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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: Lost Toys Search Service

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

Showing Improvement

Day by Day with a Movement Disorder Posted on December 23, 2009 by DBMay 19, 2016  

Well, I’ve been on the antibiotics and other meds that my Gastro put me on for over a week now, and I’m beginning to see some improvement. I still have problems with my tummy, but the constant feeling of nausea is gone … and good riddance!

We wrapped all the presents and filled the stockings last night, so we’re all ready to enjoy the next few days with our family. We’ll all be together this Christmas, and that always makes it extra special. Some years we have to share our daughter with her in-laws, which is only fair, but I’m glad she and her hubby will be celebrating with us this year.

We’ve had a particularly rewarding Christmas this year already, helping a large number of families find replacements for lost or bedraggled lovies for Santa to put under their Christmas trees! We’ve received wonderfully excited thank you’s from many of them, and each time one was received it just made this Christmas that much more meaningful. It can’t be said often enough that it really is more enjoyable to give than to receive!!

My hope and prayer is that you have a Christ filled Christmas this year, too!

Posted in Quality of Life | Tagged Christmas, family, Lost Toys Search Service, nausea, stomach | Leave a reply

It’s Supposed to Take 21 Days to Make a Habit …

Day by Day with a Movement Disorder Posted on March 3, 2009 by DBMay 24, 2016 2

I’ve been working really hard to get some habits going in my life that I can do without having to think about them so much. I’m doing my morning breakfast, dish washing, tooth brushing and mouth wash gurgling, and putting lotion on my hands in exactly the same order every day. That may sound like a dumb thing for a 65 year old to be practicing, but it’s something I have to think about each day, or I forget to do half of it. I’m not ready to make a list and post it, so I’m hoping by doing them in the same order each day I can turn the whole routine into a habit.

I’ve been very faithful to do the exercise sets that the Physical Therapist planned out for me. Now for that, I did make a list, and I check each time to see what the next step is. No, I can’t remember them all if I leave it up to memory, so the list is necessary. I’m not going to bother to try to memorize it anyway, because he will be changing it near the end of March.

I’m still trying to find a good substitute for the 10 minutes I’m supposed to spend on the exercise bike. On pretty days I can walk around the house a few extra times and make up for it. On rainy or raw cold days (hey, we had SNOW on Sunday!) I’ve been walking around inside the house, but I doubt if I am doing as much inside as I would outside.

Our driveway goes from the front around to the side of the house, where a sidewalk connects to the patio along the whole back side of the house. And there’s a sidewalk from there all the way back around to the front of the house. So I have a ready made “track” that I can walk on, without having to worry about traffic. Plus, the slope from front to back of our lot gives me a chance to walk up and down hill, too.

I’m wearing a pedometer and recording my number of steps each day. I figure I’ll average them together from this week and try to beat that average from now on.

My mood has been good, and I’m feeling confident that I can improve my mobility and stamina. I still spend the majority of my day working at the computer, trying to stay caught up with our Lost Toys Search Service and taking care of our online sales. I’ve had to slack off on adding to our catalog momentarily, as I got behind on requests for help when we went to Huntsville a couple of weeks ago. It’s kind of a two steps forward and one step back kind of thing, as I get new requests constantly, while I am trying to take care of the old requests. But it feels so good to be able to help people when they are so miserable that the Toy Search has a lot to do with my being upbeat. I wouldn’t want to stop it, no matter how much of my time it takes. It’s certainly a better use of my time than watching TV!!

Posted in Quality of Life | Tagged brain fog, exercise, Lost Toys Search Service, Physical Therapy, Quality of Life, walking track | 2 Replies

Getting Better I Hope!

Day by Day with a Movement Disorder Posted on December 15, 2008 by DBMay 24, 2016 4

I’ve been faithful with the Prune Juice/Miralax cocktail every afternoon and the constipation is getting better, thank goodness. I’ve noticed just a little bit of hand jerking when I mean to single click on the computer, but not as much as I was doing it on the Neurontin. One thing I am doing differently this time is to continue to use the suppositories, even if my digestive tract is behaving itself. At least for now I am pleased with my progress with those problems.

We continue to be busy with our toy sales, and I stay busy every day trying to keep up with the Lost Toys Search Service. Ever since I changed the routine to give me more time on the requests and less on the searches themselves I have managed to stay caught up most days. That’s quite a contrast to the 60 or so requests I was behind on before I decided I had to make a change.

The Search Service is a way to help people in an unselfish way, and that positive energy helps me through most days in a good frame of mind.

The house is bit by tiny bit getting straightened back up, with a bunch more stuff going out to the garage for our next sale. We may not have pretty weather again until Spring, but with Alabama weather you just never know what you’ll get on any given day.

I never have been into Feng Shui, or however it is spelled, but I can testify that it’s easier to get work done in an uncluttered environment. So I keep chipping away at the clutter and all those piles and stashes that have taken up residence with us. Each one conquered leaves me feeling that much better about myself.

I know that some people get more depressed as the Holidays approach, but thank goodness I thoroughly enjoy each ritual and family tradition. I can’t say I enjoy shopping, but we have such a small family that there’s not much of that to do anyway. Most of our time is spent finding all kinds of odds and ends to go in everyone’s stockings, big kids’ and children’s, too. And the wonderful music is the best of all.

I look forward to being with all our family at our grandchildren’s house this year, as always. Just thinking about it makes me smile.

Posted in Quality of Life | Tagged Bowel Retraining, Christmas, family, house cleaning, Lost Toys Search Service, Miralax | 4 Replies

My First Day on Neurontin (Gabapentin)

Day by Day with a Movement Disorder Posted on November 20, 2008 by DBMay 25, 2016 4

I got through my first day on Gabapentin fairly well. I did not have any jerks or tics, although my walk was again like being on a ship. The room did not spin, but my balance was way off. I felt drugged much of the day. We’ll see how I do today, because the Primidone should be completely out of my system by now.

I continue to clean the house and took on one of those “stacks” that seem so easy to pile things on in the beginning and so hard to get rid of when they have grown. This was the place where we pile Sunday School books, bulletins, etc. and it had grown to be a monster. I found quarterlies as far back as 2004!!! A stack of really neat Holman commentaries on the Sunday School lessons will be given to a friend who is a part time bi-vocational preacher. A stack of Christian magazines will end up in some of my doctor’s waiting rooms, and much of it will be added to our local recycling bin. With that stack gone the dining room looks better already.

My Tai Chi attempts are improving, though pitiful looking to anyone who might see me. And I continue to do the morning exercises for my legs and neck that the therapist put me on last year. My strength is returning little my little.

It’s so much easier to set goals and work toward them now that I am off the Clonazepam and feeling better. I’m very thankful to be feeling motivated again instead of so apathetic!

Speaking of goals, I passed the 1,000 item mark on our online Catalog. I had set that as a goal to reach by the end of this year, and I met it a whole month in advance. I hope to have another thousand listed by the end of next year. The Search Service and our sales keep me plenty busy at the computer, which still serves as a way to break up my physical activity.

All in all I can say I am doing very well, and I thank God for his many blessings.

Posted in Medicines and Supplements | Tagged apathy, depression, elimination difficulties, exercise, Go-Litely, house cleaning, Lost Toys Search Service, Miralax | 4 Replies

I’m on the Full Triavil Dose Now

Day by Day with a Movement Disorder Posted on October 9, 2008 by DBMay 25, 2016 2

I’ve worked up to the full 3 times a day dose of Triavil, and my digestive system is definitely getting better. I am no longer eating something with every pill dose, but still with some that I think it would be wise. I also rearranged my pill taking times to make the schedule fit the Triavil better. I am supposed to take the last one late, but with food. That’s a big No No with GERD, so I have compromised by slowly moving my supper time to later in the evening. I still have to be through with all food and drink at least 2 hours before going to sleep, but it’s better than it was, anyway.

We have tried for some time now to use honey in my 8-10 cups of my anti-oxidant tea each day, trying to get away from the Splenda I was using. But, between the honey and eating something with each med dose, I’ve gained some weight again. So, after trying Xylitol and not finding it sweet at all, I am now using Stevia. So far I have not seen any bad effects from it, and cutting out the food with pills plus changing to zero calorie tea should help with the weight.

I’m still not getting as much exercise as I need to, although I continue to increase my activity level gradually, particularly with housework. And when I feel good enough I really enjoy having a clean house, so that is not the problem. I just wear out so quickly. I am a big fan of FlyLady, with her 15 minute chores!!!

I’m trying really hard to get ready for a yard sale to get some of the clutter out of here, plus we’re selling more toys than ever. That’s time consuming, but very emotionally rewarding, knowing that we are helping people find a lovie they are in some cases desperate to locate. The Lost Toys Search Service is our Ministry, as far as we’re concerned. But it’s the free side of our business, and the business pays for the time, gas, and items we sell. Each one helps the other, if that makes sense.

Every page of our listings and every email is sent with a scripture at the bottom that we picked as being appropriate for the audience we serve. And I add that signature with a tiny prayer that it is the right one for that person that day. God promises that his Word will not return void, and I claim that promise every day.

OK, that housework is beckoning, so while I still have some energy I need to go get something clean!!!

Posted in Medicines and Supplements | Tagged diet, elimination difficulties, exercise, exhaustion, GERD, Lost Toys Search Service, Stevia, stomach, Xylitol | 2 Replies

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