↓
 
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 prescriptions 1 2 3 >>

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: prescriptions

Post navigation

← Older posts

Tizanidine plus Physical Therapy

Day by Day with a Movement Disorder Posted on June 23, 2016 by DBJune 23, 2016 2

My Neuro is trying me on Tizanidine (Zanaflex) for my muscle cramps. He also prescribed physical therapy to help me build up my leg and core muscles again. This med is a short life drug meant to temporarily relieve the spasticity of Multiple Sclerosis patients. So, like every other drug he has tried for me, this is another off label drug. There are no meds that are designed to treat Mitochondrial Myopathy. So he prescribes meds created for other diseases and disorders that involve muscle spasms or seizures.

Tizanidine

I’ve only had a few doses so far, but I can tell it takes about an hour to take effect and works for maybe 5 or 6 hours. Of course he has me on the lowest possible dose right now, with the prescription providing for three times a day if I need it. I’ve used it the last two nights to help me get to sleep. That’s when the cramps are the worst, because my mind is not occupied with anything else to distract me from the pain.

Physical Therapy

Yesterday was my first time to go to PT since I went last year after my cervical fusion surgery. It’s the first time I’ve had therapy for my legs in many years. And I’m the first client with Mitochondrial Myopathy this physical therapist has ever worked with. She found out very quickly just how weak I’ve gotten. I don’t think she was prepared for how easily I fatigue to the point of jerking and twitching. So she plans on alternating working on my core and leg strength to keep me from losing control of my muscles so quickly.

I have been trying to exercise here at the house more and more each day, but I am obviously still very weak. I’m much better than I was after trying to use Clonazepam. But I’m not self disciplined enough to make myself exercise as much as I need to. It’s just too easy to sit, since I don’t notice the cramps as much when I’m busy on the computer. So I am confident that having someone make me work harder than I want to is going to be good for me.

And I can only hope that the Tizanidine helps with the muscle spasms. Time will tell.

Posted in Exercise, Medicines and Supplements | Tagged difficulty walking, exercise, Mitochondrial Myopathy, muscle spasms, pain, prescriptions, tizanidine, weakness | 2 Replies

Removing the Mystery: Top 49 Blogs about Parkinson’s

Day by Day with a Movement Disorder Posted on February 24, 2011 by DBMay 17, 2016 4

We were notified today that our blog has been included in what appears to be a very good list of blogs and news sites about Parkinson’s and Movement Disorders, from not only the patient’s perspective, but also from caregivers and physicians.

A lot of these blogs and resources are already listed on my sidebar here, and I will be adding some more, I’m sure, as I have time to check them all out.

It feels good to be validated for what I’ve tried to accomplish here over the years – from when I was first diagnosed with Parkinson’s Disease, to the change in diagnosis to Essential Myoclonus, and then the addition of Type II Diabetes and being a care giver to the mix. During that time I’ve tried to write honestly about my emotional state and the problems I’ve had with side effects from the medications and my symptoms.

I want to say a sincere thank you to those of you who have encouraged me along the way with your comments and prayers.

Posted in Uncategorized | Tagged care giving, diabetes, Essential Myoclonus, Parkinson's, prescriptions, side effects, symptoms | 4 Replies

Still Improving

Day by Day with a Movement Disorder Posted on January 4, 2010 by DBMay 19, 2016  

Well, the Christmas and New Year’s holidays are over, and things are about to get back to “normal” around here. I made it through all the holiday foods without upsetting my stomach again, and I’ve finished the round of antibiotics. So I really can tell that I’m still improving.

I’ve stopped taking the Reglan and also the Nortriptyline for now. One of them was giving me horrible nightmares, and I haven’t gotten back to my usual sleep pattern yet. The Reglan is not to be taken long term anyway, as it can cause Dyskinesia, and I sure don’t want that! I plan to ask the doctor why he put me on the Nortiptyline, since it’s an anti-depressant. So many of these meds have off label uses, that I don’t want to just stop it completely without knowing why I was taking it.

I still am taking the Carafate an hour before meals and at bedtime, and I won’t go back to the supplements and vitamins I normally take until I stop that. It was just too hard trying to schedule all those extra pills and have my stomach empty for the Carafate.

I even managed to lose another pound during the holidays!! That surprised me, because I allowed myself to enjoy meals with family without concern for glucose readings or calories. I guess my stomach has shrunk, plus my eating habits have changed considerably since April 1, 2009, when I started dieting in earnest.

I am now trying to build back my exercise routine. I did Tai Chi yesterday morning for the first time in I can’t remember when, and I used the treadmill for 3 whole minutes. I know that doesn’t sound like much, but it’s an inexpensive manual one that only has the one incline setting, and walking on it for 2 minutes at a time has been all I could muster, until yesterday. I’m such a weakling! LOL

I never have been much for New Year’s Resolutions, but I guess mine needs to be to get back on a regular exercise routine and stick to it. I’ve lost enough weight now that I’m really in need of some toning up. I don’t know if this old body can recuperate from the baggy skin, but I need to try, at least. And I certainly do need to improve my stamina.

I didn’t do a very good job of testing my glucose levels regularly during the holidays. My results page has lots of empty spots in it. It seemed like every day I would either forget to take it, or we would be out of our normal routine, and I couldn’t take it at the right time. We went to see a lot of movies over the last couple of weeks, and I couldn’t take it then. The rest of the times were just negligence on my part.

My Diabetes doctor said I was doing fine and not to be so concerned about the high readings, and I think I’ve succeeded in not stressing over them to the point that now I’m not diligent any more. It’s always hard for me to find balance, and this is just another example. I’ll try to do better in January. I see him at the end of the month, and I guess he’ll do another A1C then. That will tell the tale, for sure, from my holiday laxness. I’m growing more and more confident that my weight loss will eventually get me out of the diabetic range. I know that’s my goal for April, 2010. I expect to have lost 50 pounds by then, and no longer be diabetic.

At my heaviest ever in March, ’09, I weighed 182, and I’m down to 142 now. So I’ve come a long way. I’m totally motivated to get the rest of the 12 pounds off that I set as my goal, and who knows, maybe I’ll lose a few more than that! I know I couldn’t have done it without keeping track of my calories and carb intake daily. There again, the test will be whether I can achieve a balance of right eating without having to count calories when I’m down to 130. I’ll have to watch the scales pretty carefully to keep from gaining it back!

Sounds like I do have some New Year’s Resolutions after all! And I’m sure I join lots of others who plan to eat more healthy foods, exercise, and lose weight this year. I look forward to twenty ten as being a good, healthy year for me!!!!!

Posted in Quality of Life | Tagged blood glucose, diabetes, diet, exercise, insomnia, low carbohydrates, off label, prescriptions, Quality of Life, stomach, Tai Chi | Leave a reply

Looking Forward to an Enjoyable Date Day Today

Day by Day with a Movement Disorder Posted on May 15, 2009 by DBMay 21, 2016 6

This should be an interesting Date Day today. We had a wreck last Friday coming home, when someone we knew hit us from the rear going at a high speed. Turns out he was high on prescription drugs. Anyway, the car is the worse for wear, but we are OK, with no ill effects. So today’s travels will be in our van, which is much harder for me to get in and out of … but nowhere near as difficult as it was to climb up and then get down from the wrecker cab. That was a hoot, as I have so little strength, but I made it. We’ll be going to one of those huge neighborhood sales this morning, one we went to last year when they had their big sale day. Should be fun!

I’ve started back exercising twice a day with the weights and stationary bike, but the improvement seems to be coming so slowly. I worked with the compost heap yesterday for the first time in several months. It’s been a shame to put so much good garbage in the trash can, but with the strep throat, horrible cough, and adjustment to 3 new meds all at once, plus having a toenail removed, I just haven’t been up to taking care of the yard. It just about did me in to work out there for about an hour, with several breaks to sit for a spell, so I don’t know how much longer I’ll be able to work on the compost.

We have some beautiful black soil from last year’s efforts, and it looks like a little bit of the centipede grass that I planted last year may have survived the winter. I am proud of the fact that we only have a partial white trash bag to put out for the garbage truck each week, too. We recycle so much of our household trash that we make a contest out of seeing how little we can send to the landfill each week.

I am continuing to lose weight, which I’m very pleased about. I fully expect to be able to stop taking the diabetic meds, and maybe even the high blood pressure and cholesterol meds, too. “All I have to do” is get my weight down to where it should be. I’ve lost about 8 pounds so far, and that’s the first time my weight has gone down in several years. Judging from the last time I lost weight, way back before I was even diagnosed with Parkinson’s, I hit a plateau about this same weight, so it’s up to me to keep on watching portion sizes and keep working at it.

I’m not on a particular diet, just counting calories and trying very hard to control the number of carbs I get at each meal. I’m using a free online program to keep track of my food intake and exercise routine, and that helps to motivate me. I also bought a book for diabetics giving nutritional information on a large number of franchise restaurant and fast food menus. That has helped me to make some wise decisions about what to eat when we eat out on Friday and Sunday. I was even able to have a very small amount of Cookies n Cream ice cream last Sunday, without elevating my blood sugar.

I am having one problem that I need to call the Diabetic Specialist about, and that’s a nagging tickle that sets off coughing spells. I remembered my mother having the same symptom, and someone at church, too, so I looked it up. And sure enough, ACE inhibitors can cause a cough. There are other kinds of high blood pressure meds he can prescribe, so hopefully it’s just a matter of changing from one to another. It’s a very insistent cough, usually leaving me frantically tearing open a throat lozenge wrapper to get it stopped. And the cough comes out of nowhere … even wakes me up from sleep … very strange. It’s definitely not the cough that GERD causes, as I’ve had that cough before. That comes from stomach acid irritating the throat, and I’m not having any trouble with that right now, as I take my GERD into account in planning meals.

So I plan to deal with the cough today and have a fun day, too. I’m pleased with my weight loss program, and hopefully I’ll continue to exercise regularly, with no interruptions. I see the Physical Therapist next week, and I want to be ready for him. Maybe he’ll even decide it’s time to up the intensity of my workout a bit, so I can regain my strength. This old lady ain’t ready to quit yet!!!

Posted in Quality of Life | Tagged coughing, exercise, Friday Date Day, GERD, prescriptions, recumbent bicycle, weight loss, yard work | 6 Replies

Didn’t Know that Dry Mouth is Something to be Concerned about

Day by Day with a Movement Disorder Posted on October 29, 2008 by DBMay 25, 2016 2

I had my normal cleaning appointment yesterday and was careful to give my Dentist the new diagnosis and meds I was on. I told him that I had read that it was particularly important that I tell him I was on Triavil. I had assumed incorrectly that the caution had to do with using gas for dental work. But my dentist says that is not the reason for needing to know about it. He said that any meds or conditions that caused a dry mouth left the teeth much more open to rapid decay. It seems that saliva does a lot toward keeping the mouth bacteria population under control.

He suggested a Fluoride mouth wash, but NOT one that had alcohol in it. And he said that may be too strong for some people, and that it could cause gum irritation. There were alternatives that he could offer, but not over the counter products. So I will try this first and see how I do.

I told him that I had stopped using the TAP device, since the change in diagnosis, and because I was leary of using it while my GERD was acting up so much. I could not chance gagging and choking on the reflux acid that would back up into my mouth.

It did seem to stop the mouth breathing for a long time, but I have not been sleeping as well just lately, so I was thinking about trying it again. He said I needed to use it at least once a month regardless, because teeth tend to move ever so slightly over time. If I didn’t wear it often enough it would reach the point that it did not fit any longer. And I certainly don’t want to spend that money again sometime in the future, when I could have prevented it.

So I’ve been up most of the night tonight, just the way I used to do. This has been gradually coming on for the last few weeks, but tonight was the worst it’s been in a very long time. I’m actually wearing the TAP right now. We decided it made more sense to wear it for awhile while I am awake, until my mouth gets used to it again. Right now if feels like I have some huge thing in my mouth, but I’m sure it will become much more comfortable, just the way it did last time, if I work at it.

I have been noticing an increase in the way my brain and emotions cannot handle any kind of time pressure, no matter how slight. And every time I try to fool with those stupid Digital Converter boxes and try to tape a program it really shows up big time. I was so frazzled last night trying to get it set up to tape a program that I don’t think I could have told you my name!! It’s a horrible feeling, and one that I prefer to attribute to the med side effects, rather than a true sign of dementia onset. It’s hard to get that thought completely out of my mind, though, after caring for my mother so long before she died with Alzheimer’s. As I have mentioned in some other posts, my family’s neurological history is not pretty.

I’m continuing to try to up my activity level a little bit each day, but I still can only work in short spurts. After that I need to do something sitting for awhile, which for me usually means working on the computer.

And I’ve gone back to doing the neck exercises each morning (I wasn’t supposed to stop), since I’ve been getting the tingling nerve signal again that means the degenerated cervical disk is pressing on a nerve. I don’t want to end up in the stiff and painful situation I was in earlier this year, so for now at least I’m being a good girl and following doctor’s orders. It’s just hard to make myself faithfully do them when I’m feeling good. Yes, that’s childish and foolish. Guilty on both counts. But I’ll try to be better about continuing them this time, even when it stops bothering me.

It takes at least 21 times to build or break a habit, but it’s worth the 21 days to have a better Quality of Life!! So, old habits have been revived, and hopefully continued. This will give me something positive to work on each day.

I intend to ENJOY this Holiday Season, and not just survive it, the way I have the last few years.

Posted in Quality of Life | Tagged dental appliance, dentist, GERD, insomnia, Physical Therapy, political ad, prescriptions, Quality of Life, side effects, Sleep Apnea, TAP | 2 Replies

Weaning Off Clonazepam = Thinking More Positively

Day by Day with a Movement Disorder Posted on May 21, 2008 by DBMay 21, 2008  

I’m down to a half tablet at night now, starting today. I will stay on that for three days, and then I will be through with it. I sense the depression passing somewhat, but certainly not all of it. I was depressed before they put me on it, just not as much.

I’ve been trying to work off as much of my tension and fears in the yard the last few days. I’ve spread the rich composted “dirt” and planted Centipede seed there. I don’t know if any of it will grow, but the weeds are sure enjoying the rich dirt. I can’t very well pull the weeds, as the grass is still germinating. The idea is to let the growing grass choke out the weeds on its own. Since that section of the yard is pretty much finished, I’ve moved to a small section of grass at the front of the house. I’m wetting it down at night and then working on digging all the grass weeds out of it the next day. The hoeing is very therapeutic. It’s kind of like a punching bag for me.

My biggest problem right now is that I can’t get out in the yard without setting off a poison ivy outbreak, no matter how hard I try to stay away from it and bathe as soon as I come in. I’ve been super itchy now for some time, because I don’t want to take any antihistamines on top of the Clonazepam.

I’ve been trying to read about Tardive Dyskinesia, which certainly seems to fit what I look like these days. I can’t even spell it right half the time, but Google very nicely suggests how to spell it for me. If that’s it, then I can add TD to my list of acronyms.

My mouth is definitely jerking and twisting more as the Clonazepam dosage is reduced in my system, but they have told me that there are other prescriptions they will try to reduce the tics and jerks, once I’m off this med. And I’ve started chewing sugarless gum a lot, too, as that keeps my mouth busy. I chewed so long last night I made my jaw hurt, but at least I didn’t have my mouth pulling to the side and twisting all around. I will definitely be using this trick in public, as I am extremely self conscious about the way my face looks now.

Our wonderful pharmacist has printed out all the prescriptions I have been on since he opened his store some years ago. I haven’t yet tried to track down where my records would be stored from the previous drugstore, but he suggested I try the CVS in a nearby town. We went without a drugstore at all for quite awhile there, as the previous pharmacist gave up his store to work for CVS. I haven’t called yet, because it is likely a waste of time. But I will call. I’ll just have to be in the mood to do it.

I’ve tried researching every medicine that I can remember ever being on, and a few are possible causes. But there’s nothing to be done, other than try to deal with the symptoms. Tardive means it’s a delayed reaction, so there is no med to “stop taking” to make the movements go away. Our family has always joked that an aspirin will put me to sleep, so I suppose it’s not surprising that I would be one who had a delayed side effect to some medicine I’ve taken in the past.

I haven’t been going to the Parkinson’s forum. I just don’t know what to say there any more. I guess I would still qualify for membership, since I’m dealing with a Movement Disorder of some kind, but I just don’t feel like I fit right now.

Hubby has been a big help, and isn’t mad at me any more about my reaction to the doctor’s news. He’s such a sweetie, and I know all this has been really hard on his emotions, too. I don’t know what I would do without him.

I ran across a copy of Michael J. Fox’s book, Lucky Man, at a yard sale not long ago, and I finished reading it last night. There were several things in it that made me feel better about myself. He talked about all the things he did to make his early tremors stop – how he tricked his brain – so he could hide it from the television and movie audience. That process of being able to temporarily stop a tremor with little mind and body tricks is one reason I thought I was suffering from a psychosomatic illness. I did not realize that at least some people with PD can consciously stop tremors momentarily. I have feared from the very beginning that being able to stop them for a brief while meant mine were not “real.”

So, as it stands now, I don’t have Peripheral Neuropathy, and there’s no way of knowing if I ever did or not. I’m inclined to think I did, but all the super nutritious foods we have been eating for the last two years, plus the Turmeric and all the vitamins and minerals I take, just healed the nerve pathways.

Parkinson’s is likely not the problem, although I have not ruled it out completely, as the doctor’s always hedge what they say about that. I do have a Movement Disorder of some kind, and I am getting past the point of blaming it on myself. That’s a good thing!!

Reading Fox’s book helped me, so I hope that reading this blog can help someone, too.

Posted in Uncategorized | Tagged antihistamine, Clonazepam, depression, emotional lability, exercise, Michael J. Fox, Movement Disorder, pharmacist, prescriptions, symptoms, Tardive Dyskinesia, tics | Leave a reply

I Have Been to THE Appointment

Day by Day with a Movement Disorder Posted on April 5, 2008 by DBApril 5, 2008 8

Well, we went Thursday to see Dr. Watts, the head of Neurology at the University of Alabama in Birmingham, who has a great reputation as a Movement Disorder Specialist.

We were both very impressed with how personable he is. One of the other doctors on his staff did all of the preliminary questioning and testing. He was very easy to be with, too. Most of the tests were ones I have been asked to do many times in the last couple of years. A few were different. They both had me make big smiles with my teeth showing several times, which is not something I remember being asked to do by anyone else, and Dr. Watts had me repeat a few of the tests the assistant had already done.

They also gave me the impression that my family history of neurological problems is an important clue – mother with Senile Parkinson’s or Alzheimer’s – uncle with ALS – aunt with depression, drug addiction, alcoholism – grandfather was senile, possibly Alzheimer’s? Until they asked lots of probing questions I had never connected my Grandfather’s behavior and my Aunt’s behavior as being pertinent. That’s why doctors ask things over and over, isn’t it.

Of course, they asked me a million questions about what my symptoms were like, and when and how they started, many questions asked several times. Some I could answer, and some I really couldn’t. He was very interested in knowing about anti-depression and tranquilizer drugs I have taken in the past. I have been on several for short periods of time because of the stress of caring for our parents and our daughters, but I couldn’t tell him much about which ones I have taken. I should be able to get that information from my Primary and from our Pharmacist, plus I rounded up a bunch of prescription bottles of them that I had kept – just in case.

Dr. Watts sat down right in front of me, looked me in the eye, smiled, and talked with me. I had no sense of him being in a hurry to move on to the next patient. That is so rare in doctors these days, and certainly not what I expected out of such a highly renowned specialist.

OK, so now to what happened. I put on quite a show of jerks, tremors, and facial tics the whole time, partly because I was so nervous about what they would find or not find. There is a big part of my mind that is just sure this has all been a psychological problem, but at least he never said that. At least not yet.

I gave a pint of blood in the lab (OK, so I’m exaggerating – but it was maybe 8 vials full), looking for some clue as to what is going on. He talked to me about the possibility of some kind of antibody/autoimmune problem where my own body is causing the problems. He also seemed to think it might be symptoms caused from one of the medicines I have taken in the past.

He has also ordered an MRI at UAB. He says their MRI equipment is different from others I have been in, in that it is more powerful and may see something that the others did not. Plus, it’s been 2 years since I had a brain MRI, and whatever is going on might show up now that hadn’t progressed enough to show back then. They will call me with that appointment, so I don’t know when that will be.

He talked with his assistant, Dr. D, about lots of things it might be, with all kinds of medical jargon. Dr. D was jotting down notes the whole time and seemed to be making a list of possible diagnoses as they discussed my symptoms. Every once in awhile Dr. Watts would ask me to do something or ask more questions. It was exactly like watching a real live “HOUSE” team in action. When he was through talking back and forth with Dr. D, Dr. Watts gave us a layman’s explanation of some of the possibilities. I am not going to list them, since obviously they can’t all be it, and maybe even none of them are “it”. I did come home and get busy Googling every term I could remember hearing them discussing. You knew I would do that, didn’t you. LOL!

He did put me on a titrating dose schedule of Clonazepam, to see if that would calm down the jerks and tics. He said I would be sleepy with it at first, but that this would wear off as my body adjusted to it. I am to take 1/2 tablet at night for a week, then morning and night, and work up to 1 full and 2 halves a day. I have an appointment to see someone else in the practice in May to go over the findings. He said that Dr. D and Dr. Watts would be in on the conference with us at that time.

At this point about all I do know is that it is looking less and less likely that I have Parkinson’s, but that I do have some type of Movement Disorder as yet to be named.

We’ve not told family or friends about all this yet. They know I had the appointment but not why I had it. We decided there was no point in making anyone else worry about all this. We will wait until we actually know something to tell them. I can write it all here, which helps me process it all, because nobody I know personally reads this blog.

Posted in Uncategorized | Tagged antidepressant, depression, diagnosis, Dr. Watts, gait, Google, Movement Disorder, MRI, muscle spasms, pharmacist, prescriptions, psychosomatic, stress, symptoms, tests, tics, UAB | 8 Replies

Still Doing Without Parkinson’s Meds

Day by Day with a Movement Disorder Posted on February 17, 2008 by DBFebruary 17, 2008 2

I’ve been off all PD meds now since Jan. 25, and not doing a whole lot differently now than I was when I was on the meds. That has several possible meanings, so it really doesn’t tell me much.

It could mean that I don’t have PD.
It could mean that I have PD, and I’m one of the people who is not helped by the usual or any meds.
It could mean that these symptoms are related to lumbar and cervical disk problems I have.
It could mean that it’s all in my head – that it’s psychosomatic.
It could mean I do have some kind of neurological problem that has not been determined at this point.
It could be that these symptoms are from the Peripheral Neuropathy that I definitely have.

Whatever it means, I’m certainly not able to decide, so I continue to count the days until I see the MDS in April.

I have had several “spells” lately when I felt particularly stressed emotionally. Trying to get our taxes done, and dealing with my insurance company about the TAP claim both increased my symptoms.

But the worst was last Sunday during Sunday School. Our teacher was not there, but had left an outline of what she wanted us to discuss. We’ve done this before, as we are quite capable of carrying on a discussion on our own. For some reason, though, we weren’t getting anywhere with the discussion, so they asked me to lead it. These are people I’m used to being around, I taught Sunday School for a long time before I had to stay home with parents, and I taught school for 29 years. Leading it meant moving from the back row I normally sit on, and sitting in front of everyone, instead. Trying to lead the discussion up front brought on the facial tics big time, and I was shaking much more than usual. The worse it got, the more self conscious I became of them seeing me jerk and shake, and that made it just that much worse. I finally just told them I needed to stop, because it was making me too nervous. Time was almost up, anyway, so that was the end of class.

It took me a long time to relax after that, and just thinking about it now is bringing back some of the stress.

I really don’t think my symptoms are psychosomatic, but there’s no doubt that stress makes them worse. That’s why I’m usually at my worst at the Neurologist’s office.

I’ve just bought a new laptop computer, and this one has the built in camera. I took a notion the other day to video myself while I worked at the computer. It was a very revealing look at my facial tics, even when I am busy and not particularly aware of them. Maybe I should save some videos and take my computer with me to the MDS appointment. Well, probably not, but I may keep some for myself, anyway.

Hubby and I talked about how I’ve been doing lately, and he is in agreement that I really don’t seem much different off of the meds than I was when I was on them.

I continue to use the TENS device for my neck pain, as well as the Cervical Collar that I pump up, so it works like traction. I’m also doing the series of neck exercises daily, but we haven’t started back to walking yet. Hubby is having a bad flareup with his back, and he’s just not up to it right now. So, I piddle with the compost heap a couple of hours a week, and I am still working hard to get all our toys online in our shop catalog. That involves a good bit of shifting and lifting of tubs of toys, so I am getting some exercise each day.

All in all, I’d say my quality of life is better than a few months ago, at least, and for that I am grateful.

Posted in Uncategorized | Tagged muscle spasms, pain, peripheral neuropathy, prescriptions, psychosomatic, Quality of Life, stress, symptoms, tests, tics, tremors | 2 Replies

Went Off PD Meds Temporarily

Day by Day with a Movement Disorder Posted on December 23, 2007 by DBDecember 23, 2007  

I had my last PD medicine around 3:00PM Friday, so I have been without now for about 48 hours. I don’t know how much of those meds are still in my system, but I suspect there’s not much left.

So, how am I doing? Well, my right foot particularly, and the left to some extent, are shaking some, particularly when I stand in one place for more than just a few seconds. The wobbling foot and knee make my whole body rock rhythmically. It’s nowhere near as bad as it looked in Dr. S’s office Wednesday, but I was very nervous then, so the exaggerated gait was not overly surprising.

My right hand takes a notion to tremble off and on all day long, but I can usually stop it temporarily by thinking about it. Usually, I just start to jerk somewhere else, when I get one tremor stopped by relaxing and concentrating on just that one area. The facial and tongue tics seem to be worse, too, with me off the PD meds. Generally, I see an increase in jerkiness that moves from place to place as I consciously try to stop it elsewhere.

We haven’t told anyone in the family about this possible change in diagnosis, and don’t intend to, until it has been confirmed, and hopefully, we have a name for what is wrong with me.

I am going back on my Zelepar and Requip at 3:00PM today, and will stay one them at least until all the holidays are over with, and I am dismissed from PT. I probably will try going without again in February, just to see how I am doing then.

I wrote once before that having a neurological disease is like being in a clinical trial of ONE. It becomes very difficult to manage all the possible variables, and come to any kind of conclusion about the level of disability and what improves or aggravates the symptoms.

Posted in Uncategorized | Tagged coordination, diagnosis, difficulty walking, gait, peripheral neuropathy, Physical Therapy, prescriptions, psychosomatic, Quality of Life, Requip, symptoms, tests | Leave a reply

Doing Without PD Meds Today

Day by Day with a Movement Disorder Posted on December 22, 2007 by DBDecember 22, 2007  

I just have to answer this one for myself, before I drive myself crazy. I didn’t take my last PD med last night, and I haven’t had any this morning. It will take awhile for the meds to flush out of my system, but I need to know what I look like without them. It’s just like most of the meds you see advertised on TV. Take this pill to stop twitching, but oh, by the way, this pill can cause twitching!!! So, if I didn’t need them, they would give me the same symptoms as someone who did need them. Like I said, my brain is going around in circles over this, so I may not be making good sense right now.

I’m going to be in the house all day today, and I wanted to settle my mind on this before it was Christmas. It wouldn’t do me any good to try to wait until after the New Year to experiment, because I start physical therapy for my neck on Jan. 2, and I sure wouldn’t want to be playing around with my dosages then.

Of course I am still on all the other meds I take, for my digestive system, allergies, and bone density, plus the vitamins and herbs for general health and anti-oxidant benefits. Who knows, maybe that’s all I need to be on, anyway. I hope to find out with this little experiment.

We will be spending time with our older daughter and son-in-law here in town Christmas Eve, and then we’ll drive to our younger daughter’s home to spend with our grandchildren and her hubby. Then, a few days later, we’ll be driving back for our grandson’s birthday.

I don’t want this nagging doubt hanging over me. I want to enjoy this family time, and the celebration of the birth of Jesus, without obsessing over this, the way I have the last few days. So, it’s do without today, and maybe tomorrow, too, or wait until February or so. And I just emotionally can’t wait that long. Did I say that patience is not one of my virtues?

Posted in Uncategorized | Tagged Christmas, emotional lability, family, prescriptions, Quality of Life, stress, symptoms | Leave a reply

Post navigation

← Older posts

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
  • The Energy Blueprint
  • Satori Qigong Flow Form
  • 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
  • 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 »