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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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Blog Move Is Finished, More or Less

Day by Day with a Movement Disorder Posted on November 13, 2006 by DBMay 7, 2016 2

I’ve been a very busy lady, working to turn the plain black and white template into what looks as much like what I had before as I possibly can. There’s bound to be something I’ve forgotten to do, but I’m sure I’ll realize it sooner or later ;).

I’ve been sitting very still at the computer pretty much all day for the last few days, as that’s the only way I can keep the nausea under control. I’ve had a bad headache, too, for the last few days. My neck and shoulder muscles have been so tight that I think that’s where the headache is coming from. I’m thinking the Requip dose may not be quite strong enough, but my stomach is not handling the dose I’m on now as well as I’d hoped.

I’ve sent off a description of my situation and my meds to ASK THE DOCTOR – National Parkinson Foundation to see what that doctor thinks would be the best course of action.

So I seem to go from a few good days to weeks of feeling not so good. I don’t know which doctor to call again, and that’s why I’ve written to the Ask the Doctor site, hoping they could give me some guidance.

PS. I just checked the blog with IE, and I see that it only has one column! I played around with the column width just for a moment, with no change at all. So that chore will have to wait for another day. Just bear with me, folks.

Posted in Uncategorized | Tagged beta Blogger, gas, headache, nausea, pain, Requip | 2 Replies

All’s Well with My World!! Glory to God!!

Day by Day with a Movement Disorder Posted on November 4, 2006 by DBNovember 4, 2006 9

I went to the Neurologist Thursday morning, and reported to him about the Endoscopy and Monday’s visit to the Gastroenterologist. I told him about the Zelnorm, and how it is definitely helping. I also told him about the hair loss, and he said if it continues he’ll try to help with it on my next visit. He agreed that it was time to take me off the Sinemet YAY!, and go on just the Requip, which is what I was hoping he would do. So I don’t see him again for three whole months! I feel like a free woman!!! Requip is taken with meals, so no more of this hour ahead stuff, and it doesn’t have any dietary restrictions, either, so I can eat what I want with it. My gastro doctor has put enough restrictions on my diet as it is, so I’m glad to not have more added to those from the PD meds.

Thursday was my DH’s birthday, but I couldn’t get him to spend any money on himself at all. I was hoping there would be a movie he wanted to see, but no such luck. Then I tried to get him to buy a book or a CD, but he wouldn’t do that, either. So…. I needed to get a pair of walking shoes, fitted by a knowledgeable salesperson, something I had researched on the Internet as being good for Parkinson’s patients, so we ended up spending money on ME LOL. He did let me take him out for a nice lunch, though.

I found out in my research that walking shoes don’t break on the sole in the same place that running shoes do. Since PD folks have problems picking up the foot and putting it down properly, with the roll that everyone else takes for granted, this is important. I was used to wearing running shoes, and I could tell the difference immediately. It really felt odd, and will take some getting used to. It changed my whole sense of balance at first, I was so used to the old shoes.

So this is a post I’ve been looking forward to making. I’m feeling good about my medicines, my stomach is improving, and I’m at a point where I feel like I have a handle on the Parkinson’s for now. Now I just want to proceed with life as normally as possible for as long as possible, enjoying every minute of it, knowing that the time will come when things will change. I feel so fortunate that this disease is progressing slowly for me. This warning time gives me the opportunity to glory in just being alive, and I thank God for every minute of it.

Posted in Uncategorized | Tagged balance, God, hair loss, Neurologist, Requip, walking shoes, Zelnorm | 9 Replies

Feeling Better and Optimistic

Day by Day with a Movement Disorder Posted on November 1, 2006 by DBNovember 1, 2006 6

The Zelnorm seems to be helping, plus I’ve made a few minor changes in the way I take some of my other medicines. I’m taking my first Protonix when I first wake up, and then I’m not drinking any water after that for a half hour. I can usually drink at least 8 oz of water, sometimes more, before it’s time for my PD medicines, an hour before breakfast. Then, a half an hour before I eat, I take the Zelnorm.

I spread it out again in the evening, taking the other Zelnorm a half hour before a very light supper. The other Protonix is about 8:00 PM, and that’s the last water I get for the day. I make every effort to get at least six 8 oz servings of water every day.

The Gastroenterologist doctors have taken me off of all milk products, sodas, chocolate, and gum, plus I can’t drink out of a straw or drink anything with my meals. I’ve finally adjusted to not drinking anything with my meals. I had already stopped the rest on my own back in September, when the GERD acted up, except for cottage cheese. Now I can’t have that, either.

The belching is still there, but the yucky feeling is gone, and so are the cramps and bloating. I’m eating cautiously, but much more normally and better quality, too, so my strength is returning.

Tomorrow I see the Neurologist to get the prescription for whatever dose of Requip he thinks will be appropriate for me. And it’s also my last day to take the Sinemet, I hope! So it’s a day to look forward to!!

Posted in Uncategorized | Tagged Gastroenterologist, GERD, Requip, Sinemet, Zelnorm | 6 Replies

Went to the Doctor’s Yesterday, Keeping Fingers Crossed

Day by Day with a Movement Disorder Posted on October 31, 2006 by DBOctober 31, 2006 2

I ended up calling both the Gastroenterologist and the Neurologist yesterday morning, as I really couldn’t decide which one to call. Both answered my message in a timely manner. The Neurologist said to take Mylicom for the gas, but the Gastroenterologist wanted to see me that afternoon. I couldn’t see my regular doctor, as he was out of town, but I was just glad to get the appointment.

Dr. M poked around on my stomach and abdomen and it was extremely painful. He asked a lot of questions, as you might expect, and, since I’ve been keeping a journal ever since I was diagnosed with Parkinson’s, I was able to give him some pretty accurate answers as to onset, etc. He agreed that it is more than likely the Parkinson’s meds that are causing the problem.

He gave me some samples of Zelnorm to try, plus a prescription if it seemed to be helping. He feels like that will help my digestive system work better and perhaps solve my problem. I surely hope so.

Posted in Uncategorized | Tagged Gastroenterologist, Mylicom, pain, Requip, Sinemet, Zelnorm | 2 Replies

Still Puny Today

Day by Day with a Movement Disorder Posted on October 29, 2006 by DBOctober 29, 2006 5

I wasn’t as sick today as I was yesterday evening, I don’t think, but I still felt pretty rotten today. I really didn’t feel like trying to go to church this morning, and we didn’t have the service at our church this evening, because it was the Fifth Sunday Singing. That rotates around among the churches in the area, and I wouldn’t have gone to that, anyway.

I’ve tried to do the research on the Internet today, to decide if it’s the Sinemet or the Requip doing it, since I got sick Saturday, after I had upped the dose of Requip on Friday. The dose is pretty good sized now, so it may be the Requip. That makes me think I need to call the Neurologist, rather than the Gastroenterologist, in the morning. I don’t think I can wait until my Thursday appointment. I’m losing weight awfully fast, because I’m really eating very little. I just don’t feel like putting anything in my stomach right now. It’s much too uncomfortable. And I’m getting weak again, too.

I’ll be glad when this whole medicine regimen is worked out, and my digestive system settles down!!

Oh, another side effect is definitely showing up. I’ve suspected it for some time, but now I’ve let enough time go by to be sure — I’m beginning to lose my hair. I wear it really short anyway, so it’s not going to be long before it’s noticeable on top. But this is a vanity issue, and doesn’t effect my ability to eat or move or anything important, so I can live with it, even though it would have been nice if this particular side effect had passed me by.

Posted in Uncategorized | Tagged bloating, gas, Gastroenterologist, hair loss, nausea, Neurologist, Requip, Sinemet, Sunday | 5 Replies

Still Increasing Requip Doses

Day by Day with a Movement Disorder Posted on October 23, 2006 by DBOctober 23, 2006  

I’m still increasing the dose size of the Requip very gradually, and this week I’m only taking the half Sinemet and Lodocyn twice a day. I’m not up to a full Requip dose yet, because my walking is not up to normal yet. I can still feel the trembling, particularly on my right side. I can’t balance on my right foot, either, and it’s still difficult to go down steps without holding on and being very careful. But it’s getting there. I see the Neurologist again the first week in November, so he should be able to tell by then just how much more Requip I need. Hopefully, when I get off the Sinemet, my tummy will settle down completely. I sure hope so.

I’m continuing to try to get just as much exercise as I can, and we’re eating as healthy as we possibly can, too. I’ve even started back to putting items on eBay. That’s something I just about had quit doing, while I was so sick with the colitis, and when I was having so much trouble walking. I need to get back to a regular routine, though. We can’t keep going to the estate sales if I don’t start selling some of our purchases, right?

Posted in Uncategorized | Tagged difficulty walking, eBay, exercise, gait, Requip, Sinemet | Leave a reply

Tai Chi Form Was Good Today – Tummy Wasn’t

Day by Day with a Movement Disorder Posted on October 17, 2006 by DBOctober 17, 2006 2

I’ve increased the dosage of the Requip, but I haven’t yet cut the amount of Sinemet, other than going to the half tablets four times a day. It really showed today when I went for my second Tai Chi lesson. I could tell the difference immediately, as I walked around the mat to warm up. Just walking was much easier. Doing the form was much easier, too, and I only had to stop once for a walking break. I was very pleased with my progress.

I’ve not been pleased with my stomach, though. Just drinking some water after we left the gym set my abdomen to cramping. After lunch, which was a particularly bland one, the gas got so bad that I had to take some Gas-X. I was really in a lot of pain way up in my chest. After I took my 4:30 meds, my stomach was very tender.

I’ll be cutting the Sinemet down to just twice a day on Friday, so hopefully my tummy will begin to get better then. If it doesn’t, I’ll have to call the Gastroenterologist again.

Posted in Uncategorized | Tagged exercise, Gastroenterologist, GERD, Requip, Sinemet, Tai Chi | 2 Replies

Results of Endoscopy and Ultrasound

Day by Day with a Movement Disorder Posted on October 11, 2006 by DBOctober 11, 2006 2

Yesterday I had the Endoscopy and Ultrasound to try to determine why I’m having such a terrible time with the acid reflux. I’ve been diagnosed with GERD now for several years, so I generally know what I can and cannot eat. I really thought it was the Sinemet that set off the reflux, but my Gastroenterologist wanted to be sure it wasn’t a lingering infection from the severe colitis I had been plagued with for so long.

Anyway, the tests showed nothing but irritation, not infection, and no sign of gall stones or anything like that, so it was the medicine after all. My own doctor had been called away, and one of his associates, who is not familiar with my case, did the endoscopy. His orders were to take the Parkinson’s meds with meals, which, of course, I’m not supposed to do. He also prescribed Carafate and a week’s worth of probiotics, and to continue the twice a day on Protonix. All this is designed to settle down my tummy and soothe my esophagus.

As for taking the PD meds with meals, I’m not going to do that, but I do eat crackers with them each time, to try to protect my stomach. Hopefully, by the time I’m weaned off the Sinemet and fully titrated onto the Requip, I won’t have the conflict with the meds, anyway.

If I still have problems then, I’ll have to try to get the Neurologist and the Gastroenterologist to talk to each other and decide what’s best for me. I don’t like being the go-between for doctors. They need to discuss this with each other!

I had read that Parkinson’s meds and Parkinson’s itself could cause a person to react differently to anesthesia. Well, there may be some truth to that. I slept until 6:30 PM yesterday evening after we got home from the endoscopy, and then I went back to sleep about 10:00 and slept all night until around 6:30 this morning!! I just about lost yesterday!! I’m fine today, with no ill effects at all.

Posted in Uncategorized | Tagged colitis, endoscopy, Gastroenterologist, GERD, Neurologist, prescriptions, Requip, Sinemet | 2 Replies

My Prayers Have Been Answered!!

Day by Day with a Movement Disorder Posted on October 5, 2006 by DBOctober 5, 2006 2

I’ve been going to doctors for years with strange symptoms that came and went, that they never could explain. Most of them were attributed to stress, which made sense, but I was never satisfied with the diagnosis. Today, the Neurologist officially gave us the diagnosis of Parkinson’s Disease, and even though that can mean years of debilitating illness, it doesn’t have to be that way. Every PD patient is different. I’m just so relieved to have an explanation for what’s been happening to me, particularly for the last year, that I have been celebrating all day long. Now I have an enemy I can fight!!!

Doctor S has given me the directions today for weaning off of the Sinemet and changing over to Requip, which is a dopamine agonist. There’s no way of knowing if I will be able to use it instead, without trying it, so the next 4 weeks will be another trial. Sinemet is the gold standard of PD meds, but it only works for a limited number of years, before the side effects cause as much trouble as the PD does. So they try to delay starting “younger” patients like me on it, if they can help it. (I don’t call 63 younger LOL)

We also asked about exercise, and he said for me to walk for 30 minutes a day for 4 days a week. From my reading I’ve found that Tai Chi is good for Parkinson’s patients, and I’ve already had some training. I went to the gym on the way home today and talked to the Sensei about giving me some private lessons two days a week for 30 minutes to help me build my balance and stamina again. And Dr. S said I need to do some weight bearing exercise, too, so I’ll be getting back on the mini trampoline, too.

Today is a new beginning for me in a very real sense, and I thank God that I have been diagnosed early, so I have time to improve my health as much as I possibly can. I thank you all for your prayers.

Posted in Uncategorized | Tagged diagnosis, exercise, Neurologist, Parkinson's, prayer, Requip, Sinemet, Tai Chi | 2 Replies

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