Tag Archives: Friday Date Day

Praying the Depakote Works

Day by Day with a Movement Disorder Posted on by 2

I heard from my Neurologist Wednesday, and he’s trying me on Depakote, instead of the Neurontin. So far I’m not groggy, but I’m still jerking. Hopefully not as bad as I was, though. Today should be the test of it, as it’s had time to get fully into my system now. So, we’ll just wait and see. It does have some possible side effects that aren’t good, such as weight gain, so I’ll have to start weighing regularly again. And watch what I eat, too, as I had been splurging a good bit lately. But I’m not counting Thanksgiving.

It’s strange how they attempt to medicate the symptoms of Essential Myoclonus. Both of my meds, Primidone and Depakote, as well as the Neurontin he took me off of, are anti-seizure meds. But the EEG showed that I’m not having seizures. They really don’t know how these meds work for some people, and for that matter they don’t know what causes EM, either.

We had an enjoyable Date Day yesterday, going to the Galleria and walking around, mostly to see the Christmas decorations. But it’s not like it used to be. There were only token, if any, decorations in the stores, and they didn’t have a Santa in the mall, either. It’s sad to see how “politically correct” everyone’s become, but they sure want our money! But the mall itself was pretty, and the walking was good for me. And we did get some shopping done, but not at the Galleria! Hurray for “dollar stores” (I can remember when they were 10 cent stores)!!

I’ll try to get some more housework done today, and I’m praying that the Depakote works. My walking is still very unsteady, but that may be from lack of enough exercise. Might as well get a clean house while I build a few muscles, eh?

I hope you all had a wonderful Thanksgiving, as we sure did. And I’m thankful that my Neurologist does have some choices for meds to try for me. I pray that he finds the one that stops the jerking.

Thanks be to God for all his unspeakable gifts! He has blessed us in so many ways, particularly that my wonderful hubby is here by my side to help me in any way I need. I don’t know what I would do without him. I love him so much!!

I pray that you keep Christ as the center of your Christmas giving and celebrating, and that you and your family enjoy His Blessings during this holy time of year.

Seeing My Neurologist This Week

Day by Day with a Movement Disorder Posted on by 4

It’s time for another visit to my Neurologist this week, and I’m looking forward to seeing what he says about the Diabetes diagnosis and my Physical Therapy exercises. I’m still having some difficulty keeping my blood glucose numbers where they should be, and that keeps me somewhat down in the dumps. I feel like hubby and I are doing everything possible to put the right foods in me, so I just don’t understand why I can’t keep my levels in range all the time. It is just another complex disease to have to deal with.

I’ve been working really hard to get our new Collectibles Catalog online for the last few weeks, and the clutter I’ve made with all my stacks of plates and such is getting to me. It seems like we’re living in a warehouse these days, with boxes stacked everywhere, full of plush animals and vintage items, too. It’s a fun business, and we enjoy going out on the buying jaunts, but then I come home and have to try to find a place to store our “finds”. It seems I can’t have my cake and eat it, too … a clean house and keep on buying new lovies and collectible finds.

I’m still practicing with YouTube videos of Sacred Harp music, and it’s a slow go to learn how to do it. My brain power is definitely not what it used to be, but that could be old age creeping up on me, too. All I know is that I don’t learn new things anywhere near as easily as I once did, and it’s aggravating and frustrating! I read the other day about a 90 something year old lady finishing college, and I thought to myself how impossible it would be for me to absorb all that information now.

I am being very successful with my weight loss attempts. I’m down another couple of pounds, losing at the rate of 1 pound about every 10 days. I’m hoping that by going this slowly and steadily with it that I will not end up with the baggy skin they always show on TV.

Speaking of TV, we’ve been without any TV reception now for several weeks, thanks to an electrical storm that killed our amplifier and antenna rotator. We’ve discovered some of our favorite shows on hulu.com, and I have my notebook hooked up to the TV, so we can both watch the same thing at the same time. We have a large collection of movies, too, so we’ve managed to “watch the tube” several hours a night. I’ve ordered a new amplifier, and do plan to replace the ruined parts and get our television shows back. I do feel good about my success in getting the picture on my laptop to show on the TV. So some neurons are still firing up there.

I’ve done a lot of whining today, and for that I’m sorry. I considered erasing the whole post, but I want this blog to be a true look at what it’s like to have my health problems, so you’re stuck with it. My apologies.

Wonderful AVERAGE Days

Day by Day with a Movement Disorder Posted on by 2

The last few weeks have basically been remarkably average days, and that’s a wonderful thing. It seems like I’ve been on a roller coaster now for several years, going from one diagnosis to another, with changes of medicines happening all the time. Then the added learning curve of living with Diabetes to add to the mix. But the last few weeks have been basically NORMAL! I think that calls for a celebration!

I have an eye exam tomorrow afternoon, and, other than a PT appointment late in June, my calendar is empty. I’ve read and re-read all the Diabetes magazines we could find at the Thrift Store, bought a couple of calorie and carb counting books to help keep me on track with food when we eat out, and I’m exercising pretty regularly now. I even have 3 pair of diabetic socks, so I don’t have to keep turning my old socks inside out to wear them in such a way that they don’t irritate my toes.

We had a nice Date Day Friday, and once again I forgot to take the cane with me. Luckily, only one home had any slant to speak of to their driveway, and I managed it OK. That’s a direct result of the time I’ve been spending on the recumbent bike, for sure. We still don’t have our car back from repairs after the wreck, so I did get tired quickly from climbing up into the van over and over again, but hubby didn’t have to push me in, at least.

My jerks are still well under control, although every once in awhile I will get small jerks, just to remind me it’s still there I guess. And, as I had hoped, the Glucophage, which lists diarrhea as a possible side effect, has helped me with the constipation problem. I’m not having to take all the meds I was previously to stay comfortable.

I’ve checked my blood pressure a few times here at the house, and that has been very good, too!

So, I thank God for giving me normal days, and I look forward to a wonderful day today and week to come!!

Looking Forward to an Enjoyable Date Day Today

Day by Day with a Movement Disorder Posted on by 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!!!

Coughing, but OK

Day by Day with a Movement Disorder Posted on by 2

Well, I’m still coughing, and the x-ray came back all clear, which is what I expected. I was a little concerned that it might be asthma, since it was worse in the mornings and at night. That fit those symptoms. But the doctor’s nurse said it’s allergies and sinus drainage pooling in the main bronchial tube.

So, I put myself back on an OTC antihistamine that I’ve had good luck with before, and it’s just wait the stuff out now.

I’ve gone back to exercising as much as I can. And we went on our Date Day yesterday. We had to quit a little early, though, as I was exhausted. I’m back in that de-conditioned state again. It will be awhile before I’m back up to the level of exercising I was doing before I got sick. I’m thoroughly enjoying the recumbent bike, and hubby is using it too. It’s sitting in the middle of our living room, so we can watch TV and bike at the same time. Not high decorating style for sure, but right now I just don’t care. If we have company it can be moved temporarily.

I’m pretty much in the habit of taking the glucose readings now, and I’m using FitDay to log in my food intake and exercise minutes. I found this site when our daughter was on a feeding tube, and we needed to keep track of her eating. It’s really a good way to monitor not only calories and carbs, but all the major nutrients.

I’m going to postpone my Physical Therapy session due for next week. There’s no point in going right now, as I am weaker than I was last time. I’ll just keep working on what he has already given me. I do have my annual OBGYN appointment next week, and I’m anxious to see how my bone density is coming along. I’ve been on Calcium now for 2 years, so hopefully I’ve improved some. I don’t drink carbonated beverages, and we get lots of nutrients from the raw spinach salad we eat almost every day.

So, we continue to do what we can to keep our health level in as good a shape as possible. I continue to read everything I can get my hands on about diabetes, too. We had a leaky water pipe out in the yard that got fixed today, so all in all I’ve had a great day.

Go-Litely AGAIN!!!

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

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

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

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

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

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

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

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

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

Tummy is Still Not Right

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I am supposed to call my Gastro’s office today to let him know how I’m doing, and I won’t have good news for him. I cleaned myself out, at his directions, and then went back to normal eating as much as I could, which is what he told me to do.

I’m still nauseated, bloated, and sore. Plus, I am still clearing my throat all the time and coughing from a tickle feeling when I eat anything the least bit spicy. And I do mean the least bit, as neither one of us likes hot foods. It always feels like the same place in my throat is being irritated.

So I suspect he will be considering an Endoscopy this time. I thought this time was different, but the usual problems did have to be ruled out.

We will be going on our usual Date Day today. I figure I won’t feel any worse than I already do, and I do need to get out of the house. Plus, it’s always a good bit of exercise for me, and I certainly need that. It’s a whole lot more fun going up and down hilly driveways in anticipation of finding some goodies than it would be to just do an exercise routine.

Half Pill More of Primidone is Working Just Fine

Day by Day with a Movement Disorder Posted on by 6

I hesitated to start taking more of the Primidone for the very first time on our Date Day, just in case it left me loopy, but I decided to take a chance. It was just this sort of extra exercise that made the Primidone wear off faster in the afternoon. I had no problem with it at all. Our very first Estate Sale involved a long walk up a steep driveway to get to the house, and yet I was still steady yesterday evening. So that appears to be the correct dose for me right now. As I gradually increase my activity level, I may have to adjust it again. but for now – it’s great!!

I’m still bubbling over such great news and wonderful relief from the jerks, shakes, and twitches. Hubby has been teasing me about how much I’m talking now. He drawls, “It sure was quiet around here,” and sounds just like my Daddy – always finding some way to say something negative. He is teasing, and we both laugh every time he says it. It’s a shame my Daddy never learned to look on the bright side of things, but I learned my lesson well from him and don’t want to ever be that way.

And now I really do have something positive to shout from the rooftops!!! God has blessed me with a wonderful new lease on life, and I can’t give Him praises enough!

Twitching Along ….

Day by Day with a Movement Disorder Posted on by 4

We went on our usual Date Day today and visited three Estate Sales. Two were complete duds, but the last one was fun. It was an old country house chock full of a lifetime of collecting all kinds of odds and ends. We both enjoyed ourselves there, and then we stopped by our usual Thrift Store haunts in that area and found enough plush lovies to more than make the day break even. It’s fun having a hobby that pays for itself, plus helps other people, too.

We had our second meeting yesterday with our new Financial Adviser, in the process of deciding how to best protect our future and be sure there is money in place to take care of our needs. Our daughters know that we do not want to go to a Nursing Home, but realistically we can’t assume they will be in a position to keep one or both of us at home, the way we did our parents. That’s way too much a burden to blithely assume someone else will tackle. That means considering Long Term Care Insurance and putting money aside to pay for in home care if at all possible. We’ve paid out enough over the last ten years to know what is involved, and it’s certainly not cheap.

He went over several different options with us, and I was having a really hard time following the differences, pros, cons, etc. So was hubby. We asked lots of questions, some several times, and he patiently went over each concern. We left with several brochures, still not sure of what we need to do. We’ll see him again next week, after he’s had time to pursue the options we were most interested in. There will be a Long Term Care expert at our next meeting, too.

We won’t be able to settle some arrangements until I have a diagnosis. After all, what new insurance company would insure me for anything when my own doctor can’t say what is wrong with me! So, for now I am stuck with the insurance I already have, and we can only do the research for more appropriate kinds.

Did I say stress makes my twitches and tremors worse? Yep, you guessed it. By the time we left I was grimacing and shaking like I was keeping time to some peppy music. Hubby even asked me if I was doing my hand on purpose, because it really did look like I was in tempo with the CD. But no, it was my body doing its own little dance duet. I “cured” the nerves the way I always do …CHOCOLATE!!! Hubby knows what to do, so we stopped and I gorged on brownies. Better than any tranquilizer I have ever used, as there is no spaced out feeling afterwards. 😉

Week One of my Experiment

Day by Day with a Movement Disorder Posted on by 2

OK folks, I’ve been off of all my Parkinson’s meds for exactly a week now. I am definitely having more facial tics, but not enough to be the sole reason that I would go back on the meds. Walking is perhaps a little slower and more labored, but nothing like it was back when I was originally diagnosed. So, it remains to be seen just how much this changes this next week. My hand and legs tremors are more pronounced, but again not to a point that I feel compelled to go back on the meds.

And why, you may ask, am I doing this to myself? I am a scientist by nature, with a lifetime of dealing with challenges by using the scientific method. That means isolating the cause and effect relationship by changing only one thing at a time, and using a control as a comparison point. Obviously I can’t do this experiment with all the steps in place, but I can try.

It would be so much easier if I had some way to accurately quantify the amount of Bradykinesia (slow movement), tics (involuntary facial muscle twitches), and tremors I have, with their locations, but this is all, by its very nature, subjective.

I’ll continue with my experiment on me for a while longer, but I will try to live each day to the fullest, too, and not make this diagnosis all I am about.

So today we went on our Date Day as usual, and I had a wonderful time with my hubby. We just enjoy being in each other’s company. I know we are in the house together for days at a time, but he’s doing his thing and I’m doing mine. On Fridays, we spend the day together – really together.