↓
 
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 apathy

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: apathy

My A1c was 5.5!!!

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

Whoo Hoo!! I’m CELEBRATING!! My A1c reading was 5.5 yesterday!! Anything below 7 is considered to be extremely good, so I really did well!! This number is in line with what a person who does NOT have diabetes would get.

The A1c reading is a blood test, usually done at the doctor’s office, that gives a good indication of the average blood glucose level for about the last 3 months.

According to Wikipedia:

In the normal 120-day life span of the red blood cell, glucose molecules react with hemoglobin, forming glycated hemoglobin. In individuals with poorly controlled diabetes, the quantities of these glycated hemoglobins are much higher than in healthy people.

Once a hemoglobin molecule is glycated, it remains that way. A buildup of glycated hemoglobin within the red cell therefore reflects the average level of glucose to which the cell has been exposed during its life cycle.

Basically, if I understand that, extra glucose in the blood permanently changes our red blood cells. Since our blood cells live for about 120 days, measuring the percentage of “sugared up” red blood cells is a good way to see what my glucose level has been for the last few months.

I was not as pleased with my weight, though, as I’ve not lost any more weight in some time. I’m having a hard time getting myself in the exercise habit, and I know that’s the problem. I’m controlling what I eat and how much I eat, with occasional splurges, but I’m not burning enough calories. Plus, I need to be exercising more just for good general health. I’ve already seen considerable improvement with my step climbing and walking up and down steep driveways on our Date Days, so I should be motivated to work out even more. This is what I’m going to have to work on mentally, as I have never been a very physically active person.

So, I celebrate the great blood glucose results for the last few months and continue to exhort myself to improve my activity level.

Posted in Type II Diabetes | Tagged A1C Test, apathy, blood glucose, diabetes, diet, exercise, Quality of Life | 2 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

Messing Around

Day by Day with a Movement Disorder Posted on January 30, 2008 by DBMay 7, 2016 4

Well, I went to the Dermatologist Monday, and other than a small flareup of my Acne Rosacea, he didn’t find anything worrisome. He did say I had some sun damage on my forearms … But I’ve had almost 65 years to accumulate that damage, so it’s not really surprising. I did the sunbathing stuff in high school and college, but that’s just about it. I did have some pretty bad sunburns during that time period. Of course, there were no sunscreens then.

I’m finding the cervical collar to be very helpful, but it hurts to wear it. I’ve made about all the adjustments that I can to make it work better on my short neck, but it is still uncomfortable. Let’s face it — I have a small face and CPAP and Collars were just not meant for someone my size. It’s a shame my hips and tummy haven’t figured out they are supposed to be petite, too! LOL

I’m not getting as much use from the TEN’s as I thought I would, because it’s trouble to hook it all up. That old apathy thing going on again. I need to get in the habit of putting it on before I eat lunch or ride in the car. Those seem to be my worst triggers for pain. It’s the leaning forward with no support posture that makes mealtimes hurt. For breakfast and supper, I’m usually on the computer on the sofa, with the laptop in my lap, eating in between typing. Yes, my keyboard needs cleaning out something terrible, but I don’t know how.

I’ll try to do better by the TEN’s today. It’s rented for one month, and then, if I think it helped, insurance will pay for it. Seems fair enough to me.

I got just plain disgusted the other day, and told hubby I’m going to go off of all my PD meds for awhile, just to see how I do. I made a short experiment with that right around Christmas, but the holidays weren’t really a good time to be experimenting, so it was a very, very short time that I was without the meds. I intend to stick this out for at least a week, maybe longer. I just want to see once and for all if the meds are doing me any good at all.

I worked hard all day yesterday getting more of our plush animals and dolls into our own Dirty Butter Plush Animal Shoppe, so I can more easily sell directly. I’ll still be on eBay, but I need to wean away from depending on that source completely for sales. EBay messes with things too much, and changes things at a whim. At least with my own site, I know exactly what’s going on. Course, right now, not much IS going on!

I started working on tax forms I have to fill out for the paid caregiver we had with Daddy. Once I do all his taxes, and the Estate’s taxes, and pay what is owed to the IRS, we can close out the Estate bank account, and invest the money. It will be good to see the end of that chapter of my life.

Hubby continues to be supportive and helpful, I feel better, I don’t have any signs of skin cancers, and I’m accomplishing something with our sales. I’d say that’s a pretty good sign that the apathy is lifting. I sure hope so.

Posted in Uncategorized | Tagged Acne Rosacea, apathy, cervical collar, Dermatologist, Income tax, settling an estate, skin cancer, TENS | 4 Replies

Getting Back to “Normal” and Doing Some Soul Searching

Day by Day with a Movement Disorder Posted on January 20, 2008 by DBJanuary 20, 2008 17

I didn’t have any lasting bad effects from the Physical Therapy last week, and my neck continues to improve. The pain is essentially gone, although I do still have some stiffness, and certain activities still hurt. At least I am not hurting when I’m doing nothing!

I continue to limit my reading about Parkinson’s, but it sure is hard to intentionally stay away from Parkie friends I value so much. I had intended to stay away until I had the appointment with the Movement Disorder Specialist (MDS) in April, but I just couldn’t do it. They are too much a part of my life now. If I am diagnosed with something besides PD, I plan to keep up with them anyway. I did stay active in the Alzheimer’s caregiver forum I belonged to for quite awhile after our parents died, but I did finally quit visiting. Life moves on eventually.

I had another choking episode with a pill a couple of days ago that was really bad. That particular pill burns in the mouth, for some reason, if it doesn’t go down right away, and it burned in my throat when it got stuck. I ended up with a very sore throat that lasted until the next day. So, again, I’ve gone back to doing what my Gastroenterologist told me to do. Taking the pills in apple sauce instead of water makes all the difference. I’m just being lazy, and dealing with a heavy dose of apathy right now. That’s the only way to explain that it’s easier to get a glass of water than to open the fridge and get out the apple sauce and a spoon. I have gradually stopped doing several things he told me to do, and I need to get back to the straight and narrow, for my own sake, and my hubby’s. He worries about me so, often without good reason, other than he loves me. I must try to do all I can to keep from getting myself into situations like this that scare him so.

There was a post on Patients Like Me today that has me doing some heavy thinking. Basically, it was about how many Parkies avoid being around those PWP who are farther along in their stage of the disease, because they do not want to be confronted with their own possible future. I know I fit in that category, as I have intentionally not even tried to find a support group, and I have turned down some invitations to meet some online Parkie friends who live in Alabama, too. It’s one thing to read how they are doing, but quite another to see it for myself. I know that’s the way I would react, because I freaked out when I first looked at a free DVD I ordered that had real Parkinson’s people doing exercises. I haven’t watched it again. It does help, knowing that other PWP feel this way, too, but it’s not fair for those who are farther along, who are missing the support they need. It’s a reaction I’m going to have to work on, but not until after I see the MDS.

As it always seems to be, I get better in one area and regress in another. I guess that’s normal for everybody, right?

Posted in Uncategorized | Tagged apathy, choking, denial, depression, Gastroenterologist, Love, pain, Parkies, Parkinson's, Physical Therapy, procrastination, PWP, Quality of Life, support, swallowing, symptoms | 17 Replies

Odd Physical Therapy Today

Day by Day with a Movement Disorder Posted on January 17, 2008 by DBJanuary 17, 2008  

I went to PT this morning, and they did start me on some exercises, all for my arms. The first few were fairly easy, but then she had me pushing down with what seemed like more resistance than the others were set for. I stopped at the first set of ten on that one, instead of doing two sets of ten the way I had done all the others.

Then I moved to the pulley rope, which I’ve done before with other therapy, and it’s always fairly easy, unless you just can’t raise your arms. I had no trouble with that at all. Problems came when I stood up from that one, though.

I woke up this morning trembling more than usual, and getting into the cold car this morning just made it worse. And then I did all this new exercising on top of that. I guess everything just worked together to bring major big time tremors in my legs and arms, all at the same time. I was frozen in place, unable to move, because I was just not in control at the moment. The Aide immediately pulled a chair over for me, and I didn’t do any more exercises. They hovered over me for awhile, with me assuring them that I was OK, that it would ease off on its own, that there wasn’t anything they could do, and I really was OK.

After I convinced them that I was not going to fall, they moved me to the room where they do the ultrasound and heat therapy with the TENS machine, and everything went as usual. About half way through all that, the tremors settled down to just the usual quiver in my right arm and leg.

The only thing I can think of is that using the machine that was apparently set with too much resistance for me to handle just used up the dopamine I had available for a little while. It will be interesting to see if I can find anything to agree or disagree with my hypothesis.

It’s been a shaky afternoon, and I just gave in to my chocolate craving – that’s my way to deal with stress, as any chocoholic will tell you. And my neck is sore, but not painful, from the exercise. But at least I’m walking around about like usual – maybe a little shakier, but not much.

She told me I have 3 more visits before I have to see the Orthopedist again, so I need to make that appointment. I should have done it today, but I’m in one of those procrastinating moods today, and I just didn’t feel like doing it. These moods don’t make any sense, but I get into them every once in awhile. Things that happen like this morning seem to bring this apathy on, like everything is just too much trouble. It’s stupid, I know, but it’s just the way I get at times. I’ll snap out of it, just as the shakes finally stopped. Just takes a little time.

Tomorrow is Date Day, and it will be a better day. I’m sure of it!

Posted in Uncategorized | Tagged apathy, balance, coordination, difficulty walking, dopamine agonist, exercise, exhaustion, freezing, muscle spasms, Parkinson's, Physical Therapy, procrastination, stress, tremors | 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

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

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 »