↓
 
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 memory

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: memory

WORLD RARE DISEASE DAY is TODAY!!

Day by Day with a Movement Disorder Posted on February 29, 2012 by DBOctober 9, 2019  

TODAY is World Rare Disease Day!

As I was recently diagnosed with Mitochondrial Myopathy, I’ve been doing a lot of personal research trying to understand a disease I had never heard of until a few months ago. We have been told by the diagnosing Neuromuscular Specialist that there is currently no cure and no real treatment available.

The main symptoms that affect my Quality of Life are extreme muscle weakness and fatigue, but I also get Myoclonic jerks, I walk with an ataxic gait, and I have digestive problems, as well as memory issues. And I have Type II Diabetes that is under control with nutrition and weight control. Diabetes is another way that Mitochondrial Disease can manifest itself. In hindsight I suspect that my symptoms probably started showing up about 30 years ago.

One in 10 Americans is affected by a rare disease – that’s over 30 million people. That’s more than the total number of people living worldwide with cancer! There are more than 7,000 diseases classified as being rare, most of which affect children. I can’t even imagine how parents must react when they are told their precious little one has a rare disease – and learn that 30% of the children diagnosed with a rare disease will die by their 5th birthday.

Most of these rare diseases are genetic in origin. There are no cures for these diseases, and only about 5% of these diseases even have a treatment. Less than half of the Rare Diseases have any kind of foundation, advocacy group, or community support group, because many of these diseases affect fewer than 100 people.

My own disease falls under the scope of the Muscular Dystrophy Association, so  I do have knowledgeable people I can turn to for help. And online there is a the United Mitochondrial Disease Foundation, as well as MitoAction and several Facebook groups dealing with MITO diseases where I can go for information and support. You’ll find me on FB in the 250+ member Mito Adults group – just ask on the group to join, if it would be a good fit for you.

So what about all the families dealing with one of these 3,000 or so Rare Diseases who have no support group at all?

You can help them:

VISIT the R.A.R.E. Project site and learn more. DONATE to help with research if you can.

LIKE and share the Global Genes Project Facebook page with your FB friends and be one of the hoped for Million who show their support for families facing one of these rare diseases.

WEAR jeans today to increase awareness of the need for more research and funding for genetic diseases. Hopefully your workplace is involved in Jeans for Genes as a MitoAction fund-raising effort today. But if not, you can still donate to these causes.

 

Posted in MITO | Tagged diabetes, difficulty walking, digestion, fatigue, i Million for RARE, MDA, memory, MITO, MitoAction, Mitochondrial Myopathy, myoclonus, Rare Disease, UMDF, weakness, World Rare Disease Day | Leave a reply

Jerking Has Been Much Worse

Day by Day with a Movement Disorder Posted on November 16, 2010 by DBMay 17, 2016  

I’ve postponed writing about the increase in my jerks and twitches over the last few months, hoping that it was due to more stress than usual and would go away on its own. But it hasn’t. I called my Neurologist about a month ago to let him know that I was getting worse, and his nurse called back to tell me to increase my dose of Primidone to 2 pills twice a day. I did that for a couple of weeks, with no help at all, so I called back. This time he said to take 3 pills twice a day. Well, that didn’t help, either.

So I called the other day to see what he’d suggest, and I went to see him today. He’s added Neurontin (Gabapentin) to my 3 at a time Primidone dose to see if that helps. He asked me if I had ever been on it, and I couldn’t remember that I had. It wasn’t until I just now did some Googling for Neurontin and Essential Myoclonus that some of my old posts on this blog popped up. I have been on it before, and I had really bad nightmare problems with it, and it didn’t help with the jerks, either. Since I will be in his office building tomorrow, while I’m there I’ll see if he wants to try something else instead.

I had shared some very disturbing to me loss of memory incidences of late, so he has scheduled an MRI for tomorrow. He also had some blood drawn to check for thyroid problems and B12 levels. I’ll probably get those results later on this week. I can’t imagine that my B12 would be low, considering what we eat, but a thyroid problem is certainly a possibility.

The jerks are nerve wracking for me and worrying my dear sweet hubby, so I pray that the added medicine will help. I pray that the blood tests and MRI will help my doctor decide what might be going on with my memory. It may just be a side effect of the very medicines that help me to have a good Quality of Life in other ways. Primidone is one of the ones I take that can cause memory problems, and I’m now on 3 times as much as I was originally taking! And the Triavil I take at night helps to keep my digestive system behaving itself. And he named one other prescription I was on that could cause memory loss, but I forgot which one he said. (ironic?)

Posted in Symptoms | Tagged blood tests, brain fog, Essential Myoclonus, Gabapentin, jerks, memory, MRI, Neurontin, Primidone, Quality of Life, thyroid, tics, twitches | Leave a reply

I’m Still Losing Weight

Day by Day with a Movement Disorder Posted on October 28, 2010 by DBMay 19, 2016 2

Well, I have exceeded my goal weight loss by several pounds, and even though I’ve quit counting calories, I’m still losing weight. It’s just as slow a weight loss as it was all those months of trying, but losing it I am. And I’ve been allowing myself the occasional milkshake or pizza, as the mood strikes, too, without regard for calories or lactose intolerance or blood glucose numbers!

I guess I’ve just gotten so used to eating less that I am still “on a diet”, even though I’m not trying. Hmmm… anyone want a milkshake?

I’ve finished reading Dan’s book, I Will Go On, and I’m in the process of re-reading the chapters I found most inspirational to me. I can’t say that I “enjoyed” the first few chapters, but the bulk of the book more than made up for the opening explanation of the various types of Parkinson’s Plus disorders. I would still recommend it as great reading for anyone dealing with PD, or any Movement Disorder, either as the one with it, or as the care giver. I didn’t find the explanations that helpful, as I’ve already read all this many times before in my own Googling, but I would think that anyone new to PD Plus would find this layman’s explanation of all the variations of severe Movement Disorders to be very useful.

I can only be thankful to God that I have a relatively mild Movement Disorder.

Hubby and I have noticed some occasional tremors in my right hand that aren’t as jerky as my foot, shoulder, and face can get at times of stress. It’s nothing to be concerned about, but worth noting, in case it becomes more frequent. I will be able to look back here and see about when we first started seeing it.

When I was first diagnosed with Parkinson’s, we bought a notebook to log any and all symptoms, doctor’s visits, meds, etc. And I kept it up religiously until after the MDS had changed the diagnosis to Essential Myoclonus and had me on Primidone, which worked wonders for me. But I’ve long since quit writing much in it, depending more on keeping track here on my blog of our war on my Type II Diabetes diagnosis. I would recommend the journal method though, for anyone with a progressive disease, such as Parkinson’s. It’s great to be able to answer the doctor’s questions about onset of symptoms by turning back in a journal to the first entry for a given situation. And it’s much easier to keep track of the side effects of meds, etc., too.

There have been some family issues that have kept me somewhat depressed and definitely more tense of late. I don’t handle my emotions as well as I used to, either, so it’s affecting me more than I would like. It’s just something I need to work on. I know that with God’s help I can meet anything that comes my way.

I recently started trying to memorize scripture verses, both as a way of drawing closer to God and to also exercise my memory. I’m picking verses that I already know in a general way, and now I’m trying to learn where they are in the Bible and learn the exact King James version of them. That’s the version I grew up with, so it’s best for me to use. I know a lot of scriptures in a paraphrased sort of way, but, with few exceptions, I never learned their location in the Bible. I regret that I did not master these verses a long time ago. I can certainly tell that my brain is not as sharp as it used to be, but I’m glad to see that I am having some success.

So here I am at this moment in time, with some successes and other situations I continue to work on. Life is good.

Posted in Quality of Life | Tagged brain fog, diet, I Will Go On, King James Bible, memory, Movement Disorder, Parkinson's, Quality of Life, weight loss | 2 Replies

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 »