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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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God’s Healing Sunlight

Day by Day with a Movement Disorder Posted on March 31, 2018 by Dirty ButterMarch 31, 2018  

Healing Sunlight

When I left off in my last post, I had just been diagnosed with my second MRSA infection. And that was right after getting over a Strep infection. So I had a very sick winter. Thank goodness we’ve had some early Spring days, and I’ve been able to get out and sunbathe several times already. God’s healing sunlight has helped tremendously in making me feel better and stronger. Even on cloudy days when I can’t sunbathe, I’m back to walking around the house several times a day. I can feel the strength slowly come back. And I truly believe the sunlight has a lot to do with it.

I have continued to use my RubyLux sunlamp arrangement I’ve set up in the small bathroom, along with the SAD light and the 860mm infra-red light. They got me through the winter, and I can tell they help. But good ole SUN just makes a huge difference for me.

I had routine blood work done recently, and my vitamin D level is very good. I went back on a supplement in the fall. Hopefully I can stop taking it once we get lots of pretty days, and I’m able to sunbathe almost every day.

Sleep Still an Issue

I started having trouble staying asleep somewhere back this winter while I was sick, and I haven’t found a way to solve it yet. I would fall asleep quite easily, but then I would wake up to go to the bathroom and it took hours to get back to sleep. Eventually I just waited for a while and then got up and worked on the computer until time to get up. I’m now making myself stay still and just lie there until I finally do go back to sleep. But my actual number of hours sleeping are too interrupted to be very restful.

Circadian Rhythm Strategies

I’ve worked really hard to use as many of The Energy Blueprint* strategies as I can to improve my Circadian Rhythm. I wake up to the birds singing outside every morning, and I get bright sunshine in my early morning walk. When it’s cloudy, I use the SAD light in my bathroom sauna setup. I usually walk around the house several times a day, too, so I’m getting plenty of sunlight and fresh air, and as much exercise as I can tolerate.

I use blue blocker glasses and a blue light app on my computer and Kindle at night. We use room darkening curtains and red light flashlights if we get up in the night. And I don’t have anything to eat for about five hours before bed. We cool the house down after 8PM all year round. We have a bedtime routine and a regular bed and wake up time. I turn off the WiFi at bedtime, too, and we don’t have any electronics on during sleep.  I’d hate to think how little sleep I’d be getting if I weren’t doing all that.

Constant Headache

Somewhere along the way, a couple of months or so ago now, I started having a headache every day. Sometimes I wake up with it, but it usually starts between about 10AM and noon. Then it goes on until I fall asleep at night. I can ease it some with a hot pad on my neck, and I can distract myself from it while I’m busy during the day. But it’s still there, getting worse as the day goes on.

So I finally gave in and started taking Goody Powders, even though I know I shouldn’t. After using them several weeks, I stopped the Goody Powders. I figured it had probably turned into a rebound headache by then. I toughed out two weeks, but the headache never stopped. So I’ve gone back to one Goody Powder before lunch for now. And yes, I know that is toxic to my body and doesn’t help with sleep issues. But nothing I have tried in the way of stress relief or sleep strategies has stopped the headaches so far.

Doctors

I’ve made an appointment with my Neurologist. I’m hoping to get a referral to a Sleep Specialist doctor I saw years ago when they thought I had Parkinson’s. I weighed 50+ pounds more back then, and I was diagnosed as having Sleep Apnea at that time. I have dealt with urinary incontinence for quite a few years now, and that might be the problem. The brain is supposed to tell the kidneys to stop making so much urine during sleep. It sure doesn’t seem like THAT is working properly! I don’t know what’s causing all these sleep issues, but I do know I need help fixing them.

Posted in Quality of Life | Tagged Circadian Rhyrhm, headache, Quality of Life, sleep, Sleep Apnea, sunbathing, sunlight, sunshine, The Energy Blueprint | Leave a reply

Earliest UNDIAGNOSED Symptoms of Parkinson’s Disease????

Day by Day with a Movement Disorder Posted on July 15, 2007 by DBJuly 15, 2007 35

Hi Rosemary

First I want to thank you for taking the time to blog. You may not be aware of important I find it to hear others Parkinson’s and day to day life experiences. I appreciate it very much.

I am writing to you because my interest in PD came because I began having symptoms which I suspected might be PD. Fortunately my symptoms are very irregular and inconsistent and not at all affecting my ability to function. The Neurologist I am seeing is not good and is pretty much dismissing my symptoms as nothing. This is fine with me or maybe wishful thinking. I will have resting tremors in my left thumb on occassion as well as jerking limbs, and muscle trembles throughout my body, weakness, etc. Again there are very inconsistent and really could be normal daily problems or another issue. I am very much into Holistic and Natural health so have been doing many things to minimize or slow and potential problem I have. I am 45

I started looking for blogs to see what people reported as initial symptoms long before they were diagnosed with PD. I suspect my symptoms maybe be things people have looked back after they were diagnosed and say yeah, now I remember I had problems long before I realized there were problems. I cannot find such a blog and I am really curious as to when you reflect on your past, when did small signs begin to show up and just ignored or dismissed them. Or whether you had inconsistent symptoms at first. I could be completely wrong, I have no idea!

So after that long winded explanation I have a request. If you have the energy and time at some point, I would like to see a blog from you of your very early years working up to PD. No pressure and no hurry. It would be very much appreciated.

Keep up the blogs and my prayers are always with you

Ted C

Ted wants me to try to look back and pinpoint some of the earliest signs that may have been Parkinson’s symptoms that the doctors missed. I’ve mentioned several things in other posts about what I now believe were warning signs that were not detected. I’m not criticizing the doctors about this, as hindsight is always better than foresight. There’s absolutely no way of knowing if I’m correct on any of the possible signs or not, but I’ll try to list as many things as I can remember that were puzzling at the time and went undiagnosed or ignored.

I really do have back problems that are unrelated to Parkinson’s, as I have Degenerative Disk Disease. There have been many trips to different doctors over the years with back pain and weakness in my legs. There were times as long ago as 15 to 20 years ago when I was walking slower than my parents, who were in their 80’s at the time. Doctors were able to alleviate the pain with epidurals, but the walking problem always gradually disappeared on its own and then returned just as mysteriously.

I’ve had spells of mental fog for many years, which I always blamed on female hormone problems, as I was very young when I had a complete hysterectomy, or on the stress of teaching and later as a caregiver. I was on hormone replacement therapy all that time, though.

I had a diagnosis of Functional Dysphonia while I was still teaching, which means that I could not talk at all, but it was supposed to be psychosomatic. The doctor attributed it to stress. I had bouts of severe laryngitis over a period of many years. I had always been in the choir at church, but about 15 years ago I reached a point where I could not sing through a verse without feeling like I was being strangled, with someone squeezing tightly around my neck. My breath volume was greatly diminished, too.

I went through several years of Migraine Headaches. The Neurologist I was seeing at that time found that I had a positive Babinsky reaction, which means my toes didn’t do what they should have when he scraped along the bottom of my bare foot. He concluded that I had probably had one or more concussions from childhood falls. He did not cure the headaches, but the episodes finally slacked off on their own.

I had a very scary episode about 15 years ago in which my left arm went totally to sleep one night while I was watching TV. It took a lot of massaging and soaking in hot water to finally get feeling back in it. When I went to the doctor about it, she diagnosed me as having Mitral Valve Prolapse. Some years later, I had an echo cardiogram, and there was no indication of MVP. I still have to be careful that I don’t keep my hand too still when we drive for any distance, as it will still go to sleep. The same thing happens in the dentist’s chair. These symptoms are probably from a spur on a cervical vertebra, but who knows??

One symptom that I had never gone to a doctor with was the way I would think I was smiling when my picture was taken, only to see that my face was blank when I saw the photo later. That is a definite Parkinson’s trait, and it’s been something that I was aware of for many years.

There may be other symptoms that I’ll think of later, but I’ve read this post to my DH, and he’s in agreement that these are an accurate list of some of the puzzling things that have happened to me over the years. I hope other Parkies will contribute to this post, too, so it will be as informative as possible.

Posted in Uncategorized | Tagged brain, difficulty walking, headache, insomnia, Parkies, Parkinson's, psychosomatic, stress, swallowing, symptoms | 35 Replies

43rd Wedding Anniversary!

Day by Day with a Movement Disorder Posted on June 14, 2007 by DBJune 14, 2007 8

How about that! Yesterday we celebrated our 43rd wedding anniversary. We’ve actually been seriously in love since 1960, but we waited for me to graduate from college before we got married. I wouldn’t recommend that long an engagement to anyone, but getting my education was important, and it’s helped our family financially all these years.

We went to a movie and ate out and generally enjoyed being with each other, as we always do. I would wish that all marriages could last so long with so much love still there after all the years.

It did get me out of the house and away from all these estate issues. We’ll go to the bank today and open the ESTATE bank account and change over all the CD’s to our name. That will be a couple of more things I can then cross off my task list, which is a very satisfying thing to do.

What with all the stuff we’ve been cleaning out of Daddy’s house, I finally got up the gumption to clean out Pop’s closet at our house. My FIL lived with us the last few years of his life, and when he died, I just couldn’t bring myself to deal with his clothes. They weren’t really in my way, so I put it off. Well, now I need the closet to store some of Mama and Daddy’s stuff until we can sell it on eBay, so all of Pop’s things are bagged up and ready to give to the Thrift Store. I will have to get the name tag labels out of everything, though, as he was in an Assisted Living home his last year, and everything is marked.

I’ve finally worked our eBay store back up to 250 items listed, which is about all we can afford at one time. Maybe now some other things on my To Do list can move up the line.

I did sleep longer last night, but it was because I took a Darvocet last night. The movie gave me a headache, plus I was generally achy all over. I think I’ve been over doing it lately, trying to box a lot of things up. Doing a lot more leaning over and picking things up than I have in a long time, and my muscles are complaining about it. Walking is great, but it doesn’t take care of all the muscle groups. I have been doing some simple arm exercises with the 1 lb weights, and I’ve gone back to doing all the neck and shoulder exercises that the Physical Therapist put me on some years ago for the degenerated disk in my neck. I continue to do the Tai Chi, as well, so I’m really trying to build up my muscle tone. I do have a set of exercise videos that I bought several years ago, but that means getting down on the floor. Getting down isn’t the problem .. getting back up is! LOL So, I’m postponing using them for awhile. I figure by the time the weather turns cold I’ll be strong enough to get up and down safely.

We’re still waiting for them to start work on our new garage, as we special ordered everything to match our house. I’m getting antsy, seeing that beautiful driveway and slab, with no building going on. But it will come, sometime soon. I just need to be patient.

Our older DD and SIL have moved into Daddy’s house, in the midst of quite a mess. I’m glad it’s them and not us!! But youth puts up with stuff that age can’t or won’t. We’re working as hard as we can to empty the house of all of my parent’s things, but it’s a slow go.

So, I continue to stay busy, improving little by little each day. Crossing things off my list reduces my stress level, so I rejoice every time I finish one small part of this huge undertaking. Some days I have to hunt for something to feel positive about, but I work hard at staying optimistic. Thanks to all of you dear friends for your encouragement!!!!

Posted in Uncategorized | Tagged eating out, eBay, exercise, headache, insomnia, Physical Therapy, Quality of Life, settling an estate, stress, Tai Chi | 8 Replies

Another Day Goes By

Day by Day with a Movement Disorder Posted on December 10, 2006 by DBDecember 10, 2006 4

Thank goodness the headache was gone yesterday. I can’t say the same for the cramping tummy, though. I started out OK enough, but Daddy had a bathroom accident, and cleaning him up really unsettled my stomach. I managed pretty well while the cleaning was being done, holding my breath a time or two, but once everything should have been through with, then I started feeling nauseated. I spent the rest of the day with the hot pad on my stomach and abdomen, trying to ease the cramping.

I’ve checked my blood pressure, too, thinking that might have something to do with how bad I’ve been feeling. Sometimes it’s been too high, like 144 over 80, but most of the time it’s been just fine. I keep getting these fleeting feelings of lightheadedness or dizziness, which could just be due to tiredness, since the BP is usually OK.

At least I did accomplish something yesterday afternoon. DH wanted me to go to the house for a couple of hours, just to get away, but I really didn’t feel good enough to want to move. So I told him to just pretend I wasn’t here, and I’d rest where I was. So, while he took care of Daddy, I did the research and wrote the descriptions for 5 baby toys to put on eBay just as soon as I can get the photographs taken.

I’m looking forward to Francis coming this morning to give me some more time away from Daddy. That should help. If my tummy seems OK after breakfast, I’ll go to church. If I’m still uncomfortable, I’ll probably just stay home and rest. Whatever I do, being at home or at church and away from the care giving responsibility momentarily will do me good.

Hopefully, I’ll feel good enough to get the photos of the toys done, so we’ll have some items on auction this week. This should have been our busy time online, but under the circumstances, there was just no way to make that a priority. After all, it’s only a hobby, but it’s a hobby that gives me a lot of pleasure, and I need that release right now, too. So I have to balance my time and energy to keep myself as calm and relaxed as possible and still be helpful with Daddy. It’s not fair to DH for him to end up doing everything, particularly since Daddy is such a pain to deal with most of the time.

If anybody’s BP is high, it would be my DH’s, who finds himself constantly stifling the urge to come back with an equally sharp remark, after Daddy has said something particularly insensitive or controlling. He’s always been that way, although I know he loves me, and for the most part I can let it go in one ear and out the other. But DH is overprotective of me, and Daddy makes him mad now.

Posted in Uncategorized | Tagged blood pressure, care giving, gas, headache, nausea, pain, respite care, stomach, stress, Sunday | 4 Replies

Feeling Good Today, But Giving Up on Blogger for Now

Day by Day with a Movement Disorder Posted on November 17, 2006 by DBNovember 17, 2006 2

I felt much better today, waking up without a headache, neckache, or sore shoulders. I even managed to get through the day with only a little bit of nausea. I was able to make a brisk walk up to Daddy’s and back this morning, without getting too tired, and I’ve practiced the Tai Chi form once today, too.

I spent most of today trying to get this blog template to suit me, but I’ve decided that I’m going to give in and call it quits. I was hoping I could learn enough XHTML to be able to make the changes I wanted to make, but it’s just taking too much of my time, what with Thanksgiving so close. Maybe I’ll play with it some more later on, after the Holidays are over.

Posted in Uncategorized | Tagged beta Blogger, exercise, headache, nausea, pain | 2 Replies

Blog Move Is Finished, More or Less

Day by Day with a Movement Disorder Posted on November 13, 2006 by DBMay 7, 2016 2

I’ve been a very busy lady, working to turn the plain black and white template into what looks as much like what I had before as I possibly can. There’s bound to be something I’ve forgotten to do, but I’m sure I’ll realize it sooner or later ;).

I’ve been sitting very still at the computer pretty much all day for the last few days, as that’s the only way I can keep the nausea under control. I’ve had a bad headache, too, for the last few days. My neck and shoulder muscles have been so tight that I think that’s where the headache is coming from. I’m thinking the Requip dose may not be quite strong enough, but my stomach is not handling the dose I’m on now as well as I’d hoped.

I’ve sent off a description of my situation and my meds to ASK THE DOCTOR – National Parkinson Foundation to see what that doctor thinks would be the best course of action.

So I seem to go from a few good days to weeks of feeling not so good. I don’t know which doctor to call again, and that’s why I’ve written to the Ask the Doctor site, hoping they could give me some guidance.

PS. I just checked the blog with IE, and I see that it only has one column! I played around with the column width just for a moment, with no change at all. So that chore will have to wait for another day. Just bear with me, folks.

Posted in Uncategorized | Tagged beta Blogger, gas, headache, nausea, pain, Requip | 2 Replies

Flu Shot Side Effects?

Day by Day with a Movement Disorder Posted on November 11, 2006 by DBNovember 11, 2006 2

Leave it to me to be one of the small percentage of people who get the side effects from having the flu shot! Maybe it’s because I’ve been so sick this year with the colitis, or because I was so recently sick with all the gastro problems. Or maybe it’s the Parkinson’s or the meds I’m on. Anyway, I’ve been aching all over for the last few days and running a low grade fever. I’ve also had the first headache that I can remember in a long time, so I’ve been taking extra strength Tylenol pretty regularly.

I’ve also had a bout of having to be close to the bathroom again, if you know what I mean. The gastroenterologist had told me if I started having that problem to cut the Zelnorm pills in half, so that’s what I’m doing now. It hasn’t solved the problem yet, so we’ll just have to wait and see. My digestive system is so sensitive anyway, that all these medicines are dealing havoc with it. I’m glad most Parkinson’s folks don’t have this much trouble!!

I do feel better today than I have the last few days, so maybe it’s about over now. I hope so, anyway.

Posted in Uncategorized | Tagged flu shot, headache, Zelnorm | 2 Replies

Is My Mind Playing Tricks on Me??

Day by Day with a Movement Disorder Posted on August 26, 2006 by DBAugust 26, 2006 2

Another reason I’m afraid of using a walker in public is that I’ll be setting myself up for future embarrassment. I’ll have to explain that one.

My original back flare up, that precipitated this difficulty walking, was caused by spending the better part of this last year taking care of our older daughter, as she was in and out of the hospital something like ten times for about 60 days total. I stayed with her constantly with each hospital trip, “sleeping” in a recliner, and my back paid for it.

I took care of her at home in between hospital visits, too, often getting up in the middle of the night for hours dealing with her needs. I all but single handedly packed and unpacked their things, as the apartment our SIL and she were in was not handicap accessible. The apartment people moved them from one apartment to a better one that she could get in and out of easily, and it had an extra bathroom, too, which was a big help. All that packing and unpacking took its toll on my back, too.

I survived by just about living off of Goody powders that whole year, as I kept a backache and a headache almost constantly. So why am I worried about being embarrassed??

Our daughter developed Peripheral Neuropathy as a result of nutritional deficiencies from Gastric Bypass surgery that she had had almost a year and a half before. In a matter of a couple of weeks, she went from noticing being a little clumsy to not being able to hardly stand at all!! It took them quite a while, with lots of second opinions and tons of tests to decide on a diagnosis and course of treatment, but she’s doing fine now.

What worries me is that the stress of all this may have caused me to develop a psychosomatic illness, triggered by the very real pain I was experiencing from my herniated disk. When the epidurals took care of the pain, the walking did not improve. Here I am, with Peripheral Neuropathy, after helping our DD, who has Peripheral Neuropathy?? Sounds a little fishy to me, don’t you think?? Oh, and before you jump to a wrong conclusion, dear reader, she’s adopted, so that rules out a genetic link.

Our family knows just how much stress I have been under for some time, as I have been the care giver for my mother and FIL with Alzheimer’s, my DH with cancer, and have had surgery myself, besides taking care of our DD. I’ve also been the main care giver for my Daddy, who is now 101, lives by himself, and is legally blind. Yes, he’s amazing!

My family will understand if I am suddenly “cured”, because it turned out to be all in my mind, and not a physical problem. I’m not so sure others will be so forgiving, but will think I was trying to get sympathy or something, using the walker when I didn’t “need” it.

Posted in Uncategorized | Tagged difficulty walking, headache, herniated disk, peripheral neuropathy, psychosomatic | 2 Replies

Went to Bed Early – Woke Up Early

Day by Day with a Movement Disorder Posted on August 23, 2006 by DBAugust 23, 2006  

It’s so aggravating when my sleep schedule gets mixed up like this. I made myself stay in bed until 5 by the hardest, but I had the beginnings of a headache by then. I took 2 of the Tylenol arthritis pain meds, so my neck wouldn’t bother me all day and got up. Now I’m on the computer and yawning. Go figure.

Anyway, my legs and back were aching some last night from all the walking yesterday, but other than that, I’m OK. I did have a little trouble after the MRI yesterday. I was very wobbly after the test and had to ask for some steadying help to get back to the dressing room. DH knows me well and had a bag of M&M’s waiting for me, so I finished the Powerade and ate the peanuts and by then I was OK. We stopped and got one of the new Chick Filet’s chocolate shakes on the way home, too. He knows how to pamper me.

I did some research on brain tumors last night. I really haven’t allowed myself to think in that direction up until now, but getting the brain scan kind of pushed my thinking that way. Knowing I’ve been diagnosed with an angioma in the past, plus having the increased cerebral spinal fluid before, makes it much more of a possibility. We won’t know anything until maybe Friday, so I’ll just stay busy today.

Posted in Uncategorized | Tagged brain, CSF, headache, MRI, tests, tumor | Leave a reply

MRI Scheduled!

Day by Day with a Movement Disorder Posted on August 22, 2006 by DBAugust 22, 2006  

April, from Dr. S’s office, called yesterday afternoon, and I’m scheduled for the brain MRI today at 2:30!! I was determined not to spend any time waiting around for HealthSpring to approve the tests, but I sure am glad they did it sooner, rather than later.

I ‘ve had this type of MRI done before. In fact, that’s why he wants this one. When I had it done years ago, it was because I was having severe migraine headaches. I had a terrible headache the day of the test, and it was all I could do to keep from throwing up with all that hammering. At least now, with the Topamax, I don’t go into the test hurting. That previous MRI showed increased cerebral spinal fluid pressure, with a wide white space between the two halves of the brain. It will be interesting to see what this one shows, because the Topamax is the only thing that’s keeping me from having migraines now. I was living off of Goody powders before he put me on those. I’m on the steroids (Entocort) now, too, for the colitis, so that may make a difference, too.

Anyway, this is the MRI where they put your head inside a football helmet thingy, and you have to stay completely still through the whole thing. I don’t know if they will be using dye or not. They did last time. I’ll have to fill up on fluids today, just in case, so the IV will be easier to get, if they need to.

Posted in Uncategorized | Tagged brain, CSF, headache, MRI, steroids, tests, Topomax | Leave a reply

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