↓
 
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 Leukodystrophy

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: Leukodystrophy

PRAY for HOPE – a Little Girl Living with LEUKODYSTROPHY – A Degenerative Neurological Disorder

Day by Day with a Movement Disorder Posted on August 11, 2008 by DBSeptember 7, 2019  

This is a copy of parts of a recent post on our Plush Memories Lost Toys Search Service.

Please take the time to read about Hope, who has a degenerative neurological disorder called Leukodystrophy and pray for Hope and give this family your prayers and encouragement.

Dear Rosemary,

This email is long overdue — The Summer has kept me and my 17 month old twins very busy. I wanted to give you an update on Charlotte’s blanky… This wonderful mother was kind enough to send the blanky for Charlotte (at no cost) as long as I said a prayer for her daughter, Hope.

I have made a donation in Hope’s name and continue to keep her in my prayers…

Please post this great story of “HOPE” (a pun very intended)for those praying for Lost Lovies AND this beautiful little girl — WHO NEEDS ALL OF OUR PRAYERS!!!!

Natalie

As Corrie says in the July 2nd post to her journal, “We are excited to make use of all the services they have, but it’s still hard to say that our 6 year old will be in Hospice.”

You can donate in Hope’s honor on the journal website, helping Caring Bridge provide the free journal space for families like Hope’s. Or you can donate to the Ronald McDonald House in Detroit that they use when she has extended tests, therapy, etc.

Regardless of any monetary donation you might consider, Corrie’s whole family, and especially Hope, need your PRAYERS.

Posted in Uncategorized | Tagged God, Leukodystrophy, Movement Disorder, Quality of Life | Leave a reply

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 Estates Collectible Shoppe Dirty Butter Estates Collectible Shoppe
  • 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
  • Living with Alzheimer's
  • 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
  • Ketosis Archives – Low Carb Food List
  • Maria Mind Body Health
  • Treating Constipation without Destroying Your Gut

Products I Use

  • The Energy Blueprint
  • RubyLux NIR-A Infrared Bulb
  • PureEffect Water Filtration
  • 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
  • Evaluation of a Patient with Muscle Weakness
  • 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

©2021 - Day by Day with a Movement Disorder - Weaver Xtreme Theme Privacy Policy
↑
Translate »