Tag Archives: brain fog

WAAAAAY Too Much Meds!!!

Day by Day with a Movement Disorder Posted on November 27, 2010 by  

Well, I found out one thing the last few days. I can’t handle 2 Neurontin pills 3 times a day, on top of 3 Primidone pills twice a day. I stayed in a stupor from Monday through Wednesday, trying to give my body a chance to adjust to the new meds level, but I just couldn’t take it. So, in order to enjoy Thanksgiving with my family, I took 1 Neurontin Thursday morning, and none at lunch. Then I took 1 with a light supper. I’m only taking one with each meal now, and we’ll see what the doctor says on Monday. If it weren’t for the “walking on Jello” feeling I have when my foot jerks unpredictably while I walk, I would put up with the shoulder jerks, rather than take the extra medicine. But I’m unsteady on my feet without the meds, plus seeing the slowing called Bradykinesia, and unsteady from being looped when I’m on them, plus the slowing. Go figure.

But we had a very good Thanksgiving together as a family, and I enjoyed being with everyone – especially our daughters. Of course, I enjoyed seeing our grandkids, but they spend most of their time texting and playing games, so we don’t see much of them. Our younger daughter cooked a beautiful turkey, and our older daughter did a lot of the other cooking. She made the girls shuck and scrape the corn. That was fun, because they had never done that before. It brought back memories, because it’s been many years since I shucked corn, either. I even got a great big hug from my “cool” grandson, which was extra special!

I must admit that all the hustle and bustle of preparing the food on Wednesday wore me out, even though I did very little to help. Mostly I just sat in a daze. LOL!

So I have a lot to be Thankful to God for this year. Our family has been through some rough times, but things are being dealt with as best we can, and with God’s grace, time will heal the worst of the wounds. We are so much more fortunate than many that there’s no way I can count all our blessings. Thanks be to God for His unspeakable Gifts!!!

Jerking Has Been Much Worse

Day by Day with a Movement Disorder Posted on November 16, 2010 by  

I’ve postponed writing about the increase in my jerks and twitches over the last few months, hoping that it was due to more stress than usual and would go away on its own. But it hasn’t. I called my Neurologist about a month ago to let him know that I was getting worse, and his nurse called back to tell me to increase my dose of Primidone to 2 pills twice a day. I did that for a couple of weeks, with no help at all, so I called back. This time he said to take 3 pills twice a day. Well, that didn’t help, either.

So I called the other day to see what he’d suggest, and I went to see him today. He’s added Neurontin (Gabapentin) to my 3 at a time Primidone dose to see if that helps. He asked me if I had ever been on it, and I couldn’t remember that I had. It wasn’t until I just now did some Googling for Neurontin and Essential Myoclonus that some of my old posts on this blog popped up. I have been on it before, and I had really bad nightmare problems with it, and it didn’t help with the jerks, either. Since I will be in his office building tomorrow, while I’m there I’ll see if he wants to try something else instead.

I had shared some very disturbing to me loss of memory incidences of late, so he has scheduled an MRI for tomorrow. He also had some blood drawn to check for thyroid problems and B12 levels. I’ll probably get those results later on this week. I can’t imagine that my B12 would be low, considering what we eat, but a thyroid problem is certainly a possibility.

The jerks are nerve wracking for me and worrying my dear sweet hubby, so I pray that the added medicine will help. I pray that the blood tests and MRI will help my doctor decide what might be going on with my memory. It may just be a side effect of the very medicines that help me to have a good Quality of Life in other ways. Primidone is one of the ones I take that can cause memory problems, and I’m now on 3 times as much as I was originally taking! And the Triavil I take at night helps to keep my digestive system behaving itself. And he named one other prescription I was on that could cause memory loss, but I forgot which one he said. (ironic?)

I’m Using a NEW Search Box

Day by Day with a Movement Disorder Posted on October 30, 2010 by 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 //www.freefind.com/.

I’m Still Losing Weight

Day by Day with a Movement Disorder Posted on October 28, 2010 by 2

Well, I have exceeded my goal weight loss by several pounds, and even though I’ve quit counting calories, I’m still losing weight. It’s just as slow a weight loss as it was all those months of trying, but losing it I am. And I’ve been allowing myself the occasional milkshake or pizza, as the mood strikes, too, without regard for calories or lactose intolerance or blood glucose numbers!

I guess I’ve just gotten so used to eating less that I am still “on a diet”, even though I’m not trying. Hmmm… anyone want a milkshake?

I’ve finished reading Dan’s book, I Will Go On, and I’m in the process of re-reading the chapters I found most inspirational to me. I can’t say that I “enjoyed” the first few chapters, but the bulk of the book more than made up for the opening explanation of the various types of Parkinson’s Plus disorders. I would still recommend it as great reading for anyone dealing with PD, or any Movement Disorder, either as the one with it, or as the care giver. I didn’t find the explanations that helpful, as I’ve already read all this many times before in my own Googling, but I would think that anyone new to PD Plus would find this layman’s explanation of all the variations of severe Movement Disorders to be very useful.

I can only be thankful to God that I have a relatively mild Movement Disorder.

Hubby and I have noticed some occasional tremors in my right hand that aren’t as jerky as my foot, shoulder, and face can get at times of stress. It’s nothing to be concerned about, but worth noting, in case it becomes more frequent. I will be able to look back here and see about when we first started seeing it.

When I was first diagnosed with Parkinson’s, we bought a notebook to log any and all symptoms, doctor’s visits, meds, etc. And I kept it up religiously until after the MDS had changed the diagnosis to Essential Myoclonus and had me on Primidone, which worked wonders for me. But I’ve long since quit writing much in it, depending more on keeping track here on my blog of our war on my Type II Diabetes diagnosis. I would recommend the journal method though, for anyone with a progressive disease, such as Parkinson’s. It’s great to be able to answer the doctor’s questions about onset of symptoms by turning back in a journal to the first entry for a given situation. And it’s much easier to keep track of the side effects of meds, etc., too.

There have been some family issues that have kept me somewhat depressed and definitely more tense of late. I don’t handle my emotions as well as I used to, either, so it’s affecting me more than I would like. It’s just something I need to work on. I know that with God’s help I can meet anything that comes my way.

I recently started trying to memorize scripture verses, both as a way of drawing closer to God and to also exercise my memory. I’m picking verses that I already know in a general way, and now I’m trying to learn where they are in the Bible and learn the exact King James version of them. That’s the version I grew up with, so it’s best for me to use. I know a lot of scriptures in a paraphrased sort of way, but, with few exceptions, I never learned their location in the Bible. I regret that I did not master these verses a long time ago. I can certainly tell that my brain is not as sharp as it used to be, but I’m glad to see that I am having some success.

So here I am at this moment in time, with some successes and other situations I continue to work on. Life is good.

Doing Great!

Day by Day with a Movement Disorder Posted on March 7, 2010 by  

I’m really feeling good these days. My stomach is behaving itself, and I’m encouraged by the strength that is returning to my legs. I was able to manage a couple of fairly steep driveways on our yard sale haunts on our Date Day without using the cane. That’s quite a victory for me, as I can’t remember how many years it’s been since that was true.

I’m gradually adding back in all the supplements I was taking before my stomach got ulcerated again, and so far there’s been no stomach problems. That’s a true blessing.

I’m also encouraged by my ability to learn about the new programming language that our new sites are written in. It’s slow going, but I am gradually understanding how the code is working. I’m very proud of that.

I’m still going to sleep most nights at 9:00PM and getting up around 5:00AM, so I’m getting plenty of sleep. I usually only wake up once in the night to make a bathroom trip, so my bladder is behaving, too.

I’m getting closer to my goal of losing 50 pounds by April 1. I may not hit the date exactly, but I’m not going to miss it by much. With the lowered rate, and the care hubby takes with his grocery shopping, my blood glucose numbers have been mostly excellent for some time now. Of course, there’s the occasional high number, but I usually know what I’ve eaten to cause it, and learn accordingly.

All in all, I’d say I’m in the best physical and mental state I’ve been in for years, and I hope it continues.

A Tiny Half Pill

Day by Day with a Movement Disorder Posted on February 22, 2010 by 1

Well, I tried cutting back my Primidone by a half pill, and I couldn’t even get through one whole day without it. By evening my whole face was twitching all over the place, and it was getting really painful. My poor facial muscles were just worn plum out. So I took a whole pill extra an hour before bed and put the hot pad on my face, hoping it would calm down in time for me to get some sleep. That worked fairly well, but my face still ached for the next couple of days. So I guess I won’t be trying to cut the Primidone again. Such a tiny pill, but it packs a wallop, for sure.

Now I am gradually adding back my supplements to my pill box. I’m in no hurry, because I’m afraid something I was taking was responsible for this last bought of ulcerated stomach it took me so long to get over. So far so good with that experiment. I’m also going to try cutting back my Triavil by one less pill a day. That was the other medicine besides the Primidone that my Neurologist said could be responsible for my poor short term memory. It’s worth a try, anyway. I would like to feel like my brain was sharp again. It’s felt dull now so long that I have forgotten what it was like to really be on top of things.

I am pleased with how much I’ve been able to learn about the new WordPress site for our Lost Toys Search Service. We hired a programmer to do the bulk of the work, but I was able to do a good bit of the cosmetic work myself, while he worked on all the behind the scenes code that makes the site work. I could never have done this by myself, as it requires knowing another programming language. But I was able to study the code and get the gist of how it works, anyway. All and all I’m proud of how much I was able to learn. It meant putting in lots of hours, but I have the time and enjoy the challenge. Now he’s working on redoing our Plush Catalog, so that will be another learning curve to master.

And it’s time I started working on our income taxes, too. I do that on the computer, so at least I don’t have to do the math. So my brain is going to be getting quite a workout for the next few months. I need every alert brain cell I can muster!

Getting Better Little by Little

Day by Day with a Movement Disorder Posted on February 10, 2010 by  

I’ve had a good couple of weeks now that my stomach is getting better, and I’ve been working on building up my exercise time. I’m still stuck at 3 minutes at a time on the treadmill, but I am moving faster on it than when I started. Now I’m doing it twice a day most days, followed by 10 minutes on the recumbent bike, so I’m getting almost 30 minutes a day of hard (well, for me, anyway) exercise. I can really tell it when I have to climb stairs now. It’s not anywhere as hard as it has been.

I did take a dose of Pepto Bismol yesterday, however, because I felt like my stomach was irritated. Maybe I nipped it in the bud, before it had a chance to give me trouble again. I sure hope so. There must be some medicine I am taking that is really doing a number on my stomach, but it’s hard to know which one, since I take so many. I did wait a week after feeling better to go back on the vitamins and supplements, so maybe I’ll leave them off again this week and see if my tummy is OK. Then, instead of adding them all back at once, the way I did last time, I’ll do it one at a time, so I can spot the culprit. Nothing like doing a science experiment on myself.

I’ve seen my Diabetes doctor and my Neurologist in the last couple of weeks, and both are very pleased with my progress. My glucose test numbers have been consistently good now for over a week, so I’m proud of myself. I continue to lose weight gradually, so it looks like I’m shrinking myself out of the diabetes diagnosis!

I’m less than 10 pounds from my original weight goal right now, but I’ve bought some size 12 pants that I want to fit into and may continue to lose more if I need to, so I can wear them. I say quit, but I’m so used to eating this amount of food now that I can’t really imagine eating much more. I started my conscious effort to count calories and watch my sugar and carb intake back in April of ’09, so that’s a pretty well established habit now. Only occasionally do I feel hungry, and more often than not that is a sign my stomach is irritated, rather than real hunger. For some reason my body interprets low grade stomach pain as hunger. I’ve noticed that for a long time.

The Neurologist did give me some flexibility in how much Primidone I could take, depending on whether or not my tics and jerks returned. I had upped my dose by a half pill at a time while I was sick, because my face started its thing again. He says stress can effect the twitches, and I do believe it. So, along with trying to add the supplements one at a time, I’m going to try cutting back on the Primidone by that half pill.

I did ask him about my poor memory, and he said the Primidone and the Triavil could both be effecting that. My Gastro had suggested I try cutting back on the Triavil about the time I got sick, which I did, but I went back on the full dose when my stomach was so uncomfortable. I guess that’s another pill I can try backing off from gradually. Lots of tinkering with doses to play with for the next few weeks, trying to do the most good with the least side effects.

I’ve been working on learning about our new website format, so my brain has been getting a good workout lately. I’m pleased with what I’ve been able to understand, but there’s so much more to learn. This time I didn’t try to do it all by myself. I’ve hired a programmer to make the major change from one computer program to another, and that took a lot of the stress off of me. It sure is nice to be able to email him with questions and actually get answers! That’s customer service the way I like it!!

I continue to be optimistic, with goals to diet my way out of the diabetes and find the optimal doses of all my meds and supplements. And I look forward to being able to increase my exercise time gradually over the next few months.

I’m OFF the Carafate!!

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

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!

My How Time Flies

Day by Day with a Movement Disorder Posted on November 3, 2009 by 2

Wow! It’s been almost a month since I posted here! I can’t get over how quickly time is going. For the most part I’ve been doing pretty well, although the blood glucose numbers continue to peak at higher numbers than I would like. I’m not stressing so much about it though, so that’s a good thing.

I was increasing my daily exercise quite nicely, until I came down with an infection. These powerful antibiotics always sap my strength, not to mention upset my digestive system, so I haven’t done any exercising lately.

My weight continues to drop ever so slowly, but I’m pleased that I seem to be past the plateau I was on for what seemed like forever. Of course it really wasn’t that long … it’s just that I am not one for patience. I know that losing the weight this slowly is preventing the sagging skin problem that can come with large weight losses. I just have to keep reminding myself of that.

I continue to be frustrated by how hard it is to order from restaurant menus. I’m beginning to learn a few tricks that work, though, like asking to see a dinner menu to see what other options might work better for me. Yesterday we ate lunch out for hubby’s birthday, and I was able to have part of my order from the lunch menu and part from the night menu. And my test levels were good!

I was very pleased with myself that I made the transition from Vista to Windows 7 with no major hitches. And the one minor glitch, that left me with a corrupted mouse pointer file, I was able to find a fix online all by myself. I’ve always been good with computers, so any evidence that I’ve “still got it” is always welcome.

I do continue to have odd brain glitches from time to time. I can forget something completely in a matter of seconds, and I find all kinds of mistakes I’ve made in our online business. Those kinds of goofs really frustrate me, and I get so upset with myself. And that only makes things worse. I need a big dose of I Don’t Care pills at times like these. Hubby is always telling me it’s no big deal, but every little thing I do that’s so bizarre just adds to my negative self talk. I know some of it is my age, and some is from all the medicines I take, so I try think of that when I’m so down. When you’ve taken care of Alzheimer’s family members for years you can’t help but see yourself heading down that path at times. Then I try to tell myself that it’s not forgetting to put something in the refrigerator that counts. It’s that I still know what a refrigerator is for that’s important!

I’m looking forward to having the family here for Thanksgiving, with all the hustle and bustle of the Christmas season not far off, either. So time better not fly too fast, or they will be here before I’m ready for them. If so, they’ll just have to overlook the mess and enjoy the day together anyway!! LOL!!

Seeing My Neurologist This Week

Day by Day with a Movement Disorder Posted on August 3, 2009 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.