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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: Mito Cocktail

Making Progress

Day by Day with a Movement Disorder Posted on April 11, 2012 by DBMay 9, 2016 2

I’m pleased to report that my exercises are actually showing improvement. My neck is still giving me trouble, but I have been able to add a small resistance to some of the neck exercises and still do 10 repetitions. I see this as a sign of progress. But I am particularly pleased with improvement in the leg exercises. When I started I could not do a straight leg lift with my left leg at all. It simply would not budge. Now I can raise it for 10 repetitions, although the muscle starts complaining after the first 5. That is a huge improvement! And I can tell that I’m walking better, too.

I’m now on many of the natural herbal versions of my vitamin and supplement routine, as well as taking the full Mito Cocktail regimen. There’s really no way to be sure if the muscle improvement I’m experiencing can be attributed to the exercising, the supplements, or a combination of both. I assume it’s a combination of consistent exercising and the high powered doses of vitamins and cofactors I’m taking. Insurance won’t pay for any of these supplements, so to say the least – they’re expensive. But less pain and my increased energy make it worth it to us.

I continue to read everything I can get my hands on about vitamins and supplements, and I’ve learned a lot and been reminded of much I had already read about. I am now taking a low dose of Prozac, and my Neurologist prescribed Neurontin for pain, so maybe my improved outlook can be attributed to that – but I’d like to think I’m feeling better because I AM better! Either way, I’ll take it!

Posted in Exercise, Medicines and Supplements, MITO | Tagged antidepressant, exercise, MITO, Mito Cocktail, Mitochondrial Myopathy, Neurontin, nutrition, pain, Prozac, Quality of Life, supplements, vitamins | 2 Replies

Hocus Pocus Dominocus

Day by Day with a Movement Disorder Posted on March 30, 2012 by DBMay 9, 2016 4

I did something the other day I would have never thought I would ever do. I went for an herbalist consultation.

You have to understand that I have a science background, having taught Chemistry and Physics. I’ve been to a Chiropractor within a doctor’s office a few times over the years, but never felt comfortable doing it. So making an appointment with this person was a real leap for me. But you also have to understand that hearing the words from your doctor – there’s no treatment and no cure – leaves you looking in different directions for help.

So, I did a lot of online searching about this particular herbalist and was impressed with what I read. I’m certainly not opposed to medicating with natural substances – I’ve been taking the Indian herb Turmeric for years at the recommendation of hubby’s Oncologist. After all, part of the Mitochondrial DNA mutations I have were caused by some of the prescription meds my doctors previously had me taking, so there’s no guarantee that common prescriptions are safe for everyone.

But I was extremely skeptical about HOW the process of deciding what I needed would be determined.

It’s called Applied Kinesiology, and it sounds like something that could win the QUACK Award of the Century! But it wasn’t invasive in any way, and we are at our wits end trying to find someone who will help with deciding what vitamins and supplements would help me. Through research on the Mito sites I’ve gradually added the supplements recommended in the Mito Cocktail, with no real way of knowing if we’re wasting the money on them or not. Plus over the years I had gradually added a bunch of antioxidants and vitamins, trying to improve my general health. We’d also improved our diet considerably, so now we eat a large number of Super Foods, with a good many being raw.

So we’re desperate for some guidance with what to spend our money on and what not to waste it on.

I can honestly say that we DID see an obvious strength or weakness in my muscle strength when holding in turn each of the vitamins and supplements I’ve been taking. (There was absolutely NO attempt to test my prescriptions, or to imply that I should not continue to use them or stop seeing my doctors.) After “testing” my box of supplements, the herbalist proceeded to test a variety of different herbs and vitamins on me, noting those where my muscle strength was the greatest.

After about an hour of this process, we were given a list of specific vitamins, supplements, and herbs that were supposed to be more affective for me than some of those I had been taking. But most of what I had been using were said to be effective and useful for me.

We left with the list, and I spent the next day researching each of these recommendations, checking for side effects and possible interactions with my prescriptions and other supplements. As far as I was able to determine there should be no problems with any of them. I didn’t order all that were recommended, but I did order several substitutions for over the counter versions of vitamins I had been taking, replacing them with herbal versions supplying the same vitamins more naturally.

So my new herbs should be arriving any day now, and I’ll let you know in a month or so if I can tell any difference. Wish me luck!!

Posted in Medicines and Supplements | Tagged Applied Kinesiology, herbalist, MITO, Mito Cocktail, Mitochondrial Myopathy, nutrition, Quality of Life, Turmeric | 4 Replies

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

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