↓
 
Some posts contain affiliate links, marked with an asterisk *
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

  • About Me – My MITO Story
  • Privacy Policy
  • Contact Us
Home→Tags Love - Page 2 << 1 2

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: Love

Post navigation

Newer posts →

Thoughts on Lingering at Death’s Door

Day by Day with a Movement Disorder Posted on September 5, 2006 by DBSeptember 5, 2006  

Another dear saint from our church family has gone on to be with her Lord today, after a long bout with cancer. The last month has been almost totally a vigil by family members, attending her wasting physical body’s needs, while she was no longer aware of them. We’ve been through the same thing twice ourselves, with my mother and my FIL, and to a lesser extent, with my MIL, who died in Intensive Care, rather than at home under our care. Those last days, weeks, or months, as the case may be, are very hard on the family emotionally and physically, but after time has passed, I have found that those days actually help with the healing process of grief. You can look back and know that you were there with them in their final hours, that they were at home, where they wanted to be, with family near.

I’ve grown to be a much more spiritual person for having the privilege of watching three loved ones breathe their last breath on earth, knowing they were breathing their first in Heaven. I understand things on a different level now, not necessarily that I can articulate, but every thing and every one is appreciated more. I hug more. I cry more. I laugh more. I’m more.

Posted in Uncategorized | Tagged death, family, God, Love | Leave a reply

Great Visit from DD

Day by Day with a Movement Disorder Posted on September 4, 2006 by DBSeptember 4, 2006 2

The TV’s back on, I’m back on the computer, the cat is satisfied that there are no strangers in the house, so everything’s back to the status quo.

It sure was wonderful, though, for today and yesterday afternoon on, to have our younger DD home for a quiet visit. I think it did her as much good as it did me. We didn’t go anywhere, and we really didn’t do anything. We just sat on the sofa and chatted, if the spirit moved us, or just enjoyed doing nothing.

She leads such a hectic life, between work and chauffeuring three active children here and yon from one practice to another, plus her part of the housework. Being still, with nobody hollering Mama! was probably quite restful for her. And I just enjoyed being with her. For all that it came because of serious illness, I did get to spend a lot of time with our older DD this last year, and I was missing spending some time with our younger DD, too.

Nothing has changed, leg wise. My digestive system continues to behave itself, and I’m eating normally now. Of course I’m still on the high powered medicines. I’m to report my progress to the Gastroenterologist’s nurse tomorrow, and she’ll tell me what to cut back on next.

We watched a little bit of the MDA telethon today. I thank God for two healthy children, who have grown into loving women, who are good people. Both have a strong faith in Jesus, and they are both married to Christian men. All three of our grandchildren are healthy, and they are saved, too. Yes, we have much to be thankful for.

For those parents who are struggling through the anquish of seeing that precious little one be diagnosed with a serious illness, my heart cries out for you. I can’t begin to understand how you feel, but I can pray for you. May God be with you today in a close and intimate way. Amen.

Posted in Uncategorized | Tagged Gastroenterologist, God, Love, prayer, prescriptions | 2 Replies

A Truly Normal Saturday!

Day by Day with a Movement Disorder Posted on September 3, 2006 by DBSeptember 3, 2006  

For the first time since the end of March, I got out my digital camera and took a series of pictures of an item to put on eBay last night. That’s the first time I’ve touched that camera in all this time. I don’t think I could have held it steady much sooner than now, as I was so weakened by my bout of colitis. Anyway, it felt good to actually get a new listing up again, and I plan to get at least one up each day from now on, and hopefully two most days.

My strength has improved some, what with all the exercise I’ve been doing, but my walking is still very shaky. I have a Neurologist appointment this week, and I’m really looking forward to that. I’ve been really patient, and I’m praying that this will be the time for all the tests that will help him figure out what’s wrong with me.

I am so very thankful to God for my DH, who has been so attentive and so supportive through all these months. I don’t know what I would have done without him. I don’t know how people, who don’t have Jesus to hold onto, make it through the scary times that life can throw their way,either.

Posted in Uncategorized | Tagged appointments, colitis, God, Love, Neurologist, prayer, tests | Leave a reply

Glory to GOD!!

Day by Day with a Movement Disorder Posted on August 28, 2006 by DBAugust 28, 2006  

Yesterday was a particularly good day for me. I’m proud of myself for overcoming my inhibitions about using the walker. I found that the people at church were more understanding about my saying I wasn’t worse, that it was just for safety and to make things easier for me, than I had expected.

The worship service and Sunday School blessed me more than usual, and I just felt particularly close to God. I keep a running dialogue with God going all day long, as a usual habit, but some days it seems more like a monologue, if you know what I mean. Yesterday was one of those special days when everything just seemed to ooze God’s love for me, and I’ll be remembering it as a landmark for a long time, I’m know.

Today, my legs are tired, as we did more at church yesterday than usual. Even with the walker, it was a lot of walking. If I had not used the walker, we would not have been able to participate in all the fellowship activities of the day. That would have been a shame.

It’s strange that I should be writing this when one of Ruth’s post at Wheelie Catholic today is about people with disabilities being included in church. She emphasizes that inclusion involves the disabled person actively being involved in church activities, something I had all but dropped out of, partly by medical necessity, and partly by convenience (read that just too easy to stay at home).

My DH has been really patient with me, as he’s a Deacon and very rarely ever misses a service. He hasn’t tried to push me into going when I wasn’t ready to go, and I really appreciate that. But I know he’d much prefer that we go together, the way we always have. Now that I’ve had a taste of the sheer joy of group worship again, I’m going to try harder to not let laziness get in the way of going all the time, or at least most of the time.

Posted in Uncategorized | Tagged God, Love, Sunday, walker | Leave a reply

Post navigation

Newer posts →

Recent Posts

  • Mitochondrial Disease Treatment in Phase 3 Trial October 21, 2019
  • God’s Healing Sunlight March 31, 2018
  • Immune System Issues, Slowly Recuperating January 25, 2018
  • Flu Shot? Yes or No? December 20, 2017
  • Nutrition Information Sources December 14, 2017

Archives

Tags

balance blood glucose brain fog care giving depression diabetes diagnosis diet difficulty walking elimination difficulties Essential Myoclonus exercise exhaustion Friday Date Day gait gas Gastroenterologist GERD God insomnia MITO Mitochondrial Myopathy Movement Disorder muscle spasms nausea Neurologist nutrition pain Parkinson's peripheral neuropathy Physical Therapy prayer prescriptions Primidone PWP Quality of Life Requip Sinemet Sleep Apnea stomach stress symptoms tremors weakness Zelepar

Our Websites

  • Dirty Butter – Cherished Memories Dirty Butter – Cherished Memories
  • Dirty Butter Plush Animal Shoppe Dirty Butter Plush Animal Shoppe
  • Plush Memories Lost Toy Search Service Plush Memories Lost Toy Search Service
  • Yesterday's Memories Yesterday's Memories

Blog Friends

  • A Catholic Life – A Family Dealing with MITO
  • Anuket's Crusade
  • Baby Food Steps
  • Gilbert Guide Blog
  • Gimp Parade
  • GodsPlans
  • Leafing
  • Life According to Liz
  • Life with Shaky
  • Living in the Slow Lane
  • Mito Families!
  • Mozart Movement
  • My Father's Hand
  • My Life as a Mighty Mito Mama
  • My Own Arcadia – Spanish Language Blog with Parkinson's Information
  • Parkinson's Straight from the Horse's Mouth
  • Parkinsonism – Road to Diagnosis
  • Patients Like Me (All Kinds of Diseases)
  • PD Plus Me
  • Princess Leah Diaries
  • Shake, Rattle, and Roll
  • Taking Baby(food) Steps
  • Today with Pokie Too and PD
  • Wheelie Catholic
  • YOPD

Mitochondrial Myopathy Resources

  • Correcting Human Mitochondrial Mutations
  • mitoACTION
  • Mitochondria Research Society
  • Mitochondrial Bottleneck Cracked
  • Mitochondrial Cytopathy in Adults
  • Mitochondrial Myopathy Disease Foundation
  • Mitochondrial Vitamin Cocktail – A Guide for Patients
  • Muscular Dystrophy Association
  • NIH – Monkey DNA Swap May Block Mitochondrial Disease
  • Overview of MELAS
  • Research Match
  • Scientific American Article about Using Glutathione as a Marker
  • UAB Researchers Explore the Mystery of Mitochondria
  • When Cells Face an Energy Crisis

Nutrition Resources

  • Keto Calculator
  • Ketogenic Diet Resources
  • Maria Mind Body Health
  • Treating Constipation without Destroying Your Gut

Products I Use

  • RubyLux NIR-A Infrared Bulb
  • The Energy Blueprint
  • Satori Qigong Flow Form

Parkinson's Disease Resources

  • Parkinson's and Movement Disorders Center
  • The Brain from Top to Bottom

Peripheral Neuropathy Resources

  • About.com Guide to Peripheral Neuropathy
  • An Algorithm for the Evaluation of Peripheral Neuropathy
  • Brain Tumor Dictionary
  • Charcot-Marie-Tooth Association CMTA
  • How to Choose and Use a Walker
  • Jack Miller Center for Peripheral Neuropathy
  • Peripheral Neuropathy Fact Sheet

Radial Neuropathy Resources

  • The Wrist Drop of Saturday Night

Subcribe to Our Feed

©2022 - Day by Day with a Movement Disorder - Weaver Xtreme Theme Privacy Policy
↑
Translate »