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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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Still Improving

Day by Day with a Movement Disorder Posted on January 4, 2010 by DBMay 19, 2016  

Well, the Christmas and New Year’s holidays are over, and things are about to get back to “normal” around here. I made it through all the holiday foods without upsetting my stomach again, and I’ve finished the round of antibiotics. So I really can tell that I’m still improving.

I’ve stopped taking the Reglan and also the Nortriptyline for now. One of them was giving me horrible nightmares, and I haven’t gotten back to my usual sleep pattern yet. The Reglan is not to be taken long term anyway, as it can cause Dyskinesia, and I sure don’t want that! I plan to ask the doctor why he put me on the Nortiptyline, since it’s an anti-depressant. So many of these meds have off label uses, that I don’t want to just stop it completely without knowing why I was taking it.

I still am taking the Carafate an hour before meals and at bedtime, and I won’t go back to the supplements and vitamins I normally take until I stop that. It was just too hard trying to schedule all those extra pills and have my stomach empty for the Carafate.

I even managed to lose another pound during the holidays!! That surprised me, because I allowed myself to enjoy meals with family without concern for glucose readings or calories. I guess my stomach has shrunk, plus my eating habits have changed considerably since April 1, 2009, when I started dieting in earnest.

I am now trying to build back my exercise routine. I did Tai Chi yesterday morning for the first time in I can’t remember when, and I used the treadmill for 3 whole minutes. I know that doesn’t sound like much, but it’s an inexpensive manual one that only has the one incline setting, and walking on it for 2 minutes at a time has been all I could muster, until yesterday. I’m such a weakling! LOL

I never have been much for New Year’s Resolutions, but I guess mine needs to be to get back on a regular exercise routine and stick to it. I’ve lost enough weight now that I’m really in need of some toning up. I don’t know if this old body can recuperate from the baggy skin, but I need to try, at least. And I certainly do need to improve my stamina.

I didn’t do a very good job of testing my glucose levels regularly during the holidays. My results page has lots of empty spots in it. It seemed like every day I would either forget to take it, or we would be out of our normal routine, and I couldn’t take it at the right time. We went to see a lot of movies over the last couple of weeks, and I couldn’t take it then. The rest of the times were just negligence on my part.

My Diabetes doctor said I was doing fine and not to be so concerned about the high readings, and I think I’ve succeeded in not stressing over them to the point that now I’m not diligent any more. It’s always hard for me to find balance, and this is just another example. I’ll try to do better in January. I see him at the end of the month, and I guess he’ll do another A1C then. That will tell the tale, for sure, from my holiday laxness. I’m growing more and more confident that my weight loss will eventually get me out of the diabetic range. I know that’s my goal for April, 2010. I expect to have lost 50 pounds by then, and no longer be diabetic.

At my heaviest ever in March, ’09, I weighed 182, and I’m down to 142 now. So I’ve come a long way. I’m totally motivated to get the rest of the 12 pounds off that I set as my goal, and who knows, maybe I’ll lose a few more than that! I know I couldn’t have done it without keeping track of my calories and carb intake daily. There again, the test will be whether I can achieve a balance of right eating without having to count calories when I’m down to 130. I’ll have to watch the scales pretty carefully to keep from gaining it back!

Sounds like I do have some New Year’s Resolutions after all! And I’m sure I join lots of others who plan to eat more healthy foods, exercise, and lose weight this year. I look forward to twenty ten as being a good, healthy year for me!!!!!

Posted in Quality of Life | Tagged blood glucose, diabetes, diet, exercise, insomnia, low carbohydrates, off label, prescriptions, Quality of Life, stomach, Tai Chi | Leave a reply

Merry Christmas!!

Day by Day with a Movement Disorder Posted on December 21, 2008 by DBMay 24, 2016 9

The Christmas presents are wrapped, and the stocking presents are ready for stuffing, the house is straighter than it has been in a long time, and I’m in good spirits. Not everything is the way I would wish it to be, but I’m thankful for my improved health and the health of all our family. I pray to God daily, with confidence that things will work out for the best for our family.

My elimination difficulties are settling down somewhat, but the gas was particularly bad yesterday. It’s hard to think of eating out in public, not knowing how my body will react. Hubby and I can joke about it, but it’s extremely embarrassing even just with him. My intention is to wait until after the holidays to get back with my Gastrologist, since my normal routines and diet are disrupted so much right now. Yes, we both love fruit cake, and I had a small piece yesterday, plus a little bit of egg nog. I don’t know if that set off the bloated feeling or not, but I was not comfortable.

I’m better today, at least for now, so maybe I’ll be more careful with what I eat today and see how I do. That’s easy to say now, when I’m not hungry and there are no luscious desserts tempting me.

I’m particularly pleased with my progress with my morning exercises. When a muscle is used for awhile there is a buildup of lactic acid in the muscle fibers. This causes the pain we feel when we exercise. I was not able to do even one repetition of 10 of any of my exercises at first without tremendous cramping. Now I can do almost all of them for 2 repetitions, as long as I don’t do them in a row. So, I go through my Tai Chi form, and then repeat it all for my full 20 times each. This gives the muscles a chance to rest, but I still get the full routine in. While I’m sitting at the computer I do the same thing with my neck exercises, going through the whole routine twice so I get 20 times for each motion.

I’m still doing only 10 minutes on the mini trampoline, and still having to do little resting movements every couple of minutes. But I can get through a whole song on the radio now doing jogging motions that make me bounce all over. This should be good for my gas and digestion problems, too. Until I can “jog” for the whole 10 minutes there really is no point in staying on it any longer.

My little victories in my exercise routine would certainly seem trivial to someone in good health, but I am very proud of how far I’ve come. And I have hope that I will continue to increase my level of activity.

Yes, today is a good day.

Posted in Quality of Life | Tagged bloating, Christmas, exercise, gas, Gastroenterologist, prayer, Tai Chi | 9 Replies

One Thing about a Movement Disorder – It Never Stays the Same

Day by Day with a Movement Disorder Posted on December 5, 2008 by DBMay 24, 2016 4

We had an absolutely wonderful Thanksgiving together as a family, but of course I was pretty tired afterward. So, as I had planned, I waited until Monday to change back to the Primidone. Not only was I jerking more with the Neurontin, but I had noticed a marked increase in really bad nightmares. To compensate for the lack of sleep at night I have started taking 30 minute naps during the day if I get sleepy.

Adding the extra dose of MiraLax around 5PM in a glass of prune juice is helping keep the constipation at bay at least for now, but the gas is still all but overwhelming. I’m also getting 3 or 4 prunes a day with lunch every day we eat at home.

The nightmares have not stopped, as I had hoped they would when I went off the Neurontin, but at least the jerking has subsided again. I’m going to have to work harder to get my mouth used to the TAP again, so I can get a decent night’s sleep.

I got up about 12:30PM this morning, jerked wide awake by a particularly scary dream, but did manage to go back to sleep about 2AM I guess. Now here I am awake again at 4:30. So I’ll be running on fumes today. At least, since it’s our Date Day I can sleep in the car on the long stretches. I could really tell that less sleep was taking its toll on me yesterday, as I felt old and tired all day.

You know what it is like to sit in a car and tap on the glass to talk to someone outside??? Well, that’s the way I feel these days. I feel like my young self is trapped inside this old decrepit body, tapping away trying to make myself heard. Not a very good simile, but it will have to do for now. My brain still feels like I’m a young woman, but my body seems to get older and older by the moment. All day yesterday just getting up off the sofa seemed to be enough to exhaust me. So I know I need to get better quality sleep, and more of it, too.

We’re in our Christmas rush time for selling our Plush Animals and Dolls, so that keeps me moving, whether I feel like it or not. Hubby tries to leave all the getting of items out of inventory up to me, as it forces me to move around more than I probably would otherwise. I get all the packing materials together, print out the packing slip, and weigh the package. Then I print out the postage.

But then he takes over, double checking that I have the right toy going to the right person and checking to be sure everything is as it should be. He seals the packages up and puts the postage on. I was making too many mistakes, and this seemed like the best way to keep me active both physically and mentally, and still not get so frustrated with every mistake I was making. It makes me so mad when I can’t find a toy in the box it should be in. We have had to refund money several times because I couldn’t find a toy that my records showed we should have in stock. Keeping track of all the “paperwork” gets to be overwhelming at times, but I know it is keeping my brain active.

I was very pleased with myself about one thing I accomplished this week. I have noticed that it is very hard for me to learn how to do something completely new these days. So I was very happy with myself when I successfully followed the directions to make some java script to use on our Shopping Cart page. Yeah Yeah… I know that’s geek talk, but it is important to me, because I have never done any writing of java scripts before. I learned how to do something totally out of my realm of expertise. I’m patting myself on the back for that!

I continue to do my morning exercises, including my own version of Tai Chi for the balance impaired, although I didn’t do any this morning. Just getting in and out of the car and walking around at the sales today will give me plenty of exercise for today. I will do my neck exercises, though, as usual. They don’t take long and I sure don’t want that frozen painful neck situation to come back if I can help it.

So, this week I have felt terribly old and decrepit, but also beaming with pride at my successful creation of some java script code. I’ve changed back to the Primidone and the jerks have settled back down, and at least for now I have the constipation under control.

All in all, I’d say it’s been a good week.

Posted in Quality of Life | Tagged elimination difficulties, exercise, exhaustion, insomnia, Neurontin, Primidone, Tai Chi, TAP | 4 Replies

Two Ruptured Cervical Disks – No Wonder I’m Hurting!

Day by Day with a Movement Disorder Posted on December 16, 2007 by DBDecember 16, 2007  

I talked with my Orthopedist’s PA the other day, and she confirmed what I already knew. The disks are bulging on the two cervical vertebrae that are degenerating, and that’s what is causing the pain and stiffness. She doesn’t want to make an anesthesiologist appointment to get an epidural there until I have a chance to talk to my Neurologist. I see him Wednesday. I did ask that she talk to my Neuro’s nurse, rather than expect me to relay messages. It seems that the ER did not send any information to him about my time in the ER in September, when I had the horrible drug interaction with a steroid shot. So his nurse was completely surprised to hear I had a bad reaction.

So, we’ll be going to the hospital to sign the release form to get the records to take to my Neuro.

I continue to be concerned and in prayer for several Parkie buddies on the PatientsLikeMe site, who have been diagnosed with skin cancers. One has Melanoma, and the other has Squamous Cell Cancer. Both were caught early, with every reason to believe they will be just fine. We are all praying for their recovery.

There is another woman on there who’s brother also has PD, who had unrelated surgery, and to quote her – “his brain is mush.” She said he has already tried to leave the hospital. When I thought I was going to have to have surgery back a few months ago, I learned all kinds of scary things about how difficult it is for PWP to have any kind of anesthesia without serious side effects. Also, it is very difficult to get hospitals to keep the PD meds coming on time. And that can mean the difference between being mobile and thinking normally, and not.

I wore my new “Sunday” shoes today, and I really like them. They help with my balance, they feel good on, and they are unobtrusive. I doubt if anyone has even noticed that I’m not wearing dress shoes. I don’t feel the least bit self conscious in them, so if someone has noticed them – I don’t care.

I am having one problem, though, that came unexpectedly. Last night I noticed a red itchy place on my wrist where the back of the Timex watch is against my skin. I had noticed that the skin was getting slick and shiny there a couple of weeks ago, so I started taking it off at night to go to sleep. Evidently I didn’t heed the warning in time, as I now have a nice round ringworm there. It’s been holding too much moisture against my skin, as it is fairly tight. It’s a big man size watch, and not particularly comfortable, but I was willing to tolerate it, because it is so helpful. I may end up taking the band off, and just keeping it in my pocket.

I have not been able to do much exercising for the last month, partly because of my neck, but mostly because my DH over did it and his Sciatica is acting up again. I’ve been so busy working on the requests on our Plush Memories blog that I have been sitting still more than I probably should be. I’ve not been doing the Tai Chi, either. I know I really need to get back with a scheduled exercise program, the way I was before.

So, some things improve, while other new aggravations begin. Not so different than what happens to everyone, right?

Posted in Uncategorized | Tagged balance, brain fog, cancer, drug interaction, epidurals, exercise, freezing, herniated disk, melanoma, muscle spasms, Neurologist, pain, PatientsLikeMe, prayer, Quality of Life, skin cancer, Tai Chi | Leave a reply

Some Things Better, Progress with Others

Day by Day with a Movement Disorder Posted on October 27, 2007 by DBOctober 27, 2007 2

I’ve been busy the last few days trying to get used to the TAP and regulating my meds and diet to try to deal with the colon problems I’ve had for well over a year now. The TAP dental appliance is doing as well as I would expect. I slept about 7 hours last night, which is a huge improvement for me. I am still waking up a couple of times in the night to go to the bathroom, though, so it’s not yet a completely restful sleep. It’s time for me to make an appointment for a new Sleep Study, to see if the device is handling my Apnea appropriately. That will be the determining factor on whether I can get my insurance to pay for the TAP or not, and whether it’s worth using.

I am pleased to see that there is a way to use the TAP device as the anchoring mechanism for a CPAP mask, if it becomes necessary to go back on that. A nasal pillow delivery system can be attached directly to the dental appliance, so there would be no straps or mask all over my face. That’s encouraging, as it means I can look forward to either getting by with just the TAP, or the TAP plus CPAP – but NO MASK!!! So, I’m very optimistic about the coming Sleep Study.

As for the elimination situation, I am somewhat improved, although certainly not where I would like to be. I’m still belching and having gas problems, but not having as much trouble actually going to the bathroom as I was. So, the Acidophilus, the Bentyl prescription, and an extra Metamucil capsule a day seem to be the right plan of attack for that problem.

DH and I have been searching for some practical ways for me to keep track of all my pills, the dosing times, and a way to effectively keep me on schedule. I seem to have some kind of Freudian aversion to remembering to take my pills. I hate having to take so much medicine, and I think it’s causing some kind of passive aggressive reaction that I’m going to have to overcome. We’ve taken some positive steps to get over this hump. We bought two Plano tool/fishing tackle boxes, each with 4 storage boxes in it. That gives me enough boxes for 8 days, so I can make up meds once a week and have a spare. Right now I am taking medicine at 12 different times a day, so I put a numbered sticker in the bottom of each little compartment, with the dosing time on it. I can take the small box for one day with me wherever I go fairly easily. I even found that I could use my Bible cover to “hide” my pills on Sunday. I just carried my Bible loose and put the pill box in where the Bible would have been. I have to take a dose between Sunday School and Church, so this worked nicely.

Getting me on a dependable schedule was the next problem to handle. I searched for days all over the Internet, looking for pill reminder systems that I thought would work for me. Most would not give enough alarms to suit my needs, or any PWP’s needs, for that matter. PWP tend to take our meds closer and closer to each other as the disease progresses, so it’s not unusual for a Parkie to be taking something every hour during the day, and even getting up in the night to take something. Also, some of the more promising systems only allowed you to set pill reminders from say 8:00AM to midnight, and my first pill is at 5:00 AM.

So, I ended up buying a Timex Ironman Data Link watch, which can be connected to the computer via USB. It’s like having a PDA on your wrist. It came yesterday, but I have been studying everything I could find about it while I waited for it to come, and I had my pill schedule all ready to send to the watch. It worked like a charm. It beeps and the face lights up and flashes for several seconds, and the names of the pills I need to take scroll across the watch face. If I don’t push a button on the watch, I get another reminder in 5 minutes. Since I’ll be wearing it, I’m much more likely to heed the reminder. I also have the reminders set up on Outlook, since the computer is on all day long, anyway.

The watch needs to be quite large, as you might expect, so it’s the size of a man’s sports watch. I don’t mind that, if it keeps me from forgetting a pill, as I have been prone to do. For now, it’s in my pocket, because I’m going to have some links taken out of the band. There’s a lot to learn about this watch, but the main thing for me was the Alarm mode, as it allows up to 200 alarms a day! And that was super easy to get up and running.

My tremors still remain, not as bad as they were when I went to the ER, but still enough to make me feel like I’m trying to walk on Jello, and it gets worse as I get tired later on in the day. I use the walls and the furniture here in the house to steady myself, and I have managed to do without my cane at church, by the hardest. But anywhere else we go, like our Date Day, or to go out to eat, I’m using the cane. The hand tremors are also more prominent, and don’t seem to ever go away completely, but I can handle a fork and spoon OK, and type, so I can live with that.

My biggest problem has been the odd about to pass out feeling I’ve been getting after lunch and supper, but not breakfast. We’ve checked my blood pressure during a couple of these attacks, and it’s always low, like 98/58 low. I can’t do much but sit very still and wait for the feeling to pass. I have found that eating something sweet makes me feel better, but that may just be because it’s a comfort food for me. Or, it may means that this feeling is from a low blood sugar situation, rather than a low blood pressure one.

We may have narrowed it down to being an interaction between the Sinemet and the protein in my meals. Yesterday, just as a test, I had a vegetable lunch without any meat, and I did not have the weird feeling later on. So, I’ll try that again for a few days, and see what happens.

Dear sweet hubby took over the compost making task for me for the last couple of weeks, but I did it all by myself this morning. I’m very tired, but feeling good that I was able to accomplish it. I’m also sweeping off parts of the driveway almost daily now, and the deck and patio underneath every once in awhile. That gives my arms and shoulders a good workout, and it’s good for my balance, too. I’m also using the trekking poles the whole time at the track now, where I usually do 3 laps, and then the leg exercises and my Tai Chi. My balance is still way off, so the Tai Chi looks pretty ragged, but I’m doing it anyway. After all, nobody but me knows just how pitiful my form is, right? 😉

So, I see progress with several areas of concern, but disappointment that I am in nowhere near as good a shape as I was before I had the Celestone shot that sent me to the ER.

I continue to try my best to live each day with a positive outlook, and I think the Bentyl has helped with the depression I was dealing with.

Posted in Uncategorized | Tagged antidepressant, balance, Bentyl, blood pressure, cane, dental appliance, diet, difficulty walking, exercise, gas, IBS, insomnia, Metamucil, Sinemet, Sleep Apnea, Sleep Study, Tai Chi, walking poles | 2 Replies

Trying a Different C-Pap Mask

Day by Day with a Movement Disorder Posted on August 21, 2007 by DBAugust 21, 2007 4

I took the c-pap stuff back to the supplier yesterday, and they have changed me to a very soft nasal “plug” that doesn’t have nearly as much strapping all over my face as the nasal mask did. I slept 6 straight hours, without getting up at all. I can’t remember how long it’s been since I did that. It’s not perfect, as my nostrils were sore this morning, and I can still feel the thing, even hours after it has been out. I’ve always had this odd thing where I could “feel” a hat long after I had taken it off, and this canula is doing the same thing.

I have hope now that I will adjust. The frustration I was feeling with the other face mask was really wearing me out. It’s a good thing I don’t cuss! LOL

I’m calling the Gastroenterologist today, as I want the colonoscopy for my peace of mind. I’m still not satisfied with my elimination situation. We took our kittens to the vet this morning, and I got light headed and had to sit down quickly, because we were standing, waiting for the vet to come in our treatment room. I blame that on my tummy, as I felt better after I excused myself and used their facilities.

I’ve started going out in our yard and working just as soon as it’s daylight, as it’s just too hot later on in the morning. So, my exercise routine is back on track, with walking and Tai Chi every day, plus working for a little while in the yard. By the time I come in around 7:00AM I’m drenched in sweat.

I’m definitely going to have to get my Neurologist to prescribe something to stop this excessive crying I’m doing. I broke out in blubbering at the c-pap office, trying to tell the tech how frustrated I was trying to adjust to the mask. I have learned that this is called emotional lability (more recently called Pseudobulbar affect), and it is a PD side effect. He doesn’t want to change my meds until I get the cpap and elimination situations settled, and that makes sense.

So, some things seem to be getting better, and others aren’t.

Posted in Uncategorized | Tagged C-PAP, depression, elimination difficulties, emotional lability, exercise, Gastroenterologist, insomnia, Neurologist, Parkinson's, PWP, Quality of Life, Sleep Apnea, Tai Chi | 4 Replies

43rd Wedding Anniversary!

Day by Day with a Movement Disorder Posted on June 14, 2007 by DBJune 14, 2007 8

How about that! Yesterday we celebrated our 43rd wedding anniversary. We’ve actually been seriously in love since 1960, but we waited for me to graduate from college before we got married. I wouldn’t recommend that long an engagement to anyone, but getting my education was important, and it’s helped our family financially all these years.

We went to a movie and ate out and generally enjoyed being with each other, as we always do. I would wish that all marriages could last so long with so much love still there after all the years.

It did get me out of the house and away from all these estate issues. We’ll go to the bank today and open the ESTATE bank account and change over all the CD’s to our name. That will be a couple of more things I can then cross off my task list, which is a very satisfying thing to do.

What with all the stuff we’ve been cleaning out of Daddy’s house, I finally got up the gumption to clean out Pop’s closet at our house. My FIL lived with us the last few years of his life, and when he died, I just couldn’t bring myself to deal with his clothes. They weren’t really in my way, so I put it off. Well, now I need the closet to store some of Mama and Daddy’s stuff until we can sell it on eBay, so all of Pop’s things are bagged up and ready to give to the Thrift Store. I will have to get the name tag labels out of everything, though, as he was in an Assisted Living home his last year, and everything is marked.

I’ve finally worked our eBay store back up to 250 items listed, which is about all we can afford at one time. Maybe now some other things on my To Do list can move up the line.

I did sleep longer last night, but it was because I took a Darvocet last night. The movie gave me a headache, plus I was generally achy all over. I think I’ve been over doing it lately, trying to box a lot of things up. Doing a lot more leaning over and picking things up than I have in a long time, and my muscles are complaining about it. Walking is great, but it doesn’t take care of all the muscle groups. I have been doing some simple arm exercises with the 1 lb weights, and I’ve gone back to doing all the neck and shoulder exercises that the Physical Therapist put me on some years ago for the degenerated disk in my neck. I continue to do the Tai Chi, as well, so I’m really trying to build up my muscle tone. I do have a set of exercise videos that I bought several years ago, but that means getting down on the floor. Getting down isn’t the problem .. getting back up is! LOL So, I’m postponing using them for awhile. I figure by the time the weather turns cold I’ll be strong enough to get up and down safely.

We’re still waiting for them to start work on our new garage, as we special ordered everything to match our house. I’m getting antsy, seeing that beautiful driveway and slab, with no building going on. But it will come, sometime soon. I just need to be patient.

Our older DD and SIL have moved into Daddy’s house, in the midst of quite a mess. I’m glad it’s them and not us!! But youth puts up with stuff that age can’t or won’t. We’re working as hard as we can to empty the house of all of my parent’s things, but it’s a slow go.

So, I continue to stay busy, improving little by little each day. Crossing things off my list reduces my stress level, so I rejoice every time I finish one small part of this huge undertaking. Some days I have to hunt for something to feel positive about, but I work hard at staying optimistic. Thanks to all of you dear friends for your encouragement!!!!

Posted in Uncategorized | Tagged eating out, eBay, exercise, headache, insomnia, Physical Therapy, Quality of Life, settling an estate, stress, Tai Chi | 8 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

Decided Against It

Day by Day with a Movement Disorder Posted on May 28, 2007 by DBMay 28, 2007 6

I do appreciate the feedback you gave me on the decision about joining the St. Vincent’s facility, but we finally decided not to do it at this time. Time was, after all, the deciding factor. It was going to eat up about 3 hours each day I went, and to get any good out of it, I would have to have gone at least 2 days a week, if not 3. I think I can accomplish just about as much with home exercise equipment and our time at the walking track, which is about 5 minutes from home. Of course, in this day and time, we have to take gas prices into account too, and we do live a long way from any of these kinds of sports facilities, with some really bad traffic to contend with both ways.

I continue to accomplish more and more when I exercise in the mornings, but I’m paying for it each night with a lot of sore muscles. DH fusses at me for over doing it, but it doesn’t ever seem like I am at the time. It’s only later in the day that I realize I’ve over taxed my muscles. I think some of this pain I experience is coming from the Peripheral Neuropathy, particularly since I went off the Cymbalta. My Neurologist wasn’t the least concerned about me taking it in conjunction with the Zelepar, even though the Pharmacist had warned me about the combination. So, I may yet go back on it. But for now, I’m still adjusting to adding the Requip back to my meds, so I don’t want to add 2 new drugs at the same time.

The Requip is beginning to upset my stomach, just the way it did last time. I’m having lots of heartburn and belching a lot. Nothing else has changed, so it has to be the culprit. I’ll put up with it if it doesn’t get much worse than this, but I’m still planning to ask for the Neupro patch when I go back to Dr. S in June.

Just to document where I stand physically:

I can now sit down and stand up from a straight chair without using my arms, at least in the morning. I can’t by the evening, though. Sofas and soft chairs I haven’t mastered yet. I can walk over 3000 steps a day on the pedometer most days. I’ve put the handicap toilet seat away for now, as I can deal with the standard one, as long as I have the sink cabinet to hold onto. I’m still using the cane when we go to yard sales and such, where the terrain is unknown, and I still don’t go up and down flights of stairs if I can avoid it. Crouching down to get things in and out of my kitchen cabinets is difficult, so I usually depend on DH to do that for me. I lose my balance too easily, particularly with something in my hands. My core muscles, those of the trunk, are definitely getting stronger as I continue to exercise, as I can now lift my behind when I do what’s called the Bridge. It’s a simple exercise, really. All you do is lie on your back, feet on the floor, with your knees raised, and try to lift your bottom. Until recently, I couldn’t lift more than a half inch or so, but now I’m coming completely off the floor.

I’m doing the Tai Chi short form almost every day now, and I’m getting pretty good at it again. My balance continues to improve.

The biggest problem I am having right now, I suppose, is the insomnia. As soon as I started back on the Requip, it started back again. I haven’t been able to sleep past 3:00 AM for some time now. I get a lot done on the computer, but I really need the sleep! I’ve tried napping later in the day, but that doesn’t work unless I’m in the car. Then I can doze off almost instantly ;).

So, I am progressing, but I have lots of room for improvement. Eating healthy foods and exercising are just as much medicines for me as anything that comes in a bottle!

Posted in Uncategorized | Tagged balance, cane, drug interaction, exercise, gas, GERD, insomnia, nausea, nutrition, peripheral neuropathy, Physical Therapy, Quality of Life, stomach, Tai Chi | 6 Replies

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

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