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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: torn cartilage

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

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

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

Stiffness

Day by Day with a Movement Disorder Posted on May 1, 2007 by DBMay 1, 2007 3

I had trouble yesterday and today with a lot of stiffness when I got up, and it took quite a while for it to go away. I mentioned it to the PT yesterday, and she said I’m probably going to have to try to keep my activity level fairly constant, rather than over-exerting and then taking a few days off, the way most people would. It’s just a Parkinson’s thing, she says, and not, LOL, my age!

I did get in and out of the car a whole lot last Friday on our Date Day, as we had a lot of Estate Sales available to look at. So, I didn’t do much of anything Saturday. Big mistake, evidently. Well, lesson learned. I’ll know now that I need to try to keep on with at least my exercises the next day after I get overly tired. One thing’s for sure, I have no intention of cutting back on our Estate Sale haunts, as that’s an important part of my Quality of Life. We really enjoy each other’s company, and I don’t want to mess that time up at all, until it becomes absolutely impossible to continue. And I’m hoping that day is a long, long way away!

I’m looking forward to my Orthopedist appointment this Thursday, and I’m hoping he will authorize the MRI of my knee, just so I can know if I have any torn cartilage or not. I have no intention of having arthroscopic surgery on it at this stage of the game, but if it is torn, I’ll probably want to find out about a knee brace for times when I might need it. Our basement is one big junk yard, and right now DH is having to do all the cleaning and throwing out by himself, as I don’t dare twist anything. The brace would make me braver about squatting, turning, etc., and I’d feel better if I were helping him. After all, it’s in that big a mess because I haven’t felt like cleaning it out for a long, long time now, long before he retired and took over much of the housework.

So, here’s to being even more physically active and feeling more useful!

Posted in Uncategorized | Tagged difficulty walking, exercise, Friday Date Day, house cleaning, knee, Orthopedist, Quality of Life, torn cartilage | 3 Replies

Peripheral Neuropathy Rears Its Ugly Head

Day by Day with a Movement Disorder Posted on April 16, 2007 by DBApril 16, 2007 8

I went to the Physical Therapist this morning for evaluation of my knee and shoulder problems. The news was not good. It seems that I have significant weakness in my right leg and hip muscles, and also in my left hip muscles. My hand strength was markedly less in the right hand than the left, but that didn’t surprise me.

She said it was no wonder I was having trouble with my knee, or with walking, as my muscles were so very weak. She does not want me to walk so far at the track, but to concentrate on walking with full use of my hip muscles. I had already realized that I wasn’t doing that. When I do take a full stride from the hip I feel like I’m drunk, with a wobbly unsteady sensation. I don’t know any other way to describe it, and I look drunk, too. She wants me to use my cane on a regular basis, because she doesn’t want me to reinforce my unnatural gait. I’m to see her two more times this week, plus she’s given me a set of exercises to do here at home.

She thinks the knee is so irritated because the muscles that should be providing support just aren’t doing their job well at all. And she said the same thing about both hips. So, I’m going to be busy trying to build up what I can, before I end up on the floor LOL!!

I also had an ultrasound treatment on my knee and an electrical stimulation treatment on the shoulder and the knee, with moist heat, too. That felt wonderful, and it’s supposed to improve and speed up the healing process.

The PT is a very nice lady, and I felt comfortable with her immediately. It’s just as well, as it sounds like I’m going to be going there for awhile. Of course, insurance has a lot to do with how many sessions they’ll let me have, so I need to learn as much as I can about how to do the exercises at home.

Posted in Uncategorized | Tagged balance, cane, difficulty walking, exercise, gait, knee, peripheral neuropathy, Physical Therapy, torn cartilage, walker | 8 Replies

Getting Back to Normal?

Day by Day with a Movement Disorder Posted on April 8, 2007 by DBApril 8, 2007 6

I’ve gotten a lot done in the last few days. We’ve had the appraiser out to the house, the taxes are ready to sign and mail, and I’m almost finished with the tax bookwork for our paid caregiver. I finally gave up and went to the Orthopedist about my knee and shoulder, too. The X-rays showed the degenerated cervical disk I already knew about, and arthritis in my knee, which wasn’t surprising. Dr. J is guessing that I have a torn miniscus, but it will take an MRI to determine that. From what I’ve been able to read on the Internet, that seems like a reasonable diagnosis to me, particularly since it was injured when I was shifting Daddy up in the bed.

I’ll have to go to Physical Therapy and stay on Extra Strength Tylenol 3 times a day before my insurance will agree to the MRI. That’s fine with me, as far as the therapy goes, as I’m sure it will be helpful. The Tylenol doesn’t even faze the pain, but I’m following his directions and taking it regularly.

We’re still walking at the track early in the mornings, but it’s been way too cold the last few days. Alabama is having record cold weather right now. So, we’ve been doing exercises from videos. DH is REALLY following the tape, and I’m bouncing on one of those little trampolines and doing as much of the arm movements as my shoulder will let me.

I’m still just taking the Zelepar, hoping that the exercise and whatever the doctor does for my knee will be enough. I just don’t want to try the Requip, if I can possibly help it.

We had our usual Date Day Friday and enjoyed looking at lots of Estate Sales. We’ve never been able to be an Early Bird before! It was strange to get there before most of the stuff was gone. And we did manage to pick up a few good buys, I think.

It’s been ages now since I’ve taken pictures and put anything on eBay, but I’m going to try to get back to that this week. We have an almost overwhelming amount of “stuff” we’ve bought in the last few years, and I haven’t been able to work seriously on our online sales for almost 2 years. With so much of the Estate business started now, I’m ready to get back to NORMAL.

Posted in Uncategorized | Tagged diagnosis, difficulty walking, eBay, exercise, Friday Date Day, Income tax, knee, MRI, Orthopedist, pain, settling an estate, torn cartilage, Zelepar | 6 Replies

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