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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: facial exercises

YARD SALE today!!

Day by Day with a Movement Disorder Posted on November 1, 2008 by DBMay 25, 2016 7

Well, I’ve worked myself ragged this week helping move things out to the garage for our big yard sale, and now comes the moment of truth! Did we set the prices too high? Are they too low?? Should be a fun day, with beautiful weather.

Once hubby decided it was time to have one he really got busy, and there’s no way I could have done this on my own. I’m pretty sore from helping to move furniture around, plus lots more walking and lifting than I have been used to. It’s been good for me, as long as I didn’t over do it. Only time will tell on that one.

We managed to get quite a few of the boxes from my parents’ house out there, so that will free up some space in the house. Anything to cut down on the clutter will make it easier to get the rest of the last couple of years accumulation of stuff under control. I just have not felt like cleaning, and poor hubby has been doing the best he could to take care of me and take care of the house. I won. House lost. I’m sure not complaining, as he has done all the laundry for years, fixes meals, and waits on me like I was a princess. He’s the love of my life, and no one could ask for a better helpmete.

We swapped out recliners, bringing my mother’s recliner in the house and putting mine in the yard sale. Hers is a much smaller frame chair and really opened up the living room. I’ve slept in that recliner for several years taking care of Mama and Daddy, so I know how comfortable it is. It was a chore to make the swap with such bulky furniture, but I am glad we did. That is as along as our backs don’t complain too much!

We went to the dentist this week for our regular cleaning appointment, and this was the first time I had been back since the new meds and new diagnosis. I was fine until the next day, when I woke up with a very sore jaw. The muscles on both sides were aching from keeping my mouth open so long. At one point yesterday the right side started up with spasms. It was weird, because it made my eyeglasses move! I yawned some big yawns and did some exaggerated mouth stretches and managed to get it to stop, but that was another first for me. I hate to think what it would have been like if I were not on the Primidone. I probably would have bitten her hand off right there in the dentist chair!!

I’m back to the early rising again, and the change from Daylight Savings Time tomorrow is going to play havoc with my sleep for awhile, too. I get a lot done in the wee hours of the morning, but it sure makes me sleepy early in the evening. I’m like a baby getting my days and nights mixed up. But no amount of just laying there will help me go back to sleep, so I might as well get something productive done with my time, right?

One other thought before I put this rambling post away. I made the signs for the Yard Sale, and was very pleased with the results. It’s amazing how steady my hand is now compared to the way it was before the Primidone. I took drafting for 3 years in high school and taught handwriting in elementary school, so neat printing is something I used to be very good at. I had reached the point that my handwriting was difficult to read, let alone pretty. But this week I was able to free hand draw the letters and then go over the lines with a Sharpie and keep the ink where I wanted it!!! It was a wonderful moment for me, because it says so much about how much I have improved over the last few months.

Well, I’ve rambled on – not too surprising considering I’ve been up since 2AM – but feeling really good about my accomplishments this week. It may take a year, but I am going to win out over this messy house!

Posted in Quality of Life | Tagged care giving, coordination, Daylight Savings Time, dentist, facial exercises, house cleaning, insomnia, muscle spasms, myoclonus, Primidone, Quality of Life, Yard Sale | 7 Replies

Choking Episode

Day by Day with a Movement Disorder Posted on February 6, 2008 by DBFebruary 6, 2008 8

I’m still feeling remarkably well, considering it’s been weeks now since I took a PD med. Reading a post on PLM makes me think it’s at least in part due to the 6-8 cups of green tea I’m drinking most days. Taking the Turmeric and eating a lot of the Super Foods, mostly raw, probably has a lot to do with it, too.

I’m doing my neck exercises each morning, using the cervical collar daily for about 15 minutes, and using the TENS when I need it, so I’m not hurting much, either.

But I did have another choking episode this morning. It’s a little hard to explain. I’ve done it several times lately with my own saliva, but this morning I had a mouth full of tea when a tiny amount just slipped down the wrong way. I wasn’t really swallowing, either. That’s what has been happening with saliva, too. I may not know how it’s happening, but I sure know the results! I end up coughing and gagging for several minutes each time, and it hurts. I’m going to have to try to figure out exactly what is happening, so I can decide the best way to prevent it.

Other than that, I’m feeling fine. I worked really hard on our collectibles and toy inventory yesterday, and pretty well wore myself out, trying to get it stored in a more logical and organized way. But it was good exercise, and I’m glad I was able to do it. I also added another pile to the lasagna compost. That is slowly building up an area of rich material about 100 square feet or so and over a foot high. I haven’t done any walking or Tai Chi for some time, and I do need to get back to it, now that I’m feeling better.

There was a good explanation of voice exercises on PLM, too, so I guess I’ll try to add those exercises to my daily routine, too.

And, to finish this post on a positive note, neither one of us have a single doctor’s appointment this whole month!!!

Posted in Uncategorized | Tagged appointments, cervical collar, choking, exercise, facial exercises, nutrition, Quality of Life, swallowing, TENS | 8 Replies

Just When I Start Sleeping Later … THE TIME CHANGES!!

Day by Day with a Movement Disorder Posted on November 4, 2007 by DBNovember 4, 2007 4

I can’t win for losing! LOL!! I was finally putting together a string of days when I slept until close to 5:00AM, a real accomplishment for me, when the Daylight Savings Time changed on me this morning. So, I’ve been up since “3:30AM”, even though my brain thinks I slept until 4:30AM. I am very pleased that I slept over 7 hours, but I know that I always have a hard time adjusting to these time changes. My appetite gets off schedule, and it has always taken me quite a while to adjust to the different sleep times. Plus, I have my Sleep Study this week. Not the best timing in the world, but it will have to do.

My neck is much better this morning, with pain and stiffness only when I try to turn almost all the way to the sides. I have been very careful with this spasm episode, trying to be very cautious with any stretches, trying to move just to the point of pain, but no further. I have not tried to advance the TAP screw any, since this spasm hit, but I am sleeping with the dental appliance every night.

I have reached an amount of extension of my lower jaw that makes it harder to get the pieces in my mouth. Now, I have to connect the two pieces before they go in my mouth, and then jut my lower jaw forward to meet the mouthpiece. Before, I could put the two halves in separately, and jut my jaw forward to hook them together. I can’t unhook them in my mouth any more in the mornings, either. I have to break the seal with them still hooked together. That’s not an easy thing to do, as they really fit tight. Of course, it’s because they fit my teeth so perfectly that this contraption doesn’t hurt, so I’m not complaining.

I exercise my jaws with the chewing pieces every morning while I’m on the computer, and don’t even really have to think about it. It’s about like chewing gum, really. Then, I also do a series of facial grimacing and stretching exercises for my Parkinson’s, to delay the time when I will lose facial expression. The chewing strengthens my jaw, and should actually help delay the “Mask of Parkinson’s”.

I am in a better mood generally since I started taking the Bentyl, which is an antidepressant as well as an antispasmodic. I’m taking it to soothe my spastic colon, but I’ll take any mood improvement I can get! I’ve managed to get started on several projects that I was previously just overwhelmed by, so that’s a good thing. I even managed to put something new on eBay several days in a row, and posted some new requests for people searching for lost loveys on our Plush Memories blog. I’m still way behind on that, though. But I’m completely caught up on the BLOG VILLAGE membership screenings. The house is still chaotic, but that’s nothing new. I never was a very good housekeeper, sad to say. I do love it when it’s all uncluttered, but I never have been able to find the gumption to keep it that way. All in all, though, I can tell that I’m getting out of the doldrums I’ve been in for some time, and that’s a very good sign!!

Posted in Uncategorized | Tagged antidepressant, Daylight Savings Time, dental appliance, eBay, facial exercises, house cleaning, IBS, insomnia, muscle spasms, Parkinson's, Sleep Apnea, Sleep Study, stomach | 4 Replies

Impressions are Made

Day by Day with a Movement Disorder Posted on September 20, 2007 by DBAugust 14, 2019 6

I went on a feverish research marathon on the internet night before last, and printed out a bunch of pages of different dental appliances for sleep apnea. I also found several pages explaining exactly how to talk to my Blue Cross insurance people in order to have a fighting chance of getting this thing covered by my medical insurance. This sort of appliance does not fall under dental, as it really has nothing at all to do with the teeth. I printed a list of possible side effects, too, just in case I had any problems. Troubles are always easier to cope with for me, if I know I’m not the only one having them.

So, armed with all my paperwork, I went to my own dentist yesterday and had a long talk with him. I really like him, and have been going to him for many years. In fact, he has crowned almost every tooth in my head! LOL That’s just as well, too, as this appliance would not work if my teeth were not strong and in good condition. But, I digress. I was pleased with what he told me about how he did this process, but even more pleased when he brought my very own hygienist in to talk to me. It seems that she uses the very appliance that he was recommending! She explained that she could move her mouth around with it on, and that was something I was particularly concerned about.

She also told me about the exercises you have to do each morning when you take it out. If you don’t do that, you will pull your bite all out of alignment, not to mention have a lot of jaw pain. That’s not a problem, as I have to “exercise” my face muscles every day anyway, as part of my Parkinson’s exercises. These are designed to forestall the mask look of PWP. We lose the ability to use the fine muscles that control facial expression, and these exercises are supposed to prevent that. I don’t know if they will, but I intend to try, anyway. So, adding in some jaw and mouth exercises will be easy enough.

So, I did it. I had the impressions made and paid out 1,000 big bucks right there on the spot. That’s not cheap, by any means, and it certainly means I’d better be right about this one!! If you thought I was stubborn about trying to get used to the CPAP, just wait and see how stubborn I can be with that much of my own money invested in it! LOL I really feel like this is something I need to solve the insomnia and resultant brain fog I deal with every day now.

Of course, I will do everything I can to get reimbursed by my insurance company, but I had already decided I would do it, covered or not. I did call the insurance company yesterday to find out what forms I needed to get this approved, and then my Sleep Disorder doctor’s office to ask them to get Dr. A to fill them out. So I’ve started the ball rolling, anyway. I made sure I got the medical code for this appliance from the dentist’s office, too, so I could use that in my argument for coverage, if needed. I would not have known to do any of this if it hadn’t been for a dentist somewhere in California, of all places, who had a whole page explaining exactly what to do to get this appliance covered. Ain’t the internet great?

While I’m waiting the three weeks it will take to get this in, I’ll work to get the skin around my mouth back in good shape. Those masks have really done a number on my Acne Rosacea, with dry irritated patches all along my mouth on both sides down to my chin and across. My skin usually takes awhile to heal, once I get this irritated. I quit wearing makeup years ago, because everything broke me out, and I have to be very careful about any soaps or medicines I use on my face. That alone made me a poor candidate for cpap. Adding in the degenerated disks, which required that I be able to move around in my sleep, and I hope I can make a good case that using this “custom fabricated device” is a “medical necessity,” as the insurance company requires. Both of those conditions are documented in my medical records, so I think they have a fight on their hands if they try to deny this claim. I’m loaded for bear, and ready to take them on, but, hopefully, they will agree and I won’t need to fight them. I really don’t need that extra stress. But, what will be, will be.

Getting rid of the cpap frustration and looking forward to getting the dental appliance has improved my mood considerably, so I remain positive that everything will work out for the best. I do covet your prayers and good thoughts that I will find adjusting to the mouth piece to be an easy transition.

The device I’m getting is called a TAP, which stands for Thornton Adjustable Positioner, and you can read all about it here and here, if you’re interested.

Posted in Uncategorized | Tagged brain fog, C-PAP, dental appliance, dentist, facial exercises, insomnia, insurance, Parkinson's, prayer, Quality of Life, Sleep Apnea, Sleep Disorder Specialist | 6 Replies

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