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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: balance

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Life’s Unexpected Turns

Day by Day with a Movement Disorder Posted on November 27, 2006 by DBNovember 27, 2006 2

This has certainly been a strange last couple of days for me. It started with my laptop suddenly getting the dreaded Blue Screen of Death over and over, for no apparent reason, right before Thanksgiving. We had all the family coming for dinner, and that meant moving all the eBay stuff out of the guest bedroom, so the grandkids could spend the night. That meant there was no time to work on the ole ‘puter, so I had my first taste of computer withdrawal LOL.

I behaved myself, and only worked on the computer in between housework, as I found out very quickly that I have no stamina at all. I used to be able to move all the stuff quite easily, dust and vacuum, and generally straighten the house with no trouble, but not any more. It seemed like I needed to sit down every few minutes and catch my breath. Thank goodness my dear hubby was doing all he could to straighten up the place, and of course he did all the shopping.

Our family helped out a lot on Thanksgiving, instead of just coming and sitting down to the meal, the way they always have before. Our SIL cooked the turkey, and our daughters took care of the deserts, so DH fixed the vegetables, and I didn’t have to do anything. It’s just as well, as I woke up with those bad stomach cramps and the bloating again on Thanksgiving Day. I spent most of the day with a hot pad on my tummy, ate almost nothing at lunch, but did enjoy having everybody here. Daddy ate almost nothing, and no amount of prodding would get another bite in him. The kids were particularly good this year, as they stayed quiet all day. I asked DD if she had threatened them within an inch of their lives, but she said she hadn’t said a thing to them. So they hadn’t made Daddy nervous, as they sometimes do with their playful noise, so it didn’t make sense that he wasn’t eating.

We had a wonderful time enjoying getting to visit with everybody all at once, particularly since our older daughter and her hubby will be with his parents for Christmas this year. Younger daughter and the girls spent the night and didn’t go home until Friday afternoon, so we did get on our other laptop and do some Wishlist shopping for the girls, so I’ll have some things to pick from that they really want.

After such a pleasant day and a half, even with my stomach cramping, our whole world turned upside down when I got up to Daddy’s to fix his supper Friday evening. I found him in the living room floor, conscious, but unable to get out of the floor. He was not hurt, evidently, and doesn’t remember falling, but he’d been on the floor most of the day. Mind you, he has one of those “I’ve Fallen, and I Can’t Get Up” buttons in his shirt pockets, but he wouldn’t use it! I’ve never been able to get him to use it. No matter how many times I explain it to him, he thinks it’s going to call an ambulance and take him to the hospital. But I have it set to call us, and then a neighbor, and only call the EMT’s as a last resort.

So I called my DH, and he all but ran up there, and got him out of the floor, by the hardest. He was very weak, as he had not eaten since breakfast, and he’s diabetic. We got some juice and a banana into him, and soon realized that he must have had a mild stroke, as his speech was slurred.

So, I’ve been taking care of him now for the last few days. He seems to be getting stronger, and his appetite is improving. His speech is still slurred and I’m being really careful to feed him thick foods like oatmeal, so he won’t choke. I’m not sure what we will do today. It would be extremely difficult to take him to the doctor, and I’m not so sure it would accomplish anything if we did.

As for me, I can really tell the stress has put a strain on my Parkinson’s meds. My balance is poor, because I’m really tired, and my back is bothering me from trying to help him stand up. Luckily, I’ve had lots of practice at care giving, and I do know the correct way to do things, body mechanics wise.

Daddy will be 102 in March, so it’s going to be very difficult for him to recover from whatever happened Friday. He wants to stay home, and I want to be able to help him do that if it’s at all possible. If I could be fairly certain that taking him to the doctor would get us some Hospice help, then it would be worth the trouble of getting him in and out of the car and the doctor’s office.

Posted in Uncategorized | Tagged balance, bloating, care giving, computer addict, family, gas, house cleaning, insomnia, Parkinson's, stress, stroke, swallowing | 2 Replies

All’s Well with My World!! Glory to God!!

Day by Day with a Movement Disorder Posted on November 4, 2006 by DBNovember 4, 2006 9

I went to the Neurologist Thursday morning, and reported to him about the Endoscopy and Monday’s visit to the Gastroenterologist. I told him about the Zelnorm, and how it is definitely helping. I also told him about the hair loss, and he said if it continues he’ll try to help with it on my next visit. He agreed that it was time to take me off the Sinemet YAY!, and go on just the Requip, which is what I was hoping he would do. So I don’t see him again for three whole months! I feel like a free woman!!! Requip is taken with meals, so no more of this hour ahead stuff, and it doesn’t have any dietary restrictions, either, so I can eat what I want with it. My gastro doctor has put enough restrictions on my diet as it is, so I’m glad to not have more added to those from the PD meds.

Thursday was my DH’s birthday, but I couldn’t get him to spend any money on himself at all. I was hoping there would be a movie he wanted to see, but no such luck. Then I tried to get him to buy a book or a CD, but he wouldn’t do that, either. So…. I needed to get a pair of walking shoes, fitted by a knowledgeable salesperson, something I had researched on the Internet as being good for Parkinson’s patients, so we ended up spending money on ME LOL. He did let me take him out for a nice lunch, though.

I found out in my research that walking shoes don’t break on the sole in the same place that running shoes do. Since PD folks have problems picking up the foot and putting it down properly, with the roll that everyone else takes for granted, this is important. I was used to wearing running shoes, and I could tell the difference immediately. It really felt odd, and will take some getting used to. It changed my whole sense of balance at first, I was so used to the old shoes.

So this is a post I’ve been looking forward to making. I’m feeling good about my medicines, my stomach is improving, and I’m at a point where I feel like I have a handle on the Parkinson’s for now. Now I just want to proceed with life as normally as possible for as long as possible, enjoying every minute of it, knowing that the time will come when things will change. I feel so fortunate that this disease is progressing slowly for me. This warning time gives me the opportunity to glory in just being alive, and I thank God for every minute of it.

Posted in Uncategorized | Tagged balance, God, hair loss, Neurologist, Requip, walking shoes, Zelnorm | 9 Replies

Today My Balance Worked

Day by Day with a Movement Disorder Posted on October 26, 2006 by DBOctober 26, 2006 4

I could tell when I got up this morning that my balance was back to “normal.” This fluctuation in what I can do is something I’m just going to have to get used to, I guess. I did manage to get several descriptions done for eBay, but I didn’t get them on last night, because DH had a called Deacon’s meeting that didn’t get over until about 9:00, so we were late getting home. I don’t like to post items after 8:00, so they’ll go on tonight.

All the Deacon’s wives stayed in the Fellowship Hall, where we had been for Wednesday night Prayer Meeting and Worship, and visited with each other. It’s been a long time since I stayed for one of those informal gatherings, and I really enjoyed it.

It was also the first time I let them see me walk any without the cane. This on and off way it effects me is hard to explain to people, so I’ve been avoiding having to explain by using the cane at church all the time, whether I thought I needed it or not. Now that the med doses are higher, and I’m exercising more, my balance and leg strength are better more days than not. I still need the cane for certain situations, so I carry it everywhere, but I don’t always use it.

My main difficulty continues to be my digestive system. I’m just trying to wait out another week, as that’s when I’m completely off the Sinemet. If all the nausea, gas, cramping, and just generally feeling lousy don’t stop then, I’ll have to change my Gastroenterologist appointment to a sooner date. I’m just telling myself to be patient for now, over and over and over.

Posted in Uncategorized | Tagged balance, cane, Church family, eBay, exercise, Gastroenterologist, GERD, nausea, Sinemet | 4 Replies

Balance? What Balance?

Day by Day with a Movement Disorder Posted on October 24, 2006 by DBOctober 24, 2006 2

Today was my Tai Chi lesson, and I started to call Sensei Tetsu and postpone it. I knew when I got up that this was going to be one of those days when my balance was not going to be very good. I decided to go anyway, just to see what I could do on a day like today.

Well, let’s just say, it was obvious almost immediately that there were going to be some parts of the form that were just not going to be done very well. But we worked the whole half hour, with only a quick water break. That’s better than I’ve done before. I didn’t need to stop after 15 minutes for a walk around break, so my stamina is improving, at least. We also got straight through the whole form at the end of the lesson, and that’s the first time I’ve done that. So even though I was stumbling some, and having trouble with some spots that hadn’t been bothering me before, I’m still pleased with my workout.

What I like the most about Tai Chi is that I’m so relaxed when I get through. I would recommend it to anyone who needs to deal with stress, or is limited in the kinds of exercise they are able to do.

Posted in Uncategorized | Tagged balance, exercise, stress, Tai Chi | 2 Replies

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