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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: recumbent bicycle

Looking Forward to an Enjoyable Date Day Today

Day by Day with a Movement Disorder Posted on May 15, 2009 by DBMay 21, 2016 6

This should be an interesting Date Day today. We had a wreck last Friday coming home, when someone we knew hit us from the rear going at a high speed. Turns out he was high on prescription drugs. Anyway, the car is the worse for wear, but we are OK, with no ill effects. So today’s travels will be in our van, which is much harder for me to get in and out of … but nowhere near as difficult as it was to climb up and then get down from the wrecker cab. That was a hoot, as I have so little strength, but I made it. We’ll be going to one of those huge neighborhood sales this morning, one we went to last year when they had their big sale day. Should be fun!

I’ve started back exercising twice a day with the weights and stationary bike, but the improvement seems to be coming so slowly. I worked with the compost heap yesterday for the first time in several months. It’s been a shame to put so much good garbage in the trash can, but with the strep throat, horrible cough, and adjustment to 3 new meds all at once, plus having a toenail removed, I just haven’t been up to taking care of the yard. It just about did me in to work out there for about an hour, with several breaks to sit for a spell, so I don’t know how much longer I’ll be able to work on the compost.

We have some beautiful black soil from last year’s efforts, and it looks like a little bit of the centipede grass that I planted last year may have survived the winter. I am proud of the fact that we only have a partial white trash bag to put out for the garbage truck each week, too. We recycle so much of our household trash that we make a contest out of seeing how little we can send to the landfill each week.

I am continuing to lose weight, which I’m very pleased about. I fully expect to be able to stop taking the diabetic meds, and maybe even the high blood pressure and cholesterol meds, too. “All I have to do” is get my weight down to where it should be. I’ve lost about 8 pounds so far, and that’s the first time my weight has gone down in several years. Judging from the last time I lost weight, way back before I was even diagnosed with Parkinson’s, I hit a plateau about this same weight, so it’s up to me to keep on watching portion sizes and keep working at it.

I’m not on a particular diet, just counting calories and trying very hard to control the number of carbs I get at each meal. I’m using a free online program to keep track of my food intake and exercise routine, and that helps to motivate me. I also bought a book for diabetics giving nutritional information on a large number of franchise restaurant and fast food menus. That has helped me to make some wise decisions about what to eat when we eat out on Friday and Sunday. I was even able to have a very small amount of Cookies n Cream ice cream last Sunday, without elevating my blood sugar.

I am having one problem that I need to call the Diabetic Specialist about, and that’s a nagging tickle that sets off coughing spells. I remembered my mother having the same symptom, and someone at church, too, so I looked it up. And sure enough, ACE inhibitors can cause a cough. There are other kinds of high blood pressure meds he can prescribe, so hopefully it’s just a matter of changing from one to another. It’s a very insistent cough, usually leaving me frantically tearing open a throat lozenge wrapper to get it stopped. And the cough comes out of nowhere … even wakes me up from sleep … very strange. It’s definitely not the cough that GERD causes, as I’ve had that cough before. That comes from stomach acid irritating the throat, and I’m not having any trouble with that right now, as I take my GERD into account in planning meals.

So I plan to deal with the cough today and have a fun day, too. I’m pleased with my weight loss program, and hopefully I’ll continue to exercise regularly, with no interruptions. I see the Physical Therapist next week, and I want to be ready for him. Maybe he’ll even decide it’s time to up the intensity of my workout a bit, so I can regain my strength. This old lady ain’t ready to quit yet!!!

Posted in Quality of Life | Tagged coughing, exercise, Friday Date Day, GERD, prescriptions, recumbent bicycle, weight loss, yard work | 6 Replies

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

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