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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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Went to my Neurologist yesterday

Day by Day with a Movement Disorder Posted on February 18, 2009 by DBMay 24, 2016  

I saw my Neurologist for my 6 month checkup yesterday and got a few questions answered. I was right that my brain fog is coming from the Primidone, and not from the EM itself. He was also quick to agree with me that the Neurontin had caused the terrible nightmares and grogginess that led me to go back on the Primidone. He said there’s really nothing better that I could take that might not constipate me so badly, and was surprised to see all that I take each day just to keep my digestive system working properly.

I described some specific problems I am having defecating, and he said I am experiencing Dystonia.

We told him how exhausted I get by early evening, and I asked for a prescription for some Physical Therapy, which he quickly gave, so that I could be monitored while I try to increase my exercise level. I may not have a doctor watching me all the time the way they do on the Biggest Loser, but at least I won’t be so scared that I am doing myself harm and will be more likely to push myself a little harder. I have an appointment next week for an evaluation and expect to go several times and then wait several weeks and check in. I’d like to do that all this year if my insurance will allow it.

I did forget to ask him about the dry skin situation I deal with year round, and there’s something else I meant to ask him about, but now I can’t even think of it! LOL!! It will pop into my head when it’s good and ready.

We went out to eat afterward, but it started sleeting just as we got to the restaurant, so we came straight home after we ate.

I’ve gotten behind posting requests for help on the Search Service, since we went to see our younger daughter and her family this weekend. I enjoy seeing them all, and really miss having both our daughters close to us, but trying to sleep anywhere but in a recliner is a real problem for me. It’s taken me the last few days to get my back and neck settled down again. I cut back on my exercises the last few days, since I was waking up with so much back spasm going on. But I did 2 sets of 10 of everything today and used the mini trampoline yesterday and today. Two steps forward and one step back seems to be the norm these days.

So today I have been trying to catch back up with the posts on the Search Service, but it will take awhile to get caught up. I don’t know about other retired people, but I seem to stay busy all day long. I’m not complaining, mind you, as I would be bored out of my skull with nothing to do.

I continue to add to my house cleaning routine, and some parts of the house are actually staying straight most of the time now. Well, notice I said “some”! Certain places seem to be the dumping ground for things I straighten up from other rooms, but don’t know what to do with yet. So some parts are getting consistently cleaner, and others are getting progressively worse. Rome wasn’t built in a day, right?? It took years to make this mess, and it’s going to take time to correct it all.

I’m feeling good about the progress I am making on several fronts, and looking forward to seeing the Physical Therapist next week. Now let me get back to posting!

Posted in Quality of Life | Tagged Dystonia, elimination difficulties, exercise, exhaustion, house cleaning, Neurologist, Neurontin, Physical Therapy, Primidone | Leave a reply

One Thing about a Movement Disorder – It Never Stays the Same

Day by Day with a Movement Disorder Posted on December 5, 2008 by DBMay 24, 2016 4

We had an absolutely wonderful Thanksgiving together as a family, but of course I was pretty tired afterward. So, as I had planned, I waited until Monday to change back to the Primidone. Not only was I jerking more with the Neurontin, but I had noticed a marked increase in really bad nightmares. To compensate for the lack of sleep at night I have started taking 30 minute naps during the day if I get sleepy.

Adding the extra dose of MiraLax around 5PM in a glass of prune juice is helping keep the constipation at bay at least for now, but the gas is still all but overwhelming. I’m also getting 3 or 4 prunes a day with lunch every day we eat at home.

The nightmares have not stopped, as I had hoped they would when I went off the Neurontin, but at least the jerking has subsided again. I’m going to have to work harder to get my mouth used to the TAP again, so I can get a decent night’s sleep.

I got up about 12:30PM this morning, jerked wide awake by a particularly scary dream, but did manage to go back to sleep about 2AM I guess. Now here I am awake again at 4:30. So I’ll be running on fumes today. At least, since it’s our Date Day I can sleep in the car on the long stretches. I could really tell that less sleep was taking its toll on me yesterday, as I felt old and tired all day.

You know what it is like to sit in a car and tap on the glass to talk to someone outside??? Well, that’s the way I feel these days. I feel like my young self is trapped inside this old decrepit body, tapping away trying to make myself heard. Not a very good simile, but it will have to do for now. My brain still feels like I’m a young woman, but my body seems to get older and older by the moment. All day yesterday just getting up off the sofa seemed to be enough to exhaust me. So I know I need to get better quality sleep, and more of it, too.

We’re in our Christmas rush time for selling our Plush Animals and Dolls, so that keeps me moving, whether I feel like it or not. Hubby tries to leave all the getting of items out of inventory up to me, as it forces me to move around more than I probably would otherwise. I get all the packing materials together, print out the packing slip, and weigh the package. Then I print out the postage.

But then he takes over, double checking that I have the right toy going to the right person and checking to be sure everything is as it should be. He seals the packages up and puts the postage on. I was making too many mistakes, and this seemed like the best way to keep me active both physically and mentally, and still not get so frustrated with every mistake I was making. It makes me so mad when I can’t find a toy in the box it should be in. We have had to refund money several times because I couldn’t find a toy that my records showed we should have in stock. Keeping track of all the “paperwork” gets to be overwhelming at times, but I know it is keeping my brain active.

I was very pleased with myself about one thing I accomplished this week. I have noticed that it is very hard for me to learn how to do something completely new these days. So I was very happy with myself when I successfully followed the directions to make some java script to use on our Shopping Cart page. Yeah Yeah… I know that’s geek talk, but it is important to me, because I have never done any writing of java scripts before. I learned how to do something totally out of my realm of expertise. I’m patting myself on the back for that!

I continue to do my morning exercises, including my own version of Tai Chi for the balance impaired, although I didn’t do any this morning. Just getting in and out of the car and walking around at the sales today will give me plenty of exercise for today. I will do my neck exercises, though, as usual. They don’t take long and I sure don’t want that frozen painful neck situation to come back if I can help it.

So, this week I have felt terribly old and decrepit, but also beaming with pride at my successful creation of some java script code. I’ve changed back to the Primidone and the jerks have settled back down, and at least for now I have the constipation under control.

All in all, I’d say it’s been a good week.

Posted in Quality of Life | Tagged elimination difficulties, exercise, exhaustion, insomnia, Neurontin, Primidone, Tai Chi, TAP | 4 Replies

Constipation is Better – Jerking is Worse

Day by Day with a Movement Disorder Posted on November 27, 2008 by DBMay 24, 2016 4

It looks like the addition of the extra dose of Miralax in a small glass of prune juice is helping with the elimination problems. I’ve also changed from Primidone to Neurontin for the Myoclonus. It doesn’t work quite as well as the Primidone did, but it’s not supposed to have constipation as a severe side effect.

I’ve noticed a lot of inadvertent double letters as I type. My finger just jerks back down without my meaning for it to. I’ve mistakenly double clicked on a lot of things too. So I have a trade off of a little bit of jerking in exchange for a more comfortable elimination process. I’m happy with that trade off. But probably next week, after things are back to normal after Thanksgiving, I will try the Primidone again for a week and see how I do with that. It’s my body, so it will be up to me to decide which result I can live with .

Our daughter had planned on having the Thanksgiving meal at her home, but she and her hubby have been sick with some kind of stomach flu for the last few days. They are still planning on cooking everything, but she didn’t feel like cleaning her house for company. So, we will be having everyone here at our house tomorrow. I’ve worked off and on for the last week cleaning, and I worked more today than I have been able to do in a long time. I’m tired, but it’s a good tired.

It was the Friday after Thanksgiving last year that Daddy fell. We never knew if he had a small stroke or just fell, but he was never the same after that. He died this March at the ripe old age of 102. It’s a momentary sad thought, but he’s no longer trapped in an old man’s body and, after almost 40 years of gradually becoming more and more vision impaired, he’s now seeing some very glorious sites. That wonderful thought keeps this day from being a sad day for me.

We’re looking forward to seeing our whole family together. I have so much to be thankful for.

Posted in Symptoms | Tagged elimination difficulties, Neurontin, Primidone, Thanksgiving | 4 Replies

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