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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!

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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

I Should Know Better – Back on Bowel Retraining Routine

Day by Day with a Movement Disorder Posted on July 30, 2008 by DBMay 30, 2016  

CAUTION: I try to be as specific with symptoms, problems, etc., as I can, so that what I write might help someone else in a similar situation. Feel free to skip this post if you’re not up to a frank discussion of bodily functions.

There’s nothing that aggravates me more than to go to my wonderful Gastrologist again with nausea and abdominal pain, only to be told to do the same thing he has had me do before. Each time I go through one of these strange “I don’t think I’m constipated” episodes, I think that it can’t possibly be the same thing I had before.

I have to use Miralax each morning, eat a high fiber breakfast cereal, drink lots of fluids, take 4 Bentyl tablets, a chewable Acidophilus tablet, and 3 Metamucil capsules every day. I’ve been on that regimen now for a long time. Until I started on the Primidone I was not having any problems with my bowels. But as soon as I started taking the Primidone, which has done wonders for my jerking and twitching, I noticed that I was heading for trouble with my elimination.

So, I increased my fiber intake, thinking that was going to be enough. And it looked like I was correct, up until the last few weeks. Then I started having a yucky taste in my mouth most of the day. I had a tickling kind of cough if I swallowed anything the least bit spicy or scratchy, and it was not going down the wrong way. I was almost constantly clearing my throat, and by the end of the day my throat was sore.

I was still having my usual 4 or 5 bowel movements a day, just as I have had ever since I went on all this elimination routine. I have problems with the muscles needed for defecation, so I have to stay just shy of diarrhea to be comfortable. I was still having times when I almost didn’t make it to the bathroom, so everything seemed as it should be as far as elimination was concerned.

So, after a miserable weekend, I decided it was time to see my Gastro, and they are so good about working me in. We saw him yesterday, and he says that I AM constipated, despite my objections to his conclusion. I am to call him Friday after being on the full Bowel Retraining routine, which I started last night.

So now, added to the list of procedures that I was already following, I took 4 TBS Milk of Magnesia this morning, plus used 2 Glycerin suppositories. I am to continue using the suppositories daily, and the Milk of Magnesia every 3 days if I still have symptoms. He also told me to go back to eating my normal diet, instead of the baked potatoes and chicken soup that I have eaten almost exclusively since Friday.

So, you know where I have been most of this day. I’m still clearing my throat constantly, and my throat is irritated, but I am not nauseated like I was yesterday morning. I’ll be eating our usual lunch today, and hopefully it will not cause the coughing or nausea to worsen.

Will I ever learn?????

Posted in Symptoms | Tagged Bentyl, bloating, Bowel Retraining, elimination difficulties, gas, Gastroenterologist, GERD, glycerin suppositories, Metamucil, Miralax, nausea, pain, Quality of Life, stomach, swallowing, symptoms | Leave a reply

Tummy’s Back to Normal – PT Continues

Day by Day with a Movement Disorder Posted on January 16, 2008 by DBJanuary 16, 2008 6

It took a couple of days of very careful, limited eating, to get my tummy back to a normal situation, but I’m much better now. I’ve gone back to using the glycerin suppositories, and that’s helping the most, other than to avoid some questionable foods.

I talked to my PT Monday, and told her my neck was much better, and that I was surprised they had not had me doing any exercises. She said they wanted to get my muscles calmed down first. So, she is going to add some tomorrow. I told her I wanted to be stingy with my visits, in case I needed to come for something else later on in the year, so she has me on Monday and Thursday now, instead of 3 days a week. Of course, that frees up our Date Day, and that suits me just fine.

I’ve been extremely busy trying to help all the families who have been asking for help find lost lovies, ever since the msnbc.com article came out about our Plush Memories Lost Toy Search Service. We had well over a thousand hits that first day, and our traffic is still about double what it was before the article.

I’m fighting the poison ivy again, and I’m not sure which one of us is winning right now. I have found that I can take one Benadryl at night, and that stops the itching until in the afternoon. Then I take a non drowsy type that the pharmacist said I could use. It doesn’t work all that well, and by early evening I’m in misery. It gets in my blood stream or something, because I end up with rash and blisters in places that it should not be. Very delicate skin itches ten times more than arm or leg skin, I guarantee it!!!

I see the Dermatologist in another couple of weeks, so I will certainly ask him about anything I can do to dry it up quickly.

I think I know where the poison ivy is coming from. We’ve been bringing our outside cats in at night when the weather is below freezing. I am pretty sure I’m catching it from them. We had the brother and sister kitties neutered last week, and the little girl is somewhat frail, so we did not want to take any chances with the cold. The only other possibility is that the wood chips I’m using for the compost have the vines ground up in with it. Our back yard is just full of poison ivy, so that’s certainly possible.

I’m continuing to limit my reading of anything Parkinson’s related, but nothing has changed as far as my foot tremors and facial tics go. Oh, and I still haven’t started back using the TAP. I decided to get my neck calmed down, plus see if the mouth tic was related to maybe my tongue moving around on the inside of the mouthpiece in my sleep, and it getting to be a habit. Well, the neck is calming down nicely, but the mouth tic is still there. So I think I can stop blaming the TAP for that.

Since I’ve been taking the Benadryl at night, I’m sleeping quite well, even without the TAP. Funny, the Benadryl is working much better than all the fancy sleep meds ever did, and I’ve tried almost every prescription they make at one time or another.

Posted in Uncategorized | Tagged cats, elimination difficulties, glycerin suppositories, muscle spasms, nutrition, pain, Parkinson's, pharmacist, Physical Therapy, Quality of Life, stomach, symptoms, TAP, tics, tremors | 6 Replies

No Surgery After All!! WHEW!!

Day by Day with a Movement Disorder Posted on August 15, 2007 by DBAugust 15, 2007 9

I made the rounds of my doctors again yesterday, and the specialist my Gastroenterologist sent me to does not believe that my situation warrants surgery at this time. He would rather I continue to use all of Dr. B’s arsenal of Bowel Retraining routines – glycerin suppositories daily, Milk of Magnesia every couple of days, bran cereal and prune juice daily, Miralax, and Amitiza. He also went over the list of what I can’t eat again, and it seems to get longer each time I see him.

I’m not allowed to have

soft drinks of any kind
chocolate
nuts, particularly peanuts
any dairy products at all
cruciferous vegetables, such as broccoli or cabbage
beans
tomatoes
coffee
caffeine of any kind

And no telling what else that I can’t think of right now.

It’s hard to believe it takes all that to keep my system from bloating, but it does. Zelnorm was much better than Amitiza at producing a stronger muscle contraction through the digestive tract, but I’ll just have to make do with the Amitiza, and hope they find a way to modify the Zelnorm and get it back on the market.

There’s now an agreement among the doctors that my elimination problem is due by and large to the weakness of the digestive tract muscles, caused by the Parkinson’s, rather than the anatomical problem that was recently discovered.

I liked this new doctor. He explained things very well, and took a lot of time with me. He explained why he thought surgery would be unlikely to have much of a chance of improving things at this time, and he also gave me some idea of what to watch out for, in case the problem worsened. I will see him again in 6 months, assuming all goes well.

I saw Dr. B, my Gastroenterologist, too, and he wants me to use the full complement of Bowel Retraining strategies for a week. If I am still bloated and having problems with gas and elimination, he will do another colonoscopy. I had one a year ago, with no polyps or other problems, so he really doesn’t expect to find anything. But he knows I’m concerned, and the colonoscopy will ease my mind.

So, with no surgery in the near future, I can stop spending so much time on the computer, reading everything I could find about this problem. I really was beginning to obsess over it, but I learned a lot. I was extremely pleased that the surgeon pulled out his huge PDR and looked up the interaction between Zelepar and Demerol as soon as I mentioned I had read about it. He agreed that I could not have the Demerol if I had the surgery. I will DEFINITELY have to get something in my wallet TODAY to that effect. If I somehow ended up in an emergency room, needing immediate surgery, my own meds could possibly kill me!! So, doing the research was worth it, if only for learning that one piece of information.

Hopefully this is the last time for a long time that I need to discuss my bowel habits LOL!! I’m sure anyone taking the time to read my posts is tired of hearing about it, as I’m tired of having to deal with it, too.

Posted in Uncategorized | Tagged Amitiza, bloating, Bowel Retraining, Demerol, drug interaction, elimination difficulties, gas, Gastroenterologist, glycerin suppositories, Metamucil, Miralax, Quality of Life, Zelepar, Zelnorm | 9 Replies

Digestion Problems Worsen

Day by Day with a Movement Disorder Posted on July 26, 2007 by DBJuly 26, 2007 1

I have an appointment with my Gastroenterologist for this next week. Even though I have faithfully taken the Myralax each morning, take Metamucil every day, have been on the Bowel Retraining regimen, using the glycerin suppositories, and I’ve been really careful about what I was eating, I’m still having bowel problems. For lack of a better word for it, I would call it constipation, but it’s more like the colon and rectal muscles just are not working properly. Before I was diagnosed with PD last year, I had a four month bout with diarrhea that was very difficult to stop. The Gastro treated me with the same meds that would be used with colitis and Irritable Bowel Syndrome, so that may be what’s going on now. From what I’ve read, the IBS spasms can cause some really strange symptoms, which fit mine fairly accurately. I won’t gross you out with any details. Let’s just say things are not as they should be.

Other than that, I can report positive improvement with my right knee, which I had twisted again. We took off several days from the track, I have been staying on the computer more and reading more, and generally letting it rest. I did walk 1 quarter mile lap yesterday, and another today. Mostly I’ve been doing the exercises that the Physical Therapist outlined for me. I’m thinking I probably need to get some kind of knee brace to use in situations that might aggravate it, such as the clearing out I was doing of Daddy’s things that set this episode off.

So, I wait for the Gastro appointment, look forward to the Sleep Study next weekend, and baby my knee while it slowly heals. DH, as always, has been super considerate. He keeps me laughing over his foolishness and does so much for me. No one could ask for a more loving and caring helpmete.

Posted in Uncategorized | Tagged bloating, Bowel Retraining, colitis, elimination difficulties, gas, Gastroenterologist, glycerin suppositories, insomnia, knee, Metamucil, Miralax, Parkinson's, Physical Therapy, Sleep Study, stomach, symptoms | 1 Reply

Sleep Continues to Be Scarce

Day by Day with a Movement Disorder Posted on July 8, 2007 by DBJuly 8, 2007 4

The insomnia is continuing to bother me just about like it has been for several months now. I’m still having constipation problems, too. I’ve been on the Miralax continually now, but when I had to stop taking the Zelnorm, it began to gradually give me trouble again. I’ve been using the glycerin suppositories regularly now for the last week, but the problem isn’t resolved yet. I’m already on a Metamucil capsule every day, besides the Miralax, so I hate to add any more oral medicine for it, for fear it will suddenly work too well. The only other Parkinson’s thing that is going on with me right now is a very stiff neck. I have had like a crick in my neck now for several days, from a very tight muscle, that I just don’t seem to be able to stretch out or limber up. I’ll just have to keep exercising it, and hope for the best.

We had an absolutely glorious drizzly rain all day long yesterday, and I thank God for that. We need about a week of that kind of rain to make a dent in our drought situation, but it’s better than nothing. Our grass finally looks like grass again.

They are supposed to come finish the garage tomorrow, but it looks like it might be raining. That’s OK. We need the rain worse than we need the garage to be finished. We need to put another coat of water sealer down on the garage floor, anyway, before we start putting stuff in it.

Once we can use the garage for storage, we’ll start bringing the furniture that our DD does not want to keep from their house down here. Also, we have stuff in our basement that we can’t get to because it’s in such a mess. Once we have a place to store it elsewhere, we can start emptying the basement of things and get the good stuff out of our way temporarily. Then we’re going to have to make several trips to the dump!! We used to have a landfill dump here in our town, but it was moved to the other side of the county a long time ago.

That wouldn’t have been so bad, but our town garbage collection rules call for household garbage only. They won’t pick up anything that won’t fit in a garbage bag. So, over the years, as things broke, like the washing machine, it just got stuck in the basement. Now we can hardly move down there. Oh, and the nearest Thrift Store won’t pick up the appliances, either. There are certain disadvantages to living out in the boonies, that’s for sure.

DH won’t let me go down in the basement, as he’s afraid I will trip over something or lose my balance trying to walk around all the stuff. I really do think he’s being over protective, but I’ve done as he asked, and stayed out of it. I’m itching to get it cleaned out, though, and it bothers me that I can’t just go down there and work on it if I want to. As it is, I’m stuck with his idea of when it will get done, and his timetable is a lot slower than mine LOL!! C’est la vie. That’s what being married is all about – the give and take of blending two different people’s habits and problem solving techniques together. I just need to work on my patience a little more, that’s all.

Posted in Uncategorized | Tagged balance, Bowel Retraining, elimination difficulties, exercise, glycerin suppositories, house cleaning, insomnia, Metamucil, Miralax, Parkinson's, remodeling, Zelnorm | 4 Replies

Going Through a Depression Phase

Day by Day with a Movement Disorder Posted on July 2, 2007 by DBJuly 2, 2007 8

I have really tried to stay positive about all that’s been happening to me over the last year or so, but I’m not succeeding very well right now. When I went to my Neurologist last time we made a point of telling him that I was crying extremely easily over just about everything. He had a name for it, but it was a mile long, and I forgot what it was. Since he said he didn’t want to change any medicines until after I’ve had the sleep study, there didn’t seem to be any point in pursuing it, as long as we’ve told him about it.

We’ve been waiting to get the garage we’re having built finished. We waited an extra month for the siding and roofing to be special ordered to match the house. Neither one of them is a match – right color, but wrong shapes. And we’re stuck with them. That set me into quite a blue funk for the last few days, but I’m getting over that. It’s just a garage. Sometimes it’s hard to keep perspective about things like that.

We’re still dealing with estate business, so that doesn’t help with my state of mind right now, either.

I started back on the glycerin suppositories today, as I have gradually had more and more trouble with bowels again. Just as before, there’s nothing that would make me consider myself to be constipated, but my muscles just don’t push hard enough. They took the Zelnorm off the market that dealt with that problem for me before. So I’m planning on going back on the Bowel Retraining regimen.

So, with the insomnia continuing, the bowel situation flaring up again, and just generally too much going on, I’ve had better days.

Posted in Uncategorized | Tagged Bowel Retraining, depression, elimination difficulties, glycerin suppositories, insomnia, Quality of Life, settling an estate, Zelnorm | 8 Replies

We Have BOOTIES!!

Day by Day with a Movement Disorder Posted on February 5, 2007 by DBFebruary 5, 2007 6

Finally, a good two weeks or more after I first asked for them, the nurse brought the sheepskin looking booties today. If I had gotten them when I asked, his heel would not have looked so bad, and may not have even blistered at all. She also brought the seat cushion for his chair. His bottom is also getting worse, so this will help considerably.

We spent the whole morning trying to achieve a bowel movement. I’ve been giving Daddy 2 stool softeners with each meal, plus a Senna laxative tablet each night. He hadn’t been since last Wednesday, so this morning we went all out to get some results. Prune juice for breakfast, plus another laxative tablet. It’s quite an involved process to get him in the bathroom now, but DH helped me this morning. Daddy still couldn’t go. So, I used a suppository. We waited, but still nothing.

By the time we had him ready to move to his chair in the living room, everything decided to start working. So, we went through the routine to get him back in the bathroom, take care of that, and then put him on the bed, so I could get him really clean and put ointment back on his sores. Then, we got him back up and into his chair. By the time we did all that, the nurse came. His chair is a recliner, which he would not use before. But we had so much trouble keeping him comfortable in his chair or the wheelchair Saturday, that we thought it was worth a try. By propping his calves up with two pillows, we finally got his legs high enough for his heels to hang without touching anything. And he’s comfortable. He immediately fell asleep, bless his heart.

He’s not the only one who’s worn out! DH had to take over and sit with him while we were waiting for him to finish in the bathroom, because my stomach started churning and cramping. I not only had diarrhea, but I came very close to throwing up. I think it was just from my nerves, but this would never have happened before I had Parkinson’s. It makes me so very nervous to work with him, because I’m so slow at everything I do. I’m afraid he’s going to fall while I’m trying to get his pants down. In fact, I’m afraid he’s going to fall every time I do anything with him. Really, I’m just afraid, period. Even though I know exactly what I want to do, I have no confidence that I will be able to actually do it, anymore.

DH and I have eaten lunch, but we’ve left Daddy sleeping for now, as he’s exhausted. DH is asleep sitting on the sofa, and I’m blogging and resting. We’re all three worn out from the morning’s doings. LOL

This nurse says the other nurse will bring the air mattress when she comes later in the week, which should help his bottom a good bit.

I managed to control my temper while the nurse was here, as I didn’t see that anything useful would come from letting her know just how mad at her I was. My DH knew I was mad, but I don’t think she ever realized it. I hope not, as we have to work with her.

But if we have another situation develop like this one, I doubt if I will be so restrained.

Posted in Uncategorized | Tagged care giving, difficulty walking, elimination difficulties, exhaustion, glycerin suppositories, heel blister, Hospice, hospital bed, Parkinson's, pressure sore, Quality of Life, stress | 6 Replies

Miralax, Zelnorm, Glycerin Suppositories Update

Day by Day with a Movement Disorder Posted on January 31, 2007 by DBJanuary 31, 2007 6

I just thought I’d been bring you up to date on how the regimen the Gastroenterologist put me on for constipation is working. I’m currently taking the Zelnorm in the morning at least 30 minutes before breakfast, and again in the evening. I sprinkle 17g of the generic form of Miralax on my high fiber cereal each morning. (It comes with a marked dose cup.) I can’t even remember the last time I had to take the glycerin suppositories. The Bowel Retraining routine worked in about 10 days of using the suppositories at approximately the same time each day.

I’m no longer having problems in the bathroom, and have not had for some time now. I don’t want to “jinx” it, but it looks like that difficulty has been overcome, thanks to Dr. B.

Posted in Uncategorized | Tagged Bowel Retraining, elimination difficulties, Gastroenterologist, glycerin suppositories, stomach, swallowing | 6 Replies

Strange Things Are Hapnin’

Day by Day with a Movement Disorder Posted on January 24, 2007 by DBJanuary 24, 2007 2

I went to my Neurologist last Friday, and I explained to him all that had been going on the whole time I was trying out the Zelepar. He agreed that the medicine had not received a fair chance at working. So, he gave me a prescription for it, with instructions to use if for a month. If I was not pleased with the way it relieved my symptoms, I could then add the Requip I have taken before back to my schedule. Now that my digestive system is behaving, I told him I thought I could handle the Requip just fine.

Of course, being the little town that ours is, our Pharmacy didn’t have the Zelepar in stock. He has to order unusual medicines, but they come the next business day, and that works OK, most of the time. Of course this was Friday afternoon, when we dropped off the prescription, so I was without all weekend. I did the only thing I knew to do – I used the Requip I already had. My tummy didn’t complain a bit, either.

My throat is still irritated, and I finished the antibiotic today, so I’m thinking I’ll see if the nurse will swab my throat again, or just refill the prescription. I’m not convinced that the strep is gone, and I can’t afford a relapse. I had rheumatic fever as a baby, so my heart is particularly vulnerable to strep infections.

I’m feeling good about the medicines Dr. S. has me on for the Parkinson’s now, and I’m sure my GP will take care of my throat, so things are settling down for me.

It’s just as well, because Daddy continues to decline. His arm is much better, thanks to the arm band, but his mind, and his body in general, continue to go down hill. We’ve had some difficulty all along getting his bowels to move, as one might expect from a 101 year old. I was using the glycerin suppositories I had to help him go, plus he is on Colace as a stool softener. The last time I used the suppository, it didn’t help, which I thought was strange. So, I figured, since I use two of them, I’d use two on him. To my surprise, I discovered the first suppository still in place – not melted in the least! His body temp is so low that it didn’t dissolve!!

So, even though I had been trying to put it off, I felt I had to call the Hospice Nurse, and request help giving him an enema. The enema was an ordeal for him, but it helped. That was yesterday. Today, his strength is noticeably less, and his confusion is noticeably more. His mind and body just can’t cope with any kind of assault now, even if it’s for his own good. Going to the Orthopedist sent him downhill, and the enema just pushed him that much further.

I can only pray that I will do well on the Zelepar, or the Zelepar and Requip combination, as I think it’s clear that Daddy has taken a definite turn for the worse. In God’s good time, this will all work out. I just have to take one step at a time, and leave the end results to Him.

Posted in Uncategorized | Tagged care giving, confusion, elimination difficulties, glycerin suppositories, God, Hospice, Neurologist, Orthopedist, Parkinson's, prayer, Quality of Life, Requip, stomach, strep throat, tennis elbow, Zelepar | 2 Replies

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