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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: Plush Memories Lost Toy Search Service

Seeing Neuro This Week

Day by Day with a Movement Disorder Posted on May 22, 2011 by DBJune 4, 2020 2

I am still very weak, with little energy for standing or walking. I’ve tried to gradually increase my exercise level, hoping to build up some strength, but so far it’s not making any difference. I have been off the Lamotrigine for almost 2 weeks now, so it’s a matter of wait and see what the Neuro thinks when I go back to see him this week. At least I’m not jerking a lot. I’m very thankful for that.

As part of my physical therapy and our weekly outing we call our Date Day, we decided to go to a huge yard sale with hundreds of booths. Knowing my stamina level, I used the walker with the seat, which was definitely needed. It took us about an hour to walk through the whole thing, with a few stops to look at interesting items. But we didn’t find anything we wanted to buy. The seat came in handy, as I knew it would, but I was also glad to have the big swivel wheels. They made the walk easier than the simple kind of wheeled walkers do.

So, I continue to spend most of my time working on efforts to help tornado survivors thru our free Plush Memories Lost Toy Search Service and also a Facebook site called Wedding Dresses for Tornado Victims.

We aren’t physically able to get out and help with the debris removal and other urgent needs of the survivors of the April 27th tornadoes in Alabama, but I can help through the computer.

We have well over 150 Fabulous Finders eagerly awaiting their chance to unite replacement stuffed animals, dolls, and blankies with the children who lost them during the storms. And the Facebook page now has over 50 Wedding Dresses, Bridesmaid’s Dresses, and other wedding related apparel donated, as well as donations of wedding related services, such as invitations, alterations, and flowers.

I’m now trying to find ways to reach out to the pastors of churches that were damaged or destroyed during the tornadoes, hoping to find the brides who will need help with their weddings. And I’ve reached out to several Toy related sites on Facebook, so they know that we can help individual families replace the most precious of lost toys.

So I stay busy, doing what I can, and pray that my Neurologist will be able to find some way to help me get my strength back.

Posted in Exercise | Tagged Alabama, difficulty walking, disaster relief, exercise, Facebook, Lamotrigine, Neurologist, Plush Memories Lost Toy Search Service, tornado damage, weakness, Wedding Dresses for Tornado Victims | 2 Replies

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

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