I was diagnosed with Parkinson's Disease and Peripheral Neuropathy in 2006, but my symptoms seemed to take a turn in a different direction in late 2007, and the diagnosis was changed to Essential Myoclonus. Then in 2010 I was diagnosed with Type II Diabetes. Finally, after a muscle biopsy, it was determined that I have Mitochondrial Myopathy.
Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!
"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
Saturday, April 23, 2016
Has anyone else ever had teeth clenching with Clonazepam, I wonder???
I've researched online and found jaw exercises and tongue positions that are supposed to help stop the clenching, but if it's not cleared up by next week, I'm going to my dentist. I may have cracked some teeth. Hopefully it will just mean getting a mouth sleep guard to use for a while until the bad habit is broken.
So for now, I'm back on Goody powders twice a day, plus I'm now taking the Methocarbamol three times a day, plus Neurontin at night. I don't have enough Neurontin left before my Neuro appointment to take more than that. And I'm really hoping he'll suggest something else to take, anyway. He put me on the Clonazepam, because I asked for a med change. I'd been on Methocarbamol and Neurontin so long that they just weren't working very well any more. But for now, they are better than nothing.
My walking has improved, now that the Clonazepam is completely out of my system. I can actually pick up my feet most of the day, instead of shuffling all the time. But it's still not as fluid a gait as I am accustomed to. My strength has increased overall, which means I can begin to get our house clean again. I actually vacuumed the great room today, and will finish the bedrooms when I've rested for a while. That's definite improvement!
We did have one more house improvement done to increase the accessibility of our house. Our laundry room is in a corner of the basement. Trying to carry a load of clothes up and down, juggling holding onto the banister and turning the top of the stairs light on and off has been a real problem for some time. So we had a motion sensitive three way switch installed at the top of the stairs. Now the light comes on when I open the door, which makes grabbing hold of the rail while holding a laundry basket in one hand a whole lot easier.
Our plan is to eventually have the washer and dryer moved upstairs into a bedroom, or to have a stair lift installed - whichever is cheaper. Our stairs do have a landing half way down, thank goodness, which is enough for now.
Hubby continues to be more help around the house than he was, and I don't have to ask any more. He had just gotten in the habit of leaving everything for me to do when he was so sick, and I had willingly taken over most of his share of the work around here. But lately, I really needed his help, and he's picked up the slack.
We've always shared house chores, and he did all the laundry for many, many years. I still prefer that he not go up and down the steps holding a basket, with that paralyzed leg, but other than that he's doing everything he used to do inside the house. He'll never be able to work outside again, as we have a hilly lot and yard work would not be safe for him. I do a few easy things outside, but mostly we just pay for yard help these days.
So we make adjustments to our house, and to our routines, to accommodate our current health status. Just part of growing older with physical issues that have drastically changed what we had expected our senior years would be like. But we're here, together, making the best of it, and for that I can always be thankful to God for his wonderful grace and mercy.
Saturday, April 16, 2016
Of course, because of the long half-life of this benzo, I still have some of that last .25mg pill from Thursday night in my system. It will take the rest of the weekend before I dare try going back to my old meds - Methacarbamol and Neurontin. I have called for a Neuro appointment, but no telling how long it will be before I can actually see him.
Maybe this couple of months off my usual meds will make them work better for me again. I had been gradually increasing the doses to the maximum, because they were no longer helping with the muscle spasms and pain. And the high doses were making the brain fog worse. That's why I had asked for a med change, and how I came to be back trying Clonazepam.
I decided to look back through all my blog posts for every mention of Clonazepam, as I had been on it once before, back near the beginning of this saga. At that time I was on Parkinson's meds, and the extreme muscle weakness I experienced was attributed to the combination of meds. Now I know that's probably not the case. The wet noodle muscle weakness I described back then is exactly how I'm feeling now.
DH has done his best to take up the slack here at home, helping with things I would normally do quite easily. I had gotten very frustrated with him, because he wasn't helping. But he's not a mind reader, and I hadn't actually asked him for help. So we had a "come to meetin' talk" the other night. Now the air has been cleared, and I'm getting more help. I still have to remind him, as he had gotten in the habit of letting me do a lot of stuff he once would have done automatically. His paralyzed leg and slow recovery from his heart attack changed both our roles considerably. But for now, I'm more in need of help than he is. And I'm getting it, sometimes after asking, sometimes without asking.
I did ask DH to bring the walker back upstairs, but I'm resisting using it, just as I did years ago. My DD fussed at me yesterday when she saw how slow and shuffling my gait has gotten, saying I needed to get over my pride and go back to using it. I know she's right, but it's a hard change to make. It feels like defeat. And in my mind it's so much more VISIBLE than my gait - it makes me conspicuous, and that's something I am NOT comfortable with.
This whole process of slowly going off one set of meds, then slowly going on another med, slowly increasing the dosage, then slowly cutting the dosage back to nothing has taken a couple of months. It's the only safe way to transition from such powerful chemicals, and it's the only way to find out if something different will help any more than what I was already on.
So I continue being a clinical trial of one, basically using myself as a guinea pig, praying each time that something will work to improve my quality of life.
Saturday, April 09, 2016
So now I am working on titrating back off of the Clonazepam. Even when I was up to three .5mg pills a day, I did not get any pain relief, so it just wasn't worth it.
I'm down to .5mg at night, but not taking any during the day. Yesterday was horrible, with legs so weak and painful it was all I could do to get up from the chair, but today is better.
I don't plan on going back on the Methocarbamol and Neurontin until I've given plenty of time for the Clonazepam to be out of my system. They didn't help much, and made the brain fog worse, but it looks like they are still the best meds I have available. The half life of this benzo compound is like 60 hours, so it takes a looooong time to rid the system of it completely. That long half life is great for smoothing out anxiety issues, not so great when it makes the muscle weakness worse.
Another birthday has come and gone, making this my 10th year with some kind of movement disorder diagnosis, not counting all those years when doctors dismissed me as just a whiny hypochondriac female LOL. Initially it was thought to be Parkinson's, but was eventually conclusively diagnosed as Mitochondrial Myopathy.
I'm basically my own doctor at this point. No new research findings in the years I've known what was wrong, so it's left to me to try various nutrition programs and what I think might be helpful in the way of meds - with my Neuro's approval, of course.
At my last appointment, my Neurologist broached the subject of me eventually being fitted with some kind of AFO braces to support my legs better, as my age is beginning to work against me. Exercise intolerance is one of the hallmarks of this disease, so I have to strike a balance between not moving enough (trying to keep from hurting) and moving too much (which damages muscle cells and does more harm than good).
So I thank God for the better day I'm having today, and continue to do what I can to improve my quality of life.
Praising God, from whom all blessing flow!!!
Tuesday, February 16, 2016
Being still at church makes me more aware of all the spasms, too. Plus, no matter how much I bundle up there, I'm always cold. And cold is something I don't handle well at all. I wear thermal undies year round for church - AC and drafty heat both cause issues.
Our short stent as Nursing Home Sponsors didn't last but a few days - he wouldn't stay, no matter how much better off he would have been if he had. I've called him a couple of times to check on him, but can't stop worrying about him. That whole situation took quite a toll on my emotions - far more than the tiny Clonazepam pill could handle. I know it's just a matter of time before he ends up back in the hospital. Learning from past experiences with our parents and daughter, I have his "hospital bag" all ready to go. LOL We've done all we can for him at this point, except for prayer - and God gets a lot of that every day, searching for insight on the right way to deal with him.
I wasn't supposed to see my Neuro again for 6 months, but at this point I will probably give in and call for an earlier appointment. It's just hard to accept that there's nothing they can do to help me feel better - no matter how many times I remind myself there is no treatment or cure for Mitochondrial Myopathy.
There are so many people in the world living with horrible medical and emotional situations, I feel ashamed of myself for whining. But it's just one of those kinds of days, and I need to vent. I originally started this blog because I couldn't find anyone talking about what it was really like living with a movement disorder. Oh, there's plenty of medical information out there, but what it's like to LIVE this way? Not so much about quality of life. So if I gloss over the bad days, I'm defeating the whole purpose of writing.
I thank you for your time to follow my blog and covet your prayers, both for us and for this cantankerous old man we're trying to help.
Praise God for all His Blessings!!
Sunday, January 24, 2016
For the last few years I've been living off of Methocarbamol muscle relaxers and Neurontin for nerve pain, and taking a large number of supplements in an effort to keep my nutrition level as high as possible. But it was taking higher and higher doses of muscle relaxers to get any relief, and the shoulder jerking had even come back. So I asked my Neurologist to try something different.
Since I was experiencing heightened emotional responses, as well as more and stronger muscle spasms, he put me on a low dose of Clonazepam - an anti-anxiety med that is also used off label to calm muscle spasms. I started on the lowest dose, but now I've bumped it up a bit. It does seem to be taking the edge off the startle reflex and inappropriate nervous reactions, but the muscle spasms continued to worsen.
Several weeks ago my calf muscle cramped hard just as I put weight on that foot, and down I went, falling flat on my face. I was very lucky to only have a few bruises. The leg continued to jerk fiercely for several days, so I had to be extremely careful to not take a step without holding onto something. I called the Neuro's nurse, and he added the Methocarbamol back with the Clonazepam.
I'm still spasming more than I was for a while, so I spend most evenings on the hot pad trying to relax the muscles.
I'm extremely thankful that I had already asked for more help from my Neurologist and there had been time to bump the Clonazepam dosage up a bit before a new turmoil hit our lives.
We are now back in the "care giving business", trying to help a friend deal with a serious hospital stay and accept a Rehab Nursing Home situation. He's not an easy person to get along with. He's antagonized so many people over the years that he's burned his bridges, except for a few families still willing to help him. It's a shame, but he's brought it on himself, with poor health management and lifestyle decisions and frequent angry outbursts over many years.
If it weren't for the Clonazepam I don't think I would be able to survive the emotional upheaval he seems to keep stirred up.
So for now at least my "new normal" consists of dealing with a cranky old man who is too sick to live independently. As his Nursing Home "Sponsor" there's lots of paper work and responsibilities to deal with there, and of course Hubby and I will be visiting him once or twice a week.
The rest of the week I'm trying very hard to relax and rest as much as I can. I'm very thankful that my dear Hubby is so supportive, picking up the slack around the house when I don't feel like doing much. We make a good team.
God finds good use for all our life experiences, so being care givers for our Alzheimer's parents, parenthood, plus teaching school for 29 years have prepared us about as well as anyone can be ready to deal with a curmudgeon in failing health LOL.
We covet your prayers both for him, and for us!
Saturday, June 27, 2015
So my surgeon suggested PT. When I started, it was all I could do to get 20 pulls on the weakest yellow Theraband tubing. By the time I graduated this week I could do 40 pulls on the green tubing (red had gotten too easy). Of course I have to rest in between sets of 10 to give my muscles a chance to recover, but I was pleased with the improvement. They spent about 15 minutes of each session doing some rigorous massaging on my neck, trying to release the muscles. I even had one acupuncture session.
The last day's massage did not hurt as much as the others had, so hopefully that spasm is beginning to release.
I have not been on any muscle relaxers now for about two weeks. I do get pretty uncomfortable in the late afternoon, but the new prescription was giving me problems, so I quit taking it. It's ironic that Medicare made me stop using Methacarbamol, because "it would make me sleepy and at my age that increased the danger of falling". HAH! The new one that's supposed to be safe for me almost makes me Narcoleptic!!! I drop off to sleep out of nowhere when I try to use it. Will certainly be getting that prescription changed when I see my Primary next month.
I can't complain about my pain level, as it's SO much less than I had dealt with for years. By comparison this is like having a mosquito bite instead of being covered in huge poison ivy blisters!
Now I just have to be disciplined to continue exercising at home. We have plenty of Theraband lengths in all the colors, as well as weights from one pound and up. I had just started using two pound weights for a few PT exercises. I won't be scared to do stuff now that I have been able to do supervised exercises.
I'm very thankful for my improvement and praise God for my bone and muscle healing.
Thursday, May 07, 2015
BonesTwo years ago my bone scan came back showing excessive bone loss. My mother's hip broke and caused her to fall (not the other way around). That, and the scan results, put me in the high risk category, so I'm very motivated to improve my bone density.
My OB/GYN put me on daily Evista to treat the Osteopenia, but I had a severe muscle spasm problem while on it. Not surprising, considering how much jerking, twitching, and trembling I've had at various times over the years, due to my Mitochondrial Myopathy. I stayed on the Evista for two months, thinking surely my body would adjust to it, but it just kept getting worse.
(My Orthopedist suggested I try Forteo, which is a daily self administered shot, and I have not had any bad side effects with it. I've been on it for eight months now.)
MusclesEven after I stopped taking Evista, the muscle spasms didn't stop, particularly in my upper back and neck. I started upping the doses of Methocarbamol muscle relaxer and Neurontin (for nerve pain), trying to control the pain. The more pills I took a day, the more foggy I became. I couldn't function without the pills, and just barely with them.
My Neurologist did another MRI on my neck and sent me to my Orthopedist for a series of epidurals. These helped, but not consistently, and they will only do four a year. So the relief from pain was fleeting. The last epidural I had didn't help at all.
PainBy February of this year I was in severe pain all the time. It had radiated down my arm, midway down my back, and gone up to the top of my head. The headaches felt just like someone had a huge nail pressing into the top of my skull. February 25, 2015 was my turning point. I ended up in the ER with my blood pressure over 200, and my head about to explode. They brought it down with IV meds and sent me home.
SurgeryI started on Amlodipine blood pressure pills and went to my Orthopedist to ASK him for surgery. After looking at the new X-rays and MRI of my neck, he agreed. On March 24th I had Anterior Cervical Discectomy and Fusion (ACDF) of C4-C5 and C5-C6. I stayed in the hospital that night and came home the next day. The hospital stay is a blur for me, because I was on a Morphine pump. About all I remember is the nurse telling me to "push the button" over and over. And I remember choking and gagging on whatever it was they tried to feed me.
RecuperationI had researched the surgery, of course, so I was aware that they go in from the front of the neck, moving the esophagus aside so they can reach the disks and vertebrae. Hoarseness is a common side effect of this surgery and often swallowing difficulties as well. For most people the hoarseness only lasts a few weeks. At first it was an effort to squeak out even a syllable or two, and everything I tried to swallow choked and gagged me. And there was more swallowing pain than I had expected. I should have known there would be considerable pain; they sent me home with a prescription for 90 Norco tablets.
It's been about six weeks now, and I'm still a little hoarse, although much better than I was to begin with. I've been using Thickit to make swallowing liquids easier since the first week at home. I'm needing it less and less now.
OutcomeThe voice and swallowing problems have been very frustrating, but become less of an issue each day. But the neck, shoulder, and back pain have diminished from 8-10 to 3-4!!! I'm no longer on blood pressure medicine, and I usually only take two muscle relaxers a day.
I was apprehensive about having this surgery, but I'm glad I did.
I consider the operation to be a Success!! Praise God for his gracious healing.
Sunday, February 23, 2014
I'm using an easy to make dessert that satisfies my chocolate craving and a no wheat egg bread recipe that cooks in the microwave oven in less than 2 minutes. Those two recipes alone are probably responsible for keeping me on this diet.
My eyes are better, but still not back to normal. My eye doctor really doesn't think the change in diet is at fault, as tears are made of lipids (fats), and I'm certainly getting plenty of good Medium Chain Triglycerides in the Coconut Oil I consume daily.
He would normally prescribe steroid drops at this point, or Restasis. But we're both reluctant to do that, because of my Mitochondrial Myopathy. So he's recommended hot compresses twice a day and massaging the lids with a water and baby shampoo solution. The hope is that my tear glands will start producing more tears due to the stimulation.
I am losing weight for sure, and I've only felt hunger a few times since I started this diet in earnest in mid January. The first couple of weeks in January were spent gradually changing over and using up the food that was already in the house.
The digestion issues resolved themselves, as I had hoped they would. I do take MiraLax every morning, but I've been doing that for many years. My digestive system muscles are weaker than normal, thanks to the MITO, so dealing with constipation is par for the course.
I did have an upsetting situation develop in church today. We're having some kind of short in our sound system that has caused me to go into Myoclonic jerks the last few weeks. But it seemed like today there were more sudden high squeaks from the organ and more crackling sounds out of nowhere that just set me off. By the time the service was ending I was in full Myoclonus and crying. Everyone nearby came to find out if I was OK, but all I could tell them was that I was OK, but the genetic disorder I have makes me have a hyper startle reflex.
I really appreciate their concern, but it embarrasses me when I go into one of these "fits". The more I try to stop the jerking, the worse they get. I just have to find a way to relax and wait them out. It's been some time since I had this much trouble with the jerking, but the constant pain I've been in for months now probably contributes to my tolerance level for unexpected noise being way down low.
So I continue to have muscle issues and other odd problems caused or exacerbated by MITO, but I'm also working hard to find the right combination of diet and activity to maximize my quality of life. I have been reading every book on nutrition I can get my hands on for several years now and continue to do so. And I'm currently going to physical therapy twice a week, hoping to strengthen the muscles in my neck, back, and shoulders and alleviate my pain.
Thursday, February 06, 2014
So off to the eye doctor I went, reluctantly, but I really didn't have a choice. Turns out it was a bacterial infection, and he put me on antibiotic and steroid eye drops.
I was still very uncomfortable, even after I finished the bottle, so we went back to the doctor. I have a history of dry eye syndrome, so this time he plugged the lower tear duct holes with lachrymal implants. The purpose of these is to keep the tears from evaporating off the eyeball so quickly.
Thanks to my Mitochondrial Myopathy, we both agreed that the implants were a better choice than Restasis, the usual drug prescribed for this issue. The fewer toxins I put in my body the better. He had tried the implants some years ago, but they came out. At least they got me through the allergy season that had me irritated at that time. I'm hoping for the same good outcome this time.
I've also had constipation problems ever since we were stuck in a hotel for two days after a harrowing two plus hour drive to get out of the unexpectedly heavy snow storm that hit the South last week. I shouldn't be surprised, considering both of our stress levels had to have gone through the roof while we crept along that three miles to the hotel.
We weren't able to eat what we normally would either, which I'm sure just added to the problem. But the reason I bother to mention this is the new LCHF diet I'm on makes me wonder if the constipation was more due to stress or to the drastic change in what I eat, particularly the huge increase in my fat intake. Time will tell whether it's diet related, or just a blip caused by such an unusual week.
I know how to deal with the constipation, as that has been a recurring problem for many years. One of the ways my Mitochondrial Myopathy presents itself is a slow digestive process, called gastroparesis. But not being able to read for any length of time or work on the computer is bothering me greatly.
I pray that the implants stay in long enough to improve the quality of my tear production and heal my irritated eyeballs. And I hope the constipation problem was temporary and not caused by the LCHF lifestyle I'm trying very hard to live.
Sunday, February 02, 2014
Anyway, I was well on my way to eating this way already, since I'm diabetic. So it's probably not been as hard for me as it would most people. But it's still been quite an adjustment to stop eating ALL grains, beans, and below ground vegetables.
I have enjoyed eating all the eggs! And they have naturally the right percentage of fat, carb, and protein. Other diets, such as Atkins, replace the carbs with more protein. But this diet replaces all the carbs with fat calories. And I can state categorically - I'm not hungry!!
There are lots of possibilities as far as what I could be eating, but here's a general idea of what a day is like for me now. Breakfast is 1/4 cup of nut pieces, a tablespoon of flax meal, and a cup of almond or coconut milk. I eat it as if it were cereal, and that keeps me going just fine until lunch.
Lunch at home is what it's always been (since I was diagnosed with Type II Diabetes). Hubby cooks a stir fry of vegetables in olive oil, often with ham. He still eats whole grain bread with it, but I don't.
Afternoon snack is usually half of an avocado or something called a chocolate Fat Bomb. It's a homemade chocolate candy that is basically unsweetened cocoa, butter, and coconut oil.
I'm keeping track of my food intake on http://www.myfitnesspal.com, so I can tell how many calories I have left for the day. I do hope to lose some belly fat on this diet, so I've set a calorie limit for myself. And I need to learn how to keep the protein and carb intake low and the fat count high, so tracking my nutrition is helpful. Once I see where I stand nutrition wise, I decide how many eggs I can have for supper and whether I can add cheese, spinach, and/or mushrooms.
It's really weird. I've not craved any sweets I was used to eating, like ice cream on Sundays. I do miss the great sandwiches chock full of veggies that hubby used to fix me for dinner, but I can still have them as a salad.
I found an easy to fix coconut flour and egg bread substitute that cooks in the microwave. I make that when I'm craving bread.
Eating out has been the hardest to adjust to, and we eat out several times a week on average. But again, I was already used to finding suitable foods in restaurants, because of the diabetic restrictions, and that helped. So far I've been able to stick to the ketogenic diet pretty well.
And the Ketostix test strips I use show that I am in Ketosis. That's the secret to this lifestyle. The goal is to change the cells over to using ketones for energy, instead of carbs. Mitochondria use ketones more efficiently than they do glucose, which is supposed to increase my energy level. It has definitely done that. There's no difference in pain level yet, and as long as I stay on the pain meds I may not see an improvement in the brain fog, but I'm still optimistic about that improving in the future.
As I see my energy level increase it gives me reason to continue with this lifestyle, with the hope that the brain fog will lift, and the improved mitochondrial activity will lessen my muscle pain. Only time and patience will tell.
Sunday, January 19, 2014
I've been studying anything and everything I could get my hands on about mitochondria and cellular energy production ever since I received the diagnosis of Mitochondrial Myopathy. Since the doctors can't offer much in the way of treatment, other than suggestions of taking CoEnzymeQ10 and B vitamins, it seemed that if I were to improve - it was going to be by improving my diet.
So over the last year I've studied several books and searched all over the internet for information about Paleo, Biblical diets like the Maker's Diet, and most recently Low Carb High Fat (LCHF), or Ketogenic diets. These are not "diets" in the usual sense of the word, but lifestyle changes. I found quite a few points of common ground in all three of these approaches.
All three emphasize eating the way God meant for our bodies to be fueled, long before the food industry convinced us that stuff in pretty cardboard boxes was better for us than real food. And all of them would be appropriate for my Type II Diabetes.
After seeing Dr. Perlmutter on the Dr. Oz show some time ago, I bought his latest book, "Grain Brain", and found his approach to make sense for me.
So I've been grain free and also greatly increased my fat intake for about the last two weeks and can definitely tell the difference in my energy level. And I don't just mean I feel peppier - I've actually not been as cold as I normally would have been. It may just be a placebo effect, but I'll take it, either way!
I'm hoping I will see some of the brain fog lift as well, as I reduce the inflammation in my gut that gluten has probably been causing. In all the years of digestion issues I've had - I have never been tested for gluten sensitivity, even though I have been diagnosed with IBS and GERD, as well as experienced several ulcers over the years. Since I have so many symptoms of gluten sensitivity, it seemed worthwhile to experiment with the Grain Free approach for at least a couple of months.
I don't think the dietary adjustments required in a LCHF or Ketogenic diet are something that everyone would want to adhere to, but the continued pain, lack of energy, and brain fog I've been experiencing now for several years has made me desperate enough to try just about anything that looks safe.
Sunday, November 10, 2013
I could just as easily have titled this post as "WOW Has It Been a Year!!!".
The last post was on November 3 of 2012, and here it is November 10 of 2013. So much has happened that it's hard to imagine. But one thing is so crystal clear, and that is that we have a LOT to be thankful for!
On November 28, my wonderful hubby had emergency open heart surgery for what's called the Widow Maker heart attack. He did well after surgery, except that something they did in surgery left his left leg paralyzed from the knee down. That slowed his recovery considerably, but he improved enough to be accepted into rehab.
But instead of going home right before Christmas, he was back in ICU, due to a severe auto-immune reaction he had to the heart medicines he had been on since surgery. His platelets (that's what keeps you from bleeding to death) dropped from a normal count in the hundreds of thousands to TWO thousand!
They started pumping platelets in in the morning, only to have his immune system kill them by the evening. They tried one treatment after another, still pumping in platelets each day, only to have the platelet count down that night. So the decision was made to put him on chemotherapy to kill his own immune system and hopefully allow his body to keep the platelets. He was on Chemo for four weeks, and his platelets slowly built up to the point that he was returned to rehab.
Every day I was writing to everyone on Facebook to pray for him, and a large part of our small town and our Church friends were deeply in prayer for him. I'm confident that it was prayer that pulled him through.
It was slow going there, as he was so weak from being in the hospital almost three months, but he's a strong willed man and worked as hard as he could every day. They fitted him with a temporary leg brace, so he could learn how to walk again and do such simple things as getting his own socks on and getting in and out of the bed. So many things we just take for granted, he had to learn a new way of doing them, but he did, and his strength improved, and he came home at the end of February. Home Health made it possible for us to continue his improvement at home, and then he went to out patient therapy for several months.
Yes, we have much to be thankful for. In God's wisdom, the very week that my hubby had reached the point that he was pretty much doing everything for himself, on Easter Sunday night I went to the Emergency Room with severe abdominal pain - and had surgery for a bowel obstruction from 35 year old scar tissue several days later! I had some complications, ended up with aspiration pneumonia, but came home well, but very weak. Then I had Home Health coming out to the house for ME! They did a great job of helping me build my strength back. In fact I was actually stronger when they finished than I have been for the last several years.
But more weirdness was in store for me, it seems. In October my OBGYN did my routine bone density test and found my levels were now in the range to require taking medication for Osteopenia, a dx I had been holding at bay for several years with doses of Calcium and D3 supplements. We discussed which prescription might give me the fewest side effects, and I started the dosage.
Almost immediately I started having severe joint and muscle pain - a sure sign that my Mitochondrial Myopathy was not happy with this medicine. Hoping the side effects would subside, I tolerated the pain, thanks to Neurontin and Methacarbamol, for about six weeks. By then the pain was so severe that I called the doctor and told him what was going on. He prescribed a different medicine, but I decided not to take it until my Neurologist said it was OK.
It took about six weeks to get to see my Neuro, and during that time I was getting by with the strongest pain and muscle relaxer doses I dared to take. When I saw him, he read the PDR sheet for the alternative the OBGYN had prescribed, and told me not to take it. He did ease my mind about how much pain meds I had been taking and actually told me to increase the doses. That has helped considerably.
I'm glad to say that hubby is still improving and walking quite well now with his custom brace without a cane in most situations. That's a far cry from his time in a wheelchair, then walker, then quad cane, and now on his own. Although I am still in a lot of pain, I'm hopeful that careful exercise will gradually improve my situation.
So here we are coming up on Thanksgiving this year, and our family has more than many to be thankful for. We praise God for where we are today. Praise GOD from whom ALL BLESSINGS Flow!!!
Saturday, November 03, 2012
I finally had the appointment this week, and the dialogue with the doctor lasted TWO HOURS!! It was the most thorough question and answer period with a doctor I have ever had in my life. He asked many questions about lifestyle, medical history of mine and my family, my sleeping habits, spiritual values, as well as the obvious questions about my current eating habits.
He asked lots of questions about how my Mitochondrial Myopathy presents, how it is inherited, and all the issues I've had over the years that were misdiagnosed, but were obviously early manifestations of this disease.
He spent time explaining his approach to achieving maximum nutrition. Unlike my desperate visit to the herbalist, there was absolutely nothing mumbo jumbo in his philosophy, but he still obviously embraces much of the holistic approach to medicine.
For the first time since my diagnosis, I have now had a comprehensive blood panel testing for current levels of every imaginable vitamin and mineral, as well as more standard blood panel tests. He's also re-tested my heavy metal levels, as we live very near an EPA toxic site that is still being monitored. The phlebotomist took 14 tubes of blood!!
I see him again in two weeks, and we're looking forward to it. I am to keep a food log for the 7 days prior to the appointment.
In the meantime, he wants me to up my protein intake - and he made specific suggestions about what to eat more of, based on foods I had already indicated that I liked and ate. And he wants me to do chair yoga and meditation daily, practices I have previously only dabbled with.
But the most wonderful and hopeful part of this office visit was his request that I provide him with information, so he could do research on his own about Mitochondrial Myopathy!! I do carry with me in my "medical bag" a card from Mito Action that outlines information for clinicians, and of course that has their url on it. He was very pleased to get that as a start, and I'll be taking a list with us, and lots of printouts, when we see him again.
For the first time in a long time - we feel HOPE!
Wednesday, August 22, 2012
I decided that the only way I was going to be able to get an accurate picture of what nutrients and supplements I was taking was to get out all the bottles and make a spreadsheet of each and every nutrient in them, with the amount of each vitamin, mineral, enzyme, etc., they contained.
That task took me a couple of weeks, because I kept getting confused by all the various ways different bottles displayed their contents. But I finally finished it, and I now know how much each pill costs me a day, how long a bottle lasts, and exactly what the total is for each supplement. I found one, D3, that I felt sure I was getting too much of, so until I can see a Nutritionist, I've cut that dose down considerably.
I've asked every medical doctor I've seen in the last month or so if they could refer me to a Nutritionist, with very little help in that direction. I saw my Neuro last week, and he gave me a recommendation. I have an appointment with that Dr. in November. Until then I'm basing my supplement regimen on my own attempts to do research.
I feel like I'm studying for a medical degree!! And I've about decided I know more about Mitochondrial Myopathy than 90% of the doctors I see.
My Neuro has finally decided that it's time to try to do something about the ongoing pain I have in my neck, down my arm, up into my head, and in the mid back under my shoulder blade. So I had an MRI Monday. The tech really did all she could to make me comfortable, but lying still on my back on a hard surface is just something I can't do. About half way through, the nerve from my neck going past my elbow and down to my pinky finger was causing such intense pain that I started having Myoclonic jerks - all that did was make her have to repeat one of the series - and make me lie there that much longer!
I haven't recuperated from the MRI yet. Still feel completely worn out, plus I had another doctor's appointment yesterday to make me even more tired. I did get some blood work done there that I'm quite anxious to see the results, compared to a year ago when they were so abnormal. I had another appointment scheduled for tomorrow, but I postponed it.
The epidural is scheduled for next week, and I'm trying really hard to remain positive about it. I had epidurals many, many years ago that gave me great relief, and I'm praying for the faith that I will get relief from the ones coming up. It usually takes several to get maximum results. My fear, that I've not totally overcome, is that the steroid will send me into a tailspin of weakness. That has happened to me twice in the last 10 years - once when I was on Parkinson's meds, and last year when I had massive steroids to treat Angioedema (severe swelling of the lips and face from a drug reaction). Both of those times I was barely able to gather the strength to talk, eat, or move around at all for months afterwards. I pray I don't have that kind of problem this time.
I do intend to continue with the series of posts I started about the various supplements I take, as it helps me to think through what the benefits to me are and understand more fully the mechanism by which they work to improve my energy.
I covet your prayers over the next week, and I pray for the faith to depend on the Great Physician, who DOES understand my disease completely!!!
Sunday, July 15, 2012
You don't have to have a Mitochondrial Disease to reap the benefits of proper nutrition. Whether you are trying to improve or maintain your health, I hope you'll find some of this information to be useful. But of course I am not a medical professional, so I can only tell you about what I've read and tried.
Since I have been gradually adding a wide variety of supplements, it's hard to decide how much of my improvement can be attributed to any given effort, but so far I've not stopped taking most of what I've tried.
I've chosen to start this series of posts with information about Co-Q10, because that's the only supplement that was suggested to us by the UAB specialist who diagnosed my Mitochondrial Myopathy. I was told at that time that it might help, but there is no known treatment and no known cure for this disease.
Almost immediately I started working up to an 800mg dose of CoQ10 spread over the day. Because I have a tendency toward insomnia, and I had read that taking CoQ10 late in the day could cause sleep issues, I decided to be finished with the CoQ10 with my afternoon snack. From what I have read it can take several months of use before a person can tell any difference. I seemed to be a little stronger within about a month of starting it. And I'm certainly stronger now than I was in October, 2010.
WebMD is a good place to get simply written information concerning medical issues, so read more about Coenzyme Q10 here. It is a vitamin like fat soluble substance. CoQ10 is a key ingredient in the chain of chemical reactions within the mitochondria in our cells. This process generates 95% of the human body’s energy.
It is also an extremely powerful antioxidant. Antioxidants are needed because all the natural processes that are constantly going on in the body produce free radicals. And we eat, breathe, and come in contact with a world full of chemicals that release free radicals into our bodies. Left un-neutralized by antioxidants, these free radicals can cause genetic mutations that can lead to serious diseases such as Diabetes, Parkinson's, and Cancer.
The cells can't directly use CoQ10 in the less expensive version, which is ubiquinone. But normally humans can easily convert the ubiquinone into the ubiquinol form that the cells can use.
But I'm far from normal when it comes to the way my Mitochondria function, or should I say fail to function. So I decided it made more sense for me to take the more expensive Ubiquinol form, which is not supposed to require as high a dose to receive the same benefit, as it's immediately available to the Mitochondria. I'm currently taking 600mg Ubiquinol, still taking the last dose in the afternoon.
From Fibromyalgia to Heart Disease, there's a long list of diseases and disorders for which taking CoQ10 might be beneficial. I hope you find this post to be useful, and I look forward to reading your comments.
Tuesday, June 19, 2012
The upshot of all those visits is that the Neurologists can't tell me any more than the UAB Neuromuscular specialist told us after the muscle biopsy results came back - there's no treatment and no cure. I can't even get any advice from them on beneficial supplements or my nutrition. So we have basically fired the UAB Neurologist and the MDA Neurologist and don't intend to return to them. I will continue to see my own Neurologist regularly, however, as I need to touch base with someone from time to time for prescription refills and to have someone I can get an appointment with when needed.
I've been having urinary difficulties ever since my muscles started weakening, so I finally decided it was time to try to get help. My Gynecologist referred me to a very nice Urologist, and I have confidence that he will find a way to help me deal with these problems.
I'm spending hours a day doing my own research on vitamins, minerals, and herbs that might help maximize my cellular energy production and minimize oxidative stress at the cellular level. It's a good thing I have a chemistry background. I never thought I'd have a use for that Biochemistry course I took almost 50 years ago! LOL! Not that I actually remember any of what I learned back then, but it has made reading all these online papers a little easier.
I've found several excellent books that I've read from cover to cover more than once, making notes about combinations of nutrients that work synergistically to improve energy production in the cells and decrease the level of gene mutation. And I've also wasted my time on a few books that turned out to be selling some proprietary program, rather than really trying to educate.
Thanks to my research, I've been gradually adding a variety of megadose vitamins, enzymes, and minerals, as well as continuing to use the herbal formulations. And all these capsules, powders, and tablets are showing a positive result. I continue to do my physical therapy, but I seem to have plateaued as far as how much I'm able to do at one time. The muscle fatigue takes over pretty quickly. But I definitely feel stronger walking in public than I did a few months ago. And my neck and back pain are more under control than they were. I was able to find a back support that stabilizes my neck and head, so I can manage sitting in a church pew a little easier, and the Neurontin and Robaxin help with the pain, too.
Mitochondrial diseases are caused by mutations of the DNA in the mitochondia, so it didn't come as a complete shock that my Dermatologist found a squamous cell carcinoma on my face. I had Mohs surgery the next week, and it seems to be healing very well. I had to return to the Dermatologist last week, however, when a patch of skin very close to the scar became painful. The biopsy showed that spot was precancerous, so that area had to be frozen.
Next week I see my Opthamologist for my yearly exam. The retina, particularly the macula, is extremely susceptible to oxidative stress, so it's very important that I do all I can to keep my eyes as healthy as possible.
My Diabetes continues to be under good control with diet, but I have been gradually gaining weight for the last few months - something I'm not happy about at all. I know some of it is water weight, because that's a known side effect of some of the nutrients I'm on - but it's not all water weight by any means. I think some of these supplements have increased my appetite, and my will power isn't holding up too well to the urges. That's definitely an area I need to work on right now.
I'm very thankful that I have been able to improve as much as I have in the last few months. I know a whole lot more about the process of cellular nutrition and ways to slow the genetic mutations. My hubby and I have faith that God will give us the wisdom to make good choices for supplements, exercise, and nutrition, and that He will guide the decisions my doctors make.
Wednesday, April 11, 2012
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!
Friday, March 30, 2012
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!!
Thursday, March 15, 2012
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.
Wednesday, February 29, 2012
As I was recently diagnosed with Mitochondrial Myopathy, I've been doing a lot of personal research trying to understand a disease I had never heard of until a few months ago. We have been told by the diagnosing Neuromuscular Specialist that there is currently no cure and no real treatment available.
The main symptoms that affect my Quality of Life are extreme muscle weakness and fatigue, but I also get Myoclonic jerks, I walk with an ataxic gait, and I have digestive problems, as well as memory issues. And I have Type II Diabetes that is under control with nutrition and weight control. Diabetes is another way that Mitochondrial Disease can manifest itself. In hindsight I suspect that my symptoms probably started showing up about 30 years ago.
One in 10 Americans is affected by a rare disease - that's over 30 million people. That's more than the total number of people living worldwide with cancer! There are more than 7,000 diseases classified as being rare, most of which affect children. I can't even imagine how parents must react when they are told their precious little one has a rare disease - and learn that 30% of the children diagnosed with a rare disease will die by their 5th birthday.
Most of these rare diseases are genetic in origin. There are no cures for these diseases, and only about 5% of these diseases even have a treatment. Less than half of the Rare Diseases have any kind of foundation, advocacy group, or community support group, because many of these diseases affect fewer than 100 people.
My own disease falls under the scope of the Muscular Dystrophy Association, so I do have knowledgeable people I can turn to for help. And online there is a the United Mitochondrial Disease Foundation, as well as MitoAction and several Facebook groups dealing with MITO diseases where I can go for information and support. You'll find me on FB in the 250+ member Mito Adults group - just ask on the group to join, if it would be a good fit for you.
You can help them:
VISIT the R.A.R.E. Project site and learn more. DONATE to help with research if you can.
LIKE and share the Global Genes Project Facebook page with your FB friends and be one of the hoped for Million who show their support for families facing one of these rare diseases.
WEAR jeans today to increase awareness of the need for more research and funding for genetic diseases. Hopefully your workplace is involved in Jeans for Genes as a MitoAction fund-raising effort today. But if not, you can still donate to these causes.