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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: toxic chemicals

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

Heavy Metals Tests & Access Problems

Day by Day with a Movement Disorder Posted on September 12, 2006 by DBSeptember 12, 2006  

Yesterday we turned in my 24 hour urine catch to the lab for the test for heavy metals. Since we live within a quarter of a mile of what the EPA called one of the worst toxic waste sites they ever had to clean up, we’re very anxious to hear the results on that one. Obviously, there are several metals that could cause the PN, so this is a key test. I started to just let DH take the container back by himself, but it’s a good thing I didn’t. They had such a hard time drawing blood Thursday that one of the vials had clotted, so they had to draw more blood from me yesterday. That would have been terrible, to go to the doctor next week and not have all the tests completed.

I’m finding the oddest places that I’m having trouble navigating with the walker. The door to the bathroom at the hospital lab was so heavy that I couldn’t get it open and get the walker through it, too. DH had to get up and hold the door for me. Then, when I got in the bathroom, there was no hold bar — in a HOSPITAL bathroom! I couldn’t believe it! We got the phone number of the maintenance department from the lab people. That was the only number they could give us, figuring they would know who we would need to contact to complain about the bathroom not being compliant.

We went to an old Wendy’s for lunch, and it took 2 people to hold 2 sets of doors open at the same time to get the walker through the vestibule doors, the way they opened on each other. That’s crazy!! Nobody in a wheelchair would be able to get in that place alone. They’re going to get a call, too. We’ve been talking to managers for years about maneuverability issues we saw pertaining to wheelchairs, but we’ve obviously missed some in places we never took my mother. You just don’t notice things like that until you are confronted with them yourself.

Posted in Uncategorized | Tagged accessible, eating out, peripheral neuropathy, tests, toxic chemicals, walker | Leave a reply

Diagnosis is Taking Too Loooooong!!!

Day by Day with a Movement Disorder Posted on September 8, 2006 by DBSeptember 8, 2006  

I went to the Neurologist again yesterday, and was disappointed with the visit, to tell the truth. I know he’s a busy man, because we purposefully picked the very best Neurologist we could get. But I feel like he’s so busy that this whole process of diagnosing is dragging on interminably, because the appointments are so far apart, and so little seems to be accomplished each time I see him. It’s that last part that has me disappointed.

He wanted us to get the full study from the doctor who did the EMG, so he could read through it. If his nurse had called us prior to yesterday’s visit, we could already have gotten it, and he could have had that already done. As it is, he still doesn’t know if he will want me to undergo that test again, so I’m feeling very frustrated. We went and got the report and brought it straight back to Dr. S’s office, and I have another appointment in two weeks.

He did say, after looking at the MRI that we had taken to him of my last lumbar vertebrae series, that he now agrees with the Orthopedic doctor that my Peripheral Neuropathy was not caused by my Degenerative Disk Disease. So, it’s not my brain, and it’s not my back.

He had a lot of blood tests done, and I have to do a 24 hour urine catch on Sunday/Monday and return the jug to the lab Monday. That’s to test for heavy metals, since we do live within a quarter of a mile of an EPA toxic waste site that’s cleaned up now, but we lived here many of the years the factory was in operation.

It’s looking more and more like he thinks I have Parkinson’s, even though I’m not exhibiting a lot of the typical symptoms.

Of course, I’m still holding out that it’s just from all the stress I’ve been under and still am under. I’m writing this post from my 101 year old Daddy’s house. He usually stays by himself, and I come in to fix breakfast and supper. Meals on Wheels brings lunch. We call him during the day, and that is usually enough, but he was awfully weak this morning and hurting in his back, so I’ve stayed with him today, and I’ll spend the night here.

This whole business of every step feeling like I was dragging my feet through molasses started sometime last October, but our DD was in the hospital then, and I was staying with her, so I put off doing anything about it until March. The epidurals the Orthopedic Dr. prescribed did a great job of getting rid of the pain, but the walking did not improve. So here I am, and it’s September, almost a year later, and I’m still wading through mud with every step. Let’s just say my patience is wearing pretty thin.

Posted in Uncategorized | Tagged appointments, difficulty walking, EMG, Neurologist, Parkinson's, tests, toxic chemicals | 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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