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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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It’s Finger … Finger Prinkin’ Time

Day by Day with a Movement Disorder Posted on May 9, 2009 by DBMay 21, 2016  

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.

Posted in Type II Diabetes | Tagged appointments, blood glucose, diabetes, diet, elimination difficulties, nutrition, Podiatrist, stress, weight loss | Leave a reply

Looking Forward to a Busy Week This Week

Day by Day with a Movement Disorder Posted on April 26, 2009 by DBMay 21, 2016  

I feel really good today, and that’s something to celebrate! I didn’t even have to fight to stay awake in church today, the way I have for some time now. I think my body is adjusting to the steady level of glucose in my system, or at least a lot more steady than it used to be.

I continue to read everything I can find about ways to improve my diet and keep my blood glucose level in a healthy range.

Not that every day has been as good as today has been. We had our usual Date Day Friday, and the weather was gorgeous. That made for some pleasant yard sale shopping, but it meant we were stopping at a lot more sale signs than we have since last spring. Somewhere around lunch time I just ran out of energy. I ate what I thought was a reasonable lunch, but had the highest glucose reading I have measured so far several hours later. And to add to the general fatigue and yucky feeling from too much glucose in my system, my hands and feet were noticeably swollen. By the time we got home I was really very uncomfortable, and did very little Friday night or yesterday, either. Thank goodness that rough patch is over for now.

I’m looking forward this week to seeing my doctor to ask him about my test results from the Glucose Tolerance Test, go over my log of a month’s worth of glucose readings with him, and get an A1C test done. Oh, and I should tell you that I’ve been pleasantly surprised that all the finger sticks (for right now I’m testing before and 2 hours after every meal) aren’t nearly as bad as I thought they would be.

Here’s my understanding of how the A1C test I will have this week works. Every time a person’s glucose goes too high, the red blood cells are changed, as they react with the excess “sugar”. Once the glucose level comes back down, those changed blood cells do NOT change back to normal. So, for the life of that red blood cell, there is a chemical marker that the A1C test can read. If I have had lots of episodes of high glucose over the last few months then lots of my red blood cells will have this chemical marker in them. This test is almost like a diary of the last two or three months worth of sugar levels. It’s the last step in the diagnosis process to decide whether or not I have pre-diabetes or actual Type II Diabetes, as I understand it.

Then, later on this week I have my first appointment with an Internist who specializes in Hypertension and other Diabetes related problems, particularly Kidney problems. Don’t get me wrong. I am not having any trouble with my kidneys now, and I want to keep it that way! He comes highly recommended by my Gastroenterologist, which means he will be someone who can coordinate with my Gastro about my diabetic diet and my digestive problems and elimination difficulties.

I feel like this is going to be a very important week for me, and I am anxious for it to get going! I would appreciate your prayers!!!

Posted in Quality of Life | Tagged A1C Test, blood glucose, diabetes, diagnosis, diet, elimination difficulties, exhaustion, nutrition | Leave a reply

Coughing, but OK

Day by Day with a Movement Disorder Posted on April 18, 2009 by DBMay 24, 2016 2

Well, I’m still coughing, and the x-ray came back all clear, which is what I expected. I was a little concerned that it might be asthma, since it was worse in the mornings and at night. That fit those symptoms. But the doctor’s nurse said it’s allergies and sinus drainage pooling in the main bronchial tube.

So, I put myself back on an OTC antihistamine that I’ve had good luck with before, and it’s just wait the stuff out now.

I’ve gone back to exercising as much as I can. And we went on our Date Day yesterday. We had to quit a little early, though, as I was exhausted. I’m back in that de-conditioned state again. It will be awhile before I’m back up to the level of exercising I was doing before I got sick. I’m thoroughly enjoying the recumbent bike, and hubby is using it too. It’s sitting in the middle of our living room, so we can watch TV and bike at the same time. Not high decorating style for sure, but right now I just don’t care. If we have company it can be moved temporarily.

I’m pretty much in the habit of taking the glucose readings now, and I’m using FitDay to log in my food intake and exercise minutes. I found this site when our daughter was on a feeding tube, and we needed to keep track of her eating. It’s really a good way to monitor not only calories and carbs, but all the major nutrients.

I’m going to postpone my Physical Therapy session due for next week. There’s no point in going right now, as I am weaker than I was last time. I’ll just keep working on what he has already given me. I do have my annual OBGYN appointment next week, and I’m anxious to see how my bone density is coming along. I’ve been on Calcium now for 2 years, so hopefully I’ve improved some. I don’t drink carbonated beverages, and we get lots of nutrients from the raw spinach salad we eat almost every day.

So, we continue to do what we can to keep our health level in as good a shape as possible. I continue to read everything I can get my hands on about diabetes, too. We had a leaky water pipe out in the yard that got fixed today, so all in all I’ve had a great day.

Posted in Symptoms | Tagged antihistamine, blood glucose, coughing, decongestant, diagnosis, exercise, exhaustion, Friday Date Day, Quality of Life, recumbent bicycle, sinuses | 2 Replies

Still Coughing, but Talking Better

Day by Day with a Movement Disorder Posted on April 16, 2009 by DBMay 24, 2016  

I’m still having bouts of this horrible thick cough, mostly at bedtime and on getting up. I don’t smoke, and never have, but it makes you wonder what I must be allergic to to set off these spasms. I called the doctor’s office again yesterday to let them know the cough syrup just wasn’t working at all. This was the one that was supposed to knock me out, and other than feeling a little woozy the first day, I couldn’t even tell I took it.

So, he sent me off yesterday to have a chest X-ray. I’ve had pneumonia too many times not to know what that feels like, so I’m sure it’s not going to show up that way. This is more like mucus is stuck in the main bronchial tube, and no matter now hard I cough it just stays there. I took the last antibiotic today, so we’ll see what develops.

I’m getting pretty good at pricking my finger and testing my blood glucose. There have been a few times that I felt shaky and hungry the way I was feeling. Those always came on low glucose levels, but none were low enough to be concerned about. I’ve been very good about keeping track of everything I’m eating and trying to keep my carb intake to around 45g per meal and 15g for snacks. I’m also watching the calories, as I really do need to lose weight. I figure if I could lose about a half a pound a week I could be at a good weight in two years. So far I’ve lost a pound. It took me a long time to get this heavy, and it’s going to take awhile to get it off and keep it off. I certainly don’t want any kind of crash diet, on top of all the other health issues I deal with.

I’m finally caught back up with posting requests for help finding lovies on our Search Service. I got way behind when I felt lousy. I’m back to working on my exercise program, doing about half right now, just to ease back into it. My legs got pretty weak the last few weeks. High powered antibiotics do that to me, besides being sick.

I’ve been reading everything I can find about pre-diabetes and diabetes, until I’m finally beginning to absorb what’s involved. There are still a lot of numbers to get stuck in my head – below 70 is low blood sugar, anything over 140 before meals is too high – that sort of thing. But I’m working on it, and have cut out a few particularly helpful articles to add to my health binder. I started that when I was diagnosed with Parkinson’s, added articles to it when the diagnosis was changed to Essential Myoclonus, and now I’m added information about Diabetes. I’m beginning to feel like a doctor!!!

I do feel better today than I have since this laryngitis cough strep mess all started.

Posted in Symptoms | Tagged blood glucose, diabetes, diagnosis, X-rays | Leave a reply

Hack Cough Wheeze

Day by Day with a Movement Disorder Posted on April 11, 2009 by DBMay 24, 2016 3

Well, we went back to the doctor yesterday, since we did not want to go through the weekend with no improvement in sight. The strep is better, with no sore throat any more, but the horrible congestion in the bronchial tubes that causes spasms of severe unproductive coughing has not budged at all. So, my doctor changed my meds AGAIN. Now I’m on Leviquin, a very high powered antibiotic and Tussionex, a cough syrup with some antihistamine in it. He said I would be very sleepy, but I haven’t been. I did sleep through until about 3AM before a coughing fit woke me up, so that’s some improvement.

I can tell that my legs are wobbly today, which shouldn’t be a surprise, considering how much meds I’ve had and how little moving around I’ve been doing. I’ve spent much of the last few days researching pre-diabetes and diabetes. I’ve gotten fairly adept at the finger sticks, so I’m not wasting as many test strips as I did at first, and I have a pretty clear idea of how my normal diet effects my glucose level. There’s no need to waste the strips, and I can’t see that any purpose is served by continuing to test before and after every meal, so for now I’ve put the test kit aside.

I thought I had lost a pound, but now it appears to be showing up again. That means I need to cut back on my portion sizes a bit more. I’m still counting carbs, and until I’m told otherwise, holding it to somewhere in the 150 – 175 grams a day range, with meals around 40g each. I’m trying to hold snacks to 15g of carbs from fruit. And I have not touched anything sweet since the tentative diagnosis of diabetes was first given to us. I say tentative, because the numbers were at borderline level, and I won’t see the doctor about the diagnosis for a couple of more weeks yet.

I know that diabetics can have sweets in moderation, but I know me, too. It’s much easier for me to stay away from them completely than to use moderation! I can’t imagine me being able to quit after just a piece of chocolate!!! Ain’t gonna happen!!!! Besides, we have strawberries and cantaloupe in the fridge, and they are plenty sweet enough.

I’m encouraged to see that the myoclonus has not acted up while I’ve been battling this infection.

The one negative note is that my doctor told me I probably should not take penicillin again, since I had a localized reaction to the shot for the first time in my life. It’s still hot, red, and swollen after almost a week. I’m sorry to have to add Penicillin to my allergy list, as I know how useful an antibiotic it is for a wide variety of ailments. But, there are plenty of other antibiotics available these days, and they will do just fine.

As usual, I have some good things to say, and some not so good. But I work to stay in a positive frame of mind, knowing that worrying about any of this is not going to help one bit, and can even be hurtful. Instead I choose to learn all I can and stay in a positive frame of mind.

Posted in Symptoms | Tagged blood glucose, bronchitis, diabetes, diagnosis, diet, Essential Myoclonus, penicillin allergy, pre-diabetes, weight loss | 3 Replies

If It’s Not One Thing, It’s Another

Day by Day with a Movement Disorder Posted on April 7, 2009 by DBMay 24, 2016 1

Well, what can I say. I woke up Friday with a scratchy throat, and spent the day sucking one Halls after another, trying to keep the sore throat at bay, as I did not want to ruin our Date Day. We did have a nice time together, but by the time we got home I was feeling rough. By Saturday morning I was really sick. Hubby’s Easter Cantata was Sunday morning, so I went to church, even though I probably should have stayed home.

By Sunday night I was running a fever, and I felt even worse by Monday morning. So, I went to the doctor with my suspicion, and the test came back positive, as I had suspected. Strep.

I’ve had strep throat so many times over the years that I can almost tell when I’m getting it again. I still have my tonsils, and when it hits it hits hard and fast. None of this week of a cold that doesn’t get better … no, Mr. Strep hits full force from day one.

He gave me a shot, and hopefully I will be feeling better in a few days.

His nurse asked me if I was checking my blood glucose levels, which came as a surprise, as nothing had been said about doing that when they said I was borderline diabetic and put me on Glipizide. So, we stopped at Walmart, and I bought the testing kit that had the cheapest strips. They really do cost a lot!! The one I bought has strips that cost about $.50 each, while most were more than a dollar a piece. I read all the directions and tried to take a test reading before lunch and another two hours after lunch. Assuming I did it right, the blood glucose level was 90, which is smack dab in the middle of the normal range.

I had such a hard time finding anything I thought I dared eat at our local Chinese buffet on Sunday, I am looking forward to being able to quantify that food’s effect on my blood sugar, so I’ll enjoy eating there more.

Of course for now, there’s no exercise program going on. Aggravating! I was doing really good, too. But it wouldn’t be a good idea to stress my body right now. I’m still counting carbs and reading everything I can get my hands on about pre-diabetes and diabetes. I’m keeping a daily detailed log of my food intake, with carbs totaled. And I’ve learned a whole lot about diabetes, too.

I’m feeling much more knowlegable and in control right now, so now I just need to get my throat and all the post nasal drip settled.

On a brighter note, we mailed more packages yesterday than any other single day ever.

So, I continue to read everything I can find about diabetes, I’m learning to use the testing kit, and I’m getting as much rest as possible, while I wait for the Strep to go away.

Posted in Symptoms | Tagged blood glucose, diabetes, exercise, pre-diabetes, strep throat | 1 Reply

Can’t Blame Everything on Movement Disorder

Day by Day with a Movement Disorder Posted on March 30, 2009 by DBMay 24, 2016 4

I’ve been dealing with intermittent periods of extreme weakness for quite some time now, and have pretty much been blaming it on the Primidone, the medicine I take to control the Essential Myoclonus. My Neuro gave me a prescription for Physical Therapy to develop an appropriate exercise program, and I’ve seem him twice now, about one month apart. I was not pleased with myself, because after about 2 weeks of following his routine, I reached a point where I would feel so weak that I didn’t want to do anything. Even my voice sounded weak.

So, I decided it was time to get an overall checkup at my Primary Physician’s office. He listened to me try to describe how I’ve been feeling, and I was very frustrated, because it’s so hard to put into words how I’ve been acting. Anyway, he ordered a complete blood panel of tests, and I got the results back the next day for most of them. My blood sugar was high, so he ordered a Glucose Tolerance Test, where I had to fast beforehand, have my blood drawn, and then drink a sugary sweet drink. They drew blood two more times at hour intervals, to see if my system handled the sugar overload correctly.

Well, I got the results today, and I was within a few numbers of what is considered to be diabetic. So he wants me to start treatment, and I’m to get a set of brochures about living with diabetes.

I shouldn’t be surprised at this, as I am 66 years old now, and my Daddy and Grandmother both were diabetic. Neither one used insulin, but controlled it with medicine. I’m assuming that’s what he will have me do, too.

The more I read about Type 2 Diabetes, the more I realize that I really have been behaving in ways that are consistent with this diagnosis. I have dry skin that itches, I get shaky weak at times, my energy levels are unpredictable, and I have been constantly feeling hungry. I have had this feeling that if I could just eat the right thing I would get my energy back. Mostly I’ve been filling that need with chocolate. LOL!!

So I instinctively wasn’t too far from the truth. My cells are not getting enough glucose, probably because they have become what is called insulin resistant. So, with too much glucose swimming around in my bloodstream, my cells were screaming for more sugar!!

I’m not the least upset with the diagnosis. Just as I was relieved to find out I had a Neurological Disorder, I am relieved that my doctor was able to pinpoint the source of these strange feelings I’ve been having.

I’ve spent a good bit of time today reading everything I could find online about diabetes nutrition, and thinking about the changes I will need to make in my diet. I know I need to lose a good bit of weight, and now I have the incentive I needed to stop eating chocolate and watch my food portions better.

We’ve been consciously eating Super Foods for several years, so mostly I just need to lower my carbohydrate intake, cutting out all but the occasional the sweets (chocolate).

I look forward to talking with my doctor and getting this under control.

Posted in Symptoms | Tagged blood glucose, diabetes, diagnosis, diet, Essential Myoclonus, symptom diary | 4 Replies

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