird diet. The only “diet” I have ever tried was Atkins, and I did lose weight on it. But when the cravings and weak feelings hit I gained it all back and then some.

We continue to do well with our plush sales, and that keeps me busy when I’m home, as does the Lost Toys Search Service we run. People thank us for helping them, but it does us good, too, knowing that someone has been touched by us when they needed help.

All in all it’s been a good week, and with no doctor appointments on the calendar for next week, I look forward to a good week next week.

It’s Official – I have Type II Diabetes

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I had the appointment with my GP today and asked a ton of questions about where I stand with Diabetes. I asked him point blank if I had pre-diabetes or actual Diabetes, and he said I have Type II Diabetes. I hastened to assure him that that did not upset me, that I just wanted to know, so I could read more intelligently about topics related to Diabetes. This diagnosis is a walk in the park compared to being told I had Parkinson’s, so it doesn’t upset me at all.

He stressed the importance of following a good Diabetic diet, and we explained that we have been eating very healthy diets ever since dear hubby was operated on for colon cancer. Add that to the fact that we both have Alzheimer’s in our family history (mother and grandfather for me), and that I have a Neurological disorder, so we have been consciously eating as many Super Foods as possible for several years now.

The biggest difference for me now is that I must exercise portion control (I have lost some weight already!), and I can’t have chocolate. Of course, he said I could have a little, but he laughed when I explained that I don’t know how to eat just a little chocolate. For me it’s going to have to be all or nothing. Other sweets I’ll be able to take in small amounts probably, but not chocolate!!

He tested the bottom of my feet for feeling, and I am definitely not feeling as well on the bottoms of my feet as I do in my palms. My A1C test came back as 5.5%, which is very, very good! That means I’ve done a good job of keeping my blood glucose under control, and it hasn’t been spiking for very long. They sent off a urine sample to check for albumin levels, which is a measure of kidney health. He has now run every test I know of that is recommended for diabetics.

He looked over my Blood Glucose testing results for this month and was pleased with the numbers. So he suggested that I could test before breakfast and 2 hours after Lunch and Supper every 3 days, unless I was feeling weird. That means a whole lot less finger pricks, and a bottle of test strips will last a lot longer. Those things are VERY expensive!!

I also asked his reasoning for putting me on Glipizide instead of Metformin. He said he chose Glipizide, because he was afraid of the gastrointestinal side effects of Metformin. But I would welcome a medicine that tended me toward diarrhea! I could stop some of my other meds if I did get help in that direction from the Metformin. So he gave me a prescription for it to try, taking only one pill with supper until I see how I do on it.

Since I have an appointment this Thursday with the Diabetes specialist, I’m not going to change anything until I get his view of things, but I was very pleased with the time that my GP took to examine me and answer all my questions. My GP is faxing all the information about my tests, etc., to this specialist, so that will make the appointment even more helpful.

I feel very good about the information I received today. I understand the diagnosis, and I know what I have to do to stay healthy. I am confident that I will be a good patient and will take care of myself, now that I know what needs to be done.