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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!

Category Archives: Exercise

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Tests Came Back OK – Busy Helping with Tornado Disaster

Day by Day with a Movement Disorder Posted on May 4, 2011 by DBJune 6, 2021  

My second blood work test and the ultrasound test came back with normal results, so there’s nothing to worry about there. I’m trying to move around more and see if that helps get my strength back. So far I still get tired and weak feeling very quickly. It seems to be more in my legs and neck than in my arms, which is kind of weird. So, I get up and do a little and then sit down again for awhile.

I’ve been extremely busy on the computer since last Wednesday when Alabama was hit by the worst tornado outbreak to hit in the USA since 1925! Whole towns have been demolished, and there are so many people who have lost everything. We’ve been bagging up toys, knowing that when the time was right there would be a need for them.

We’ve been spreading the word through our free Plush Memories Lost Toy Search Service, all the pages concerning disaster relief I could find on Facebook, as well as posting repeatedly on Twitter about the dire need for all kinds of help in Alabama, where the damage was the worst. We would appreciate your help in spreading the word about these needs, too. Monetary donations can be made through the Red Cross, United Way, Salvation Army, and the Baptist Mission Board.

EDITED 061811 The place to mail toys for Alabama Tornado Children has changed. Here’s the link to the information about how to mail items to help the children who have survived the massive tornadoes in Alabama.

We want to help find those special dolls, security blankets, and stuffed animals that would help these little ones feel secure again. Anyone who asks for our help with a search and indicates it is for a tornado damage situation will get Super Top Priority Searching by our 150+ Fabulous Finders. And we have a 50% Discount in force until the end of June for all catalog orders from our Dirty Butter Plush Animal Shoppe that have an Alabama Shipping Address.

Our Plush Memories Lost Toy Search Service is FREE.

Posted in Exercise | Tagged blood tests, children, disaster, disaster relief, donations, Lost Toys Search Service, lovies, Plush Memories Lost Toy Search Service, stuffed animal, tornado damage, ultrasound, weakness | Leave a reply

Went to Physical Therapist Yesterday

Day by Day with a Movement Disorder Posted on February 24, 2009 by DBMay 24, 2016  

I’m very pleased with the outcome of seeing the Physical Therapist yesterday. He asked questions, tested various positions of hand, arm, and leg strength, and had me give him a detailed explanation of the exercises I have been doing. He asked about my daily routine, and from all that conversation showed me how to modify some of the moves I was doing wrong, showed me how to do some additional exercises, and made a plan for me to follow for the next month.

Instead of doing all my exercises in the morning, he wants me to do 12 sets of everything in the morning, plus 10 minutes of the bicycle and a couple of turns around the outside of the house. Then I am to do it all again in the afternoon, but only do 8 sets. He did say I was doing too much at one time, the way I had been doing 3 sets of ten.

He completely changed the way I had been doing squats and lunges, and made some suggestions to slightly modify a few of the upper body sets. He seemed very confident that he could help me, and appeared to be ready and willing to see me monthly to monitor my improvement and suggest changes as appropriate.

Medicare has a limit of about $1800 and 15 visits a year, and my Blue Cross only allows 15 visits, but I don’t think they put a price limit on it. So seeing him once a month for the rest of this year should work just fine.

He did veto the idea of getting a treadmill, saying it was too dangerous. He showed me how to sit behind the exercise bicycle and use it almost like a recumbent bike, so my coccyx wouldn’t flare up again. My tail bone is still tender from my efforts on our bicycle at home.

Our exercise bike at the house has a big fan like rear flywheel. It’s too big for me to be able to use our bike the way he suggested, so I pulled out the little portable foot and arms exerciser I had bought to use with my mother after she broke her hip, and I may be able to make do with it.

We will have to buy some ankle weights for one of the exercises, which is specifically for Myoclonus! That was quite a shock!! I can do it just fine barefoot, but we’ll see what happens with a little weight resistance.

I’ve done my set of 12 this morning, with two sets of Tai Chi, about 5 minutes on the foot cycle, and walked around the house 3 times. The foot cycle is very awkward, and it doesn’t take long for my legs to start hurting, so I’ll have to work at that.

I’m quite excited about being able to take charge of this aspect of my treatment, and I’m looking forward to the positive results of increasing my activity level.

Posted in Exercise | Tagged exercise, Physical Therapy, Quality of Life | Leave a reply

Just Learned about WalkAide for Foot Drop!!

Day by Day with a Movement Disorder Posted on July 28, 2008 by DBDecember 17, 2021  

I don’t have Peripheral Neuropathy any more, and our daughter who was hospitalized with horrible Neuropathy problems a couple of years ago, including foot drop, is doing much better now. You can read all about her problems resulting from Gastric Bypass Surgery, if this is of interest to you.

But when I read a new post on PLM today about this device called a WalkAide, I was excited by the possibilities!

One member on PLM is currently using it and has only good things to say about how it has improved her gait to a more natural one, and thus made her less likely to fall. She has written about it before and it didn’t register just how revolutionary this small device is, but today I decided to research it.

Someone else on PLM was advised to get this device, but their insurance would not cover it. Since it costs in the $5,000 range it’s understandable that she didn’t rush out and buy it on her own.

So what does the WalkAide do? It’s a small device that is strapped on just below the kneecap that senses the wearer’s foot movement and delivers the correct electrical signal (which the brain may or may not be sending correctly, but is not being received correctly) to the correct muscles to allow the foot to pick up the toes correctly as the foot lifts during walking.

Who can this WalkAide help? ANYONE with a Movement Disorder that causes the foot to drop down when it is lifted would be a possible candidate for this system!

Posted in Exercise | Tagged difficulty walking, foot drop, gait, Gastric Bypass Surgery, PatientsLikeMe, peripheral neuropathy, Quality of Life, WalkAide | Leave a reply

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