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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: OCD

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

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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