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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: dentist

Very Busy Week

Day by Day with a Movement Disorder Posted on February 10, 2012 by DBMay 9, 2016 2

We had quite a week this week. With two Physical Therapy appointments, a Neurology appointment, a Podiatrist appointment, and a Hygienist appointment at the dentist, we’ve been very busy. And I’m really worn out. I’ll be sure to not let the appointments end up like that again.

We go to the dentist regularly, but I’ve always had trouble keeping my mouth open wide all that time. Now I understand why, as my jaw muscles simply fatigue so much that it’s very painful. And that has set my neck into spasms in the past. I sure didn’t want that to happen right now, as painful as my neck has become.

I found out a long time ago that I could deal with any lengthy dental work better if I asked for a bite block. That wedges my mouth open without me having keep it open myself. So this time I asked for the bite block when I got my teeth cleaned, and it helped a lot.

The Hygienist said my gums were bleeding more than usual. But that didn’t surprise me, since I’m now on a rather large dose of Coenzyme Q10. It acts like Warfarin, a blood thinner. So I guess the next time I have work done, I’ll need to stop the CoQ10 ahead of time.

The Physical Therapist is spending most of my time there trying to relax my neck, shoulder, and back muscles with moist heat and the TENS unit, as well as some wonderful massages and some neck traction. As far as “exercise” I spend time in between the heat and massage sessions just “sitting”. That doesn’t sound like exercise to you I’m sure. But for me to sit unsupported with less pain in a regular chair without the neck brace is really exercise, because my neck muscles have to hold up my head all on their own. It was easier to do today than last time. So the little home exercises he gave me to do, plus what he’s doing at therapy are already helping a little.

He set my TENS unit for my current needs and gave me a diagram of where my hubby will need to put the electrode pads. Hopefully that will mean I can use the TENS unit more and depend on the muscle relaxer and pain meds less.

So I continue to do what I can to improve my situation as much as possible.

Posted in Exercise, MITO | Tagged blood thinner, Coenzyme Q10, CoQ10, dentist, exercise, muscle spasms, pain, Physical Therapy, TENS, weakness | 2 Replies

YARD SALE today!!

Day by Day with a Movement Disorder Posted on November 1, 2008 by DBMay 25, 2016 7

Well, I’ve worked myself ragged this week helping move things out to the garage for our big yard sale, and now comes the moment of truth! Did we set the prices too high? Are they too low?? Should be a fun day, with beautiful weather.

Once hubby decided it was time to have one he really got busy, and there’s no way I could have done this on my own. I’m pretty sore from helping to move furniture around, plus lots more walking and lifting than I have been used to. It’s been good for me, as long as I didn’t over do it. Only time will tell on that one.

We managed to get quite a few of the boxes from my parents’ house out there, so that will free up some space in the house. Anything to cut down on the clutter will make it easier to get the rest of the last couple of years accumulation of stuff under control. I just have not felt like cleaning, and poor hubby has been doing the best he could to take care of me and take care of the house. I won. House lost. I’m sure not complaining, as he has done all the laundry for years, fixes meals, and waits on me like I was a princess. He’s the love of my life, and no one could ask for a better helpmete.

We swapped out recliners, bringing my mother’s recliner in the house and putting mine in the yard sale. Hers is a much smaller frame chair and really opened up the living room. I’ve slept in that recliner for several years taking care of Mama and Daddy, so I know how comfortable it is. It was a chore to make the swap with such bulky furniture, but I am glad we did. That is as along as our backs don’t complain too much!

We went to the dentist this week for our regular cleaning appointment, and this was the first time I had been back since the new meds and new diagnosis. I was fine until the next day, when I woke up with a very sore jaw. The muscles on both sides were aching from keeping my mouth open so long. At one point yesterday the right side started up with spasms. It was weird, because it made my eyeglasses move! I yawned some big yawns and did some exaggerated mouth stretches and managed to get it to stop, but that was another first for me. I hate to think what it would have been like if I were not on the Primidone. I probably would have bitten her hand off right there in the dentist chair!!

I’m back to the early rising again, and the change from Daylight Savings Time tomorrow is going to play havoc with my sleep for awhile, too. I get a lot done in the wee hours of the morning, but it sure makes me sleepy early in the evening. I’m like a baby getting my days and nights mixed up. But no amount of just laying there will help me go back to sleep, so I might as well get something productive done with my time, right?

One other thought before I put this rambling post away. I made the signs for the Yard Sale, and was very pleased with the results. It’s amazing how steady my hand is now compared to the way it was before the Primidone. I took drafting for 3 years in high school and taught handwriting in elementary school, so neat printing is something I used to be very good at. I had reached the point that my handwriting was difficult to read, let alone pretty. But this week I was able to free hand draw the letters and then go over the lines with a Sharpie and keep the ink where I wanted it!!! It was a wonderful moment for me, because it says so much about how much I have improved over the last few months.

Well, I’ve rambled on – not too surprising considering I’ve been up since 2AM – but feeling really good about my accomplishments this week. It may take a year, but I am going to win out over this messy house!

Posted in Quality of Life | Tagged care giving, coordination, Daylight Savings Time, dentist, facial exercises, house cleaning, insomnia, muscle spasms, myoclonus, Primidone, Quality of Life, Yard Sale | 7 Replies

Didn’t Know that Dry Mouth is Something to be Concerned about

Day by Day with a Movement Disorder Posted on October 29, 2008 by DBMay 25, 2016 2

I had my normal cleaning appointment yesterday and was careful to give my Dentist the new diagnosis and meds I was on. I told him that I had read that it was particularly important that I tell him I was on Triavil. I had assumed incorrectly that the caution had to do with using gas for dental work. But my dentist says that is not the reason for needing to know about it. He said that any meds or conditions that caused a dry mouth left the teeth much more open to rapid decay. It seems that saliva does a lot toward keeping the mouth bacteria population under control.

He suggested a Fluoride mouth wash, but NOT one that had alcohol in it. And he said that may be too strong for some people, and that it could cause gum irritation. There were alternatives that he could offer, but not over the counter products. So I will try this first and see how I do.

I told him that I had stopped using the TAP device, since the change in diagnosis, and because I was leary of using it while my GERD was acting up so much. I could not chance gagging and choking on the reflux acid that would back up into my mouth.

It did seem to stop the mouth breathing for a long time, but I have not been sleeping as well just lately, so I was thinking about trying it again. He said I needed to use it at least once a month regardless, because teeth tend to move ever so slightly over time. If I didn’t wear it often enough it would reach the point that it did not fit any longer. And I certainly don’t want to spend that money again sometime in the future, when I could have prevented it.

So I’ve been up most of the night tonight, just the way I used to do. This has been gradually coming on for the last few weeks, but tonight was the worst it’s been in a very long time. I’m actually wearing the TAP right now. We decided it made more sense to wear it for awhile while I am awake, until my mouth gets used to it again. Right now if feels like I have some huge thing in my mouth, but I’m sure it will become much more comfortable, just the way it did last time, if I work at it.

I have been noticing an increase in the way my brain and emotions cannot handle any kind of time pressure, no matter how slight. And every time I try to fool with those stupid Digital Converter boxes and try to tape a program it really shows up big time. I was so frazzled last night trying to get it set up to tape a program that I don’t think I could have told you my name!! It’s a horrible feeling, and one that I prefer to attribute to the med side effects, rather than a true sign of dementia onset. It’s hard to get that thought completely out of my mind, though, after caring for my mother so long before she died with Alzheimer’s. As I have mentioned in some other posts, my family’s neurological history is not pretty.

I’m continuing to try to up my activity level a little bit each day, but I still can only work in short spurts. After that I need to do something sitting for awhile, which for me usually means working on the computer.

And I’ve gone back to doing the neck exercises each morning (I wasn’t supposed to stop), since I’ve been getting the tingling nerve signal again that means the degenerated cervical disk is pressing on a nerve. I don’t want to end up in the stiff and painful situation I was in earlier this year, so for now at least I’m being a good girl and following doctor’s orders. It’s just hard to make myself faithfully do them when I’m feeling good. Yes, that’s childish and foolish. Guilty on both counts. But I’ll try to be better about continuing them this time, even when it stops bothering me.

It takes at least 21 times to build or break a habit, but it’s worth the 21 days to have a better Quality of Life!! So, old habits have been revived, and hopefully continued. This will give me something positive to work on each day.

I intend to ENJOY this Holiday Season, and not just survive it, the way I have the last few years.

Posted in Quality of Life | Tagged dental appliance, dentist, GERD, insomnia, Physical Therapy, political ad, prescriptions, Quality of Life, side effects, Sleep Apnea, TAP | 2 Replies

Took a Rest from TAP

Day by Day with a Movement Disorder Posted on October 17, 2007 by DBOctober 17, 2007 10

We went to the dentist yesterday for our regular cleaning appointments, and I took the TAP paraphernalia with me. I have noticed a faint clicking sound when I talk, which made me think it needed some type of adjustment. He agreed, and was able to add a little blob of something to the back surface of the mouth piece. It is supposed to equalize the pressure on my jaws for holding my mouth open for all that time. I had the denture parts in and out of my mouth several times before we left.

But when I tried to get them on last night, I couldn’t get the dental appliance on my teeth. After considerable finagleing, I managed to get the upper and lower part in, but then I had trouble latching the hook in front to connect the front and bottom sections together. So I took them back out and checked to see what the setting was marked on the device. That’s when I knew something was wrong with it, as it was way too high a setting for me. I changed the length of the mouth gap with the key that is provided until it felt comfortable again.

But once I had it in my mouth, I realized that some of the material he had used to build up the back of my jaw a little bit had landed in the wrong place, too. This has left a rough spot right where my tongue can get to it. Now, you may not be like I am, but if I have a sore or anything else that is a temporary visitor in my mouth, my tongue will rub on it compulsively.

That rough spot sent my tongue into obsessive orbit, every time I realized I was touching it. So, I didn’t sleep in the TAP last night, and I’ll have to see Dr. Deep today to get it smoothed out.

I used the cane all day yesterday, as was extremely wobbly, nervous feeling, and generally feeling like I have Parkinson’s, but managed to do everything that I wanted to do for the day. We did get the handicap placards, which will be perfect for those days when I have trouble moving, even with the cane.

Posted in Uncategorized | Tagged dental appliance, dentist, insomnia, Sleep Apnea | 10 Replies

Impressions are Made

Day by Day with a Movement Disorder Posted on September 20, 2007 by DBAugust 14, 2019 6

I went on a feverish research marathon on the internet night before last, and printed out a bunch of pages of different dental appliances for sleep apnea. I also found several pages explaining exactly how to talk to my Blue Cross insurance people in order to have a fighting chance of getting this thing covered by my medical insurance. This sort of appliance does not fall under dental, as it really has nothing at all to do with the teeth. I printed a list of possible side effects, too, just in case I had any problems. Troubles are always easier to cope with for me, if I know I’m not the only one having them.

So, armed with all my paperwork, I went to my own dentist yesterday and had a long talk with him. I really like him, and have been going to him for many years. In fact, he has crowned almost every tooth in my head! LOL That’s just as well, too, as this appliance would not work if my teeth were not strong and in good condition. But, I digress. I was pleased with what he told me about how he did this process, but even more pleased when he brought my very own hygienist in to talk to me. It seems that she uses the very appliance that he was recommending! She explained that she could move her mouth around with it on, and that was something I was particularly concerned about.

She also told me about the exercises you have to do each morning when you take it out. If you don’t do that, you will pull your bite all out of alignment, not to mention have a lot of jaw pain. That’s not a problem, as I have to “exercise” my face muscles every day anyway, as part of my Parkinson’s exercises. These are designed to forestall the mask look of PWP. We lose the ability to use the fine muscles that control facial expression, and these exercises are supposed to prevent that. I don’t know if they will, but I intend to try, anyway. So, adding in some jaw and mouth exercises will be easy enough.

So, I did it. I had the impressions made and paid out 1,000 big bucks right there on the spot. That’s not cheap, by any means, and it certainly means I’d better be right about this one!! If you thought I was stubborn about trying to get used to the CPAP, just wait and see how stubborn I can be with that much of my own money invested in it! LOL I really feel like this is something I need to solve the insomnia and resultant brain fog I deal with every day now.

Of course, I will do everything I can to get reimbursed by my insurance company, but I had already decided I would do it, covered or not. I did call the insurance company yesterday to find out what forms I needed to get this approved, and then my Sleep Disorder doctor’s office to ask them to get Dr. A to fill them out. So I’ve started the ball rolling, anyway. I made sure I got the medical code for this appliance from the dentist’s office, too, so I could use that in my argument for coverage, if needed. I would not have known to do any of this if it hadn’t been for a dentist somewhere in California, of all places, who had a whole page explaining exactly what to do to get this appliance covered. Ain’t the internet great?

While I’m waiting the three weeks it will take to get this in, I’ll work to get the skin around my mouth back in good shape. Those masks have really done a number on my Acne Rosacea, with dry irritated patches all along my mouth on both sides down to my chin and across. My skin usually takes awhile to heal, once I get this irritated. I quit wearing makeup years ago, because everything broke me out, and I have to be very careful about any soaps or medicines I use on my face. That alone made me a poor candidate for cpap. Adding in the degenerated disks, which required that I be able to move around in my sleep, and I hope I can make a good case that using this “custom fabricated device” is a “medical necessity,” as the insurance company requires. Both of those conditions are documented in my medical records, so I think they have a fight on their hands if they try to deny this claim. I’m loaded for bear, and ready to take them on, but, hopefully, they will agree and I won’t need to fight them. I really don’t need that extra stress. But, what will be, will be.

Getting rid of the cpap frustration and looking forward to getting the dental appliance has improved my mood considerably, so I remain positive that everything will work out for the best. I do covet your prayers and good thoughts that I will find adjusting to the mouth piece to be an easy transition.

The device I’m getting is called a TAP, which stands for Thornton Adjustable Positioner, and you can read all about it here and here, if you’re interested.

Posted in Uncategorized | Tagged brain fog, C-PAP, dental appliance, dentist, facial exercises, insomnia, insurance, Parkinson's, prayer, Quality of Life, Sleep Apnea, Sleep Disorder Specialist | 6 Replies

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