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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: Ambien

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

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

Ahhh To Sleep, Perchance to Dream

Day by Day with a Movement Disorder Posted on December 2, 2006 by DBDecember 2, 2006 7

Thank goodness for Ambien. I called my Neurologist’s nurse yesterday and explained the situation with Daddy. She called in the prescription, and I had a good night’s sleep last night, for the first time in a week. Whew!! That felt good.

It will take me a few days to get over being so tired, I expect, but getting a good night’s sleep will make a world of difference in what I can accomplish without being totally exhausted. Maybe I can even get back to practicing my Tai Chi in Daddy’s living room. After going to all that trouble to learn it again, I sure don’t want to forget it. And it’s good for my balance and stamina, too.

I’ve been reading some articles lately that say Pilates is good for PWP (people with Parkinson’s), so that may be the next thing I look into. I haven’t been able to figure out from what I’ve read if these were specially modified Pilates classes or not. Of course, it would make a big difference if they were. Speaking of PWP, I’ve also found that Parkinson’s folks call themselves Parkies. Ain’t that cute? So I’m a PWP and a Parkie now.

One of the Hospice people tried unsuccessfully several times yesterday afternoon to call us from her cell phone. We live in the middle of nowhere, as far as cell coverage is concerned. “Can you hear me now” just won’t work out here. In fact, we had Verizon, and dropped it, because we couldn’t get it to work at all LOL. She never did come, and we never did get to talk to her, either.

I’m considering ordering DSL for here, so I don’t have to depend on my cell phone while I’m on the computer. Plus, for some reason, the program our church uses for editing our website just won’t let me FTP from here on dialup. It works fine at the house on DSL. I’m the church webmaster, and that has to be updated weekly.

As you may be able to tell, I’m in a pretty good mood today. It’s been over a week since he fell, and we’ve developed somewhat of a routine. Now that I know I will be able to sleep, I feel like we can handle whatever comes, between the two of us. We’ve had plenty of care giving experience, and we have Hospice for support. Our daughters and church family will help where they can, and we have our faith in God to hold us in the good and the bad times. What more could we ask.

Your prayers and kind thoughts are always appreciated, too. The effectual fervent prayer of a righteous man availeth much!

Posted in Uncategorized | Tagged Ambien, care giving, Church family, computer addict, DSL, exercise, exhaustion, family, God, Hospice, insomnia, Neurologist, Parkies, Parkinson's, Pilates, prayer, PWP, support, Tai Chi | 7 Replies

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