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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: Gastroenterologist

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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

Busy Busy Day

Day by Day with a Movement Disorder Posted on October 6, 2006 by DBOctober 6, 2006  

I walked to Daddy’s this morning …. the first time I’ve done that in about six months or so. He lives about a block or two away, I guess, but we don’t have blocks. DH came and got me, so I wouldn’t tire out too much.

We had a full day today, making our usual round of the Estate Sales, looking for the really good bargains. We did find a few goodies, too, and I got a lot of walking in. By lunch time I was pretty well worn out, but it was fun. After lunch we went to the thrift store and did some more bargain hunting and then headed to the other side of town for my Gastroenterologist appointment.

Dr. B doesn’t seem to think that the acid reflux I’m experiencing is due to the Parkinson’s medicines, so he’s scheduled an endoscopy and an ultrasound for next week, and I gave more blood today for a liver function test.

As caregivers, we always kept a spiral notebook log of everything that happened concerning our loved one, such as when we gave medicine, any behavior changes, any digestion problems, etc., and we always took it to the doctors. So today, for the first time, we used the new notebook we bought yesterday for the start of my log, writing down Dr. B’s directions for me to take my Protonix twice a day and not drink any liquids with my meals. We’ll continue to note anything out of the ordinary in the notebook from now on.

Posted in Uncategorized | Tagged appointments, endoscopy, Friday Date Day, Gastroenterologist, GERD, log, ultrasound | Leave a reply

My Arms Were Swinging This Morning!

Day by Day with a Movement Disorder Posted on October 4, 2006 by DBOctober 4, 2006 1

Such a little thing, that we take for granted, and don’t even notice … when you walk normally, your arms swing quite naturally at your sides, without any thought on your part. Well, that’s not the case for someone with Parkinson’s, and it hasn’t been that way for me, either. In fact, I have tried to consciously do it, and I couldn’t remember how to coordinate it at all.

Daddy has a long hall at his house, and I noticed for the first time this morning when I walked down it that my arms were swinging again, quite naturally. This is quite an accomplishment, and is sure evidence that the Sinemet is working.

I go to the Neurologist tomorrow, and I’m very excited about seeing him. I’m hoping for a definite diagnosis this time, so I can get down to the business of dealing with handling the meds and my GERD. I’m still having a lot of trouble with that, but I have the Gastroenterologist appointment Friday. It seems to all be coming together.

I’m praying for some definite answers. I realize that Parkinson’s is not something anyone would want to have, but knowing is better than not knowing, any day, IMVHO!

Posted in Uncategorized | Tagged appointments, diagnosis, gait, Gastroenterologist, GERD, Parkinson's, prayer, Sinemet | 1 Reply

Great Visit from DD

Day by Day with a Movement Disorder Posted on September 4, 2006 by DBSeptember 4, 2006 2

The TV’s back on, I’m back on the computer, the cat is satisfied that there are no strangers in the house, so everything’s back to the status quo.

It sure was wonderful, though, for today and yesterday afternoon on, to have our younger DD home for a quiet visit. I think it did her as much good as it did me. We didn’t go anywhere, and we really didn’t do anything. We just sat on the sofa and chatted, if the spirit moved us, or just enjoyed doing nothing.

She leads such a hectic life, between work and chauffeuring three active children here and yon from one practice to another, plus her part of the housework. Being still, with nobody hollering Mama! was probably quite restful for her. And I just enjoyed being with her. For all that it came because of serious illness, I did get to spend a lot of time with our older DD this last year, and I was missing spending some time with our younger DD, too.

Nothing has changed, leg wise. My digestive system continues to behave itself, and I’m eating normally now. Of course I’m still on the high powered medicines. I’m to report my progress to the Gastroenterologist’s nurse tomorrow, and she’ll tell me what to cut back on next.

We watched a little bit of the MDA telethon today. I thank God for two healthy children, who have grown into loving women, who are good people. Both have a strong faith in Jesus, and they are both married to Christian men. All three of our grandchildren are healthy, and they are saved, too. Yes, we have much to be thankful for.

For those parents who are struggling through the anquish of seeing that precious little one be diagnosed with a serious illness, my heart cries out for you. I can’t begin to understand how you feel, but I can pray for you. May God be with you today in a close and intimate way. Amen.

Posted in Uncategorized | Tagged Gastroenterologist, God, Love, prayer, prescriptions | 2 Replies

My Other Problem

Day by Day with a Movement Disorder Posted on August 25, 2006 by DBAugust 25, 2006 2

Part of what has made diagnosing all this trouble walking so difficult, and has slowed down being able to deal with it, is that I have finally finished an almost 4 month long battle with the dreaded diarrhea. Once I was finally diagnosed with colitis and put on some very powerful medicines, I did start to improve. But by that time I had already fainted, had stitches in my head, and gotten so weak it was all I could do to walk at all.

The walking difficulties came before the colitis did, though, so the basic problem still exists. Even now that my digestive system is getting back to normal, I still can’t walk normally.

My Gastroenterologist, Dr. B, is beginning to taper me off of some of the high powered medicines he had to use to get my system under control, so that may help me walk better, too. We’ll just have to wait and see. I’m to cut one pill back for the next 7 to 10 days and let his nurse know how I’m doing. Based on what I tell her, she’ll give me instructions on what to cut back on next.

I was able to map out an Estate Sale/Yard Sale shopping tour for us today that didn’t involve a whole lot of walking, and we both had a great time. Friday has been our Date Day ever since we retired, and it sure was nice to spend most of the day normally, even if I did have a doctor’s appointment.

I was hoping we would find a walker, but we didn’t. Dr. B fussed at me for not using one, and I told him we’d been looking for one. He made me promise him that I would get one, so I guess we’re buying a walker.

Posted in Uncategorized | Tagged colitis, difficulty walking, Gastroenterologist | 2 Replies

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