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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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Steroids – I Hate Them!!!

Day by Day with a Movement Disorder Posted on April 12, 2011 by DBMay 17, 2016 6

I had tried so hard NOT to have to get a cortisone shot in my neck, because I had trouble the last time I had steroids. But when I had an allergic reaction to the Voltaren Gel, I really didn’t have a choice but to allow the ER doc to give me a steroid shot and put me on a Medrol Pak.

Normally, steroids make me very shaky, hungry, and I can’t sleep. This time I was on Benadryl and Flexeril, too. I don’t know if that made the difference, but I had a completely different reaction this time. I’ve gotten so weak even my voice sounds weak. I’ve not been hungry at all, and I’m not having any trouble sleeping.

I called my doctor yesterday, because of all the weakness. His nurse said to keep an eye on my blood glucose levels and my blood pressure, as steroids can elevate both. So, I checked my blood several times yesterday – and it was lower than usual!

I have one more day of steroids to take, but I quit the Benadryl and Flexeril yesterday, as I am no longer swollen and my neck is gradually improving. The nurse said I may continue to feel weak for up to 4 days after I stop the steroids tomorrow. Oh, goody!

Hopefully the next post will be more upbeat than the last few have been.

Posted in Medicines and Supplements, Symptoms | Tagged allergic reaction, Angioedema, blood glucose, blood pressure, side effects, steroids, weakness | 6 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

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

Insulin Resistance Still a Problem for Me

Day by Day with a Movement Disorder Posted on April 5, 2010 by DBMay 19, 2016 2

I’m very thankful to report that I’m still doing quite well. I haven’t weighed myself again yet, because it’s been too soon for me to have lost another pound. I have my calorie intake set to lose a pound about every 10 days, and I’ve been surprisingly close to that pace for almost a year now. I’m graphing my weight loss on Fitday.com, as well as keeping up with my food intake each day. I really believe having the discipline to write down everything I eat each day has a whole lot to do with the fact that I have lost so much weight. My original goal that I set on April 1, 2009, was to lose 50 pounds by April 15, 2010, but I’m going to be a few pounds short of that at the pace I’m going. But hey, I’m not complaining. I’m very pleased with my results.

I did have a strange situation develop on our Date Day Friday. We ate out at a place that serves huge portions of home cooked vegetables and has great cornbread. It’s not unusual for me to splurge some when we eat out, so I gave part of my vegetables to my hubby, ate a whole cornbread muffin, and had maybe a quarter cup of his peach cobbler. I think that’s the first time I’ve eaten a whole muffin, though, and evidently I paid for it later. About 3 hours later I started getting that deep pit hungry feeling with shakiness, and sure enough, when I checked my sugar – it was low. I ate some prunes and almonds, which is my usual afternoon snack, but the feeling did not go away. So I ate some grapes, too, and began to feel a little better.

This is a rather odd chain of events that happens with Insulin Resistance, which is the cause of Type II Diabetes. I ate too many carbohydrates, so my body released extra insulin to compensate. But, because my cells are insulin resistant, the cells did not let the insulin+glucose molecules into them. So…. I produced even more insulin, because the cells were still sending the signal that they needed it. This continued for several hours, but eventually the cells were flooded with all this insulin, and it pulled my blood glucose level downward. This roller coaster ride is hard on the cells, and to be avoided. That’s why Type II Diabetes should not be ignored, as it causes cell damage if unchecked. So… I learned that even though I have my numbers in a good range almost all the time, with medication of course, I cannot splurge as much as I might like to. No more whole cornbread muffins for me. Sigh.

Posted in Type II Diabetes | Tagged blood glucose, diabetes, Insulin Resistance | 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

Still Improving

Day by Day with a Movement Disorder Posted on January 4, 2010 by DBMay 19, 2016  

Well, the Christmas and New Year’s holidays are over, and things are about to get back to “normal” around here. I made it through all the holiday foods without upsetting my stomach again, and I’ve finished the round of antibiotics. So I really can tell that I’m still improving.

I’ve stopped taking the Reglan and also the Nortriptyline for now. One of them was giving me horrible nightmares, and I haven’t gotten back to my usual sleep pattern yet. The Reglan is not to be taken long term anyway, as it can cause Dyskinesia, and I sure don’t want that! I plan to ask the doctor why he put me on the Nortiptyline, since it’s an anti-depressant. So many of these meds have off label uses, that I don’t want to just stop it completely without knowing why I was taking it.

I still am taking the Carafate an hour before meals and at bedtime, and I won’t go back to the supplements and vitamins I normally take until I stop that. It was just too hard trying to schedule all those extra pills and have my stomach empty for the Carafate.

I even managed to lose another pound during the holidays!! That surprised me, because I allowed myself to enjoy meals with family without concern for glucose readings or calories. I guess my stomach has shrunk, plus my eating habits have changed considerably since April 1, 2009, when I started dieting in earnest.

I am now trying to build back my exercise routine. I did Tai Chi yesterday morning for the first time in I can’t remember when, and I used the treadmill for 3 whole minutes. I know that doesn’t sound like much, but it’s an inexpensive manual one that only has the one incline setting, and walking on it for 2 minutes at a time has been all I could muster, until yesterday. I’m such a weakling! LOL

I never have been much for New Year’s Resolutions, but I guess mine needs to be to get back on a regular exercise routine and stick to it. I’ve lost enough weight now that I’m really in need of some toning up. I don’t know if this old body can recuperate from the baggy skin, but I need to try, at least. And I certainly do need to improve my stamina.

I didn’t do a very good job of testing my glucose levels regularly during the holidays. My results page has lots of empty spots in it. It seemed like every day I would either forget to take it, or we would be out of our normal routine, and I couldn’t take it at the right time. We went to see a lot of movies over the last couple of weeks, and I couldn’t take it then. The rest of the times were just negligence on my part.

My Diabetes doctor said I was doing fine and not to be so concerned about the high readings, and I think I’ve succeeded in not stressing over them to the point that now I’m not diligent any more. It’s always hard for me to find balance, and this is just another example. I’ll try to do better in January. I see him at the end of the month, and I guess he’ll do another A1C then. That will tell the tale, for sure, from my holiday laxness. I’m growing more and more confident that my weight loss will eventually get me out of the diabetic range. I know that’s my goal for April, 2010. I expect to have lost 50 pounds by then, and no longer be diabetic.

At my heaviest ever in March, ’09, I weighed 182, and I’m down to 142 now. So I’ve come a long way. I’m totally motivated to get the rest of the 12 pounds off that I set as my goal, and who knows, maybe I’ll lose a few more than that! I know I couldn’t have done it without keeping track of my calories and carb intake daily. There again, the test will be whether I can achieve a balance of right eating without having to count calories when I’m down to 130. I’ll have to watch the scales pretty carefully to keep from gaining it back!

Sounds like I do have some New Year’s Resolutions after all! And I’m sure I join lots of others who plan to eat more healthy foods, exercise, and lose weight this year. I look forward to twenty ten as being a good, healthy year for me!!!!!

Posted in Quality of Life | Tagged blood glucose, diabetes, diet, exercise, insomnia, low carbohydrates, off label, prescriptions, Quality of Life, stomach, Tai Chi | Leave a reply

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

Not Getting Better Yet

Day by Day with a Movement Disorder Posted on December 9, 2009 by DBMay 19, 2016 3

Well, I’m on my second round of the Carafate, and my digestive system is still not back to normal. So I called my Gastro again and basically asked for an Endoscopy, which I will have on Monday. I’m hoping he will see the cause of this constant nausea and be able to treat it more effectively. It’s been a good six weeks of this unsettled feeling, and I’m ready to be rid of it!

The Myoclonus is behaving itself, at least. I haven’t had many more jerks and facial tics since my Neuro changed my prescription of Primidone to 1 1/2 tablets twice a day. Now if I get cold, which is easy for me to do, that’s another story. I do get the occasional shoulder jerks then. Also, I can tell that my mouth tics are just barely under control, as if they are just waiting for a good reason to start up again. But I can live with the dose I’m on now, and I don’t want to take any more of it than I have to.

Eating out continues to be a challenge with the blood glucose levels. You’d think as many diabetics as there are in the US that restaurants and fast food places would be more diabetes friendly, but they’re not. Well, I guess I’m not really being fair to them, because I would find it easier to eat out if I could eat lettuce, as the vast majority of places do offer salads. I can enjoy a spinach based salad, but not a lettuce one. I’ve probably been off lettuce for the last 20 years or so! Since diabetics can’t have baked potatoes or mashed potatoes, either, that severely limits the sides that I can order in most places. Luckily I like sauteed mushrooms, and can usually get those.

Since I’ve not been feeling well, I’ve not been exercising, either. And the scale shows it, as I have not lost any more weight. We bought ourselves an early Christmas present the other day, though, and maybe that will help. It’s a manual treadmill. I had tried out several motorized versions some time ago, and we agreed that I would not be safe on one of them. With the manual one it’s very easy for me to stop and get off, if I feel like I need to. It’s an extremely simple one, with just the one incline level, so I’m only walking for 2 minutes on it right now. We have the resistance level set to a point that hubby can use it, too. So we’ll leave it there until I build up some leg strength again.

So I’m hopeful that the endoscopy will show what needs to be done to stop the nausea, my blood glucose continues to be under control when we eat at home, and hopefully the treadmill will jump start my weight loss again.

Posted in Symptoms | Tagged blood glucose, diabetes, diet, exercise, nausea, Primidone | 3 Replies

I Jixed It

Day by Day with a Movement Disorder Posted on November 18, 2009 by DBMay 19, 2016 2

Well, I held off saying my tummy was better in my last post, because I thought I would jinx it. Well, I did. When I tried to go back to a more normal diet my tummy started feeling nauseated again. I’ve been on the Align for a week now, and just wasn’t satisfied with the way I’ve been feeling.

So I got an appointment with my Gastro yesterday. He said the Align might take a whole month to help, but that he could give me some things to help now. So I’m on Carafate (generic is Sulcrafate) 1 hour before meals 3 times a day, and I have a Scopalamine patch behind my ear. Surely, the nausea will subside now. I sure hope so.

We ate at the Golden Corral yesterday, and even though this is a huge buffet, I had trouble finding anything I dared to eat. I did get a little mash potatoes, which I would not normally get, because of my diabetes, but I was having trouble filling up my plate, so I took a chance. I even ate a little bit of carrot cake, without the icing. My blood glucose reading was only a little high afterward, so I didn’t do too badly.

My blood glucose readings have been much better than they used to be, since I started limiting my food intake to the blander items that we eat. I’m not eating as much as usual, either. Just don’t feel like it. It’s good to see several days of readings with all of them in the narrow limits my diabetes doctor has given me.

It was interesting that, when I saw my GP as a follow up to the urinary tract infection, my GP says he doesn’t get concerned about glucose readings unless they go over 200, while my diabetes specialist uses 135 as my upper threshold. But then that’s why I’m going to the specialist – he’s much more aggressive. And it may just be my weight loss has finally come close to getting me out of diabetic range. Whatever it is, I’m glad. It’s no fun to try so hard and still see high results.

So today I’m hoping for a better tummy soon, and celebrating the trend of my glucose readings.

Posted in Symptoms | Tagged blood glucose, diet, nausea, Scopalamine, Sucralfate | 2 Replies

My How Time Flies

Day by Day with a Movement Disorder Posted on November 3, 2009 by DBMay 21, 2016 2

Wow! It’s been almost a month since I posted here! I can’t get over how quickly time is going. For the most part I’ve been doing pretty well, although the blood glucose numbers continue to peak at higher numbers than I would like. I’m not stressing so much about it though, so that’s a good thing.

I was increasing my daily exercise quite nicely, until I came down with an infection. These powerful antibiotics always sap my strength, not to mention upset my digestive system, so I haven’t done any exercising lately.

My weight continues to drop ever so slowly, but I’m pleased that I seem to be past the plateau I was on for what seemed like forever. Of course it really wasn’t that long … it’s just that I am not one for patience. I know that losing the weight this slowly is preventing the sagging skin problem that can come with large weight losses. I just have to keep reminding myself of that.

I continue to be frustrated by how hard it is to order from restaurant menus. I’m beginning to learn a few tricks that work, though, like asking to see a dinner menu to see what other options might work better for me. Yesterday we ate lunch out for hubby’s birthday, and I was able to have part of my order from the lunch menu and part from the night menu. And my test levels were good!

I was very pleased with myself that I made the transition from Vista to Windows 7 with no major hitches. And the one minor glitch, that left me with a corrupted mouse pointer file, I was able to find a fix online all by myself. I’ve always been good with computers, so any evidence that I’ve “still got it” is always welcome.

I do continue to have odd brain glitches from time to time. I can forget something completely in a matter of seconds, and I find all kinds of mistakes I’ve made in our online business. Those kinds of goofs really frustrate me, and I get so upset with myself. And that only makes things worse. I need a big dose of I Don’t Care pills at times like these. Hubby is always telling me it’s no big deal, but every little thing I do that’s so bizarre just adds to my negative self talk. I know some of it is my age, and some is from all the medicines I take, so I try think of that when I’m so down. When you’ve taken care of Alzheimer’s family members for years you can’t help but see yourself heading down that path at times. Then I try to tell myself that it’s not forgetting to put something in the refrigerator that counts. It’s that I still know what a refrigerator is for that’s important!

I’m looking forward to having the family here for Thanksgiving, with all the hustle and bustle of the Christmas season not far off, either. So time better not fly too fast, or they will be here before I’m ready for them. If so, they’ll just have to overlook the mess and enjoy the day together anyway!! LOL!!

Posted in Quality of Life | Tagged blood glucose, brain fog, computer addict, depression, diet, exercise, Quality of Life | 2 Replies

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