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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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Miralax Effectiveness Evaluation Week 1

Day by Day with a Movement Disorder Posted on December 26, 2006 by DBDecember 4, 2021  

Miralax is a white crystalline powder that is mixed with a liquid and taken each day, one or more times, depending on the doctor’s directions. Its purpose is to soften the bowel movement. It is also supposed to improve the effectiveness of Zelnorm, a medicine which helps to improve the rhythmic muscle action of the digestive system. I had read that it was supposed to be tasteless, but I frankly found that a little hard to believe!

I have been on Zelnorm for some time now, but my Gastroenterologist just added the generic form of Miralax to my prescriptions Friday. I tried dissolving the crystals in water the first time, and, at least for me, I will agree that it is tasteless. It does give the water a slightly thick feel, and I could tell it was going to turn me off of drinking water – a purely mental aversion, but one I needed to heed, as water is extremely important! So, I tried it in apple juice, and that worked for me. Then I got the bright idea to just sprinkle it on my morning bran cereal, since it really does dissolve completely. With a little stirring, it disappeared completely, and I couldn’t even tell it was there. So that’s the way I took it yesterday and today.

I didn’t see any results at all from using it until the third day, and even then it was of minimal help. So, today I went back to using the glycerin suppositories after breakfast, and the combination was very successful. (I had stopped using the suppositories Friday, not knowing how my system was going to react to the Miralax.) The bloating has definitely gone down, as my pants are looser. I’m still belching as soon as I put anything in my stomach – even water – but it isn’t as bad as it was.

Today was the first day in a long time that I didn’t end up with the hot pad on my tummy, trying to ease the pain, so I can see the beginning of some improvement!

I’m sure everyone’s experience with the effectiveness of Miralax will be different, depending partly on why they need to use it. But I can say that someone with Parkinson’s, with a long term constipation problem, should certainly give it a try, anyway. The generic version is not very expensive, it seems to be gentle on the system and suitable for long term use, and it seems to do what they say it will do – all while being as close to unnoticeable as a medicine you have to drink is likely to ever get.

You will find a large number of testimonials about people’s experiences with Miralax at the AskthePatient.com site.

Posted in Uncategorized | Tagged bloating, dissolves, elimination difficulties, gas, Gastroenterologist, glycerin suppositories, Miralax, nausea, pain, Parkinson's, stomach, Zelnorm | Leave a reply

A Quiet Christmas

Day by Day with a Movement Disorder Posted on December 26, 2006 by DBDecember 26, 2006 2

We had a very quiet, uneventful Christmas today. Meals on Wheels always gives Daddy a Christmas present, but for some reason this year there were several. So we made a big deal of having him open them after breakfast. As usual, he didn’t really show any emotion one way or the other, but that’s just the way he is. DH had been recording all the Christmas TV programs he could find, so we watched the Mormon Tabernacle Choir, a fantastic bell choir, and a few other choirs today. Daddy slept through most of it. Both our DD’s called, and Daddy talked to them a little. We got on the extensions and chatted with them for awhile, which helped me feel a good bit less lonely.

DH had bought the makings of a really nice Christmas dinner, so he and I put that together, plus some leftover cornbread and turnip greens Frances had made Friday. It was a really good lunch. We both nearly choked when Daddy told our DD’s that we had leftovers for lunch!! He doesn’t have a clue that he hurts our feelings with his lack of appreciation for anything we try to do for him. I should know better, as he’s always been that way. I was always Daddy’s little girl, always trying to please him, and never succeeding. I finally figured out that the problem was his, not mine, but even now, it still stings sometimes.

The Miralax is finally beginning to take effect, although I still spent a good part of the afternoon with the hot pad on my tummy, trying to quell the discomfort. Hopefully, in the next few days, I’ll really begin to feel better.

All in all, it was not nearly as bad a day as I was expecting it to be, but certainly not as enjoyable a day as it usually is. Talking with our daughters and being with my wonderful hubby all day today made a huge difference for me. I also enjoyed emailing and blogging back and forth with several really great cyber-friends, who have a lot to do with me being able to stay upbeat most days. For that I am truly grateful.

So, yes, it was a quiet Christmas. We listened to a lot of beautiful music. We shared each other’s company. We talked with family and chatted with friends. It was a good day, after all. Merry Christmas!

Posted in Uncategorized | Tagged care giving, Christmas, Miralax, stomach | 2 Replies

I’ve Lost Christmas!

Day by Day with a Movement Disorder Posted on December 21, 2006 by DBDecember 21, 2006 10

Ya know how sometimes it’s too warm when you should be Christmas shopping, and it’s just hard to get in the mood? Well, something like that has happened to me this year. First, we have had shirt sleeve weather, which doesn’t help the situation any, but that’s not really the problem. It just doesn’t feel like Christmas to me this year.

We’re not going to see either of our daughters or their families this weekend. We didn’t decorate our house, because we haven’t been there enough to do it, nor to see it if we had. We put a tiny tree up in Daddy’s living room, but that’s it. Our only Christmas shopping was over the internet, so we haven’t been in any of the crowds, nor had the fun of looking for all the little stocking stuffer unique oddities that our grown kids and grandkids look forward to. I’ve even missed all the Christmas programs at church.

Oh, we’ve had the songs on the radio, but they start that way too early, so it loses its effect. My Sunday School Class did come by here on the way to their Christmas party and sing Christmas carols to Daddy. That was about as close to feeling like it really was Christmas as I have felt. In the vacuum of taking care of Daddy and trying to take care of myself, it just doesn’t feel magical this year. And that’s very depressing. There, I’ve said it out loud. Yes, I am depressed this Christmas, a feeling I have never experienced before on such a joyous holiday.

I never meant, when I started this blog, for it to turn into a place to wallow in self pity, but it sure seems more and more that’s all I’m doing. I guess I could make excuses and call it therapeutic LOL. All I wanted to do was keep a running record of what it was like from day to day, for my own sake, and possibly to benefit someone else going through similar experiences with Parkinson’s.

I was also hoping that by posting regularly, my keywords would attract other PWP through the Search Engines, and I could enjoy some conversations with other people going through the same things I am. That hasn’t happened, either. Maybe it will in time, but right now the Page Rank of this blog is still zero. It’s hard to move up through the Google ranks, and it takes time and patience.

So we take one day at a time, each one feeling pretty much like the day before, expecting the next to feel pretty much like today. It’s a care giving rut that leaves no end in sight, because only God knows the outcome of all this. All we can do is our best from moment to moment.

Posted in Uncategorized | Tagged care giving, Christmas, depression, family, God, Google, Love, Page Rank, Parkinson's, PWP, Search Engines, shopping, stomach | 10 Replies

Another Medicine Change

Day by Day with a Movement Disorder Posted on December 21, 2006 by DBDecember 21, 2006  

When DH got home last night, there was a message from my Gastroenterologist that I am to call back. He wants to make another medicine change, if I’m not any better, and I’m not. So I’ll be talking to his nurse today to see what she has to say.

Night before last I enjoyed a very good night’s sleep for the first time since the first night or two after Daddy fell, thanks to Ambien CR. But last night I was up to my old tricks again. I’ve probably had enough hours of sleep, but it’s been in fits and starts, not in a solid stretch of sleep. I’m writing this in the wee hours of the morning, as there’s really nothing else to do at this time of day but get on the internet.

Posted in Uncategorized | Tagged Ambien CR, Gastroenterologist, insomnia, stomach | Leave a reply

So I’m Stopping the Requip

Day by Day with a Movement Disorder Posted on December 20, 2006 by DBDecember 20, 2006 1

I went to my Neurologist today, and we discussed my digestive problems, hair loss LOL, and insomnia. His solution was to taper off the Requip until I have quit taking it completely and see what happens to my stomach problems. He also gave me a prescription for a time release version of Ambien. And, of course, if it was the Requip that was causing the hair loss, stopping the Requip will take care of that situation.

I told him about writing to the National Parkinson’s Foundation “Ask the Doctor” site, and what that doctor suggested. So he’s given me some samples of the medicine the NPF doctor suggested I try. I’m not supposed to use it until I’ve completely stopped the Requip, if I can possibly stand it. But I explained we were taking care of my Daddy, and I might not be able to put up with my impaired walking that long. He wants me to try, so he can get a fair assessment of how the new medicine works, but he does understand our situation.

He gave me samples of Zelepar, one of the brand names of Selegiline. It dissolves on the tongue, so it does not go through the digestive system at all, but straight into the blood stream. I have high hopes for this medicine. It is also a different type of medicine than I have had before. This one is an MAO inhibitor. I’ll have to do some research to fully understand what that means.

I am very thankful that all the research over the last few years means there are a lot more different types of medicines for him to try on me than there used to be for Parkinson’s. None of them slow down the disease, or do anything at all to cure it, but they do help with the symptoms. For now, that is a blessing. Hopefully, in my lifetime, they will find ways of at least slowing the disease down. And who knows, maybe they’ll even find a cure.

Posted in Uncategorized | Tagged Ambien CR, Ask the Doctor, care giving, difficulty walking, dissolves, hair loss, insomnia, Mao Inhibitor, Neurologist, Parkinson's, Requip, Selegiline, stomach, Zelepar | 1 Reply

Waiting to Talk to the Doctor

Day by Day with a Movement Disorder Posted on December 18, 2006 by DBDecember 18, 2006 2

I stayed home from church yesterday morning and tried to sleep. I think I did doze some, at least. I felt more rested by the time DH came home, anyway. It did feel good to be in my own recliner, under my own quilt, in a COOL house. I haven’t slept in a bed for years, because of my back, but there sure is a difference between my recliner and the one up at Daddy’s!

There’s been no change in the status of my digestive problems yet, and I’ve put in a call to the Doctor to give my progress report. His nurse called back, so Dr. B may be calling me this evening.

Everything else has been pretty much routine today, and I guess that’s good. Our eBay sales will be winding down in the next day or so, as it will be too late to get them to anybody before Christmas. Then we’ll start selling the vintage collectibles that people tend to buy for themselves after Christmas.

Posted in Uncategorized | Tagged eBay, Gastroenterologist, insomnia, stomach | 2 Replies

The Ole Brain’s Missing it’s Sleep!!

Day by Day with a Movement Disorder Posted on December 16, 2006 by DBDecember 16, 2006 2

Today more than any day so far I’ve been able to tell that my mental sharpness has dulled from lack of sleep. I can’t count how many strange mistakes in thinking I’ve made today. DH has sent me home for a couple of hours to try to decompress from whatever tension I might be feeling at Daddy’s house, but it just doesn’t seem to be enough to do any good. What I really need is a good night’s rest.

The really strange part is that I’m not in the least sleepy! I’m not hyper, either. I feel perfectly normal, until I do something really, really stupid, and then I wonder where did that come from. But I really know where it’s coming from. I just don’t know what to do about it.

I go to the Neurologist Tuesday, so I’ll try to last on the sleep the Ambien gives me until then.

Daddy was stronger this morning, and his own barber came over and cut his hair, which pleased him immensely. But he’s been sleeping in his chair literally all day today. So whatever happened yesterday morning has taken its toll on him again, evidently.

I continue to battle the digestive problems, trying to follow the new instructions from Dr. B today. No real change, yet, but it’s too soon to expect any difference, really.

Posted in Uncategorized | Tagged Ambien, appointments, Gastroenterologist, insomnia, Neurologist, stomach | 2 Replies

Doctor Recognized My Symptoms

Day by Day with a Movement Disorder Posted on December 16, 2006 by DBDecember 16, 2006  

I went to my Gastroenterologist today, and I went into some detail about the stomach and general digestive problems I’ve been having for some time now. He recognized what I was describing, and even had a worksheet of instructions already printed up with how to deal with my set of symptoms. He definitely said this problem was caused by my Parkinson’s medicine, Requip, and not by the Parkinson’s Disease, itself.

I was correct in my guess that my digestive system had basically quit moving things along, but apparently wrong as to the reason, as I thought it was the PD causing it.

Anyway, he assures me I will be feeling much better in a few days, and I’m to call his nurse Monday with my progress report. Hopefully, I will have a good report for her.

Daddy woke up this morning barely able to balance well enough to sit on the side of the bed without falling back over. It was much harder than usual to get him dressed, and I was glad when DH got there, so he could help me walk him to the kitchen for breakfast. By then, Frances had gotten there, and we cautioned her that he was very unsteady. When we got back this evening, she said whatever was going on earlier had passed by mid morning, and the rest of the day was normal. I don’t know if he had another little stroke in the night or not, but he sure was different for awhile this morning.

I’m very thankful I have someone I can leave Daddy with that I have confidence in. Otherwise, I probably would have postponed my own appointment today, and that would not have done either one of us much good.

Posted in Uncategorized | Tagged appointments, care giving, Gastroenterologist, Parkinson's, Requip, stomach | Leave a reply

Seeing My Doctors Sooner

Day by Day with a Movement Disorder Posted on December 12, 2006 by DBDecember 12, 2006  

I was quite surprised to not only be able to get an appointment with my Gastroenterologist this Friday, but I was also able to get one with my Neurologist next Tuesday. The Neurologist appointment really surprised me, as I know how long I’ve had to wait before to get one. I must have lucked up on one somebody had canceled, but I’m thankful for it, regardless of how I got it.

I’m hoping that, between the two appointments, a definite solution to my stomach problems can be found, and I also need to have a different sleep aide prescription besides Ambien.

The Friday appointment won’t be a problem, because Frances comes on Friday’s anyway, but I’m just keeping my fingers crossed that she can come on Tuesday. She’s out of town right now, so I’ll have to call tomorrow to work out the details. If she can’t, then I’ll have to start calling church members to find somebody who can sit with Daddy for us.

I want to thank you, friends, who put up with my daily moans and groans, to give me an encouraging word. I really need that encouragement right now. Our situation with Daddy has settled into pretty much of a routine, but there are still a lot of questions about what the future will hold. It’s hard to imagine that he will recuperate from this episode and be able to live by himself again. But I keep reminding myself that he’s “graduated” from Hospice once before. He really is amazing! Cantankerous, but amazing!!!

Posted in Uncategorized | Tagged Ambien, appointments, care giving, Gastroenterologist, Hospice, insomnia, Neurologist, stomach, stress | Leave a reply

Same-o Same-o

Day by Day with a Movement Disorder Posted on December 12, 2006 by DBDecember 12, 2006 6

I did go to church Sunday morning, which was a pleasantly normal thing to do, but my stomach acted up, as usual, so I really didn’t get to enjoy the afternoon. I did get a good bit of rest, though, which I certainly needed, but I’m still not getting more than a few hours sleep at night. The Ambien just isn’t working for me.

Today has been pretty much a repeat of many others, with the accompanying stomach bloating and cramps. I’m being just as careful as I can with what I eat, and I’m not having any bathroom problems, so I have to conclude that this is due to the Parkinson’s itself. Just like my legs were moving so slowly before I was on medicine, evidently my digestive system muscles are also moving very slowly. The regular Parkinson’s meds don’t work on these involuntary muscles. That’s what the Zelnorm is supposed to be helping, but I don’t really think it is. And, thanks to how lousy I’m feeling, I’m losing a good bit of weight.

So it looks like I’ll be moving my Gastroenterologist and Neurologist appointments up sooner, if possible, as I’ve had about as much of this stomach trouble as I want to put up with.

Posted in Uncategorized | Tagged Ambien, appointments, bloating, gas, Gastroenterologist, insomnia, nausea, Neurologist, pain, Parkinson's, stomach, Sunday, weight loss, Zelnorm | 6 Replies

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