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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: political ad

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

Michael J. Fox Ad Controversy Makes Me Mad

Day by Day with a Movement Disorder Posted on October 27, 2006 by DBDecember 17, 2021 8

We didn’t watch the World Series, but we did hear about the stink Rush Limbaugh caused when he accused Michael J. Fox of faking his tremors in a political ad he did, endorsing a candidate who is pro embryonic stem cell research.

YouTube – Michael J. Fox political ad

Fox News Story about Limbaugh’s accusation

Michael’s Response to Limbaugh

Limbaugh later apologized, but, IMVHO, that’s just not enough to put out the fire that he started.

Fox developed Parkinson’s at a young age, and he has a particularly aggressive form of it, as well. He’s already had surgery, and you can be sure that he’s under the care of the finest doctors available. Still, his condition continues to worsen.

For any public figure to go on record casting doubt over the reality of the severity of his condition is a disservice to all those who suffer from PD, or from any disability, for that matter. And to think he mocked Michael and imitated the way he was moving … why that’s just intolerable!

We all have our good days and bad days. Just because I’ve been walking just fine, doesn’t mean I won’t need the cane to take the very next step. That’s just the way Parkinson’s works. I’m just newly diagnosed, and this situation made me very angry. I can only begin to imagine how someone whose tremors are disabling must feel, reading about all this. I think I would be outraged.

One writer suggested that Limbaugh should make a huge donation to the Fox Foundation, if he really wants anyone to believe his apology is genuine. At least that way, he’ll do some good and, maybe, somewhat balance the harm he’s done.

Posted in Uncategorized | Tagged fake tremors, Michael J. Fox, Parkinson's, political ad, Rush Limbaugh | 8 Replies

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