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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!

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Trying the Low Carb High Fat Lifestyle

Day by Day with a Movement Disorder Posted on January 19, 2014 by DBMay 8, 2016 2

I’ve been studying anything and everything I could get my hands on about mitochondria and cellular energy production ever since I received the diagnosis of Mitochondrial Myopathy. Since the doctors can’t offer much in the way of treatment, other than suggestions of taking CoEnzymeQ10 and B vitamins, it seemed that if I were to improve – it was going to be by improving my diet.

So over the last year I’ve studied several books and searched all over the internet for information about Paleo, Biblical diets like the Maker’s Diet, and most recently Low Carb High Fat (LCHF), or Ketogenic diets. These are not “diets” in the usual sense of the word, but lifestyle changes. I found quite a few points of common ground in all three of these approaches.

All three emphasize eating the way God meant for our bodies to be fueled, long before the food industry convinced us that stuff in pretty cardboard boxes was better for us than real food. And all of them would be appropriate for my Type II Diabetes.

After seeing Dr. Perlmutter on the Dr. Oz show some time ago, I bought his latest book, “Grain Brain”, and found his approach to make sense for me.

So I’ve been grain free and also greatly increased my fat intake for about the last two weeks and can definitely tell the difference in my energy level. And I don’t just mean I feel peppier – I’ve actually not been as cold as I normally would have been. It may just be a placebo effect, but I’ll take it, either way!

I’m hoping I will see some of the brain fog lift as well, as I reduce the inflammation in my gut that gluten has probably been causing. In all the years of digestion issues I’ve had – I have never been tested for gluten sensitivity, even though I have been diagnosed with IBS and GERD, as well as experienced several ulcers over the years. Since I have so many symptoms of gluten sensitivity, it seemed worthwhile to experiment with the Grain Free approach for at least a couple of months.

I don’t think the dietary adjustments required in a LCHF or Ketogenic diet are something that everyone would want to adhere to, but the continued pain, lack of energy, and brain fog I’ve been experiencing now for several years has made me desperate enough to try just about anything that looks safe.

Posted in Nutrition | Tagged diet, digestion, energy, gluten, Ketogenic, LCHF, Maker's Diet, MITO, Mitochondrial Myopathy, nutrition, Paleo | 2 Replies

Great News about my Diabetes!!

Day by Day with a Movement Disorder Posted on December 18, 2010 by DBOctober 22, 2019 2

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.

Posted in Nutrition | Tagged Christmas, Depakote, diabetes, diet, family, God, jerks, Metformin, Movement Disorder, nutrition, Primidone, Super Foods | 2 Replies

Praying the Depakote Works

Day by Day with a Movement Disorder Posted on December 3, 2010 by DBMay 17, 2016 2

I heard from my Neurologist Wednesday, and he’s trying me on Depakote, instead of the Neurontin. So far I’m not groggy, but I’m still jerking. Hopefully not as bad as I was, though. Today should be the test of it, as it’s had time to get fully into my system now. So, we’ll just wait and see. It does have some possible side effects that aren’t good, such as weight gain, so I’ll have to start weighing regularly again. And watch what I eat, too, as I had been splurging a good bit lately. But I’m not counting Thanksgiving.

It’s strange how they attempt to medicate the symptoms of Essential Myoclonus. Both of my meds, Primidone and Depakote, as well as the Neurontin he took me off of, are anti-seizure meds. But the EEG showed that I’m not having seizures. They really don’t know how these meds work for some people, and for that matter they don’t know what causes EM, either.

We had an enjoyable Date Day yesterday, going to the Galleria and walking around, mostly to see the Christmas decorations. But it’s not like it used to be. There were only token, if any, decorations in the stores, and they didn’t have a Santa in the mall, either. It’s sad to see how “politically correct” everyone’s become, but they sure want our money! But the mall itself was pretty, and the walking was good for me. And we did get some shopping done, but not at the Galleria! Hurray for “dollar stores” (I can remember when they were 10 cent stores)!!

I’ll try to get some more housework done today, and I’m praying that the Depakote works. My walking is still very unsteady, but that may be from lack of enough exercise. Might as well get a clean house while I build a few muscles, eh?

I hope you all had a wonderful Thanksgiving, as we sure did. And I’m thankful that my Neurologist does have some choices for meds to try for me. I pray that he finds the one that stops the jerking.

Thanks be to God for all his unspeakable gifts! He has blessed us in so many ways, particularly that my wonderful hubby is here by my side to help me in any way I need. I don’t know what I would do without him. I love him so much!!

I pray that you keep Christ as the center of your Christmas giving and celebrating, and that you and your family enjoy His Blessings during this holy time of year.

Posted in Medicines and Supplements | Tagged Christmas, Depakote, diet, difficulty walking, Essential Myoclonus, exercise, Friday Date Day, God, Neurontin, prayer, Primidone, weight loss | 2 Replies

I’m Using a NEW Search Box

Day by Day with a Movement Disorder Posted on October 30, 2010 by DBMay 17, 2016 3

I’ve been very unsatisfied with Blogger’s Search Box for a long time, but hadn’t found anything free that worked any better. I can say with relief that I think I’ve found something that will help you find what you want to read about.

You can now search for Parkinson’s and actually find all my posts concerning this important part of our site, rather than just the more recent ones. You might also be interested in our posts about diabetes, improving our diet and losing weight, exercising, digestive and elimination difficulties, brain fog, or Essential Myoclonus, the Movement Disorder I am currently being treated for. You will find posts dealing with our family’s roles as caregivers, too. Along the way there are all kinds of posts dealing with achieving the best Quality of Life, which is very important to me, and my strong belief that God will see us through whatever we have to face in this life.

In case you have a site that could use a better search box, I’m using http://www.freefind.com/.

Posted in Uncategorized | Tagged brain fog, diabetes, diet, elimination difficulties, Essential Myoclonus, exercise, Parkinson's, Quality of Life, Search Engines | 3 Replies

I’m Still Losing Weight

Day by Day with a Movement Disorder Posted on October 28, 2010 by DBMay 19, 2016 2

Well, I have exceeded my goal weight loss by several pounds, and even though I’ve quit counting calories, I’m still losing weight. It’s just as slow a weight loss as it was all those months of trying, but losing it I am. And I’ve been allowing myself the occasional milkshake or pizza, as the mood strikes, too, without regard for calories or lactose intolerance or blood glucose numbers!

I guess I’ve just gotten so used to eating less that I am still “on a diet”, even though I’m not trying. Hmmm… anyone want a milkshake?

I’ve finished reading Dan’s book, I Will Go On, and I’m in the process of re-reading the chapters I found most inspirational to me. I can’t say that I “enjoyed” the first few chapters, but the bulk of the book more than made up for the opening explanation of the various types of Parkinson’s Plus disorders. I would still recommend it as great reading for anyone dealing with PD, or any Movement Disorder, either as the one with it, or as the care giver. I didn’t find the explanations that helpful, as I’ve already read all this many times before in my own Googling, but I would think that anyone new to PD Plus would find this layman’s explanation of all the variations of severe Movement Disorders to be very useful.

I can only be thankful to God that I have a relatively mild Movement Disorder.

Hubby and I have noticed some occasional tremors in my right hand that aren’t as jerky as my foot, shoulder, and face can get at times of stress. It’s nothing to be concerned about, but worth noting, in case it becomes more frequent. I will be able to look back here and see about when we first started seeing it.

When I was first diagnosed with Parkinson’s, we bought a notebook to log any and all symptoms, doctor’s visits, meds, etc. And I kept it up religiously until after the MDS had changed the diagnosis to Essential Myoclonus and had me on Primidone, which worked wonders for me. But I’ve long since quit writing much in it, depending more on keeping track here on my blog of our war on my Type II Diabetes diagnosis. I would recommend the journal method though, for anyone with a progressive disease, such as Parkinson’s. It’s great to be able to answer the doctor’s questions about onset of symptoms by turning back in a journal to the first entry for a given situation. And it’s much easier to keep track of the side effects of meds, etc., too.

There have been some family issues that have kept me somewhat depressed and definitely more tense of late. I don’t handle my emotions as well as I used to, either, so it’s affecting me more than I would like. It’s just something I need to work on. I know that with God’s help I can meet anything that comes my way.

I recently started trying to memorize scripture verses, both as a way of drawing closer to God and to also exercise my memory. I’m picking verses that I already know in a general way, and now I’m trying to learn where they are in the Bible and learn the exact King James version of them. That’s the version I grew up with, so it’s best for me to use. I know a lot of scriptures in a paraphrased sort of way, but, with few exceptions, I never learned their location in the Bible. I regret that I did not master these verses a long time ago. I can certainly tell that my brain is not as sharp as it used to be, but I’m glad to see that I am having some success.

So here I am at this moment in time, with some successes and other situations I continue to work on. Life is good.

Posted in Quality of Life | Tagged brain fog, diet, I Will Go On, King James Bible, memory, Movement Disorder, Parkinson's, Quality of Life, weight loss | 2 Replies

I’ve Lost Weight – Now I’m Getting Asked If I’m Sick

Day by Day with a Movement Disorder Posted on August 17, 2010 by DBMay 19, 2016 10

This is a hoot. I’m in better health than I have been for years, but in the last few weeks my Hubby and I have been asked repeatedly if I’m sick. You’d think I had lost the weight quickly, but it took me over a year to lose the 50 pounds. And the questions are coming from people who see me every week.

I could understand it if I had just changed to clothes that fit me better, or if I had lost the weight in a hurry. But I redid my wardrobe totally several months ago.

Now, I am still losing a little bit of weight, so my new clothes are beginning to fit loosely. That may be the reason for the questions. But all those months I was wearing my old clothes that were way too big for me? Not a word from a soul.

So, now the question is, have I lost TOO much weight? I don’t think so. I still weigh about 10 pounds more than I did when I was 21, when we got married. And there’s no way I could possibly fit in my wedding dress now.

I think it’s because I look older now that I’m thinner. I’d rather I didn’t look older, but I’ll take looking older over feeling worse any day.

It’s really quite ironic. When I was so sick, but heavier, no one but family asked about my health. Now I’m thinner, and much healthier, and they’re concerned about me. Go figure. LOL!

Posted in Quality of Life | Tagged diet, Quality of Life, weight loss | 10 Replies

Getting “Back to Normal”

Day by Day with a Movement Disorder Posted on July 23, 2010 by DBMay 19, 2016 3

Well, I decided to try to get my life “back to normal”.

1. I’ve rearranged my meds, so I’m only taking them a few times a day, instead of what felt like all day long.

2. I’m no longer pricking my fingers 3 times every day, but only doing it 2 hours after lunch. My glucose readings have been consistently good for before breakfast and after supper for a very long time. Most of my fluctuations have been after lunch, since we don’t always eat the same thing then. This has been very liberating feeling, plus it’s a lot less expensive, too!

3. I’ve finally quit putting my calorie count for each meal into FitDay.com. After faithfully keeping track of every meal for over a year, I was just plain tired of doing it. And, I still seem to be losing a little, as I’m not really expecting to eat any more than I have been eating.

Add them altogether, and I really do feel like I’m back to normal. I’m still not exercising the way I should. They did a piece on the news the other day saying that people who sit for 6 or more hours a day have something like a 40% higher heart attack rate, even if they exercise. So, I’m in big trouble. Have I changed the amount of time I spend at the computer since hearing that? No.

So, I’d say 3 steps forward, and one huge one backward, until I get my duff off the sofa and start moving around more.

Posted in Quality of Life | Tagged blood glucose, diet, exercise, FitDay, Quality of Life | 3 Replies

Only ONE Pound to Go!

Day by Day with a Movement Disorder Posted on May 16, 2010 by DBMay 19, 2016 3

I’m celebrating!! In the last year of keeping track of what I eat I’ve gone from size 22 pants to size 12. I feel better, and I feel better about myself, too. I actually like the way I look in clothes now, and it’s been a long time since I could say that.

I credit it to my great hubby, who does the grocery shopping and cooking. He takes a lot of time when he shops to be sure he’s avoiding sugar and lots of carbs, and he keeps a variety of microwave dinners in the house, so I can have just the right number of calories to finish off the day. I have kept up with my calorie count each day on FitDay, and he asks me each evening how many calories I have. It’s easy then to pick something to fix that will keep me in the 1100 to 1200 calorie range.

Now don’t get me wrong. There have been times when I have ignored not only calories, but sugar as well. Occasionally I just have to have a chocolate milkshake or a pizza, or even pig out on desserts at a buffet. But I don’t do that very often. And I’m even learning to enjoy eating just a few squares of dark 75 to 85% cocoa chocolate, when I can’t resist that chocolate craving. I used to eat the whole bar without so much as a thought to how many calories it was.

So, the last year has really involved a lifestyle change for both of us. We both eat the healthy spinach salad with a pepper, onion, mushroom, etc., stir fry for lunch, with fruit and nuts for dessert, and we eat a healthy fiber breakfast, too. I usually have a microwave dinner or soup for supper, and hubby has fruit most of the time. We’ve just gotten used to not eating much at night, and we don’t have nearly the GERD trouble we both used to have.

I’ve reset my weight goal now, and I’m hoping to reach 125 pounds by about the end of August. I’m sure these last pounds will be slow to come off, but that’s OK. I can stick it out. I’ve proven that.

Posted in Nutrition | Tagged diet, FitDay, Quality of Life | 3 Replies

My A1c was 5.5!!!

Day by Day with a Movement Disorder Posted on April 28, 2010 by DBMay 19, 2016 2

Whoo Hoo!! I’m CELEBRATING!! My A1c reading was 5.5 yesterday!! Anything below 7 is considered to be extremely good, so I really did well!! This number is in line with what a person who does NOT have diabetes would get.

The A1c reading is a blood test, usually done at the doctor’s office, that gives a good indication of the average blood glucose level for about the last 3 months.

According to Wikipedia:

In the normal 120-day life span of the red blood cell, glucose molecules react with hemoglobin, forming glycated hemoglobin. In individuals with poorly controlled diabetes, the quantities of these glycated hemoglobins are much higher than in healthy people.

Once a hemoglobin molecule is glycated, it remains that way. A buildup of glycated hemoglobin within the red cell therefore reflects the average level of glucose to which the cell has been exposed during its life cycle.

Basically, if I understand that, extra glucose in the blood permanently changes our red blood cells. Since our blood cells live for about 120 days, measuring the percentage of “sugared up” red blood cells is a good way to see what my glucose level has been for the last few months.

I was not as pleased with my weight, though, as I’ve not lost any more weight in some time. I’m having a hard time getting myself in the exercise habit, and I know that’s the problem. I’m controlling what I eat and how much I eat, with occasional splurges, but I’m not burning enough calories. Plus, I need to be exercising more just for good general health. I’ve already seen considerable improvement with my step climbing and walking up and down steep driveways on our Date Days, so I should be motivated to work out even more. This is what I’m going to have to work on mentally, as I have never been a very physically active person.

So, I celebrate the great blood glucose results for the last few months and continue to exhort myself to improve my activity level.

Posted in Type II Diabetes | Tagged A1C Test, apathy, blood glucose, diabetes, diet, exercise, Quality of Life | 2 Replies

Doing Great!

Day by Day with a Movement Disorder Posted on March 7, 2010 by DBMay 19, 2016  

I’m really feeling good these days. My stomach is behaving itself, and I’m encouraged by the strength that is returning to my legs. I was able to manage a couple of fairly steep driveways on our yard sale haunts on our Date Day without using the cane. That’s quite a victory for me, as I can’t remember how many years it’s been since that was true.

I’m gradually adding back in all the supplements I was taking before my stomach got ulcerated again, and so far there’s been no stomach problems. That’s a true blessing.

I’m also encouraged by my ability to learn about the new programming language that our new sites are written in. It’s slow going, but I am gradually understanding how the code is working. I’m very proud of that.

I’m still going to sleep most nights at 9:00PM and getting up around 5:00AM, so I’m getting plenty of sleep. I usually only wake up once in the night to make a bathroom trip, so my bladder is behaving, too.

I’m getting closer to my goal of losing 50 pounds by April 1. I may not hit the date exactly, but I’m not going to miss it by much. With the lowered rate, and the care hubby takes with his grocery shopping, my blood glucose numbers have been mostly excellent for some time now. Of course, there’s the occasional high number, but I usually know what I’ve eaten to cause it, and learn accordingly.

All in all, I’d say I’m in the best physical and mental state I’ve been in for years, and I hope it continues.

Posted in Quality of Life | Tagged blood glucose, brain fog, diet, difficulty walking, exercise, stomach | Leave a reply

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