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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!

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My Prayers Have Been Answered!!

Day by Day with a Movement Disorder Posted on October 5, 2006 by DBOctober 5, 2006 2

I’ve been going to doctors for years with strange symptoms that came and went, that they never could explain. Most of them were attributed to stress, which made sense, but I was never satisfied with the diagnosis. Today, the Neurologist officially gave us the diagnosis of Parkinson’s Disease, and even though that can mean years of debilitating illness, it doesn’t have to be that way. Every PD patient is different. I’m just so relieved to have an explanation for what’s been happening to me, particularly for the last year, that I have been celebrating all day long. Now I have an enemy I can fight!!!

Doctor S has given me the directions today for weaning off of the Sinemet and changing over to Requip, which is a dopamine agonist. There’s no way of knowing if I will be able to use it instead, without trying it, so the next 4 weeks will be another trial. Sinemet is the gold standard of PD meds, but it only works for a limited number of years, before the side effects cause as much trouble as the PD does. So they try to delay starting “younger” patients like me on it, if they can help it. (I don’t call 63 younger LOL)

We also asked about exercise, and he said for me to walk for 30 minutes a day for 4 days a week. From my reading I’ve found that Tai Chi is good for Parkinson’s patients, and I’ve already had some training. I went to the gym on the way home today and talked to the Sensei about giving me some private lessons two days a week for 30 minutes to help me build my balance and stamina again. And Dr. S said I need to do some weight bearing exercise, too, so I’ll be getting back on the mini trampoline, too.

Today is a new beginning for me in a very real sense, and I thank God that I have been diagnosed early, so I have time to improve my health as much as I possibly can. I thank you all for your prayers.

Posted in Uncategorized | Tagged diagnosis, exercise, Neurologist, Parkinson's, prayer, Requip, Sinemet, Tai Chi | 2 Replies

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