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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: brain training

New Diabetic Shoes, Working Puzzles, and Brain Fog Blues

Day by Day with a Movement Disorder Posted on June 15, 2009 by DBMay 21, 2016  

I came home with my new pair of Diabetic shoes last Thursday, and in some ways I like them and in some ways I don’t. I chose a Velcro closure, which I have never worn before, and that, in hindsight, was probably a mistake, since lace up shoes allow for more adjustment across the ball of the foot.

Even though my foot measured as average width, I am finding it difficult to adjust to the tight feeling across the widest part of my left foot. I’ve been patiently breaking them in, but getting a little discouraged. So, I took the amazingly comfortable special insoles out and put the original insole back in. Those are not as thick, but the shoe feels much better. Maybe after I’ve worn them for awhile I will be able to put the super cushion ones back in.

Medicare and my supplemental insurance paid for them, plus enough insoles to change them out every quarter. I figured since I couldn’t get much help with the testing supplies I’d save the money for a new pair of shoes that I needed anyway, and use that savings on test strips.

I continue to lose weight a little at a time, and I’m very pleased with that. I’ve lost 16 pounds since mid April, the first weight I’ve been able to lose since I was diagnosed with Parkinson’s and put on those meds. The change from PD meds to Essential Myoclonus meds didn’t help that problem, either. As my weight climbed I was more and more at risk for diabetes, particularly since it runs in my Daddy’s side of the family. It was not until my glucose levels were under control that I was able to lose weight, no matter how hard I tried. Adding the discipline of checking blood glucose levels 5 times a day on top of my already busy medicine schedule has just meant more to remember, but it’s pretty much routine by now. I still forget occasionally, but considering how bad my memory is, I think I’m doing quite well.

I guess my brain function is the real problem I continue to deal with. I have spells of being extremely forgetful, plus hubby and I have come to realize that I don’t process visual information very well any more. He will see a bird outside, tell me where to look, and it will often be a very long time before I can finally “see” it. I can’t really explain it, but I do know it’s not normal. I’ve made a few mistakes sending out stuffed animals or dolls that were similar to the one someone had ordered, not noticing the differences until they wrote to say they did not get the right toy. Very aggravating – and it costs us money!!

This Sunday I saw a name on our prayer list, immediately thinking it was someone in our Sunday School class who was having surgery. I embarrassed myself in front of everybody asking how she was doing. Of course she had no idea what I was talking about. I know both of these ladies very well, but for some reason my brain just ignored the last name, as if I didn’t even see it at all. I recently had my eyes examined, so I know it’s more a processing glitch than a vision problem.

Things like this seem to be happening more and more often, and I’d be lying if I said it doesn’t bother me. My mother had Alzheimer’s and my Granddaddy probably did, too, so it’s disconcerting, to say the least.

Well, that’s enough whining for one day. Let me get back to something more optimistic. I am very proud of my weight loss and the efforts I am taking to learn more about proper eating habits and diabetes in general. I just need to keep my eye on that 50 pound weight loss goal, and I know I can do it!

I’ve gone back to working Sudoku puzzles in an attempt to help with my strange brain glitches. I’ve also been playing with an old Rubic’s Cube we still had, too. And I plan on finding some more brain puzzles I can work on the computer.

Posted in Quality of Life, Type II Diabetes | Tagged Alzheimer's, brain fog, brain training, diabetes, weight loss | Leave a reply

Tummy Is Still Complaining

Day by Day with a Movement Disorder Posted on August 14, 2008 by DBMay 30, 2016 4

I’ve been on the Prevpac high powered combination of two antibiotics and an acid reducer twice a day now since Monday, and my tummy is cramping more now when food or medicine touches it than it was before I started the medicine! Go figure. I’m going to call Dr. B’s nurse this morning, to see if there is something else I should be doing.

I have continued with the Glycerin suppository routine, but I quit the Milk of Magnesia every 3 days, as it did not seem necessary. I also moved a few of my medicine times around so that the Primidone is not the last thing I take before bed. That dose was going into a completely empty stomach, since I have to empty my tummy before I go to sleep, thanks to GERD. What I came up with is not ideal, but probably better than the way I had it. Now I take the Bentyl last, which is supposed to help the digestive muscles work smoothly and in the normal coordinated pattern, instead of spasms. Not sure that is any easier on my tummy or not, so I have several questions for the nurse.

She has been his nurse for a long time, and we have a good relationship. I have the highest regard for my Gastro and his nurse. They have both been very considerate and patient with me over the years. I never feel like I am being rushed through a mill. I have had a few doctors like that over the years, and I fired them all. I grew up with a family doctor who made house calls, so I like to use medical people who are willing to build a relationship with me. I am very thankful for the great doctors and staff who help me with all my health issues.

I continue to spend a lot of time on our Lost Toys Search Service, and on our online Catalog sales. I’m still a long way from having even half of our inventory cataloged, so it keeps me busy and mentally alert. There’s something new to learn almost every day, and that’s good for the old brain cells.

Speaking of sharpening the brain, have you tried the new Numbrix puzzle that Savant has added to her Parade Magazine article. It’s fun! I even found a place online to work the ones from past issues. I could get addicted to this puzzle very easily, and it’s a nice change from Sudoku.

So, tummy is still a problem, elimination is doing better, and brain is being stimulated. I’m not feeling good, so my energy level is low, but I am getting quite a bit accomplished each day.

All in all, no brain fog and no jerks …. I’d say that’s a good thing.

Posted in Symptoms | Tagged bloating, Bowel Retraining, brain fog, brain training, Gastroenterologist, GERD, glycerin suppositories, muscle spasms, nausea, pain, Prevpac, stomach | 4 Replies

Waiting, But Not So Patiently

Day by Day with a Movement Disorder Posted on September 8, 2007 by DBDecember 17, 2021 8

My Gastroenterologist is a very busy, very dedicated man, for whom I have the utmost respect. I know for a fact that he works long hours, because one of the times I went to his office lately, they couldn’t find my chart. Then the nurse pulled it out of a big duffel bag full of files, and told me those were the ones Dr. B had taken home that night to work on. He had been reviewing my whole chart, hoping to find a pattern in my symptoms that would help him decide on a course of action. I had no idea that doctors took their work home with them. Considering they get calls in the night for emergencies, I always assumed that they tried to leave their work behind as much as possible when they went home.

So, I’m trying to be patient as I wait for him to call me back. I reported in to his nurse last week to let her know that the cleaning out he had me do with the GoLytely did not stop my problems with elimination or with the bloating and gas. She told me then to check back this week, after I had stopped the Amitiza, to see if that would help. Well, I called her Tuesday, and left a message that stopping the Amitiza did not change the problems. I didn’t hear from her, so I called again late Wednesday afternoon, as she is usually so good about returning calls. She said then that Dr. B was going to call me back that afternoon, himself. So, I stayed close to home, with the phone on ready. No phone call. Well, like I said, I know he’s a very busy man, so I waited until late Friday to call his nurse again, thinking maybe there had been a mixup on who was supposed to talk to me. She called me back just a few minutes later to say that Dr. B had just plain forgotten, and was very apologetic, and would definitely call me that evening. Still no phone call. I can’t imagine him calling me on the weekend, but who knows.

I know I need to work on patience, as it is a virtue I really need more of. The old joke is that you should be careful when you pray for more patience, as the way to get patience is to deal with adversity. I guess my “adversity” right now is having to deal with these digestive related problems for over a year now, trying one thing after another, as the doctor ordered, with no relief yet. I’m definitely showing signs of depression, and I blame much of it on this unresolved problem.

There’s no doubt in my mind that I am under medicated right now, as far as the Parkinson’s meds are concerned. But there’s no point in going back to the Neuro until I have overcome my difficulties with getting used to the CPAP, and until something definite has been accomplished with this digestive situation. As it is, I’m changing two things at once, which is not good science. In order to be sure what the cause and effect is on any treatment change, there needs to be only one variable at a time.

I wrote some time ago about how dealing with Parkinson’s is like being in a clinical trial with one participant. I still think that is an accurate assessment of what it’s like. After reading lots of comments and stories from other PWP, it is apparently true for most, if not all, Parkies. The doctors can only try things, never knowing exactly how any one patient is going to react to the meds, or their side effects.

And the depressing thing is, none of these meds work to improve the underlying brain deterioration. They only work on the symptoms. So far, no medicine has been proved to actually slow down or halt the progression of the PD itself, and there’s not even a whisper yet of anything that can repair the damage already done, with the exception of claims made for stem cell therapy.

I do have one positive piece of information to report, though, and I try hard to end on a positive note. I mope about all this enough. Since brain fog is a problem I’ve had for a long time now, I was very curious when someone on the PatientsLikeMe site mentioned the idea of using brain training to improve their mental abilities. That started me doing some research, and led me to the MyBrainTrainer site. It was not very expensive to join for three months, and I figured I could give it a try for that long, and then decide if it were worth taking a year’s subscription. They have a series of online brain exercises, set up like miniature games, that you work through on a planned schedule. I’m on Day 12 of the 21 day basic training part right now. My scores are consistently falling in the 25 to 29th percentile of all their participants in my age range. Not anything to brag about, that’s for sure. BUT, here’s the good part. The brain fog is beginning to lift, just a little. I’m not groping blankly for answers to questions on the Smarter that a Fifth Grader show nearly as often. I find I know the answers more often on Jeopardy, too, and I don’t feel nearly as frustrated by watching these shows as I was a few months ago.

So is the BrainTrainer the reason, or the CPAP machine? I have no idea. Again, changing more than one thing at a time makes such a conclusion impossible. But I don’t care, all I know is that I’m thinking better, even as my body is slowing down again from not having a strong enough PD med dosage in my system. I’m very grateful for that, and I cling to any positive outcomes as I try to work through this depressed stage I’m in.

Posted in Uncategorized | Tagged brain fog, brain training, C-PAP, cure for Parkinson's Disease, depression, elimination difficulties, Gastroenterologist, Parkinson's, PatientsLikeMe, PWP, stem cell research, symptoms, tremors | 8 Replies

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