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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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Hallucinations

Day by Day with a Movement Disorder Posted on January 27, 2007 by DBJanuary 27, 2007 6

Daddy has been hallucinating for the last several days off and on. At times he doesn’t realize he is at home, and starts wanting to know when we’re going home. Although he is blind, I’ve noticed him looking around at things with this wide eyed expression on his face. He’s obviously seeing things that aren’t there. And, he’s talking about them, too! Normally, Daddy is a very quiet person, but he’s been chatting away about these children playing in the living room and the trucks in the bedroom. No amount of reassuring him that it’s not real will convince him of it. Up until yesterday, the hallucinations seemed harmless enough, but were a definite sign that something had made a down turn.

Yesterday morning was the worst I’ve had yet with Daddy. Thank goodness my DH got to the house just about the time I was going to get him up. I found him lying astraddle of the bed, with legs partway off, having made an unsuccessful attempt to get himself out of bed. His bottom was much too close to the edge of the mattress to have him sit up, so we had to try to maneuver him back in the bed. All the while, he’s loudly protesting that the trucks are coming into the bedroom, and he’s struggling against us, trying to get up. We finally managed to get him seated at the foot of the mattress with enough spare room to be reasonably safe.

The question was, now that we had him there, how were we going to get him up, when he was exhausted. Thank goodness I’ve had prior experiences I could fall back on! We ended up taking the arm off the wheelchair and making a difficult sideways transfer of about 12 inches!! He’s just a dead weight and doesn’t help at all. By the time we got him in the chair, I was already worn out. Thank goodness I had taken my Zelepar earlier, before he got up!!

By the hardest, we managed to get him partially dressed, but there was no way to pull up his pants or change him out of his night Depends into fresh ones. With one more gigantic effort, we managed to lift him up enough to get the wet Depends off and a dry one under him, partially taped up on the sides. That was just going to have to do for then. DH rolled him into the kitchen, with his trousers down at his ankles, and I covered him up the best I could.

His kitchen table is too low to let the arms of the wheelchair go under it, so he tried to eat breakfast farther away from the table than he’s used to. He was still hallucinating and talking about the hole in his bedroom wall where the trucks had come through. He ate very little, but he did let me feed him a few bites. Luckily, we have the Rhoho cushion that Mama had after she broke her hip. Sitting on that is like sitting on air, and it’s designed to prevent pressure sores. So we stood him up one last time for the day, and managed to get it under him. We ended up leaving him in the wheelchair all day, for safety’s sake.

DH stayed longer than usual last night, so he could help me get Daddy to bed. It was not easy, but it was nowhere near as bad as getting him out had been.

Frances came today, and thank goodness Daddy was lucid this morning! Since I knew what to expect today, she and I changed the Depends and got him partially dressed before we ever let him get up. That made things a lot simpler. We stuck around and helped with him until she had him ready for breakfast. Then we got out of there for our Date Day. We both really needed to be away from all that nervous tension for awhile.

He’s still really weak tonight, but he’s beginning to understand a little of what is expected of him when he needs to make a transfer. That helps a lot.

So I write this tonight, not knowing who I will deal with tomorrow – my Daddy, or the fellow with all the trucks and children. I’ll find out in the morning, won’t I?

Posted in Uncategorized | Tagged altered state, care giving, confusion, Depends, difficulty walking, exhaustion, Friday Date Day, hallucinations, respite care, Rhoho cushion, stress, wheelchair | 6 Replies

Ahhh To Sleep, Perchance to Dream

Day by Day with a Movement Disorder Posted on December 2, 2006 by DBDecember 2, 2006 7

Thank goodness for Ambien. I called my Neurologist’s nurse yesterday and explained the situation with Daddy. She called in the prescription, and I had a good night’s sleep last night, for the first time in a week. Whew!! That felt good.

It will take me a few days to get over being so tired, I expect, but getting a good night’s sleep will make a world of difference in what I can accomplish without being totally exhausted. Maybe I can even get back to practicing my Tai Chi in Daddy’s living room. After going to all that trouble to learn it again, I sure don’t want to forget it. And it’s good for my balance and stamina, too.

I’ve been reading some articles lately that say Pilates is good for PWP (people with Parkinson’s), so that may be the next thing I look into. I haven’t been able to figure out from what I’ve read if these were specially modified Pilates classes or not. Of course, it would make a big difference if they were. Speaking of PWP, I’ve also found that Parkinson’s folks call themselves Parkies. Ain’t that cute? So I’m a PWP and a Parkie now.

One of the Hospice people tried unsuccessfully several times yesterday afternoon to call us from her cell phone. We live in the middle of nowhere, as far as cell coverage is concerned. “Can you hear me now” just won’t work out here. In fact, we had Verizon, and dropped it, because we couldn’t get it to work at all LOL. She never did come, and we never did get to talk to her, either.

I’m considering ordering DSL for here, so I don’t have to depend on my cell phone while I’m on the computer. Plus, for some reason, the program our church uses for editing our website just won’t let me FTP from here on dialup. It works fine at the house on DSL. I’m the church webmaster, and that has to be updated weekly.

As you may be able to tell, I’m in a pretty good mood today. It’s been over a week since he fell, and we’ve developed somewhat of a routine. Now that I know I will be able to sleep, I feel like we can handle whatever comes, between the two of us. We’ve had plenty of care giving experience, and we have Hospice for support. Our daughters and church family will help where they can, and we have our faith in God to hold us in the good and the bad times. What more could we ask.

Your prayers and kind thoughts are always appreciated, too. The effectual fervent prayer of a righteous man availeth much!

Posted in Uncategorized | Tagged Ambien, care giving, Church family, computer addict, DSL, exercise, exhaustion, family, God, Hospice, insomnia, Neurologist, Parkies, Parkinson's, Pilates, prayer, PWP, support, Tai Chi | 7 Replies

Took Daddy to the Doctor

Day by Day with a Movement Disorder Posted on November 28, 2006 by DBNovember 28, 2006 2

We did take Daddy to the doctor yesterday afternoon. We borrowed a wheelchair from one of our church friends, and we have a very nice ramp left from when Mama needed it, so that made getting him there less of a hassle. The worst part was the long wait at the doctor’s office. We had a 2:00 appointment, but didn’t see him until after 3:00, and that’s normal. If he weren’t so conveniently close to the house, we wouldn’t put up with it.

Anyway, he started talking about MRI’s and tests on carotids, and I told him that we wouldn’t be doing any of that, because we wouldn’t be following through with any of the results. That took him aback for a second, and then he stopped and thought about who his patient was, and agreed with me. I told him my concern was if Daddy might be developing pneumonia, which could be dealt with, and could he get us some help from Home Health or Hospice. I told him that the stress and extra work of the last few days had exhausted my Parkinson’s meds ability to cope with my symptoms, and that my legs were very wobbly. He agreed that Daddy should qualify for some kind of help, and he would get his office lady on it. He gave Daddy an antibiotic shot and a prescription for more antibiotics, and that was it. He agreed with me that it appeared that he had suffered a small stroke, but was reluctant to start him on Cumadin or any other blood thinner, because of his age (he’s 101).

So, it was a long day, and a tiring one, as only waiting in a doctor’s office can be tiring, but I think we accomplished what I had hoped we would. This doctor will get him on Hospice if it’s possible, and that will be the help we need to keep him in his own home. The one thing Daddy dreads is ending up in the hospital or a nursing home, and it’s important to me that I help him have the Quality of Life that he wants, even if it shortens it a little. As long as he has lived, I don’t think that’s a bad thing. With the extra help, and all the help that my DH is giving, we’ll make it through this. We’ve known it was coming, as it was inevitable, but it’s still harder to deal with than we had planned, thanks to the Parkinson’s leaving me with so little stamina.

Posted in Uncategorized | Tagged appointments, care giving, exhaustion, insomnia, Quality of Life, stress, stroke | 2 Replies

Struggling through Sunday

Day by Day with a Movement Disorder Posted on August 21, 2006 by DBAugust 21, 2006  

There’s something about Sunday that just exhausts me. It starts with the special Sunday breakfast with Daddy. That takes more standing on my feet than the normal one does, but it’s part of his routine, and I don’t want to change that. Another thing that contributes to my problems on Sunday is the shoes. They don’t give me any support. By the time I’ve walked from the car to the SS room, I’m completely exhausted. I do get awfully nervous teaching, although it was better yesterday. D will be teaching full time, starting Sept. 1, so I won’t have that to stress me out any more, except for substituting when she’s sick. That’s for the best, I’m sure.

I sit at home all day long, so I don’t know why sitting in church should tire me out, but it seems to. The pews just aren’t as comfortable, I guess. Anyway, I end up taking a nap every Sunday afternoon, just worn out. I didn’t even feel like driving DH to Deacon’s Meeting yesterday, so he took me to Daddy’s and then came to get me and took me home before he went back for church last night.

My legs, shoulders, and neck were hurting by nine o’clock last night and I had the beginnings of a headache, so DH set up the vibrating pillow and I took 2 of his Tylenol arthritis pills and went to sleep for the night. I feel better this morning.

Posted in Uncategorized | Tagged exhaustion, headache, Sunday | Leave a reply

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