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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: coughing

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

Today is My Last Day on the High Powered Ulcer Antibiotics

Day by Day with a Movement Disorder Posted on August 24, 2008 by DBMay 25, 2016 2

I have been counting the days until this Prevpac was finished, because the strong antibiotics have sapped my energy something terrible. My tummy is still tender and I get very uncomfortable after anything, even water, is swallowed. So I don’t think the ulceration in my lower stomach is healed yet. I have felt a little better since I started eating a little something with each medicine dose, and I spread my meds back out over the day the way they used to be. I’m hoping that will keep my stomach from getting irritated and inflamed so badly again.

I am blaming this on the stress that the Clonazepam put me under, plus I have a long standing problem with GERD and have had ulcers before. I have not felt like exercising for a long time now, and I know that I need to, whether I feel like it or not. But the thought of moving is just so overwhelming. There are days when everything seems like such an effort. It’s hard to explain, but sometimes the thought of even getting up to go get a drink of water seems to be too much.

I’m not really depressed, the way I was with the Clonazepam, but just totally wiped out physically, which leaves me low on brain power, too.

So I am celebrating that this is my last day of this stuff and hoping that I see some improvement in my digestion this next week. If I don’t I’ll have to call the Gastro’s nurse, and I suspect he will put me back on another two weeks of this stuff. That’s what happened the last time I had an ulcer.

As for the jerking and tics, I am doing just fine. I have them more as the day goes on, but nothing at all like they used to be. I still startle in an odd way over the least little thing. My body seems to paralyze for a moment, my eyelids flutter, and everything goes blank for a second or two. Then I come out of it and usually realize that whatever startled me was trivial.

I have been able to use the relaxation techniques I learned a long time ago when I was being treated for Functional Dysphonia. I am using the low register of my voice, instead of allowing it to be the high pitched “female” voice. I have sung alto since elementary school, so that is a good indication that my speaking voice should probably be lower than what I normally use. Making a conscious effort to breath at the beginning of make a sound and letting it come from down deep has taken a lot of the strain off of my vocal chords, so I am not choking and gagging with a horrible tickle all the time any more. This was obviously stress induced, and that means I can control it to a great extent.

So once again I choose to look for the positive improvements I have made and hope and pray for continued good progress.

Posted in Quality of Life | Tagged bloating, brain fog, choking, Clonazepam, coughing, depression, exercise, exhaustion, gas, Gastritis, Gastroenterologist, GERD, pain, Prevpac, Quality of Life, startle reflex, stomach, stress | 2 Replies

Had an Endoscopy Today

Day by Day with a Movement Disorder Posted on August 4, 2008 by DBMay 30, 2016  

My Gastro’s nurse called right at 5PM Friday afternoon to tell me that he wanted to do an Endoscopy on Monday, since I was still nauseated, with a yucky acid taste in my mouth, abdominal pain, and coughing fits after swallowing (NOT choking). He had expected me to be much better after going back on the full Bowel Retraining regimen this week.

Talk about hurry up!!! As luck would have it, the Outpatient Services place was closed when I called. I was able to find a place online where I could pre-register, but we had absolutely no idea what time my appointment was, since I did not get to talk to anyone.

So, we got up at 4:30AM today, headed into town, and just showed up there at 6AM when they opened. We went prepared with a whole bag of books, Sudoku puzzles, and magazines, fully expecting to have to wait no telling how long before they could work us in, but it all worked out OK! We were taken at 7AM and were out of there by 10:30!!

He did not find anything obviously wrong with the esophagus, but he did take a biopsy. And he suggested I see my ENT, as they might find something he did not.

My stomach was another matter, however. He could not tell for sure if it is irritated by my meds or if there is an infection, but the lining is definitely inflamed. He biopsied there, too, and told me to stay on the strict ulcer/GERD diet until I get the test results. And for the first time ever of the many times hubby and I have had Endoscopies, we came home with a printout of the “impressions” as to what he suspects the problem is AND photos!! I have lots of medical terms to research now, which I enjoy doing, as I always learn something of value – even if the possible diagnoses don’t turn out to be what is wrong with me.

We stopped and had a nice breakfast and I slept most of the way home, and other than a slightly sore throat, I am doing just fine. Of course I am on el blando diet right now.

I should find out some results by the end of the week, and certainly by sometime next week. It’s just a relief to have the test done and again chase away that nagging little demon sitting on my shoulder who whispers to me to raise doubts about whether I am really just a complainer and that there’s nothing really wrong with me.

Posted in Tests | Tagged Bowel Retraining, coughing, endoscopy, Gastroenterologist, GERD, nausea, pain, stomach | Leave a reply

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