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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: EPA

Firefighters with Parkinson’s

Day by Day with a Movement Disorder Posted on October 26, 2008 by DBNovember 5, 2017  

The PD Warrior recently did a post about the high incidence of Fire Fighters with Parkinson’s Disease. Where the occurrence of Parkinson’s Disease among the normal population is something like 3 to 4 per 1,000 people, the incidence among firefighters, according to the information on this blog is that these brave men and women, who are exposed to all sorts of toxic gases and materials during their daily work environment get Parkinson’s at a rate of 30 per 1,000. Ten times the normal number!!! And that’s just for PD. Add to that the number with other types of Neurological Disorders and this is flabbergasting, to say the least, and should receive more attention than it does. In all my reading about PD and other Movement Disorders, I have never noticed any mention of firefighters.

So here’s a plug for a great site (although my brain has trouble with the “firey” style of the blog) that everyone should read!

Firefighters with Parkinson’s.

Posted in Parkinson's | Tagged EPA, Movement Disorder, Parkinson's, PWP, Quality of Life, toxic chemicals | Leave a reply

Starting Requip Again – Stopped Physical Therapy

Day by Day with a Movement Disorder Posted on May 8, 2007 by DBMay 8, 2007  

Yesterday was my last time for Physical Therapy on my knee for now. I called my insurance company, and they only allow 15 PT visits a year, unless THEY approve the extra ones, and I’ve used 7 of them already. So, I figured I’d better leave myself with some, in case I have other problems before the end of the year.

I asked her about using the mini trampoline we have, and also a little stepper and an exercise ball. Her concerns had to do with balance, but other than that, she thought they would be fine. She said the stepper was a particularly good one for a PWP, because of the repetitive alternating motion. Of course she cautioned me to go slow about adding minutes to it, and to rest every other day or every two days. She’s very emphatic about reminding me that the Parkinson’s means I have to rest my muscles more than other people would need to. But she emphasized that I need to be on a regular exercise program the rest of my life.

I did start on the Requip again yesterday. Even though I’ve been doing all this exercise and my legs are definitely stronger, I’m still walking very slowly. It’s called Bradykinesia, and it’s always been my main Parkinson’s symptom. Requip has some pretty uncomfortable side effects, as most of the PD meds do, it seems, so I really tried to do without it. But I just don’t think the Zelepar is enough on its own. Dr. S. told me to use my own judgment on starting it back, so I’ve decided it’s time.

I did get nauseated before lunch yesterday and I had a headache last night. Plus, this morning, I got light headed while I was taking pictures for our eBay listings. I stood still too long, I guess. Anyway, I had to stop and sit down, as I broke out in a cold sweat and could feel myself getting woozy. The worst side effect for Requip, though, is compulsive behavior – if that starts up again I won’t be able to use it, for sure.

The PT worked me pretty hard yesterday, knowing it was my last visit, and I was very uncomfortable last night. I ended up taking 2 Lortab to stop the pain in my legs. At least that meant I got a good night’s sleep! They don’t seem to be as sore today, so that’s good.

I’m having the MRI today at a different place, called a Stand Up MRI. That will be a new experience. It makes me wonder if that was chosen to get a different view of my knee, as there is a regular tunnel MRI place in the same building with my doctor.

I just realized that I forgot to call the Orthopedist’s office yesterday to make the follow up appointment. I’m really having a hard time remembering to do everything that needs to be done nowadays. Hubby tries to help me keep it all straight, and I make lists like crazy. I’ve even started using the task reminders on my Outlook program to try to help. Of course I have to remember to put the reminders in the program LOL!

I got an email from the other PT patient who has Neuropathy last night, and of all things, we live in the same town!!! I’ll be doing some research on her particular type of Neuropathy and adding links to it, if I can find anything specific for her. I wonder if she lives anywhere near the EPA toxic site, the way we do????? She’s in far worse shape than I am, and the doctors don’t know what’s causing her problems, either. And she’s young. I’ve added her to my prayers, and I hope she and I can continue to correspond.

It was a day of changes yesterday, but hopefully they will be good changes. Only time will tell.

Posted in Uncategorized | Tagged balance, Bradykinesia, difficulty walking, dopamine agonist, EPA, exercise, knee, MRI, nausea, pain, Parkinson's, peripheral neuropathy, Physical Therapy, PWP, Requip, toxic chemicals, Zelepar | Leave a reply

The Bolt Factory

Day by Day with a Movement Disorder Posted on August 21, 2006 by DBAugust 21, 2006  

I guess I’d better explain the Bolt Factory significance, in case I decide to share this blog. We live within a quarter of a mile of an EPA designated toxic site that has been cleaned up. Trouble is, we lived here all the years it was contaminating the area with heavy metals. Now I’m having neurological problems. In our little neighborhood there has been a high incidence of Alzheimer’s, Parkinson’s Disease, and all kinds of cancers. My own mother died of Alzheimer’s Disease. On the other hand, my Daddy is 101, and the lady across the street just passed away at 100.

So, for what it’s worth, I really do need to remember to tell Dr. S about where we live. All the information about the heavy metals that were found here are on the Internet, with the kinds of problems they can cause.

Posted in Uncategorized | Tagged EPA, toxic chemicals | Leave a reply

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