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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: I Will Go On

I’m Still Losing Weight

Day by Day with a Movement Disorder Posted on October 28, 2010 by DBMay 19, 2016 2

Well, I have exceeded my goal weight loss by several pounds, and even though I’ve quit counting calories, I’m still losing weight. It’s just as slow a weight loss as it was all those months of trying, but losing it I am. And I’ve been allowing myself the occasional milkshake or pizza, as the mood strikes, too, without regard for calories or lactose intolerance or blood glucose numbers!

I guess I’ve just gotten so used to eating less that I am still “on a diet”, even though I’m not trying. Hmmm… anyone want a milkshake?

I’ve finished reading Dan’s book, I Will Go On, and I’m in the process of re-reading the chapters I found most inspirational to me. I can’t say that I “enjoyed” the first few chapters, but the bulk of the book more than made up for the opening explanation of the various types of Parkinson’s Plus disorders. I would still recommend it as great reading for anyone dealing with PD, or any Movement Disorder, either as the one with it, or as the care giver. I didn’t find the explanations that helpful, as I’ve already read all this many times before in my own Googling, but I would think that anyone new to PD Plus would find this layman’s explanation of all the variations of severe Movement Disorders to be very useful.

I can only be thankful to God that I have a relatively mild Movement Disorder.

Hubby and I have noticed some occasional tremors in my right hand that aren’t as jerky as my foot, shoulder, and face can get at times of stress. It’s nothing to be concerned about, but worth noting, in case it becomes more frequent. I will be able to look back here and see about when we first started seeing it.

When I was first diagnosed with Parkinson’s, we bought a notebook to log any and all symptoms, doctor’s visits, meds, etc. And I kept it up religiously until after the MDS had changed the diagnosis to Essential Myoclonus and had me on Primidone, which worked wonders for me. But I’ve long since quit writing much in it, depending more on keeping track here on my blog of our war on my Type II Diabetes diagnosis. I would recommend the journal method though, for anyone with a progressive disease, such as Parkinson’s. It’s great to be able to answer the doctor’s questions about onset of symptoms by turning back in a journal to the first entry for a given situation. And it’s much easier to keep track of the side effects of meds, etc., too.

There have been some family issues that have kept me somewhat depressed and definitely more tense of late. I don’t handle my emotions as well as I used to, either, so it’s affecting me more than I would like. It’s just something I need to work on. I know that with God’s help I can meet anything that comes my way.

I recently started trying to memorize scripture verses, both as a way of drawing closer to God and to also exercise my memory. I’m picking verses that I already know in a general way, and now I’m trying to learn where they are in the Bible and learn the exact King James version of them. That’s the version I grew up with, so it’s best for me to use. I know a lot of scriptures in a paraphrased sort of way, but, with few exceptions, I never learned their location in the Bible. I regret that I did not master these verses a long time ago. I can certainly tell that my brain is not as sharp as it used to be, but I’m glad to see that I am having some success.

So here I am at this moment in time, with some successes and other situations I continue to work on. Life is good.

Posted in Quality of Life | Tagged brain fog, diet, I Will Go On, King James Bible, memory, Movement Disorder, Parkinson's, Quality of Life, weight loss | 2 Replies

I Will Go On by Dr. Daniel Brooks

Day by Day with a Movement Disorder Posted on October 20, 2010 by DBMay 19, 2016 4

Dan Brooks has written a book about his fight to preserve himself as his body deteriorates, I Will Go On, and I bought it the other day on Amazon. I’m glad I did.

One of the best things about blogging is getting to know people you would never have the opportunity to meet otherwise. I have been following Dan and his journey through his aggressive form of Movement Disorder for some time now on his blog, and I’m always encouraged and uplifted by his strength of character and determination.

I’m not too far into the book yet, but I can tell you right now that it should be required reading for anyone who is facing Parkinson’s, and for their care givers, and certainly for those who appear to have one of the rarer forms of Movement Disorders that have Parkinson’s symptoms plus other brain dysfunction symptoms. For those like myself, who have a mild form of a Movement Disorder, it helps to put my minor problems into perspective. For those with rapidly worsening symptoms, it gives a vivid description of his progression and determination. It is a scary read in some ways for me, but I know from personal experience that even a bad diagnosis is better than the awful unknown of enduring test after test and doctor after doctor with no idea what is wrong with you or how to treat it.

I hurt for Dan as I read it, but it’s hard for me to put the book down. I want to know more about this man I have come to love and respect via the internet. I think you’ll find that true, as well.

Posted in Quality of Life | Tagged I Will Go On, Movement Disorder, Parkinson's, Quality of Life | 4 Replies

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