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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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Cortisone Shot Again

Day by Day with a Movement Disorder Posted on August 10, 2007 by DBAugust 10, 2007 2

I went yesterday and got another cortisone shot in my right knee, and I can already tell that it’s beginning to help. The Orthopedist says he doesn’t like to do them more often than every 3 months, so that gives me some idea of how long I would need to wait until I could have it done again. I was doing OK on this last shot, until I did too much packing of stuff of Daddy’s, which involved squatting down. That’s just something I can’t do anymore, not only for the knee’s sake, but also for other problems I’m having. I’ll just have to do all the other exercises for my knee that the Physical Therapist gave me, and leave that type of exercise out of my routine.

It’s just too hot to walk at the track right now, with 103 yesterday. Even at 5:00AM it’s just too hot and the air quality is too poor to be out there, so we’re exercising in the house to some videos. Well, hubby is following the video, and I’m bouncing very carefully on the mini trampoline at the same time.

I noticed a vague nausea last night after supper again. The same thing happened night before last, but I’m not sure where that’s coming from. The Amitiza I’ve just started on is bad about that, so that may be what’s going on, or it could be the elimination problem I’m having causing it.

The steroids always make me not sleep, even before I had trouble with insomnia, so I managed the C-pap until about 1:00AM and then I just couldn’t get back to sleep with it on. I was pleased I got by with it that long, knowing how the steroids do me. I will get used to this thing … I will get used to it!! Just have to keep telling myself that, and take each day at a time.

Posted in Uncategorized | Tagged Amitiza, C-PAP, Cortisone, elimination difficulties, exercise, insomnia, knee, nausea, Orthopedist, Sleep Apnea | 2 Replies

Digestion Problems Worsen

Day by Day with a Movement Disorder Posted on July 26, 2007 by DBJuly 26, 2007 1

I have an appointment with my Gastroenterologist for this next week. Even though I have faithfully taken the Myralax each morning, take Metamucil every day, have been on the Bowel Retraining regimen, using the glycerin suppositories, and I’ve been really careful about what I was eating, I’m still having bowel problems. For lack of a better word for it, I would call it constipation, but it’s more like the colon and rectal muscles just are not working properly. Before I was diagnosed with PD last year, I had a four month bout with diarrhea that was very difficult to stop. The Gastro treated me with the same meds that would be used with colitis and Irritable Bowel Syndrome, so that may be what’s going on now. From what I’ve read, the IBS spasms can cause some really strange symptoms, which fit mine fairly accurately. I won’t gross you out with any details. Let’s just say things are not as they should be.

Other than that, I can report positive improvement with my right knee, which I had twisted again. We took off several days from the track, I have been staying on the computer more and reading more, and generally letting it rest. I did walk 1 quarter mile lap yesterday, and another today. Mostly I’ve been doing the exercises that the Physical Therapist outlined for me. I’m thinking I probably need to get some kind of knee brace to use in situations that might aggravate it, such as the clearing out I was doing of Daddy’s things that set this episode off.

So, I wait for the Gastro appointment, look forward to the Sleep Study next weekend, and baby my knee while it slowly heals. DH, as always, has been super considerate. He keeps me laughing over his foolishness and does so much for me. No one could ask for a more loving and caring helpmete.

Posted in Uncategorized | Tagged bloating, Bowel Retraining, colitis, elimination difficulties, gas, Gastroenterologist, glycerin suppositories, insomnia, knee, Metamucil, Miralax, Parkinson's, Physical Therapy, Sleep Study, stomach, symptoms | 1 Reply

Can’t Make Up My Mind

Day by Day with a Movement Disorder Posted on May 20, 2007 by DBMay 20, 2007 6

I’ve been going back and forth since Friday, trying to decide whether or not to join the St. Vincent’s Health facility. We toured it Friday afternoon, and the place is really impressive. But when I found out the price, and now that I’m certain that my DH is not going to join, I’m just not sure what to do. If he had joined, I wouldn’t be feeling guilty about all the time it’s going to take to drive there and back, plus the time I’m there, too.

I can justify the cost, if I choose to go, as just being another expensive medicine. If the doctor were to prescribe something that costs $65 a month, and he really thought it would make a positive impact on my Quality of Life, I’d pay for it, without hesitation. So, even though that is a lot of money, I can’t decide not to join just based on cost.

Being dependent on DH to drive me there, wait on me, and then drive home, is very depressing. I’m sure I would join if I could drive myself there, but that’s just not going to happen. It would mean driving on Highway 280, the most congested road in Alabama.

When I had said I was going to join, DH let it slip that he really wasn’t enjoying going walking in the mornings. He’s a night person, so getting up that early is not what he wants to do. He’s been keeping that to himself, because he wanted me to get the exercise. I feel bad that I’ve been hauling him out of bed all this time, when he really didn’t want to, but it’s just like him to put my interests over his.

So now my dilemma is that I don’t want to put him out again, by going so far from home to exercise. I think if it were just exercise equipment, I wouldn’t have any trouble saying no. But there are Yoga and Pilates classes, plus Aquatic classes for Arthritis folks, a shallow therapy pool, a large jacuzzi, a sauna, and a steam room. Hmmmm…. those sound so soothing on aching muscles.

I can’t count how many times I’ve changed my mind this weekend LOL!! This whole wishy washy episode has really brought home to me how very upset I am that I have to depend on somebody else to help me do things I used to be able to do by myself. I don’t like it one bit!!

Posted in Uncategorized | Tagged depression, exercise, knee, pain, Parkinson's, peripheral neuropathy, Physical Therapy, Quality of Life, St. Vincent's One-Nineteen | 6 Replies

No Surgery for Me!!

Day by Day with a Movement Disorder Posted on May 17, 2007 by DBMay 17, 2007 4

I went back to the Orthopedist yesterday to find out the results of the MRI on my knee. He says I have arthritis, and not a torn cartilage. There are two kinds of cartilage in the knee, and it’s the one that is smoothed over the bone that is becoming thin in my knee. That’s whats’ causing the pain, as bone scrapes against bone. He said I could come back when I needed another Cortisone shot, and eventually, when I can’t stand it any more, he can do arthroscopic surgery to smooth it all back out and decrease the pain.

That was what I was hoping he would say, so we’re very relieved. Now I won’t be quite so timid with my exercising. I plan on making an appointment with the St. Vincent’s Sports Facility for next week, and will more than likely join. I’m not having any success getting my DH to agree to join, though. He’ll have to drive me and wait on me, just the way he was doing the physical therapy, so it would be great if he would join. Then he could do his own exercising while I do mine. It’s tempting to nag … but I’ve been around long enough to know that that will backfire. So, I’ll go for me, and maybe he’ll change his mind.

I was awfully sore from the waist down yesterday. I can’t really tell when I’m overdoing it. I don’t feel like I’m doing too much at the time, but my body sure does complain that night. LOL My walking really has improved a lot, though, and I’m still doing the exercises that the PT gave me.

So I’m feeling good about my ability to gradually improve, as long as I don’t overdo it.

Posted in Uncategorized | Tagged difficulty walking, exercise, knee, pain, Physical Therapy, Quality of Life | 4 Replies

Ahhhh Sleep!

Day by Day with a Movement Disorder Posted on May 13, 2007 by DBMay 13, 2007 2

Well, the Sonata did its job last night, and I actually managed to sleep in one stretch from 10:30 to 4:30 this morning. I feel much more rested for it, too. I’ll probably continue taking it for the next few days in an attempt to retrain my system. I’ve always been the kind who could tell myself when I needed to get up, and I’d wake up on my own. So, it seems like I ought to be able to tell myself to get up later and later, until I’m sleeping a decent number of hours, right?? I wish.

I must have found the correct place to put the step counter on my waist band yesterday, as it showed almost 3000 steps by the end of the day. That’s a long way from 10,000, but a place to start. I spend so much time on the computer …. maybe I need to get one of those treadmill setups where you work on the computer while you walk. It’s supposed to be an easy way to build up your exercise tolerance. They already have book racks on treadmills … why not a place for a laptop??

I’m still on the Tylenol for pain relief, and I’m still using the hot pad when I go to sleep, so the pain is quite noticeable. Mind you, this pain is nowhere near as bad as some other times in my life. That’s why I don’t want to consider any surgery on my knee. If it’s arthritis, though, that will make me braver to use it more aggressively, and if it’s a torn cartilage – I’ll probably end up getting a knee brace. I’m getting anxious to find out. I never did like having to wait for results from tests. I’m like a pouting little kid about that.

Posted in Uncategorized | Tagged computer addict, insomnia, knee, MRI, pain, Quality of Life, torn cartilage | 2 Replies

Insomnia Is on the Prowl AGAIN

Day by Day with a Movement Disorder Posted on May 12, 2007 by DBMay 12, 2007  

Looks like the Requip has my bout with insomnia going full force again. I didn’t get to sleep until after 11 last night, but I’ve been wide awake since 2:30 this morning. It’s been pretty much like this now ever since I started back on this particular medicine. I do have some sleeping pills, but I’ve resisted taking them, hoping my system would adjust. But tonight, I will definitely be taking one.

I do get a lot done when I’m in one of these moods, though! ROTFL I’m just about ready to change the listings on all our current eBay items to reflect all the changes the Post Office is making in Rate Classifications and prices. Just a word of warning to all of you …. don’t be surprised if it costs considerably more to get something mailed to you from now on. The PO has really raised their prices tremendously, for some package situations as much as 700%!!!!

We bought a pedometer for me the other day, but I’m not convinced that it is counting every step I take. If it is, I’m not moving nearly enough in a day. DH isn’t having any trouble at all going over 10,000 steps a day, and I barely went over 1,000!

My exercise program is coming along nicely, though, and my legs continue to gain in strength. I’ve been trying to understand exactly how to improve my posture and gait, based on the Chi Walking book I mentioned several posts ago. I wish I had someone who could just show me how, instead of trying to figure it out from pictures and words. I really don’t have a very good kinesthetic sense .. in other words, it’s hard for me to really tell where my body is. But that’s nothing new …. I’ve always been that way, even as a child. I remember struggling to try to learn how to do a summersalt, and giving up finally. The Tai Chi routine does help me to be aware of where my body position is, and I’ve started doing that when we go to the track. DH walks 2+ miles in the time it takes me to do all my exercises, walk a quarter mile, and do my Tai Chi, with maybe a little time left over to clean out the car of all the junk it seems to accumulate so quickly, or to read a little. It’s a great way to start the day off, with a feeling of accomplishment right off the bat.

So far, the only obsessive behavior I’ve noticed is that my craving for chocolate has gotten out of hand again. I did without any for such a long time, but when Daddy died I went back to eating it every day. I’m not supposed to eat it at all, because of the GERD I have. I’m really very good about avoiding everything else the Gastroenterologist has put on my banned list, but when I’m stressed for depressed, I have to have my chocolate. Nothing else will satisfy that craving. And I’ve always been that way. I can remember getting into trouble as a child on more than one occasion, because Mama would go to bake a cake, and I had eaten the bitter dark chocolate in the refrigerator. So when I read things about how chocolate contains chemicals that relieve stress, I believe it!

Posted in Uncategorized | Tagged Bradykinesia, exercise, gait, Gastroenterologist, GERD, insomnia, knee, OCD, Requip, stress, Tai Chi | Leave a reply

Standing MRI & A New Friend

Day by Day with a Movement Disorder Posted on May 9, 2007 by DBMay 9, 2007 2

I had the standing MRI yesterday, and that was quite a bit different from the lying down kind. First of all, it would be much better for anyone who is claustrophobic, as I was not closed in, and they actually had a big screen TV set up so I could watch it.

As far as my procedure was concerned, it was not very comfortable. The whole point was to take the MRI while I was putting weight on the knee, so I had to stand at about a 60 or 70 degree angle, I would guess, and be very still for about 30 minutes. By the time it was over my knee was really complaining, but it was worth every moment of it, if it gets them a better idea of what’s going on in there. I still don’t expect it to be torn cartilage, but soon I will know. Their brochure showed pictures of regular MRI views vs their stand up kind, with obvious disk problems that didn’t show up when the patient was lying down. I may ask for that kind the next time I have to have one on my neck or back, for just that reason. I’ll see the Orthopedist next week to get the report on it.

I’ve added the beginnings of a section on Radial Neuropathy to my side bar, not because I have that, but because I’ve recently started emailing back and forth to a new friend who has it. She and I live in the same small town, I taught her husband, know her MIL, and we’re even members of the same church. And neither one of us knew each other LOL!! It was the Physical Therapist we’ve been going to, who gave her my blog URL, that got us together. She promises that she’ll be posting here, so hopefully she can make contact with others who have problems more similar to hers. My Neuropathy is most noticeable in my legs, although my hands and arms are involved, too. Hers is severe, but I’ll leave it to her to explain it.

I noticed the nausea from the Requip about 11:00AM again yesterday, but a few crackers stopped it. I’m still getting sleepy at the wrong time, as I nodded off early last night watching TV, and I’ve been up since 4:00AM. Actually, I woke up a little after 3:00, but I made myself stay put, thinking I would go back to sleep. No such luck.

I can’t tell any difference in my gait yet, but it may take a week or so before I would notice anything, anyway. I don’t remember reading anything about how long it takes Requip to take effect, so I’ll have to try to do some research on that.

Oh, remember when I was having so much trouble typing? That has definitely improved. It must have been the stress of dealing with Daddy that was making that worse. Parkinson’s folks don’t handle stress as well as others do. I still make more mistakes than I’d like, but nothing like it was for awhile there.

I’ve done my morning exercises, but we’re still not walking at the track. Hubby’s poison ivy is getting worse, not better, and he’s so stubborn I can’t get him to go to the doctor about it. So he’s just slathering on the anti-itch medicines I already had in the house, and he’s trying to stay cool.

Speaking of cool, my temperature regulator is all off whack. I’ll have hot flashes one minute and be freezing the next. I’m putting my jacket on and pulling it off constantly!! This is a Parkies thing, too, so there’s not much else I can do about it.

I’ll spend the day today writing descriptions and finishing the pictures I took this morning, so I can put some new items on eBay tonight. DH has gone grocery shopping, a regular Wednesday morning routine of his, and a chance for him to stop and chat with his buddies. I guess that pretty well catches me up for the day. I hope you are having a good day, too.

Posted in Uncategorized | Tagged Bradykinesia, eBay, exercise, gait, insomnia, knee, MRI, nausea, Orthopedist, Parkies, peripheral neuropathy, Physical Therapy, Radial Neuropathy, Requip, stress, torn cartilage, typing | 2 Replies

Starting Requip Again – Stopped Physical Therapy

Day by Day with a Movement Disorder Posted on May 8, 2007 by DBMay 8, 2007  

Yesterday was my last time for Physical Therapy on my knee for now. I called my insurance company, and they only allow 15 PT visits a year, unless THEY approve the extra ones, and I’ve used 7 of them already. So, I figured I’d better leave myself with some, in case I have other problems before the end of the year.

I asked her about using the mini trampoline we have, and also a little stepper and an exercise ball. Her concerns had to do with balance, but other than that, she thought they would be fine. She said the stepper was a particularly good one for a PWP, because of the repetitive alternating motion. Of course she cautioned me to go slow about adding minutes to it, and to rest every other day or every two days. She’s very emphatic about reminding me that the Parkinson’s means I have to rest my muscles more than other people would need to. But she emphasized that I need to be on a regular exercise program the rest of my life.

I did start on the Requip again yesterday. Even though I’ve been doing all this exercise and my legs are definitely stronger, I’m still walking very slowly. It’s called Bradykinesia, and it’s always been my main Parkinson’s symptom. Requip has some pretty uncomfortable side effects, as most of the PD meds do, it seems, so I really tried to do without it. But I just don’t think the Zelepar is enough on its own. Dr. S. told me to use my own judgment on starting it back, so I’ve decided it’s time.

I did get nauseated before lunch yesterday and I had a headache last night. Plus, this morning, I got light headed while I was taking pictures for our eBay listings. I stood still too long, I guess. Anyway, I had to stop and sit down, as I broke out in a cold sweat and could feel myself getting woozy. The worst side effect for Requip, though, is compulsive behavior – if that starts up again I won’t be able to use it, for sure.

The PT worked me pretty hard yesterday, knowing it was my last visit, and I was very uncomfortable last night. I ended up taking 2 Lortab to stop the pain in my legs. At least that meant I got a good night’s sleep! They don’t seem to be as sore today, so that’s good.

I’m having the MRI today at a different place, called a Stand Up MRI. That will be a new experience. It makes me wonder if that was chosen to get a different view of my knee, as there is a regular tunnel MRI place in the same building with my doctor.

I just realized that I forgot to call the Orthopedist’s office yesterday to make the follow up appointment. I’m really having a hard time remembering to do everything that needs to be done nowadays. Hubby tries to help me keep it all straight, and I make lists like crazy. I’ve even started using the task reminders on my Outlook program to try to help. Of course I have to remember to put the reminders in the program LOL!

I got an email from the other PT patient who has Neuropathy last night, and of all things, we live in the same town!!! I’ll be doing some research on her particular type of Neuropathy and adding links to it, if I can find anything specific for her. I wonder if she lives anywhere near the EPA toxic site, the way we do????? She’s in far worse shape than I am, and the doctors don’t know what’s causing her problems, either. And she’s young. I’ve added her to my prayers, and I hope she and I can continue to correspond.

It was a day of changes yesterday, but hopefully they will be good changes. Only time will tell.

Posted in Uncategorized | Tagged balance, Bradykinesia, difficulty walking, dopamine agonist, EPA, exercise, knee, MRI, nausea, pain, Parkinson's, peripheral neuropathy, Physical Therapy, PWP, Requip, toxic chemicals, Zelepar | Leave a reply

Wonderful Weekend!

Day by Day with a Movement Disorder Posted on May 6, 2007 by DBMay 6, 2007  

We used our Date Day Friday to work our way up toward Huntsville, where our younger DD’s family lives. We haven’t been to see them at their home since last Summer, thanks to all that’s been going on with me and with my Daddy. So, we had a wonderful time getting to visit. We even got to watch our twin granddaughters play in their Softball game.

My knee behaved itself, although I was careful to use the cane up and down her steps and at the ball park. When we got home, I have a message to schedule the MRI, as insurance has already approved it. Our older DD has a couple of job interviews lined up, the Will stuff is moving along nicely, and our eBay sales have picked up, now that I’m listing new items almost every day.

We even had rain today, which was so badly needed around here.

Speaking of weather, however, reminds me to say a prayer for all those poor people who have lost everything – even their town – in the Midwest, from tornado damage. May God’s hand be felt close to them. He’s always there, but sometimes we just don’t realize it. I pray that they will feel His strength and comfort in this horrible time they are all going through.

I’m sorry I’ve not been able to get back to reading everyone’s blogs yet. It just seems like my list of things to do gets longer, instead of shorter! LOL And I do appreciate you checking on me, particularly since I’m not reciprocating.

I’ll be calling my insurance company tomorrow to find out where I stand on the number of PT visits I’m allowed, but I do have a PT appointment for tomorrow, anyway.

I’m looking forward to a great week, and I hope you have one, too!

Posted in Uncategorized | Tagged cane, eBay, family, Friday Date Day, God, grieving, insurance, knee, MRI, pain, Physical Therapy, tornado damage | Leave a reply

Wonderful Cortisone

Day by Day with a Movement Disorder Posted on May 4, 2007 by DBMay 4, 2007 4

I went to the Orthopedist yesterday and talked to him about my knee and shoulder. I’m satisfied that the shoulder is responding well to the Physical Therapy, and I can tell that the leg, hip, and thigh muscles have strengthened since I’ve been going to PT, but my knee still will not straighten all the way out, and getting up and down from a chair still is extremely painful. So, he’s put in a request with my insurance for the MRI, so we’ll both know what’s going on in there.

He did ask me if I wanted a Cortisone shot, and said it might give me relief for anywhere from a few days to a few months. The shot hurt something horrible going in, and the knee was awfully sore yesterday, but it’s not hurting now! It’s been so long since I could sit down without inwardly, or sometimes outwardly, groaning, that this is quite a pleasant change. I pray that I will be one of the ones to get long term relief with the shot. I’ve always had good success with epidurals lasting a long time, so I’m optimistic.

I did ask about going back for more PT, and his PA told me I needed to check with my insurance to see how many times they will authorize. She said I might want to keep some therapy sessions available, just in case I do end up having surgery. It’s a shame that insurance companies control decisions like this, not the doctors and therapists who know how much I need this. I have good insurance though, so I’ll be talking to them Monday to find out where I stand.

I had already decided before I got hurt taking care of Daddy that I would join a fitness “club” run by St. Vincent’s hospital in Birmingham after he died, but the knee put that on hold. They have a program where you pay for a complete evaluation of your physical condition and they supervise your exercise program, with quarterly checkups of your progress with a Physical Therapist. They have all kinds of equipment, a pool, and lots of different classes I can take. I’ve been chatting back and forth with Lynda of Pilates & Reiki in Paradise about possible nearby instructors suitable for a person with Parkinson’s, and oddly enough, this is the very Pilates class she suggested. Small world.

So, for the time being at least, I’m pain free, with plans for keeping it that way. We’re going on our usual Date Day today, and by the time I’ve been in and out of the car dozens of times today, I’ll know if I’m going to be one of the lucky one for whom Cortisone is a wonder drug. Wish me luck!!

Posted in Uncategorized | Tagged Cortisone, difficulty walking, epidurals, exercise, Friday Date Day, hope, insurance, knee, Parkies, Parkinson's, Physical Therapy, Pilates, PWP, Quality of Life, steroids, torn cartilage | 4 Replies

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