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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: Zelepar

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First Dose of Zelepar, My New Parkinson’s Medicine!

Day by Day with a Movement Disorder Posted on January 3, 2007 by DBJanuary 3, 2007 2

This is the day I have been waiting for for about two weeks now. I spent that time tapering off of the Requip I had been on, went without any PD medicine yesterday, and this morning I took the first dose of Zelepar.

Zelepar is a quick dissolving tablet form of Selegiline, which dissolves under the tongue. It tasted a little like an orange mint might to me, but it does dissolve extremely fast. There was also a little tingle on the tongue, but nothing uncomfortable. I had read somewhere on the Internet that it tasted bitter, but, for me at least, that was not so. The directions emphasized not to drink any liquids or eat anything at least 5 minutes before or after taking it. I’ll be taking it twice a day while I’m on the samples, but I’m to go back to the Neurologist at the end of this two week trial.

I felt my walking begin to smooth out within about 30 minutes. It may be my imagination, but I think it’s made me a little hyper, too. (Of course, I’ve been so slow the last two weeks it may be I’m just normal now.) I’ll have to be careful when I take the evening dose, if that’s so, or I won’t get any sleep tonight. LOL

I’ve been reading the explanations of what a MAO-inhibitor is, which is the class of drugs that Selegiline falls in, and I think I’ve got it figured out. Basically, it’s some kind of high powered targeted anti-oxidant, that keeps the smaller amount of dopamine that my brain is making from being broken down prematurely. So I’m getting the full benefit of what my brain is naturally producing.

There is also some research that suggests that Selegiline may actually protect the part of the brain that makes dopamine, and possibly slow down the progression of this disease! If you’re not really familiar with Parkinson’s Disease, that may not sound so significant, but it would be quite a break through. All the other meds treat symptoms only. There is a possibility that Selegiline may effect the cause of Parkinson’s!! I’ll not go so far as to get my hopes up for that, but you bet I’ll be watching to see if that turns out to be true.

Posted in Uncategorized | Tagged brain, dissolves, Mao Inhibitor, Neurologist, Parkinson's, Requip, Selegiline, Zelepar | 2 Replies

A New Year & Renewed Hope

Day by Day with a Movement Disorder Posted on January 1, 2007 by DBJanuary 1, 2007 9

Today is the first day of a new year, and I must say, I’m glad to see 2006 over and done with. Not many years in my life have involved as many health related problems as last year did. My DH and I both had surgery, and our older DD spent months recuperating from Peripheral Neuropathy, caused by nutritional problems from previous Gastric Bypass surgery. I stayed with her each of the many times she went to the hospital, and I also stayed with her at her house, helping her with a gastric feeding tube, which did not work properly, and was eventually removed. On top of that, I was diagnosed with Parkinson’s and Peripheral Neuropathy. And then, the day after Thanksgiving, my 101 year old Daddy fell from what must have been a light stroke. He can no longer take care of himself, so DH and I have been taking turns staying with him ever since, with the help of Hospice and a hired part time sitter.

So I have high hopes for this New Year of 2007. I figure it’s time we had a quiet year. We survived last year, through God’s grace, with our sanity more or less intact, but with our faith definitely stronger. What’s that expression that Neiche(sp?) gets quoted on all the time? “That which does not kill us, strengthens us.” I think that’s correct, and I certainly believe it.

I’m still pleased with the combination of Miralax and glycerine suppositories, as my digestion PD symptoms have improved tremendously. Tomorrow is my last day to be on Requip, and then on Wednesday I’m going to start taking Zelepar. This is really the first time I’ve tried a Parkinson’s medicine when my digestive system was settled down before I started taking the new meds. At least the Zelepar will have a decent chance of working, without tearing my stomach up!

So I start the New Year full of hope and expectation that it will be a good year.

Posted in Uncategorized | Tagged 2006, 2007, glycerin suppositories, hope, Miralax, New Year, New Year's Day, Parkinson's, peripheral neuropathy, Zelepar | 9 Replies

Tapering Off Requip

Day by Day with a Movement Disorder Posted on December 29, 2006 by DBDecember 29, 2006 6

When I went to my Neurologist last Tuesday, we decided I would stop taking the Requip, since it was probably the cause of all my stomach problems, other than the PD itself. Also, it was the likely culprit for my hair loss. So, Dr. S. told me to taper off the Requip before I changed over to the samples of Zelepar he gave me. That meant last week I only had two pills a day, instead of the usual three. Starting Tuesday of this week, I’ve only been taking one a day.

Dopamine is the brain chemical that controls muscle movement, and that’s the one that people with Parkinson’s no longer make enough of. Requip tricks the brain into accepting the chemical in it as a substitute for the dopamine, so it’s called a dopamine agonist. Now that I’m down to one pill a day, I can really tell it! My balance is terrible, and my walking is stilted and jerky.

As long as DH can take over the care giving tasks I’m not up to, I’ll continue to do as much as I can to help Daddy. We’ve only got to make it until next Wednesday, and then I can start taking the new medicine. Zelepar, a special form of the medicine called Selegiline, is a different type of Parkinson’s medicine entirely. It is an MAO-inhibitor. I’ve read what that means a dozen times now, but I still don’t understand it well enough to put it in my own words LOL.

The reason Dr. S. is trying this particular prescription is that it dissolves on the tongue and does not go through my digestive system. It goes straight into the blood stream. With the improvement in stomach comfort that I’m seeing from the Miralax and glycerin suppository combination, I’m hoping this new medicine will be the perfect one for me for the time being.

I do know that at some point I will have to go back to taking Sinemet, which was the first medicine I took. It nauseated me, too, but I’ll cross that bridge when I get to it, because there is a patch form of it in drug trials now.

So for the next few days I’ll be weaving and lurching around here like I’m drunk, but I can put up with it, knowing there’s something new to try just days away. I am ever thankful to God that there are so many researchers working to find new ways of fighting the symptoms of this disease, working on ways to slow its progress down, and ultimately to cure it.

Posted in Uncategorized | Tagged balance, brain, care giving, difficulty walking, dissolves, dopamine agonist, glycerin suppositories, hair loss, Mao Inhibitor, Miralax, nausea, Neurologist, Parkinson's, Requip, Selegiline, Zelepar | 6 Replies

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

Another Great Day!

Day by Day with a Movement Disorder Posted on November 18, 2006 by DBMay 7, 2016  

We had a wonderful Date Day yesterday, with beautiful Fall weather, and some really nice finds at a handful of garage/moving and Estate sales. Because of the direction we headed, DH didn’t have to deal with horrible Friday afternoon traffic when it was time to head home, like he usually does, so that made it even better.

We ate out at a buffet, so I was able to find plenty that I could eat, while he could get what he wanted. I’ve gotten in the habit of taking a couple of Beano caplets before I eat, anytime I even suspect that I’m going to eat something that might produce gas, and that seems to be helping, too. All and all, I seem to be settling into a pretty good idea of how to eat in such a way as to protect my stomach, as things have been pretty calm for several days now.

I wrote to the Ask the Doctor mailing list on the National Parkinson’s Foundation site last week, and my post showed up in the email today. It takes about a week between sending in a question and getting an answer, as these are practicing physicians, who take the time to answer the questions. I had asked the mailing list doctor if he could suggest any meds that I could take in patch form, to bypass my stomach.

The doctor suggested I try the form of Selegiline, called Zelepar, that dissolves under the tongue and bypasses the stomach, and also go back to Sinemet, with a larger dose of Lodocyn. According to him, Requip causes more nausea than Sinemet does. My Dr. S. had said he couldn’t promise that the Requip wouldn’t make me more nauseated, but that he wanted to give it a try.

So, for now, at least, I’ll stick to the Requip, but if the nausea and bloating start up again, I think I’ll make an appointment with the Neurologist for as soon as possible, and see what he says about the Parkinsons’s Foundation Doctor’s suggestion.

Posted in Uncategorized | Tagged Ask the Doctor, Beano, eating out, Friday Date Day, gas, Lodosyn, nausea, Requip, Selegiline, Sinemet, Zelepar | Leave a reply

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