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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 CR

Sleep? What’s That???

Day by Day with a Movement Disorder Posted on February 17, 2007 by DBFebruary 17, 2007 11

I’m tired. I’ve reached the point that I’m too tired to sleep, even when I could. I have the Ambien CR, but the Neurologist doesn’t want me taking it all the time.

Besides, I might not hear Daddy if I’m doped up. He’s becoming very unpredictable as to his sleeping patterns. There have been some nights lately where he hallucinated much of the night, even clawing to take off his Depends and trying to climb over the bed rails. Other nights, he talks in his sleep. I’ve had several lengthy conversations with him in the middle of the night, where he never opens his eyes, and I can tell he’s still asleep LOL! Other nights, he barely twitches a muscle, but stays in exactly the same place all night long. That’s not good for his skin.

The lift has helped with the lack of strength problem tremendously (Daddy’s and mine, too), and Daddy is accepting it without argument, thank goodness. He’s also letting us feed him, which surprised me. I thought he’d balk, but I think he’s beyond that. He still takes spells of hateful talk, but it doesn’t happen too often any more. Frances heard it for the first time yesterday. It really surprised her. We told her that meant she was part of the family now. 😉

We’ve reached that point in care giving where we pretty much control everything to do with Daddy now. We’ve bought sweat pants and put his regular zipper pants away. I’ve put up his watch, wallet, and keys, which he’d always put on first thing each morning. He’s no longer wearing athletic undershirts or his favorite flannel shirts. We’ve bought him some knit Henley long sleeve shirts instead, so we could get them on and off easier that the unstretching flannels. He’s in white diabetic ankle socks, instead of his dress socks, and I can’t remember the last time he had on both shoes. In fact now we’re not even bothering with the slipper socks, as he’s not standing or walking. The sores on his bottom and his heel look much better, because we have more control over his skin now that he’s not walking and in his own bed. It’s no wonder he keeps asking to go home! He certainly doesn’t recognize the life he’s living now. But he’s safe (well, except for his rail climbing times), and he’s as comfortable as we can get him.

The Zelepar seems to be sufficient for my physical Parkinson’s symptoms, but I’m not sure any medicine could improve the mental deterioration I see, considering all we’re doing right now. Thank goodness for backspace and spell check!!

At the rate I’m going it won’t be long before it’s just too difficult to try to correct all my typing mistakes. I’ll just join Joe, and let you see what it’s really like for me HA!!

So, I’ve cut out what I could in the way of other responsibilities. I haven’t put a new item on eBay in some time, and I’ve put up a notice that we are not able to ship promptly right now. I’ve sent an email to all the BLOG VILLAGE members, asking them to help me with the monthly check on all the voting links and dead blogs. I’ve even cut down on my own reading and commenting, not because I want to, but because I’m just overwhelmed right now.

As you can see, I’m not very cheery today. I’ll feel better once I get some sleep, though – whenever that will be.

Posted in Uncategorized | Tagged Ambien CR, care giving, depression, eBay, hallucinations, insomnia, Neurologist, Parkinson's, Quality of Life, stress, Zelepar | 11 Replies

Zelepar is Working Much Better, Insomnia Is Still a Challenge

Day by Day with a Movement Disorder Posted on January 26, 2007 by DBJanuary 26, 2007  

Evidently the reason I was not getting good results with the Zelepar was due to the strep infection. (I did get a refill on the antibiotic, so my throat continues to improve.) This time, my walking is quite normal, and so is my balance. I am taking the second dose earlier than I did last time, as I think it was one of the factors that was keeping me from sleeping. So this has been a pleasant surprise, and a welcome result.

As for sleeping, that’s been, shall we say, interesting? My Neurologist did not want me to stay on the Ambien CR continuously, although he did refill the prescription. So, I figured I’d better find some other way to get some sleep. It wasn’t working all that great any more, anyway.

Daddy has been taking one or two Tylenol PM for years, so I figured I’d give it a try. I tried two pills for two nights, then cut back to one pill. I was still waking up after a few hours, but went back to sleep quicker. I was getting more hours sleep with the Tylenol than I had been recently with the prescription for Ambien. Go figure. But, I felt drugged for several hours in the morning.

Time to try something else, right? I figured it was time I found out just how much sleep I would get without any sleep aid. The first night I got very little sleep, and wasn’t even sleepy the next day. But after that first night, I’ve been sleeping just about as much as I did with the Ambien. So, I’m just going to do without, saving the Ambien CR for special situations. That way, maybe I’ll get the longer sleep time, the way I did the first few nights I took it.

Posted in Uncategorized | Tagged Ambien CR, balance, difficulty walking, gait, insomnia, Neurologist, Parkinson's, strep throat, Tylenol PM, Zelepar | Leave a reply

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

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