Tag Archives: Quality of Life

Jerking Has Been Much Worse

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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

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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/.

I’m Still Losing Weight

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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.

I Will Go On by Dr. Daniel Brooks

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Dan Brooks has written a book about his fight to preserve himself as his body deteriorates, I Will Go On, and I bought it the other day on Amazon. I’m glad I did.

One of the best things about blogging is getting to know people you would never have the opportunity to meet otherwise. I have been following Dan and his journey through his aggressive form of Movement Disorder for some time now on his blog, and I’m always encouraged and uplifted by his strength of character and determination.

I’m not too far into the book yet, but I can tell you right now that it should be required reading for anyone who is facing Parkinson’s, and for their care givers, and certainly for those who appear to have one of the rarer forms of Movement Disorders that have Parkinson’s symptoms plus other brain dysfunction symptoms. For those like myself, who have a mild form of a Movement Disorder, it helps to put my minor problems into perspective. For those with rapidly worsening symptoms, it gives a vivid description of his progression and determination. It is a scary read in some ways for me, but I know from personal experience that even a bad diagnosis is better than the awful unknown of enduring test after test and doctor after doctor with no idea what is wrong with you or how to treat it.

I hurt for Dan as I read it, but it’s hard for me to put the book down. I want to know more about this man I have come to love and respect via the internet. I think you’ll find that true, as well.

I’ve Lost Weight – Now I’m Getting Asked If I’m Sick

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This is a hoot. I’m in better health than I have been for years, but in the last few weeks my Hubby and I have been asked repeatedly if I’m sick. You’d think I had lost the weight quickly, but it took me over a year to lose the 50 pounds. And the questions are coming from people who see me every week.

I could understand it if I had just changed to clothes that fit me better, or if I had lost the weight in a hurry. But I redid my wardrobe totally several months ago.

Now, I am still losing a little bit of weight, so my new clothes are beginning to fit loosely. That may be the reason for the questions. But all those months I was wearing my old clothes that were way too big for me? Not a word from a soul.

So, now the question is, have I lost TOO much weight? I don’t think so. I still weigh about 10 pounds more than I did when I was 21, when we got married. And there’s no way I could possibly fit in my wedding dress now.

I think it’s because I look older now that I’m thinner. I’d rather I didn’t look older, but I’ll take looking older over feeling worse any day.

It’s really quite ironic. When I was so sick, but heavier, no one but family asked about my health. Now I’m thinner, and much healthier, and they’re concerned about me. Go figure. LOL!

Getting “Back to Normal”

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Well, I decided to try to get my life “back to normal”.

1. I’ve rearranged my meds, so I’m only taking them a few times a day, instead of what felt like all day long.

2. I’m no longer pricking my fingers 3 times every day, but only doing it 2 hours after lunch. My glucose readings have been consistently good for before breakfast and after supper for a very long time. Most of my fluctuations have been after lunch, since we don’t always eat the same thing then. This has been very liberating feeling, plus it’s a lot less expensive, too!

3. I’ve finally quit putting my calorie count for each meal into FitDay.com. After faithfully keeping track of every meal for over a year, I was just plain tired of doing it. And, I still seem to be losing a little, as I’m not really expecting to eat any more than I have been eating.

Add them altogether, and I really do feel like I’m back to normal. I’m still not exercising the way I should. They did a piece on the news the other day saying that people who sit for 6 or more hours a day have something like a 40% higher heart attack rate, even if they exercise. So, I’m in big trouble. Have I changed the amount of time I spend at the computer since hearing that? No.

So, I’d say 3 steps forward, and one huge one backward, until I get my duff off the sofa and start moving around more.

Only ONE Pound to Go!

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I’m celebrating!! In the last year of keeping track of what I eat I’ve gone from size 22 pants to size 12. I feel better, and I feel better about myself, too. I actually like the way I look in clothes now, and it’s been a long time since I could say that.

I credit it to my great hubby, who does the grocery shopping and cooking. He takes a lot of time when he shops to be sure he’s avoiding sugar and lots of carbs, and he keeps a variety of microwave dinners in the house, so I can have just the right number of calories to finish off the day. I have kept up with my calorie count each day on FitDay, and he asks me each evening how many calories I have. It’s easy then to pick something to fix that will keep me in the 1100 to 1200 calorie range.

Now don’t get me wrong. There have been times when I have ignored not only calories, but sugar as well. Occasionally I just have to have a chocolate milkshake or a pizza, or even pig out on desserts at a buffet. But I don’t do that very often. And I’m even learning to enjoy eating just a few squares of dark 75 to 85% cocoa chocolate, when I can’t resist that chocolate craving. I used to eat the whole bar without so much as a thought to how many calories it was.

So, the last year has really involved a lifestyle change for both of us. We both eat the healthy spinach salad with a pepper, onion, mushroom, etc., stir fry for lunch, with fruit and nuts for dessert, and we eat a healthy fiber breakfast, too. I usually have a microwave dinner or soup for supper, and hubby has fruit most of the time. We’ve just gotten used to not eating much at night, and we don’t have nearly the GERD trouble we both used to have.

I’ve reset my weight goal now, and I’m hoping to reach 125 pounds by about the end of August. I’m sure these last pounds will be slow to come off, but that’s OK. I can stick it out. I’ve proven that.

My A1c was 5.5!!!

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Whoo Hoo!! I’m CELEBRATING!! My A1c reading was 5.5 yesterday!! Anything below 7 is considered to be extremely good, so I really did well!! This number is in line with what a person who does NOT have diabetes would get.

The A1c reading is a blood test, usually done at the doctor’s office, that gives a good indication of the average blood glucose level for about the last 3 months.

According to Wikipedia:

In the normal 120-day life span of the red blood cell, glucose molecules react with hemoglobin, forming glycated hemoglobin. In individuals with poorly controlled diabetes, the quantities of these glycated hemoglobins are much higher than in healthy people.

Once a hemoglobin molecule is glycated, it remains that way. A buildup of glycated hemoglobin within the red cell therefore reflects the average level of glucose to which the cell has been exposed during its life cycle.

Basically, if I understand that, extra glucose in the blood permanently changes our red blood cells. Since our blood cells live for about 120 days, measuring the percentage of “sugared up” red blood cells is a good way to see what my glucose level has been for the last few months.

I was not as pleased with my weight, though, as I’ve not lost any more weight in some time. I’m having a hard time getting myself in the exercise habit, and I know that’s the problem. I’m controlling what I eat and how much I eat, with occasional splurges, but I’m not burning enough calories. Plus, I need to be exercising more just for good general health. I’ve already seen considerable improvement with my step climbing and walking up and down steep driveways on our Date Days, so I should be motivated to work out even more. This is what I’m going to have to work on mentally, as I have never been a very physically active person.

So, I celebrate the great blood glucose results for the last few months and continue to exhort myself to improve my activity level.

Still Improving

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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!!!!!

My How Time Flies

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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!!