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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: Go-Litely

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

Go-Litely AGAIN!!!

Day by Day with a Movement Disorder Posted on November 15, 2008 by DBMay 25, 2016  

I talked to the Gastro’s nurse again on Thursday, but his answer was not what I wanted to hear at all. I have to do the Go-Litely again! He seems to think that the large amount of gas I’m experiencing means I am still blocked. We had our Date Day as usual yesterday, but I am ready to start this mess all over again this morning.

I’m dreading it. If this doesn’t help this time I’m calling my Neurologist to see if there is any other Myoclonus medicine he could try me on. If not, it looks like I will be buying stock in some prune juice company! I’m already eating prunes almost every day, plus the complete Bowel Retraining routine as laid out by my Gastro.

As for Date Day, we enjoyed each other’s company, as usual, but the sales were basically duds. All this talk of hard times led us to think that we would see some “good stuff” being sold, but that was not the case yesterday. Oh well, we still bought enough to pay for our meals and maybe even our gas for the day. And it continues to be a lot of fun that we both look forward to.

I’m approaching 1,000 items listed in our online catalog of plush animals and dolls, so that is keeping me busy for sure. My goal had been to reach that milestone by the end of the year, but I think I may well exceed it.

My short bursts of energy to get housework done are getting longer, with less fatigue, so I must be improving my overall strength conditioning somewhat. I hope to continue to increase my activity level and get back to a regular exercise schedule. I’ve been doing my neck exercises faithfully now for some time, and it has helped. Now it’s time to add the Tai Chi back in on a daily basis. So much of this just takes will power, something I seem to be low on these days.

Speaking of will power … I’m having trouble saying no to sweets and chocolate in particular. And my weight shows it. Also, I’m keeping a nagging feeling of hunger – and I know that means the stomach ulcer is acting up again. For some reason I have always had a sensation of hunger when my stomach is hurting, rather than one of pain. There is a dull pain sensation when I press on my stomach.

All this digestive mess has turned into a bigger problem for me than I could ever imagined. I always thought you just took a laxative and that was the end of that problem, but it’s just not that simple when the medicine I am on is working against me in that respect.

It’s time to stop writing, as I am getting back into pity party mode here, and I don’t like that. I try to stay on a positive viewpoint, but anticipating this stuff today has me pretty low.

Oh well, this too shall pass. Sorry, couldn’t resist.

Posted in Medicines and Supplements | Tagged Bowel Retraining, elimination difficulties, exercise, Friday Date Day, Gastroenterologist, Go-Litely, Primidone, Quality of Life, stomach | Leave a reply

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