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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: computer addict

My How Time Flies

Day by Day with a Movement Disorder Posted on November 3, 2009 by DBMay 21, 2016 2

Wow! It’s been almost a month since I posted here! I can’t get over how quickly time is going. For the most part I’ve been doing pretty well, although the blood glucose numbers continue to peak at higher numbers than I would like. I’m not stressing so much about it though, so that’s a good thing.

I was increasing my daily exercise quite nicely, until I came down with an infection. These powerful antibiotics always sap my strength, not to mention upset my digestive system, so I haven’t done any exercising lately.

My weight continues to drop ever so slowly, but I’m pleased that I seem to be past the plateau I was on for what seemed like forever. Of course it really wasn’t that long … it’s just that I am not one for patience. I know that losing the weight this slowly is preventing the sagging skin problem that can come with large weight losses. I just have to keep reminding myself of that.

I continue to be frustrated by how hard it is to order from restaurant menus. I’m beginning to learn a few tricks that work, though, like asking to see a dinner menu to see what other options might work better for me. Yesterday we ate lunch out for hubby’s birthday, and I was able to have part of my order from the lunch menu and part from the night menu. And my test levels were good!

I was very pleased with myself that I made the transition from Vista to Windows 7 with no major hitches. And the one minor glitch, that left me with a corrupted mouse pointer file, I was able to find a fix online all by myself. I’ve always been good with computers, so any evidence that I’ve “still got it” is always welcome.

I do continue to have odd brain glitches from time to time. I can forget something completely in a matter of seconds, and I find all kinds of mistakes I’ve made in our online business. Those kinds of goofs really frustrate me, and I get so upset with myself. And that only makes things worse. I need a big dose of I Don’t Care pills at times like these. Hubby is always telling me it’s no big deal, but every little thing I do that’s so bizarre just adds to my negative self talk. I know some of it is my age, and some is from all the medicines I take, so I try think of that when I’m so down. When you’ve taken care of Alzheimer’s family members for years you can’t help but see yourself heading down that path at times. Then I try to tell myself that it’s not forgetting to put something in the refrigerator that counts. It’s that I still know what a refrigerator is for that’s important!

I’m looking forward to having the family here for Thanksgiving, with all the hustle and bustle of the Christmas season not far off, either. So time better not fly too fast, or they will be here before I’m ready for them. If so, they’ll just have to overlook the mess and enjoy the day together anyway!! LOL!!

Posted in Quality of Life | Tagged blood glucose, brain fog, computer addict, depression, diet, exercise, Quality of Life | 2 Replies

I Can STILL Learn New Things!! – Keeping My Fingers Crossed ;-0

Day by Day with a Movement Disorder Posted on July 24, 2008 by DBMay 30, 2016 3

CAUTION: GEEK TALK AHEAD!!

Well, I just changed from what is called FTP publishing of this blog to our own domain, dirtybutter.com to a Custom Domain on Blogger. After getting some wonderful help from Chuck on the Blogger Help Forum, which is NOT run by Blogger, by the way, I started last night to make the changes on our host, 1and1.com, to change the way the parkinsons.dirtybutter.com subdomain is set up. It now invisibly uses the Blogger servers, instead of our own. Everything should look the same to you, my dear friends, if I did it correctly.

I had held off making this change until I could not post or receive comments anymore, because until recently I just felt too lousy to attempt it. The brain fog just didn’t leave enough brain power to attempt something like this. Oh, Blogger would have eventually fixed it, but it was obvious that publishing via FTP transfer was outdated technology, as far as they are concerned, that they were supporting less and less.

I’m not sure yet exactly what I may need to change, if anything, past what I have already done, but I am pleased with myself that I was still able to delve into technology that I had never used before and execute it.

Of course, when I push the Publish Post button we will find out if I have reason to celebrate or not, right? LOL!!!

Posted in Quality of Life | Tagged Blogger, brain fog, computer addict, Quality of Life | 3 Replies

Still NO Sleep

Day by Day with a Movement Disorder Posted on June 10, 2007 by DBJune 10, 2007 6

Insomnia is turning out to be my biggest problem right now, because it effects my stamina and mental agility as the day wears on. I start out each morning all fresh and energetic, even with only 4 hours sleep. I’m wide awake and rarin’ to go! But I fizzle. Not surprising considering it’s been over a month since I’ve had more than 4 hours a night. I doze in the car when we go anywhere, but other than that, there’s nothing.

My Neurologist appointment is coming next week, and he had mentioned doing a sleep study. I think it’s time, don’t you?? I can’t imagine what he can do about it, though, as I’m comfortable in the recliner, and if I snore, there’s no one nearby to tell me about it LOL. I do hear my DH sawing away in the bedroom, though. Ah! Maybe HE’s the culprit!! ROTFL

I’m really proud of how much stronger physically I am right now, and I’m determined to keep up the good work. I’m doing the Tai Chi almost every day, which definitely improves my balance, walking about 6000 steps on average, lifting 1 lb weights to do the arm exercises, and working around the house more than I have in a long time.

We’re about to close on Daddy’s house, so that will be out of the way. That leaves his car and all the stuff in the house to get rid of, plus some small insurance policies to deal with. UGH!

I continue to stay behind on all my computer work, but the eBay business is picking up, now that I’m listing new items every day. Maybe in the year 2020 I’ll have all of the things we have been buying at Estate Sales sold. HA! Maybe … but we keep on buying, ’cause that’s the fun part for us, as we do that together. One step forward and two steps back! All the online part is strictly my doings. Hubby can’t stand computers.

I really do miss all of you, but I just can’t work it all in. I don’t think I think as fast as I used to.

Posted in Uncategorized | Tagged balance, computer addict, eBay, exercise, Friday Date Day, insomnia, Neurologist, Quality of Life, settling an estate, Tai Chi | 6 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

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

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

Still Going Strong

Day by Day with a Movement Disorder Posted on November 21, 2006 by DBNovember 21, 2006 4

We took Daddy to the Podiatrist yesterday, and I saw him, too. He sanded down my thick toenails that are so deformed and got rid of some really bad callouses, as well as cutting my healthy nails. My balance has been so off that I’ve not been doing a very good job of cutting the last few nails on each foot. I’m to see him again in three months. My big toenails feel so much better now that they don’t stick up, that I’m going to keep the appointment in three months.

We ate at a buffet, and I managed pretty well, with only some slight nausea afterwards. All in all it was a very good day, as far as my stomach was concerned.

I did get one item ready for eBay yesterday morning, without any trouble, and I managed to do all the necessary blog tasks early. I did get back on the computer when we came home, though, because we had to pack an item to ship, and I had to print out the packing slip and postage label. Instead of turning it off after that, I left it on and did some research on Parkinson’s, particularly trying to find a place in Birmingham where I could take Tai Chi lessons. I may have found one, too. I’ve got to call them today.

I was able to get all my computer work done this morning done, too, with one eBay listing ready to go on tonight, so it looks like I’m beginning to control my computer time. Now if I can just make myself turn it off, instead of fiddling with it the rest of the day!!!

Poor hubby got up this morning with a terrible toothache he’d had all night long, so we went to the dentist, and he ended up having a root canal today. We feel very fortunate that his pain hit today and didn’t wait until the Thanksgiving Holiday made it impossible to get any help.

So we’ve not been home very long, and I’m finishing this up, with the full intention of looking up the phone number of the Tai Chi place and then turning off the computer!

Posted in Uncategorized | Tagged computer addict, OCD, Podiatrist, Tai Chi, toothache | 4 Replies

Continuing to Feel Good

Day by Day with a Movement Disorder Posted on November 20, 2006 by DBNovember 20, 2006 2

I felt better for a Sunday than I have in some time. All the exercise is beginning to pay off, I think. Usually, by the time I’ve cleaned up after Daddy and fixed his cooked Sunday morning breakfast, I’m already tired. Then the long sit through Sunday School and Church just leaves me drained for the day. That didn’t happen yesterday. I had plenty of energy. My body still cramped some in church, but not as bad as usual. I’ve stopped carrying the cane to church, too, so I’m feeling much more normal. Everyone’s still good to ask about me and let me know that they are praying for me, which I really appreciate.

I didn’t do so good a job of staying off the computer yesterday, even though I really did mean to. This is going to be a hard habit to change, and the difficulty of it just convinces me that it has reached the compulsive point. I’ve gone through all my usual daily computer tasks already this morning, and I’ve taken a set of pictures for an eBay listing already, so at least I’m being a little more efficient.

We’re taking Daddy to the Podiatrist today, so that will get me away from the computer for awhile. I’m going to see the Podiatrist, too, this time. I made the appointment several months ago, thinking I would keep it if the diagnosis was Parkinson’s and cancel it if it weren’t. What with the Peripheral Neuropathy, and some very deformed toenails already, it just seemed like a good idea to touch base with him. Daddy sees him every three months, as he’s a diabetic, but I don’t expect to see him but maybe once a year, unless he tells me otherwise.

I’m noticing a gradual weight loss, which suits me just fine. I’ve just about cut out all sweets, and my portion sizes are much smaller than they used to be. I really don’t feel like eating very much at one time any more. I’ve cut out the in between snacks, too, for the most part. And the meal at night is usually very small – sometimes only a banana. I just don’t get hungry at night any more. We eat our big meal at lunch now, and my dear sweet hubby, who does the cooking, makes sure it’s a very nutritious meal. I’m overweight, anyway, which puts extra strain on my legs and balance, so I hope to continue to lose weight gradually for some time.

Posted in Uncategorized | Tagged computer addict, diet, exercise, nutrition, OCD, Podiatrist, prayer, Sunday, weight loss | 2 Replies

Requip and OCD – a Serious Side Effect

Day by Day with a Movement Disorder Posted on November 19, 2006 by DBNovember 19, 2006 2

One of the side effects of dopamine agonists, the kind of Parkinson’s medicine I’m on (Requip), is that they cause excessive gambling. Some people have lost their whole nest eggs before their families realized what was happening.

Well, I don’t gamble, as a matter of religious beliefs, so I don’t have to worry about that particular problem, but the underlying symptom is something I’m beginning to show signs of. Gambling in and of itself is not the real issue, but compulsive behavior, or OCD. It shows up in some Requip users as compulsive shopping, instead of gambling.

With me, I’m having a harder and harder time pulling myself away from the computer. Those of you who have come to know me online know just how much time I spend here, and would probably agree it’s too much, and you don’t know the half of it.

Now that I’ve admitted it out loud, so to speak, I’m going to have to discipline myself and put some limits on my computer time. I’m not sure exactly how to do that yet and still take care of our online business, my blogs, and the BLOG VILLAGE TopList, plus keep up with a few key sites I’m involved in, but I’m going to have to try. I know I check my email way too often, and check the forums too frequently, so that’s some place to start.

Have any of you dealt with OCD? Is this something I can do on my own, or do I need to let my doctor know I’m showing compulsive behaviour? I’d be interested in hearing what you have to say about this.

Posted in Uncategorized | Tagged computer addict, dopamine agonist, gambling, OCD, Requip | 2 Replies

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