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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: elimination difficulties

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My Digestive System Is Behaving! Not So Sure about Us??

Day by Day with a Movement Disorder Posted on December 31, 2006 by DBDecember 31, 2006 6

It looks like the Gastroenterologist has found the right combination to get my digestive system working again in a manageable way. I haven’t had any pain or bloating now for several days, and I’ve been able to eat some things I wouldn’t have dreamed of trying just last week. I still don’t have an appetite, but I still need to lose weight, too! So I’ll count that as a blessing for right now.

We had our Date Day today, instead of yesterday, because our respite care giver couldn’t come yesterday. We had an enjoyable day together, not really doing much, but just relaxing. With my balance as wacky as it is right now, there’s not much else we could do.

Daddy, DH, and I had our first big flare up of tempers this evening. It was just a matter of time before it happened. We’ve been trying to stall it by getting out of the house a couple of days each week, but it was inevitable.

Daddy hates the idea of having anybody in his house, doing things he would normally be doing, or changing his routines. He’s been independent too long to take easily to having DH and me here, and certainly to having Frances here two days a week. And he hates not being able to take care of himself any more.

We’ve understood how he felt, so we’ve been biting our tongues ever since he fell, as his bitterness shows through in almost everything he says to us. Hopefully this show of temper on all our parts will clear the air for a little while, but that remains to be seen.

So my relaxing day had a somewhat dramatic end, but as thick as the tension has been around here, it may well have been for the best in the long run. I can only hope so.

Posted in Uncategorized | Tagged balance, bloating, care giving, difficulty walking, elimination difficulties, Friday Date Day, Gastroenterologist, Parkinson's, Quality of Life, respite care, stomach, weight loss | 6 Replies

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

Parkinson’s and Constipation

Day by Day with a Movement Disorder Posted on December 22, 2006 by DBDecember 22, 2006 11

I feel like I ought to warn you that this post made me uncomfortable to write it, and it may make you uncomfortable to read it. It’s not considered “polite” to discuss bathroom problems, and I understand that. So just skip this one, if you like. I’ll certainly understand. But if you have Parkinson’s, or know someone with Parkinson’s, you might want to keep reading.

My Gastroenterologist has added Miralax to my Zelnorm prescription. He’s recently started me on a regimen of daily glycerin suppository use, too, in what’s called Bowel Retraining. I’ve already been on Metamucil capsules for several months now, and also eating a high fiber bran cereal every morning. The Parkinson’s, or a combination of the PD and my meds, has left me with very little muscle power in my digestive system, plus diminished nerve awareness as well. He says that’s where the bloating, nausea, and gas are coming from.

I am not allowed to have coffee, any caffeine drinks, carbonated drinks, chocolate, any dairy products – including cheese, any citrus fruits or tomato based foods, peanuts, drink liquids with meals, or eat anything within two hours of bedtime. And I’m sure I’m leaving something off the list! It seems like every time I go see him he adds something else to the list, anyway. Some things on the list are for my GERD, and some are for the IBS (Irritable Bowel Syndrome) symptoms he’s treating.

Constipation is one of the most universal symptoms that people with Parkinson’s Disease deal with, but, let’s face it, it’s not something anybody likes to talk about. But I want this blog to be useful to other PWP, so I don’t want to leave out this information, even though I really don’t like coming right out and admitting that I’m constipated. I really didn’t realize I was, as everything seemed OK to me. But it’s obvious to me now, after taking all these high powered medicines he’s had me on lately, that I am, and have been for some time now.

Again, in the interest of being helpful to other folks with PD, I found this really well done site about constipation at MedicineNet.com.

Well, this was not an easy post for me to write, but I hope it turns out to be helpful to someone else with Parkinson’s who’s suffering some of the same symptoms I have been for so long. This is not a battle I have won, by any means. In fact, judging by the lack of success my doctor has had so far in dealing with my problem, I’m probably going to be dealing with this off and on the rest of my life. That’s probably the case with most PWP, as well. If any one chooses to comment, I’d appreciate hearing what you have to say about how you’ve dealt with this problem.

Posted in Uncategorized | Tagged bloating, Bowel Retraining, elimination difficulties, gas, Gastroenterologist, GERD, glycerin suppositories, Metamucil, Miralax, nausea, Parkinson's, Zelnorm | 11 Replies

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