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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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Merry Christmas!!

Day by Day with a Movement Disorder Posted on December 21, 2008 by DBMay 24, 2016 9

The Christmas presents are wrapped, and the stocking presents are ready for stuffing, the house is straighter than it has been in a long time, and I’m in good spirits. Not everything is the way I would wish it to be, but I’m thankful for my improved health and the health of all our family. I pray to God daily, with confidence that things will work out for the best for our family.

My elimination difficulties are settling down somewhat, but the gas was particularly bad yesterday. It’s hard to think of eating out in public, not knowing how my body will react. Hubby and I can joke about it, but it’s extremely embarrassing even just with him. My intention is to wait until after the holidays to get back with my Gastrologist, since my normal routines and diet are disrupted so much right now. Yes, we both love fruit cake, and I had a small piece yesterday, plus a little bit of egg nog. I don’t know if that set off the bloated feeling or not, but I was not comfortable.

I’m better today, at least for now, so maybe I’ll be more careful with what I eat today and see how I do. That’s easy to say now, when I’m not hungry and there are no luscious desserts tempting me.

I’m particularly pleased with my progress with my morning exercises. When a muscle is used for awhile there is a buildup of lactic acid in the muscle fibers. This causes the pain we feel when we exercise. I was not able to do even one repetition of 10 of any of my exercises at first without tremendous cramping. Now I can do almost all of them for 2 repetitions, as long as I don’t do them in a row. So, I go through my Tai Chi form, and then repeat it all for my full 20 times each. This gives the muscles a chance to rest, but I still get the full routine in. While I’m sitting at the computer I do the same thing with my neck exercises, going through the whole routine twice so I get 20 times for each motion.

I’m still doing only 10 minutes on the mini trampoline, and still having to do little resting movements every couple of minutes. But I can get through a whole song on the radio now doing jogging motions that make me bounce all over. This should be good for my gas and digestion problems, too. Until I can “jog” for the whole 10 minutes there really is no point in staying on it any longer.

My little victories in my exercise routine would certainly seem trivial to someone in good health, but I am very proud of how far I’ve come. And I have hope that I will continue to increase my level of activity.

Yes, today is a good day.

Posted in Quality of Life | Tagged bloating, Christmas, exercise, gas, Gastroenterologist, prayer, Tai Chi | 9 Replies

Changing from Bentyl to Triavil for Digestive System

Day by Day with a Movement Disorder Posted on September 11, 2008 by DBNovember 20, 2016  

You may remember when my pharmacist caught what would have been a potentially fatal drug interaction some months ago, when I was still on Parkinson’s meds. At that time my Gastro was searching for some way to help my digestive system to work properly. He had prescribed Triavil, but ended up putting me on Bentyl instead. I have been taking it four times a day ever since. It worked well until I started on the Primidone, but I have had increasing and persistent digestive problems ever since.

He put me back on the strict Bowel Retraining program, limited my food choices even more, put me on the high powered PrevPak to heal the ulcerated stomach that the Endoscocpy found, and expected me to improve. I didn’t. Then he tried a week of some new med called Alinia, but still not any real improvement.

So today, since I am no longer on the PD meds that contraindicated it, I start on Triavil.

It might help if I explained how all this tummy trouble is related to the Movement Disorder. When I am not on medicine for it, it’s real easy to see the uncontrolled movements of various skeletal muscle groups. The twitches, jerks, shakes, tremors, and awkward gait could not possibly be ignored.

But what cannot be seen is what is happening inside me. If I try to stick out my tongue, even now that I am on medicine, you see that it is in constant motion. The same thing is true of throat muscles. Sometimes I can hear the click of the soft palate spasms, and I really didn’t realize that this was anything unusual. I have always had times when I could hear that click. Then come the muscles in the esophagus, that should rhythmically move food down to the stomach, where coordinated muscle action churns the food, passing it on to the small intestines. After the coordinated movements of peristalsis push the undigested food into the colon, the body removes the liquid and eventually we eliminate the solid waste, again using coordinated muscle movements.

Gee, did you notice my intentional use of the word coordinated??? Well, mine AIN’T!!!! It’s no wonder I have GERD, stomach cramps, bloating, gas, constipation, and even problems using rectal muscles properly.

So the Neurologist helps with the skeletal muscle problems, but it’s my Gastroenterologist who helps me with all these internal muscle problems. He has found the right combination to keep me comfortable before, and I am confident that he will this time, too.

Posted in Medicines and Supplements | Tagged bloating, Bowel Retraining, coordination, drug interaction, elimination difficulties, Essential Myoclonus, Gastroenterologist, GERD, muscle spasms, pharmacist, Primidone, stomach, tremors, Triavil | Leave a reply

Tryng a Different Antibiotic for a Week

Day by Day with a Movement Disorder Posted on September 4, 2008 by DBMay 25, 2016 2

I went back to my Gastroenterologist yesterday, thanks to being worked in. He wants to try me on a new antibiotic that I had never heard of, called Alinia, that targets organisms in the upper intestinal tract. He says if this works I should feel better within a week.

He was relieved when I told him that the horrible throat tickle seemed to be improving. I explained about the old diagnosis of Functional Dysphonia I had been given a long time ago, while I was still teaching. Basically the ENT said that stress was causing me to tighten up my vocal chords to the point that it was difficult to speak at all. He gave me some relaxation techniques and speech tips to help at that time, put me on a muscle relaxant, and sent me on my way for 2 weeks of voice rest. He left me feeling like it was my fault, and I was ashamed and embarrassed to tell anyone about it.

I can look back now and realize that it was the Myoclonus showing up, because of excessive voice use and stress. I no longer view that episode as having been “all in my head” and have stopped blaming myself for it.

Anyway, when the Gastro assured me that the Endoscopy showed no sign of inflammation in the esophagus, I had to start thinking of what else it could be. And that’s when I remembered the yawning and starting words with a breathy sound that the ENT had taught me. I talked way down low in a May West kind of voice for a few days, and it did get better. I have only had that gagging tickle a few times since then.

When you have ALS in your family history any kind of apparent muscle weakening is of concern, so he is as relieved as we are that this symptom seems to be improving.

I will start on the Alinia today, since our little pharmacy had to order it, and we will see how it goes.

We passed our 100,000th visitor to our Lost Toys Search Service blog yesterday, so I’m celebrating that milestone. At the rate we are going it won’t take anywhere near three years to get the next 100,000 visits. The popularity of the site continues to grow exponentially, with each happy family spreading the word. So that keeps me busy in a positive way. I credit it with helping me to overcome the depression that often sets in when I feel so yucky.

So … yucky tummy … but staying busy and trying to stay positive!

Posted in Medicines and Supplements | Tagged Alinia, bloating, depression, Functional Dysphonia, nausea, pain, Quality of Life, relaxation, stomach, stress | 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

Tummy Is Still Complaining

Day by Day with a Movement Disorder Posted on August 14, 2008 by DBMay 30, 2016 4

I’ve been on the Prevpac high powered combination of two antibiotics and an acid reducer twice a day now since Monday, and my tummy is cramping more now when food or medicine touches it than it was before I started the medicine! Go figure. I’m going to call Dr. B’s nurse this morning, to see if there is something else I should be doing.

I have continued with the Glycerin suppository routine, but I quit the Milk of Magnesia every 3 days, as it did not seem necessary. I also moved a few of my medicine times around so that the Primidone is not the last thing I take before bed. That dose was going into a completely empty stomach, since I have to empty my tummy before I go to sleep, thanks to GERD. What I came up with is not ideal, but probably better than the way I had it. Now I take the Bentyl last, which is supposed to help the digestive muscles work smoothly and in the normal coordinated pattern, instead of spasms. Not sure that is any easier on my tummy or not, so I have several questions for the nurse.

She has been his nurse for a long time, and we have a good relationship. I have the highest regard for my Gastro and his nurse. They have both been very considerate and patient with me over the years. I never feel like I am being rushed through a mill. I have had a few doctors like that over the years, and I fired them all. I grew up with a family doctor who made house calls, so I like to use medical people who are willing to build a relationship with me. I am very thankful for the great doctors and staff who help me with all my health issues.

I continue to spend a lot of time on our Lost Toys Search Service, and on our online Catalog sales. I’m still a long way from having even half of our inventory cataloged, so it keeps me busy and mentally alert. There’s something new to learn almost every day, and that’s good for the old brain cells.

Speaking of sharpening the brain, have you tried the new Numbrix puzzle that Savant has added to her Parade Magazine article. It’s fun! I even found a place online to work the ones from past issues. I could get addicted to this puzzle very easily, and it’s a nice change from Sudoku.

So, tummy is still a problem, elimination is doing better, and brain is being stimulated. I’m not feeling good, so my energy level is low, but I am getting quite a bit accomplished each day.

All in all, no brain fog and no jerks …. I’d say that’s a good thing.

Posted in Symptoms | Tagged bloating, Bowel Retraining, brain fog, brain training, Gastroenterologist, GERD, glycerin suppositories, muscle spasms, nausea, pain, Prevpac, stomach | 4 Replies

Now on Antibiotics for Stomach Inflamation

Day by Day with a Movement Disorder Posted on August 11, 2008 by DBMay 30, 2016  

We received the answering machine message Friday that the Endoscopy biopsies were all good, but did not get a chance to talk to the nurse about what my Gastro had found. So I called first thing this morning, and he is putting me on the pre-packaged set of antibiotics and acid reducer pills normally used with ulcers.

She did say my stomach lining is very inflamed, but she never actually used the word “ulcer”, so I’m assuming it falls more under the term Gastritis. I will have to do the research again on Primidone, because my Neuro said he had never heard of that as a possible side effect.

I do know that Primidone headed me in the direction of constipation as soon as I started taking it, so I was blaming the tummy problems on it. But as bad a reaction as I had to the Clonazepam, it could be that it was that medicine that inflamed the tummy, and I just felt too miserable to realize my tummy was getting worse.

Regardless of where the blame should be, I now have a treatment plan to deal with it. I also remembered to ask her if it was OK for me to continue to drink the decaf versions of all the High Anti-Oxidant teas that I get each day. Hubby is poking a cup at me all day long! LOL!!! But it’s part of our Super Nutrition routine that I am glad to continue. Some days I get as many as a dozen cups of various herbal teas. As you might imagine, I get a lot of exercise just going back and forth to and from the bathroom!

Posted in Medicines and Supplements | Tagged bloating, Clonazepam, diagnosis, diet, elimination difficulties, endoscopy, Gastritis, Gastroenterologist, nausea, nutrition, pain, Primidone, Quality of Life, stomach, symptoms | Leave a reply

I Should Know Better – Back on Bowel Retraining Routine

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

CAUTION: I try to be as specific with symptoms, problems, etc., as I can, so that what I write might help someone else in a similar situation. Feel free to skip this post if you’re not up to a frank discussion of bodily functions.

There’s nothing that aggravates me more than to go to my wonderful Gastrologist again with nausea and abdominal pain, only to be told to do the same thing he has had me do before. Each time I go through one of these strange “I don’t think I’m constipated” episodes, I think that it can’t possibly be the same thing I had before.

I have to use Miralax each morning, eat a high fiber breakfast cereal, drink lots of fluids, take 4 Bentyl tablets, a chewable Acidophilus tablet, and 3 Metamucil capsules every day. I’ve been on that regimen now for a long time. Until I started on the Primidone I was not having any problems with my bowels. But as soon as I started taking the Primidone, which has done wonders for my jerking and twitching, I noticed that I was heading for trouble with my elimination.

So, I increased my fiber intake, thinking that was going to be enough. And it looked like I was correct, up until the last few weeks. Then I started having a yucky taste in my mouth most of the day. I had a tickling kind of cough if I swallowed anything the least bit spicy or scratchy, and it was not going down the wrong way. I was almost constantly clearing my throat, and by the end of the day my throat was sore.

I was still having my usual 4 or 5 bowel movements a day, just as I have had ever since I went on all this elimination routine. I have problems with the muscles needed for defecation, so I have to stay just shy of diarrhea to be comfortable. I was still having times when I almost didn’t make it to the bathroom, so everything seemed as it should be as far as elimination was concerned.

So, after a miserable weekend, I decided it was time to see my Gastro, and they are so good about working me in. We saw him yesterday, and he says that I AM constipated, despite my objections to his conclusion. I am to call him Friday after being on the full Bowel Retraining routine, which I started last night.

So now, added to the list of procedures that I was already following, I took 4 TBS Milk of Magnesia this morning, plus used 2 Glycerin suppositories. I am to continue using the suppositories daily, and the Milk of Magnesia every 3 days if I still have symptoms. He also told me to go back to eating my normal diet, instead of the baked potatoes and chicken soup that I have eaten almost exclusively since Friday.

So, you know where I have been most of this day. I’m still clearing my throat constantly, and my throat is irritated, but I am not nauseated like I was yesterday morning. I’ll be eating our usual lunch today, and hopefully it will not cause the coughing or nausea to worsen.

Will I ever learn?????

Posted in Symptoms | Tagged Bentyl, bloating, Bowel Retraining, elimination difficulties, gas, Gastroenterologist, GERD, glycerin suppositories, Metamucil, Miralax, nausea, pain, Quality of Life, stomach, swallowing, symptoms | Leave a reply

Slept All Day Yesterday

Day by Day with a Movement Disorder Posted on January 11, 2008 by DBJanuary 11, 2008  

I overdid it. We have been going more and more to fresh foods, mostly raw, for lunch. Our salads have been getting larger, while the amount of cooked vegetables has been decreasing. We’ve also had a few smoothies, including one the other day that was a total disaster. I made myself drink about 6 oz of it, because I just couldn’t stand the thought of wasting all that food. Well, if I ever make one again that tastes yucky – it will make great compost!!

I was bloated on Wednesday morning, and I didn’t feel like exercising at all. I did a little moving around, but quit about half way through the video. But I felt OK as the day went on. I should have paid attention to my body and gone back on my strict safe diet and the bowel retraining regimen I have used in the past. But I didn’t listen.

By that night, I was nauseated and so uncomfortable that I used a Phynergan suppository and went to sleep early. I woke up about midnight coughing uncontrollably from acid reflux, so I started sipping on liquid Gaviscon to calm down my esophagus.

I slept until my medicine alarm went off at 5:00AM, was so groggy that I took the Zelepar and went right back to sleep. I kept on waking up for meds and going back to sleep most of the day. I went back to using the glycerin suppositories, too. I cut back on medicines to only those I thought were essential, and only had a couple of lightly buttered English muffins to eat all day. I managed some chicken soup for supper, and then slept all night again.

Surprisingly, I felt OK this morning. But I will be extra careful with my meals for the next few days, and will be using the glycerin suppositories again for awhile. My Gastroenterologist explained to me that I feel like that when I am constipated. The fact that I am still going to the bathroom doesn’t matter, if I am not eliminating enough to keep my colon working properly.

I went for my Physical Therapy this morning, as usual, and we even did a little traveling for our Date Day. There aren’t very many Estate Sales this time of year, so we ended up going to just two. Neither one of them was very interesting, but we did find some old toys that will pay for our day out, anyway.

I feel fine as I write this, but I had become complacent, I guess, since it had been so long since my tummy has bothered me. I learned my lesson this week.

Posted in Uncategorized | Tagged bloating, Bowel Retraining, diet, elimination difficulties, Friday Date Day, Gastroenterologist, GERD, nausea, Physical Therapy, stomach | Leave a reply

I Told You I Have a Good Doctor!!

Day by Day with a Movement Disorder Posted on September 9, 2007 by DBSeptember 9, 2007 17

Well, I carried the phone around with me all day yesterday, even when I worked outside, just on the chance my Gastroenterologist would call. If it were any doctor but he, I wouldn’t have even considered that to be a possibility. Sure enough, he called about 7:00 last night, apologizing for not having called sooner.

He had me describe my problems again, in greater detail. Even over the phone, it was difficult to go into minute specifics about my elimination situation. He wants me to keep a detailed diary for a few days of every single thing I put in my mouth, plus each symptom event I have. So, I started that last night. It’s funny writing down the time and intensity of each belch and gas episode. ROTFL And it means writing down every bite and sip, including the ingredients of the different herbal teas I drink, but if it helps, it’s worth it! He didn’t think the Beano I had been trying for the last few days would do any good, though, so I didn’t take them this morning.

I know many would not agree with me, but Dr. B’s dedication, and that of other doctors I have, just convince me that much more that I do not want the USA to EVER go to a national health care system. What I read from blogs from countries that have it makes me think that they would not have a doctor going out of his way to call from his home on the weekend to help me with something that is chronic, as this problem is. I am quite willing to have government subsidized health care for those who can’t afford it, but I am adamantly opposed to making it into universal health care, where I have no control over much of anything concerning my health. OK, I’m off my soap box now. ;}

Posted in Uncategorized | Tagged Beano, bloating, elimination difficulties, gas, Gastroenterologist, intake diary, symptom diary, symptoms | 17 Replies

Cpap Adventure Continues

Day by Day with a Movement Disorder Posted on September 4, 2007 by DBSeptember 4, 2007 6

I’ve been on the new full face mask for a week now, with one extremely good night’s sleep, night before last. I’ve been awake since 12:30AM today, though. I woke up with air just jetting out from under the bottom of the mask, where the silicon soft part had come out of the plastic part of the mask. By the time I woke up enough to realize what the problem was, and then fixed it, I was wide awake. I’m also continuing to have problems with my skin. I’m ready to try the all over the face kind. That’s not supposed to irritate skin, as it fits at the hairline and all around the face completely. This is the last style there is, basically, so I’m about to run out of options, other than not use it at all. That 8 hours of sleep on Sunday night gave me such high hopes, too.

I continue to struggle with terrible gas, and I’ll be calling my Gastro’s nurse today to report in. Stopping the Amitiza just didn’t help any. Nothing has really changed as far as feeling like something is wrong with my elimination process, either.

We walked at the track again yesterday morning, after several days off. This time it was due to DH having some pains, as I think he over did it when we started back walking the other day. Hopefully, he’ll be OK this morning, and we can get our walk in. I also worked in the yard early yesterday morning, putting another pile in the Lasagna Compost area and digging around the foundation of our new garage. We need to get a drainage ditch around the front edge, so I’m hoeing just a little bit each day. I’m also trying to sweep off the driveway every day or so, as that is good exercise for my shoulders. It sure does feel funny, though, trying to sweep left handed. But I need to exercise both shoulders, so I do it, funny feeling or not. And boy, am I right sided. I’m pitiful trying to sweep “backwards”. LOL

I’ve been doing more research, trying to see if there is anything I’ve missed about CPAP. I did find that I’m supposed to have the machine below head level, a fact that escaped me somehow. I didn’t keep it on long enough last night to know if that would stop the “rain out”, as it is called. That’s when the humidifier in the machine causes condensation in the tubing, because the air in the room is cooler. I can’t do without the moistened air, so I will need to deal with the condensation. It got so bad one night that it sounded like the thing was gargling!

I was also trying to find out of the machine is aggravating the gas I’m having, and yes, CPAP does often cause that, as many people swallow the air. It’s supposed to be something you grow out of, and can be lessened by using the Ramp Up switch, which starts the pressure lower so you can go to sleep easier. I hadn’t been using it, since going to sleep has never been my problem. But I did use it last night, and will from now on.

For all that I’m discouraged this morning, after so little sleep last night, I am still hopeful that I will adjust to the CPAP. I’m not so optimistic about my digestive system problem, though, and I am still wanting the colonoscopy. My legs and hands continue to be swollen with fluid, too. We’ll see what the doctor has to say today.

Posted in Uncategorized | Tagged bloating, C-PAP, edema, elimination difficulties, exercise, Gastroenterologist, hope, insomnia, Parkinson's, Quality of Life, swallowing, walking track, yard work | 6 Replies

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