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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: Super Foods

Doing What I Can

Day by Day with a Movement Disorder Posted on March 15, 2012 by DBMay 9, 2016 2

I’ve had my final Physical Therapy session for my neck. I’m definitely not hurting as much as I was before going to him, but I still have a lot of pain after doing certain things and by the end of the day.

I end up in considerable pain by the end of every meal, because I have to take off the neck brace. It’s too easy to choke with one on. I can’t ride in a car for more than a few miles without beginning to spasm, even with the neck brace. Hubby had a brainstorm the other day, so we bought one of those egg crate mattress toppers. We cut a piece to fit inside a pillow case, and we now have that in the passenger seat, so my back and neck are more cushioned from road vibration.

We moved a recliner into my Sunday School classroom, so I can hopefully get to a point that I can sit there on Sunday mornings without having to use the neck brace. I didn’t make it all the way through without the brace last Sunday, but it was a start.

We’re scheduled to move back into the sanctuary on April 1, so I have a few more weeks of exercise before I have to deal with sitting in a pew without the support of a high back. That’s still my goal – that I will be able to sit in the pew with the neck brace on all the way through the worship service. But if I have to lie down in the pew before the end of the service, I will. I’m not going to let this disease keep me from going to church!

As I understand it, they do the muscle biopsy in a muscle that is not severely weakened yet, which certainly explains why mine was done in my Deltoid arm muscle. The Physical Therapist gave me some leg exercises to gradually work on here at home, and I was shocked to find that my legs are as weak as they are. The hardest exercise for me is to lie on the bed with my toes pointed straight up and one leg bent. I’m supposed to pick up the straight leg 10 times. I can get my heel off the bed a little, but not enough to clear my calf away from the mattress. So it’s now pretty obvious why walking is so hard for me. Hopefully, if I’m careful to work on this just a tiny bit each day, I can improve my leg strength over time.

I’m continuing to take a meal’s worth of vitamins and supplements at meals and in between snack times – many of them are part of what’s called a Mito Cocktail, and we’re very careful to eat as many Super Foods a day as we can.

I’m drinking about 90 ounces of water or green tea sweetened with Stevia every day, as staying hydrated is very important. I’ve also started keeping a small hot pad in the small of my back set to the lowest heat – as any energy I use up staying warm is energy I don’t have for my muscle, brain, heart, and digestive system cells.

I have a follow up appointment tomorrow with the same UAB doctor who diagnosed my Mitochondrial Myopathy. I have a LONG list of questions for him, so we’re praying we get some answers.

Posted in Exercise, MITO | Tagged exercise, hydration, MITO, Mito Cocktail, Mitochondrial Myopathy, Physical Therapy, Super Foods, weakness | 2 Replies

Great News about my Diabetes!!

Day by Day with a Movement Disorder Posted on December 18, 2010 by DBOctober 22, 2019 2

My doctor is very proud of me for having an A1C of 5.5 two times in a row. That means for the last 8 months I’ve had a better sugar level than most people without diabetes! He actually said I was no longer Diabetic, and he halved my Metformin dosage. To say the least I’ve been celebrating this week, and with Christmas right around the corner I’m sure I’ll indulge more than I did last Christmas! After that, I’ll have to go back to eating more properly and checking my blood glucose levels, but for right now…we’re just celebrating.

I could never have lost and kept off the 60+ pounds over the last almost 2 years now if it hadn’t been for my dear sweet hubby, who does the grocery shopping and cooking. He’s read everything he could get his hands on ever since I was originally diagnosed with Parkinson’s way back in 2005 to be sure I eat the very best possible diet of high antioxidant Super Foods, as have I. And he checked Nutrition labels on every processed food he bought for the last 2+ years for sugar and carbs. I was determined to beat the Diabetes, if at all possible, but I wouldn’t have done it without his considerable help. And we wanted to alleviate the Movement Disorder symptoms as much as possible, too.

So here’s a great big {{{{HUG}}} to the love of my life!

As for the jerks of my current diagnosis – Essential Myoclonus, the news isn’t as good, but maybe I’m doing better than I was. The Depakote plus Primidone combination seems to work a little better than the Neurontin plus Primidone did. It just doesn’t take much to break through and send my shoulder into a jerking fit. The least bit of stress, and it can go on for what seems like hours. Like at the dentist the other day. I jerked in the chair the whole time he did a filling. I like my dentist, but I have childhood memories that have left me dealing with high stress every time I go. I’m better than I used to be, but all the jerking reminds me of how deep seated this fear is.

So hubby and I are celebrating our 50th Christmas together (if you count the years we dated or were engaged), with our family in good health. We are very thankful to God for seeing us through some rough times, but I have faith that times are going to get better.

I pray you and your family will know the Spirit of Christ during this Christmas season.

Posted in Nutrition | Tagged Christmas, Depakote, diabetes, diet, family, God, jerks, Metformin, Movement Disorder, nutrition, Primidone, Super Foods | 2 Replies

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