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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: Tai Chi

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Continuing to Improve

Day by Day with a Movement Disorder Posted on April 29, 2007 by DBApril 29, 2007 2

I am really beginning to see some improvement in my muscle strength in the last few days. No, I’m not ready to run the Marathon, but I am doing my sets of exercises with much less difficulty, and I can see the ease of walking around the track getting better. I did as the PT told me to, and cut back the walking to once around the track, and then I’m finishing up the time with my daily exercises and one set of the Short Form Yang Style Tai Chi that I used to do. My Tai Chi is not in very good form right now, but that will improve as I do it consistently.

I’ve also started reading a new book that caught my eye at the bookstore Friday, called Chi Walking. I’m impressed so far with it’s clear cut instructions on how to walk properly, and there’s lots of mental and emotional balancing stuff thrown in for good measure. I would recommend the book to anyone who wants to be more efficient in their walking and body mechanics, so don’t let any of the “Chi talk” keep you from giving this book a try.

I’m trying really hard to get back some of my old habits of simple things like washing dishes first thing in the morning. I know that sounds trivial to some of you, but having that shiny sink (FlyLady, anyone?)really does motivate me to do more about keeping the rest of my life cleaned up. The clutter is going to take awhile to get rid of, but I’m making a consistent effort on it now. And, of course, the more I do around the house, the more exercise I’m getting.

We’ve gotten back into selling on eBay pretty much now, with the habit of taking new pictures in the morning and writing descriptions while I watch TV back in place. We keep buying the stuff, so I guess I better start selling again, huh? It is fun to see the bids come in, and we’re both big kids about it. It’s great to have a hobby that pays for itself, too! LOL

Now, if I could just get myself back in the blogging habit as much as I would like. I apologize for not being around much lately. I changed over to VISTA, bought new versions of some of my software {translation – learn how to do it all over again), and started changing all our sales templates to CSS in the last month, so I have been just a wee tad busy ;). I have managed to keep up with BLOG VILLAGE, though, adding lots of new members and getting the HEALTH Carnival ready for today’s unveiling. All in all, though, I’m very please with what I’ve accomplished lately.

Posted in Uncategorized | Tagged BLOG VILLAGE, eBay, exercise, house cleaning, Tai Chi | 2 Replies

All Your Wonderful Thoughts & Prayers

Day by Day with a Movement Disorder Posted on March 28, 2007 by DBMarch 28, 2007 13

There’s just no way I can begin to tell you how much I’ve appreciated all the thoughtful comments you dear friends have been leaving, just to let me know you were thinking of me, and to express your condolences.

It’s hard to know how to get started again, after so much has gone on, but I guess the best thing to do is just start ….

I’m more rested, we’re dealing with the long To Do list that is involved in closing out Daddy’s affairs, and I’ve had a birthday.

I’m still resisting changing my PD meds, as we started going to the local walking track this week. I want to give myself a chance to build back some strength through exercise and Tai Chi first. My right arm and knee are still bothering me, but I’m taking less and less pain meds, so they must be getting better.

When I said on my last post that one journey ended and another was beginning, I was referring to myself just as much as Daddy. DH and I have had someone to take care of almost constantly for the last 10 years or more. It’s strange to be able to make plans without having to take someone else’s needs into account.

I have lots to do to get back up to speed with our blogs, BLOG VILLAGE, and our online sales, but I’m not pressuring myself. I’ll get it done gradually.

I look forward to getting back to reading all your great blogs that I’ve been missing, so bear with me, as it may be awhile before you see me commenting on everyone’s posts.

Posted in Uncategorized | Tagged care giving, Daddy, death, exercise, grieving, Parkinson's, support, Tai Chi, tennis elbow | 13 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

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

Tai Chi Helped!!

Day by Day with a Movement Disorder Posted on November 14, 2006 by DBNovember 14, 2006 2

I’m glad I went on to Tai Chi, even though I wasn’t feeling like it. I certainly wasn’t as stable as I sometimes am, but I worked hard, only took a few breaks, and felt better for having gone through the whole form and worked on some of the stances. I did get nauseated at one point, but it passed pretty quickly. He’s very patient.

I’ve tried to find a class within easy driving distance, but there just doesn’t seem to be one.

Posted in Uncategorized | Tagged exercise, nausea, Tai Chi | 2 Replies

Well, as You Can See – I’m Back to Plain!! YUCK!!

Day by Day with a Movement Disorder Posted on November 14, 2006 by DBNovember 14, 2006 6

My advice to anyone who hasn’t changed to Blogger Beta is DON’T!!! I’m having way too much trouble with this. I finally get it just right in FireFox, and no matter what I do, I can’t fix it in IE. I even went back and started over with the simple template again, and monitored one change at a time, to see what was causing the problem with IE. Once I had the problem, undid the change, the problem wouldn’t go away!!! What a messy piece of programming!! Google should be ashamed of themselves. Do I sound peeved? Well, I am.

On a happier note, I have a Tai Chi lesson today. Not sure how well I’ll do, as nauseated as I’ve been, and as stiff as my shoulders and neck have been the last few days, but I’m hoping the exercise will help. It always leaves me feeling very relaxed, and, as you can tell, I need that right now.

Posted in Uncategorized | Tagged beta Blogger, exercise, Tai Chi | 6 Replies

Tai Chi & Flu Shot – Taking Care of Myself

Day by Day with a Movement Disorder Posted on November 8, 2006 by DBNovember 8, 2006 2

I went for my Tai Chi lesson yesterday, and I’m finally beginning to show some real improvement. My balance is a lot better, and I can go for the whole 30 minute session without a break now. We went through the whole form several times, with lots of practice on some of the transitions that I have trouble with. It really doesn’t matter what he chooses to work on, as it’s all good for me. I really like the Sensei. He seems to have an uncanny ability to gauge just how much to push me and when to back off. I guess that comes from years of teaching. All I know is he’s good at what he does.

The lessons are not cheap, because I couldn’t find a group class anywhere close enough. But then, my medicine isn’t cheap, either. I would recommend Tai Chi to anyone who needs to exercise, but is afraid of anything strenuous, because of health issues. You’ll get a good workout, but it will be at a pace that your body can slowly adapt to. Plus, it leaves you in a very relaxed state of mind and body.

I also got my flu shot yesterday, too, at my Neurologist’s recommendation. I took two Tylenol when we got in the car afterwards, and I haven’t had any problems from it at all.

So, I’m continuing to work toward strengthening my body, taking care of myself, and getting back to as normal a routine as I possibly can. I’m house cleaning more, which is good exercise in itself, walking more, and generally feeling like my old self. I thank God every day for giving me that day of normalcy, and I no longer take anything for granted. I pray that I can continue to stay in this attitude of gratitude.

Posted in Uncategorized | Tagged exercise, flu shot, God, prayer, Tai Chi | 2 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

Tai Chi Form Was Good Today – Tummy Wasn’t

Day by Day with a Movement Disorder Posted on October 17, 2006 by DBOctober 17, 2006 2

I’ve increased the dosage of the Requip, but I haven’t yet cut the amount of Sinemet, other than going to the half tablets four times a day. It really showed today when I went for my second Tai Chi lesson. I could tell the difference immediately, as I walked around the mat to warm up. Just walking was much easier. Doing the form was much easier, too, and I only had to stop once for a walking break. I was very pleased with my progress.

I’ve not been pleased with my stomach, though. Just drinking some water after we left the gym set my abdomen to cramping. After lunch, which was a particularly bland one, the gas got so bad that I had to take some Gas-X. I was really in a lot of pain way up in my chest. After I took my 4:30 meds, my stomach was very tender.

I’ll be cutting the Sinemet down to just twice a day on Friday, so hopefully my tummy will begin to get better then. If it doesn’t, I’ll have to call the Gastroenterologist again.

Posted in Uncategorized | Tagged exercise, Gastroenterologist, GERD, Requip, Sinemet, Tai Chi | 2 Replies

First Tai Chi Lesson

Day by Day with a Movement Disorder Posted on October 14, 2006 by DBOctober 14, 2006 2

My DSL is on the fritz right now, so I’ve not been able to get on the Internet much lately. So I’m behind on posting here.

I went Thursday for my first private lesson with Sensei Tetsu for Tai Chi. I had taken group lessons from him several years ago, when I was under the stress of just having lost my mother to Alzheimer’s and was then still taking care of my FIL, who also had Alzheimer’s. I found the exercise to be physically challenging and emotionally releasing.

I had read that it was a recommended exercise for Parkinson’s patients, so it seemed logical to try to work on it again. Sensei was happy to help me in any way he could.

He started me from the very beginning and put me through quite a workout over the thirty minutes of the lesson. I had to tell him to stop twice, because my legs were trembling so badly, so he walked me around the mat and helped me work on my deep breathing, until I was ready to begin again. I could feel my legs and arms limber up and obey my commands more easily as the lesson progressed.

Tai Chi requires intense concentration on the most minute body position changes, and the slow flowing movements are just perfect for me. I would lose my balance at times, of course, but he understood that, and just kept going, giving me the chance to catch up with him. He’s an extremely patient teacher, and just perfect for my needs. I hope to continue seeing him once a week for some time.

He’s not cheap, by any means, but neither is all the medicine I’m on. And neither would a nursing home be, if I ended up in one. So my DH and I just consider the expense to be like any other medicine that has been prescribed. I wouldn’t think of not getting a prescription filled, and I am not going to do without this exercise, either.

We intend to do everything we possibly can to delay the debilitating stage of PD as long as possible, in the hope that a cure, or at the very least, better medicines or procedures, will be discovered before I reach that point. We leave my ultimate outcome in God’s hands, but will do everything we can humanly do toward a good result, as well. I believe that is what God expects us to do.

Posted in Uncategorized | Tagged exercise, God, Tai Chi | 2 Replies

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