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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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I’m Using a NEW Search Box

Day by Day with a Movement Disorder Posted on October 30, 2010 by DBMay 17, 2016 3

I’ve been very unsatisfied with Blogger’s Search Box for a long time, but hadn’t found anything free that worked any better. I can say with relief that I think I’ve found something that will help you find what you want to read about.

You can now search for Parkinson’s and actually find all my posts concerning this important part of our site, rather than just the more recent ones. You might also be interested in our posts about diabetes, improving our diet and losing weight, exercising, digestive and elimination difficulties, brain fog, or Essential Myoclonus, the Movement Disorder I am currently being treated for. You will find posts dealing with our family’s roles as caregivers, too. Along the way there are all kinds of posts dealing with achieving the best Quality of Life, which is very important to me, and my strong belief that God will see us through whatever we have to face in this life.

In case you have a site that could use a better search box, I’m using http://www.freefind.com/.

Posted in Uncategorized | Tagged brain fog, diabetes, diet, elimination difficulties, Essential Myoclonus, exercise, Parkinson's, Quality of Life, Search Engines | 3 Replies

I’m OFF the Carafate!!

Day by Day with a Movement Disorder Posted on January 15, 2010 by DBMay 19, 2016  

Everything seems to be doing OK now that I have finished three rounds of the Carafate. This has to be taken an hour before eating and at bedtime, and it coats the stomach lining where the infection, ulcer, irritation is, so that it can heal. It doesn’t taste great, but mostly I’m glad to be off of it, because it meant remembering to take it and to be sure my stomach was empty before taking it. Adhering to the empty stomach rule put a serious dent in my herbal tea intake. But now I can get back in the habit of drinking about 8 cups a day. We’ve decided to cut the amount of Stevia I put in each cup in half, both as a precaution that I might have been getting too much of it each day, plus it will save money. Nothing wrong with that, and it has such a sweet taste that half a packet will do, anyway.

We decided to wait a week after going off the Carafate before starting to add back in the vitamins and supplements I have been taking for the last few years, so I’m not taking as many pills right now as I’m used to. That way, if I have any digestive problems adjusting to the pills again, we’ll know the problem is from the pills, not that my stomach wasn’t healed yet. It’s kind of nice taking so much less medicine for awhile. I am still on the MiraLax and the metamucil, and I’ve started eating prunes for my afternoon snack again. I can’t afford to let myself get constipated, as it really throws my whole system off when I do.

We’ve had a long record breaking cold spell here in Alabama, so I haven’t been out of the house much of late. Today’s our Date Day, but there are only a couple of brave souls trying to have yard sales and such, so I’m not sure what we’ll do today. Our weather is getting back to normal temperature range, so it will be good just to get out of the house for awhile, no matter what we end up doing.

I’ve even worked on a little bit of our taxes already, so I really do feel like I’m keeping my resolution to be more efficient with my time usage. It’s so easy to while away the days when you’re retired, if you’re not careful. And now that I’m feeling better, I get a lot more done. When I don’t feel well, my brain just goes into slow motion.

I did have one very upsetting thing happen this last week. Out of nowhere, someone I went to high school with called me. Sadly, I didn’t remember him at all. He had located me from the WHOIS information about our website. It was a very pleasant conversation, but he kept asking me if I remembered so and so, and it’s all a huge blank. I can only remember a few people I went to school with, and that’s mostly boys I dated LOL. I guess they made a bigger impression on me, eh? But I was very upset by the time the conversation was over. I had to tell him that I was having some memory problems to get him to stop bringing up name after name that drew a complete blank for me. It was extremely embarrassing and frustrating.

So I get reminded at such times that all is not right with my brain. Between age related forgetfulness, drug related brain fog, and just plain old neurological brain fog, I am pretty much a complete blank on my past. It’s scary when I allow myself to realize that, but mostly I just live for now.

On a happier note, I continue to lose weight slowly, and I’m doing much better with my exercising. I’m up to 3 minutes twice a day on the treadmill, and I’ve recently started back on the recumbent bike for about 5 minutes twice a day. The treadmill is on an incline and not adjustable (translation = cheap), so by the time I’ve been on it 3 minutes my heart is really pounding. That should improve with time, though, and it’s good for my heart, anyway.

All in all I’m feeling very good, and hope to keep it that way, with the daily blessings God brings my way. I’m blessed to have a wonderful family who love me and I love deeply, and we all live in the same state. That’s better than most people my age can say!

Posted in Quality of Life | Tagged brain fog, elimination difficulties, exercise, stomach | Leave a reply

Align = Feeling Better

Day by Day with a Movement Disorder Posted on November 14, 2009 by DBMay 21, 2016  

Well, the Align probiotic that my Gastro’s nurse told me to use has definitely helped my stomach. I’ve not been nauseated this morning for the first time in almost two weeks, and it feels great. I’ll continue to be more careful than usual with what I eat for another day or so, just to be on the safe side, and I’m going to finish out the month’s worth of the Align. Then I’ll go back to using the generic Acidophilus I’ve been taking daily for the last couple of years.

I did go back to using the Triavil, which is used to treat IBS, for the full 3 doses. My Gastro had just recently suggested that I cut back to 2 doses a day, and to see if I still did OK. I had cut back a few days, but then all this stomach upset hit, and it just didn’t seem like a good time to be changing things. So I’m not sure when I’ll try cutting out a dose just yet.

I did lose another pound this week, which isn’t too surprising, since I haven’t felt like eating a whole lot. I was actually hungry last night by supper time, and that’s another good sign that things are returning to normal. I haven’t felt like exercising, and really didn’t think it was a good idea while I felt so bad, so now I need to slowly work my way back into that routine.

The mouth tics subsided a couple of days ago, but I’ve been waiting to be sure they were under control again before jinxing it by saying anything about it. I’m not sure if the strong antibiotics neutralized the Primidone, or if it was just because I felt so bad. Maybe it was because everything, including medicine, was going through my digestive tract at high speed for a change. Who knows…

The important thing is that I can tell I am finally getting over it, and that’s a wonderful relief. Particularly since Thanksgiving is getting so close, I’m glad I can look forward to being able to eat with the family. I had already decided that I would ignore my glucose readings for that day and just enjoy being with everyone and enjoy the food. Then I’ll go back to the 1200 calorie diet I’ve been on since April and continue to limit my carbohydrate intake. I’ve been giving myself a splurge meal about once a month, anyway, so this month it’s for Thanksgiving.

In a effort to prevent another UTI, which started this whole snowball effect of digestive problems and Myoclonus tics, I’m trying to consciously be sure I have completely emptied my bladder each time I urinate. When I became so conscious of it, because it was painful, I realized that I haven’t been emptying totally, probably for some time. The nerves that send such messages just don’t work as well as they did when I was younger, or before the neurological disorder reared its ugly head. And, from what I’ve read, diabetics are more prone to this problem, too.

So, it’s a good day today, and I can look forward to many more, as long as I continue to persevere with a good healthy diet and exercise program and take my meds religiously.

Posted in Medicines and Supplements | Tagged Align, diet, elimination difficulties, Essential Myoclonus, exercise, Gastroenterologist, IBS, probiotics, tics, Triavil | Leave a reply

It’s Finger … Finger Prinkin’ Time

Day by Day with a Movement Disorder Posted on May 9, 2009 by DBMay 21, 2016  

I’m pretty much in the finger prinkin’ routine now of checking glucose levels, and there have only been a few times lately when the result was outside of my target levels. I had a really stressful day yesterday, but my test results right in the midst of the chaos were good, and I’m pleased with that for sure. You see, not only eating carbohydrates will raise blood glucose levels, but also eating until you’re stuffed, even when it’s healthy foods, and also stress, can make the glucose levels high.

I’m doing a pretty good job of sticking to a fairly low calorie diet. I’m aiming for 1200 calories a day, and I’m close most days. The Metformin, or Glucophage as the brand name is known, is supposed to suppress appetite a little, so that is helping. Another side effect that about half the people on it get is diarrhea. For me, that’s a welcome change from the constipation I normally fight. For now, anyway, I’m getting a nice balance, with little problem eliminating.

I went to the Podiatrist Monday morning and had a toenail removed from one foot and a corn I didn’t even know I had removed from the top of the big toe on the other foot. My toenails are so badly deformed with fungus that I hadn’t even noticed it, but I sure knew when he cut it out!! The toenail had to be taken off, because I had stubbed my toe back a couple of months ago, and it never healed. Turns out, there was an abscess under the nail. With reduced feeling in my feet from the Diabetes, and the possibility of future problems if I’m not careful, I guess I’ve added my Podiatrist to the list of doctors I’ll be seeing on a regular basis.

It’s really gotten comical. This year already I have seen my Neurologist, General Practitioner – several times, Dermatologist, Gynecologist, Podiatrist, Diabetic Specialist, Dentist, had a chest X-ray and Blood Glucose Tolerance Test, and I’m going for Physical Therapy about once a month!!! The only one I haven’t seen is my Gastroenterologist. And hubby?? … the Dentist. Not that he doesn’t need to go, but we’ve been so busy going back and forth to my appointments that I’ve gotten nowhere with trying to get him to make one for a good annual checkup.

I’m still reading everything I can about what I can do to eat properly and hopefully diet my way out of needing the Metformin. My Diabetic Specialist thinks I can go off the medicine if I lose the weight. And now that I’m not ravenously hungry all the time I feel confident that I will get back down to a good weight. I need to lose a total of 50 pounds, and that’s going to take awhile. I’m trying to change habits, rather than going on some weird diet. The only “diet” I have ever tried was Atkins, and I did lose weight on it. But when the cravings and weak feelings hit I gained it all back and then some.

We continue to do well with our plush sales, and that keeps me busy when I’m home, as does the Lost Toys Search Service we run. People thank us for helping them, but it does us good, too, knowing that someone has been touched by us when they needed help.

All in all it’s been a good week, and with no doctor appointments on the calendar for next week, I look forward to a good week next week.

Posted in Type II Diabetes | Tagged appointments, blood glucose, diabetes, diet, elimination difficulties, nutrition, Podiatrist, stress, weight loss | Leave a reply

It’s Official – I have Type II Diabetes

Day by Day with a Movement Disorder Posted on April 28, 2009 by DBMay 21, 2016 4

I had the appointment with my GP today and asked a ton of questions about where I stand with Diabetes. I asked him point blank if I had pre-diabetes or actual Diabetes, and he said I have Type II Diabetes. I hastened to assure him that that did not upset me, that I just wanted to know, so I could read more intelligently about topics related to Diabetes. This diagnosis is a walk in the park compared to being told I had Parkinson’s, so it doesn’t upset me at all.

He stressed the importance of following a good Diabetic diet, and we explained that we have been eating very healthy diets ever since dear hubby was operated on for colon cancer. Add that to the fact that we both have Alzheimer’s in our family history (mother and grandfather for me), and that I have a Neurological disorder, so we have been consciously eating as many Super Foods as possible for several years now.

The biggest difference for me now is that I must exercise portion control (I have lost some weight already!), and I can’t have chocolate. Of course, he said I could have a little, but he laughed when I explained that I don’t know how to eat just a little chocolate. For me it’s going to have to be all or nothing. Other sweets I’ll be able to take in small amounts probably, but not chocolate!!

He tested the bottom of my feet for feeling, and I am definitely not feeling as well on the bottoms of my feet as I do in my palms. My A1C test came back as 5.5%, which is very, very good! That means I’ve done a good job of keeping my blood glucose under control, and it hasn’t been spiking for very long. They sent off a urine sample to check for albumin levels, which is a measure of kidney health. He has now run every test I know of that is recommended for diabetics.

He looked over my Blood Glucose testing results for this month and was pleased with the numbers. So he suggested that I could test before breakfast and 2 hours after Lunch and Supper every 3 days, unless I was feeling weird. That means a whole lot less finger pricks, and a bottle of test strips will last a lot longer. Those things are VERY expensive!!

I also asked his reasoning for putting me on Glipizide instead of Metformin. He said he chose Glipizide, because he was afraid of the gastrointestinal side effects of Metformin. But I would welcome a medicine that tended me toward diarrhea! I could stop some of my other meds if I did get help in that direction from the Metformin. So he gave me a prescription for it to try, taking only one pill with supper until I see how I do on it.

Since I have an appointment this Thursday with the Diabetes specialist, I’m not going to change anything until I get his view of things, but I was very pleased with the time that my GP took to examine me and answer all my questions. My GP is faxing all the information about my tests, etc., to this specialist, so that will make the appointment even more helpful.

I feel very good about the information I received today. I understand the diagnosis, and I know what I have to do to stay healthy. I am confident that I will be a good patient and will take care of myself, now that I know what needs to be done.

Posted in Type II Diabetes | Tagged A1C Test, diabetes, diagnosis, diet, elimination difficulties, nutrition, Quality of Life | 4 Replies

Looking Forward to a Busy Week This Week

Day by Day with a Movement Disorder Posted on April 26, 2009 by DBMay 21, 2016  

I feel really good today, and that’s something to celebrate! I didn’t even have to fight to stay awake in church today, the way I have for some time now. I think my body is adjusting to the steady level of glucose in my system, or at least a lot more steady than it used to be.

I continue to read everything I can find about ways to improve my diet and keep my blood glucose level in a healthy range.

Not that every day has been as good as today has been. We had our usual Date Day Friday, and the weather was gorgeous. That made for some pleasant yard sale shopping, but it meant we were stopping at a lot more sale signs than we have since last spring. Somewhere around lunch time I just ran out of energy. I ate what I thought was a reasonable lunch, but had the highest glucose reading I have measured so far several hours later. And to add to the general fatigue and yucky feeling from too much glucose in my system, my hands and feet were noticeably swollen. By the time we got home I was really very uncomfortable, and did very little Friday night or yesterday, either. Thank goodness that rough patch is over for now.

I’m looking forward this week to seeing my doctor to ask him about my test results from the Glucose Tolerance Test, go over my log of a month’s worth of glucose readings with him, and get an A1C test done. Oh, and I should tell you that I’ve been pleasantly surprised that all the finger sticks (for right now I’m testing before and 2 hours after every meal) aren’t nearly as bad as I thought they would be.

Here’s my understanding of how the A1C test I will have this week works. Every time a person’s glucose goes too high, the red blood cells are changed, as they react with the excess “sugar”. Once the glucose level comes back down, those changed blood cells do NOT change back to normal. So, for the life of that red blood cell, there is a chemical marker that the A1C test can read. If I have had lots of episodes of high glucose over the last few months then lots of my red blood cells will have this chemical marker in them. This test is almost like a diary of the last two or three months worth of sugar levels. It’s the last step in the diagnosis process to decide whether or not I have pre-diabetes or actual Type II Diabetes, as I understand it.

Then, later on this week I have my first appointment with an Internist who specializes in Hypertension and other Diabetes related problems, particularly Kidney problems. Don’t get me wrong. I am not having any trouble with my kidneys now, and I want to keep it that way! He comes highly recommended by my Gastroenterologist, which means he will be someone who can coordinate with my Gastro about my diabetic diet and my digestive problems and elimination difficulties.

I feel like this is going to be a very important week for me, and I am anxious for it to get going! I would appreciate your prayers!!!

Posted in Quality of Life | Tagged A1C Test, blood glucose, diabetes, diagnosis, diet, elimination difficulties, exhaustion, nutrition | Leave a reply

I’ve Been Trying, Honest!!

Day by Day with a Movement Disorder Posted on March 18, 2009 by DBMay 24, 2016  

Yes, I’ve been trying very hard to stick to the exercise routine the PT set out for me, and I’ve done it in the mornings almost every day. But I’ve been nowhere near as good at getting the afternoon set done. I don’t quite know how to describe the weak feeling I get some days. Sometimes I wake up feeling that way, and on other days it progresses as the day goes on. Whatever is causing it leaves me just limp as a rag.

I’ve been wondering if maybe the stomach ulcers are acting up again, as I always feel hungry when I’m weak like that, even though I may have just finished a meal. The only other thing I can think of, other than the probable Primidone side effects, is that I’m having some kind of heart trouble. I do know even the least amount of exertion leaves me breathing hard. Well, to be completely honest with myself, it’s likely because I’m about 50 pounds over weight. Somewhere in the mix of all those possibilities is the answer.

I’ve gone back to eating something with each medicine dose, which should help with the ulcer and hunger possibilities, but I am trying to eat fruit, instead of bagels. I had thought a bite or two of a bagel would protect my stomach from the meds, but by the end of the day I’m adding over 300 calories in just one bagel. So we’ll see how half an apple does for awhile. It should help with the constipation, anyway, as apples are high in fiber.

I’m in good shape keeping up with the new requests for help on our Lost Toys Search Service, but I’m way behind on getting lovey duplicates we have already listed put in the correct storage box. I can hardly move in one bedroom, thanks to all the plush toys in there.

I still have bouts of really bad brain fog at night when I get really tired. I start each day with so much hope, but seem to end many days exhausted, even though I have done little physically.

We do get wonderful reunion stories from people we have helped, and that always lifts my spirits. And Spring is here in full force now in Alabama, even though we had a significant snow fall just a few weeks ago. Hopefully the pretty weather will help to get me more energized.

Posted in Symptoms | Tagged brain fog, elimination difficulties, exercise, exhaustion, Physical Therapy | Leave a reply

Went to my Neurologist yesterday

Day by Day with a Movement Disorder Posted on February 18, 2009 by DBMay 24, 2016  

I saw my Neurologist for my 6 month checkup yesterday and got a few questions answered. I was right that my brain fog is coming from the Primidone, and not from the EM itself. He was also quick to agree with me that the Neurontin had caused the terrible nightmares and grogginess that led me to go back on the Primidone. He said there’s really nothing better that I could take that might not constipate me so badly, and was surprised to see all that I take each day just to keep my digestive system working properly.

I described some specific problems I am having defecating, and he said I am experiencing Dystonia.

We told him how exhausted I get by early evening, and I asked for a prescription for some Physical Therapy, which he quickly gave, so that I could be monitored while I try to increase my exercise level. I may not have a doctor watching me all the time the way they do on the Biggest Loser, but at least I won’t be so scared that I am doing myself harm and will be more likely to push myself a little harder. I have an appointment next week for an evaluation and expect to go several times and then wait several weeks and check in. I’d like to do that all this year if my insurance will allow it.

I did forget to ask him about the dry skin situation I deal with year round, and there’s something else I meant to ask him about, but now I can’t even think of it! LOL!! It will pop into my head when it’s good and ready.

We went out to eat afterward, but it started sleeting just as we got to the restaurant, so we came straight home after we ate.

I’ve gotten behind posting requests for help on the Search Service, since we went to see our younger daughter and her family this weekend. I enjoy seeing them all, and really miss having both our daughters close to us, but trying to sleep anywhere but in a recliner is a real problem for me. It’s taken me the last few days to get my back and neck settled down again. I cut back on my exercises the last few days, since I was waking up with so much back spasm going on. But I did 2 sets of 10 of everything today and used the mini trampoline yesterday and today. Two steps forward and one step back seems to be the norm these days.

So today I have been trying to catch back up with the posts on the Search Service, but it will take awhile to get caught up. I don’t know about other retired people, but I seem to stay busy all day long. I’m not complaining, mind you, as I would be bored out of my skull with nothing to do.

I continue to add to my house cleaning routine, and some parts of the house are actually staying straight most of the time now. Well, notice I said “some”! Certain places seem to be the dumping ground for things I straighten up from other rooms, but don’t know what to do with yet. So some parts are getting consistently cleaner, and others are getting progressively worse. Rome wasn’t built in a day, right?? It took years to make this mess, and it’s going to take time to correct it all.

I’m feeling good about the progress I am making on several fronts, and looking forward to seeing the Physical Therapist next week. Now let me get back to posting!

Posted in Quality of Life | Tagged Dystonia, elimination difficulties, exercise, exhaustion, house cleaning, Neurologist, Neurontin, Physical Therapy, Primidone | Leave a reply

Still on Acai, but Cheaper!!!

Day by Day with a Movement Disorder Posted on February 8, 2009 by DBMay 24, 2016  

I’ve returned the unused portion of the mail order Acai. Now it remains to be seen if they do as they said and have really closed my account. They were very pleasant and easy to deal with on the phone, so only time will tell if the horror stories I read about on the internet were just that – stories.

I decided to stay on the Acai if I could find it locally for a reasonable price. Walmart had it, although they are out right now. We’ve tried two different stores, but no luck. GNC has a capsule that is a mixture of Acai and Green Tea. Since I drink so many herbal teas each day, I’d rather stick to a pure Acai capsule or gelcap if I can.

My exercise routine is coming along pretty well, except I’ve had to stop using the bicycle. I thought I was being careful to limit my use, but even at 5 minutes in two separated sessions my coccyx is still complaining. I’m sitting on the Roho cushion now, trying to get my tail bone calmed down again. But I can use the trampoline for up to 15 minutes at a time now, and I’ve added lunges and a complete set of arm exercises to my morning routine. I even did my squats with a 3 1/2 pound set this morning.

You’d think as long as I have been exercising now (in my fourth month straight) that my walking would be easier. I can tell the difference a little climbing stairs, but my walking still seems so stiff and unnatural.

Nothing I am doing stops the brain fog, though. It’s usually less noticeable in the mornings, but evenings find me struggling to follow any conversation. I’ve reached the point where I can enjoy reruns on TV, because I can’t remember having seen them before. LOL! At least I’m easy to entertain!!!

I continue to be upbeat and pleased that I have been able to keep the exercise routine going so long. My digestive system has settled down again, so I am not having any elimination difficulties right now. Hopefully I will soon reach a level that helps me to lose some weight.

We are still getting quite a few sales from our Plush Animals Catalog, although certainly not at the rate it was before Christmas, and I continue to add more items to the catalog just about every week.

So, it’s been a good week, and I look forward to an even better week this week.

Posted in Medicines and Supplements | Tagged Acai, difficulty walking, elimination difficulties, exercise, exhaustion | Leave a reply

One Thing about a Movement Disorder – It Never Stays the Same

Day by Day with a Movement Disorder Posted on December 5, 2008 by DBMay 24, 2016 4

We had an absolutely wonderful Thanksgiving together as a family, but of course I was pretty tired afterward. So, as I had planned, I waited until Monday to change back to the Primidone. Not only was I jerking more with the Neurontin, but I had noticed a marked increase in really bad nightmares. To compensate for the lack of sleep at night I have started taking 30 minute naps during the day if I get sleepy.

Adding the extra dose of MiraLax around 5PM in a glass of prune juice is helping keep the constipation at bay at least for now, but the gas is still all but overwhelming. I’m also getting 3 or 4 prunes a day with lunch every day we eat at home.

The nightmares have not stopped, as I had hoped they would when I went off the Neurontin, but at least the jerking has subsided again. I’m going to have to work harder to get my mouth used to the TAP again, so I can get a decent night’s sleep.

I got up about 12:30PM this morning, jerked wide awake by a particularly scary dream, but did manage to go back to sleep about 2AM I guess. Now here I am awake again at 4:30. So I’ll be running on fumes today. At least, since it’s our Date Day I can sleep in the car on the long stretches. I could really tell that less sleep was taking its toll on me yesterday, as I felt old and tired all day.

You know what it is like to sit in a car and tap on the glass to talk to someone outside??? Well, that’s the way I feel these days. I feel like my young self is trapped inside this old decrepit body, tapping away trying to make myself heard. Not a very good simile, but it will have to do for now. My brain still feels like I’m a young woman, but my body seems to get older and older by the moment. All day yesterday just getting up off the sofa seemed to be enough to exhaust me. So I know I need to get better quality sleep, and more of it, too.

We’re in our Christmas rush time for selling our Plush Animals and Dolls, so that keeps me moving, whether I feel like it or not. Hubby tries to leave all the getting of items out of inventory up to me, as it forces me to move around more than I probably would otherwise. I get all the packing materials together, print out the packing slip, and weigh the package. Then I print out the postage.

But then he takes over, double checking that I have the right toy going to the right person and checking to be sure everything is as it should be. He seals the packages up and puts the postage on. I was making too many mistakes, and this seemed like the best way to keep me active both physically and mentally, and still not get so frustrated with every mistake I was making. It makes me so mad when I can’t find a toy in the box it should be in. We have had to refund money several times because I couldn’t find a toy that my records showed we should have in stock. Keeping track of all the “paperwork” gets to be overwhelming at times, but I know it is keeping my brain active.

I was very pleased with myself about one thing I accomplished this week. I have noticed that it is very hard for me to learn how to do something completely new these days. So I was very happy with myself when I successfully followed the directions to make some java script to use on our Shopping Cart page. Yeah Yeah… I know that’s geek talk, but it is important to me, because I have never done any writing of java scripts before. I learned how to do something totally out of my realm of expertise. I’m patting myself on the back for that!

I continue to do my morning exercises, including my own version of Tai Chi for the balance impaired, although I didn’t do any this morning. Just getting in and out of the car and walking around at the sales today will give me plenty of exercise for today. I will do my neck exercises, though, as usual. They don’t take long and I sure don’t want that frozen painful neck situation to come back if I can help it.

So, this week I have felt terribly old and decrepit, but also beaming with pride at my successful creation of some java script code. I’ve changed back to the Primidone and the jerks have settled back down, and at least for now I have the constipation under control.

All in all, I’d say it’s been a good week.

Posted in Quality of Life | Tagged elimination difficulties, exercise, exhaustion, insomnia, Neurontin, Primidone, Tai Chi, TAP | 4 Replies

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  • 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
  • Maria Mind Body Health
  • Treating Constipation without Destroying Your Gut

Products I Use

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

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
  • 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

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