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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: fake tremors

Dyskinesia Wears Me Out

Day by Day with a Movement Disorder Posted on May 28, 2008 by DBMay 30, 2016  

Saturday was a fairly good day, but Sunday was not good at all, with lots of dyskinesia. By the time Sunday School was over, I was twitching and jerking pretty badly. The more my mouth jerks when I am in public, the more stress and self consciousness I feel, which just feeds more jerking. The chewing gum helps up to a point, but it does not stop it, plus my jaw gets tired after awhile from the chewing.

My walking becomes much more unsteady when I am going through one of these episodes, too. Nothing I did helped much on Sunday, but then Monday wasn’t bad at all, by comparison. I managed to get past 5:00PM again with almost no spasms. Then it came on gradually.

Yesterday, it started as a small lip twitch and jiggly foot in the morning and progressed to such constant movement by the end of the day that I was actually tired from all the muscle movements. My face ached, my toes and fingers were cramping, and I was generally miserable. I tried going to sleep early, just to get away from it, but I wasn’t sleepy. So, I took a long, hot shower. That helped considerably, relaxing the worst of the muscle movements. But by the time I was dressed again and my hair was dry, I was beginning to twitch all over again forcibly. That was the last straw. I took 2 Benadryl, and conked myself out. That helps me in two ways, as it helps to dry up the patches of poison ivy I continue to have, and it puts me to sleep rather quickly.

I’m still a little woozy feeling from the Benadryl, but other than that, I am nice and calm this morning. It almost looks like an every other day pattern, but there really is no pattern. I can’t determine anything I am doing, or not doing, that causes the difference in the days. I’ve decided to try to graph the strength of the Dyskinesia, as it is called, for maybe a week, and see if I can spot anything I am doing that makes it better or worse.

I’m writing this with only tiny little signs of the jerking and twitching, so I hope for a good day today.

Posted in Myoclonus | Tagged Benadryl, fake tremors, muscle spasms, poison ivy, Tardive Dyskinesia | Leave a reply

Back on the PD Meds

Day by Day with a Movement Disorder Posted on December 24, 2007 by DBNovember 20, 2016 8

I considered not going back on the meds, but we will be out of town for Christmas, and it didn’t seem prudent to have even a slight possibility of ending up in a strange ER. So I stuck with the original plan, and went back on the full PD regimin yesterday afternoon.

It was very interesting to see what my right foot did last night when I got ready to go to sleep in my recliner. It must mean something, and I wish I had a video of it to show my doctors.

The toes and ball of my foot cramp sometimes very painfully, and no amount of pressure will make it stop. Hubby will get up and stand in front of my recliner, and I will push my foot into his thigh, which normally stops the cramp pretty well. But last night, each time he released the pressure, the cramp started again. At one point, when I thought it had quit, I moved my leg away from the pressure, and my foot went into this exaggerated flopping back and forth, up and down, and sideways. I had no control over it at all. It didn’t hurt, and it looked so funny that I started laughing. Hubby thought I was doing it on purpose, and was surprised when I told him I wasn’t. You should have seen the look on his face. Then, in an attempt to stop it, I pressed my foot into the recliner. At that point, my knee started bobbing up and down, as if to say, “You can’t stop ME!” It was so funny that both of us ended up having a great big laugh out of it all. And then, just as suddenly as it had started – it stopped all on its own.

So again, I ask myself – if not Parkinson’s – then what in the world could make my body act like that????? The only explanation that makes any sense to me is that this is all psychosomatic, and there is nothing really wrong with me at all. No, I don’t think I am going crazy, but the mind can play terrible tricks on the body. Just think about the Stigmata – that someone’s palms could bleed. I know there is such a thing as hysterical paralysis, so I don’t put anything past what my mind could be doing to control my body. Yes, I spent the last 10 years or so under great stress, taking care of parents and our older daughter. And, our daughter was hospitalized with, of all things, Peripheral Neuropathy! Not that my symptoms look like she did, but it does seem odd that I would be diagnosed with a neurological disorder not too many months after taking care of her.

I’ve had this conversation with myself before, about this whole thing possibly being psychosomatic, way back in August of 2006. And here I am, a year and a half later, still wondering.

Posted in Uncategorized | Tagged diagnosis, fake tremors, muscle spasms, pain, Parkinson's, peripheral neuropathy, psychosomatic, Quality of Life, stress, symptoms, tremors | 8 Replies

Michael J. Fox Ad Controversy Makes Me Mad

Day by Day with a Movement Disorder Posted on October 27, 2006 by DBNovember 14, 2018 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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