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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: FitDay

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

Continuing to Feel Better – Had a Wonderful Christmas!

Day by Day with a Movement Disorder Posted on December 25, 2009 by DBMay 19, 2016 2

I think my stomach is finally healing, although I am still taking the meds. We enjoyed our family Christmas time yesterday, because one of our daughters had to work on Christmas. We just treated yesterday as if it were the 25th and exchanged presents and enjoyed being together.

I did the same thing I did for Thanksgiving – I did not worry about calories or glucose levels. It was a nice break from my usual diet, and I thoroughly enjoyed eating some of the forbidden foods that I love so much. My glucose numbers were high, but not really too high. I think I’m gradually resolving the diabetes problem as I continue to slowly lose weight. My target is to eat about 300 calories each day less than I actually need, which means I would lose a pound about every 10 days. I’ve been graphing my weight on Fitday.com, as well as keeping up with my calories there. That’s been a great motivational help.

I’ve not had any more problems with tics and twitching, since I added a half pill to each dose of Primidone. But I try really hard not to let myself get stressed or upset, and for the most part I’ve been successful.

We’ve had a great time helping people find their childhood lovies and backups and replacements for their children’s lovies. It’s very gratifying, and I think it has a lot to do with the great Christmas mood I’ve been in this year.

So I’m looking forward to 2010, and expecting to be in better health by this time next year!

Posted in Quality of Life | Tagged blood glucose, Christmas, family, FitDay, tics, weight loss | 2 Replies

Doc Says I’m Doing Great … but ………

Day by Day with a Movement Disorder Posted on July 5, 2009 by DBMay 21, 2016 9

I couldn’t stand it any more and made an appointment to see my Diabetes doctor earlier than scheduled. I’ve been so frustrated by so many test results that were more than he had told me to aim for that I felt like something surely could be done to improve things.

So, we went to the doctor Thursday, and he bragged on my 1200 calorie diet and thought I was “doing great” with my glucose numbers. (THAT certainly surprised us both!) But … in the very next breath he DOUBLED my dose of Glucophage! He said I could cut back on the blood testing to 3 times a day, too. Since the test strips are so expensive this is a big help. Medicare pays for 50 strips a month, and the rest has to be paid out of pocket, since my insurance doesn’t cover the test strips.

So far so good on all the testing I’ve done since doubling the dose of medicine, so I’m feeling optimistic that I will lose the weight and eventually leave this diabetes diagnosis behind. Right now I’ve lost right at 20 pounds!! Considering how ravenously hungry I was all the time before being diagnosed, when my glucose was out of control, this is great news!!!

Posted in Type II Diabetes | Tagged blood glucose, diabetes, diagnosis, diet, FitDay, Glucophage, Metformin, weight loss | 9 Replies

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