Tag Archives: Sinemet

Still Having Problems, But I’m Sleeping Longer!

Day by Day with a Movement Disorder Posted on by 2

I have managed to “stay in bed” for over 7 hours now 4 nights in a row. I wish I could say that means I was asleep the whole time, but that hasn’t happened yet. It is still a considerable improvement, however. The last pill I take at night is the Bentyl, which is supposed to calm my colon and prevent the spasms that have been plaguing me for so long. It is an antidepressant, so I suspect that may be at least part of the reason I’ve been able to delay getting up as well as I have been. I continue to wear the TAP each night, so maybe it’s a combination of both of them. Whatever it is, I’m thankful for it.

I’ve spent the last three days trying to overcome the stiffest neck I’ve ever had in my life. It started Wednesday evening, out of nowhere. I could feel the neck muscles all tensed up, and it was impossible for me to turn either way more than a couple of degrees. I tried the hot pad, plus took some Tylenol, and hoped I would sleep it off. I also did not wear the TAP that night, thinking that might make it worse. It was still extremely tight and painful all day Thursday, but I did go back to wearing the TAP. Nothing seemed to make it go away. It was considerably better by Friday, although I did take some Arthritis Strength Tylenol to get to sleep. Now, I am able to turn my head both ways maybe 45 degrees each way before the pain stops me.

I’m not really sure where this spasm came from. I did work out in the yard Wednesday more than I have been, and I could have over done it there. Or, it could be that I have turned the TAP screw past what my jaw can handle. Just in case it was the TAP, I backed up several turns on it to give my jaw muscles a rest.

I did get my flu shot this week, with no side effects at all. And I made sure the nurse put the information in my records about Celestone causing me to have such a horrible Parkinson’s episode. I have not yet returned to the state I was in before the steroid shot, so I guess I won’t be getting back to that point. It’s been too long now. If I were going to recover completely, I would have by now.

I am still having those weird spaced out episodes after lunch mostly. I’ve tried eating meat, not eating meat, staying away from any protein, eating normally, eating things I’m not supposed to eat, like pizza, and eating very carefully selected IBS foods. Nothing seems to be an obvious trigger, so I’m left to think it is the medicine itself doing it. That would be the noon dose of Levadopa/Carbidopa (Sinemet). I’m not sure why I have more trouble with the noon dose, as I take this med with all three meals. It remains a puzzle.

I’ve been working hard on several computer projects lately, so I’m behind on listing items on eBay. I have got to get that done today, though, as we are being squished by all the bags of plush toys packed into our two spare bedrooms. LOL We buy them faster than I can sell them!!

So, I guess it’s time to quit blogging, and start taking some photos!!

Some Things Better, Progress with Others

Day by Day with a Movement Disorder Posted on by 2

I’ve been busy the last few days trying to get used to the TAP and regulating my meds and diet to try to deal with the colon problems I’ve had for well over a year now. The TAP dental appliance is doing as well as I would expect. I slept about 7 hours last night, which is a huge improvement for me. I am still waking up a couple of times in the night to go to the bathroom, though, so it’s not yet a completely restful sleep. It’s time for me to make an appointment for a new Sleep Study, to see if the device is handling my Apnea appropriately. That will be the determining factor on whether I can get my insurance to pay for the TAP or not, and whether it’s worth using.

I am pleased to see that there is a way to use the TAP device as the anchoring mechanism for a CPAP mask, if it becomes necessary to go back on that. A nasal pillow delivery system can be attached directly to the dental appliance, so there would be no straps or mask all over my face. That’s encouraging, as it means I can look forward to either getting by with just the TAP, or the TAP plus CPAP – but NO MASK!!! So, I’m very optimistic about the coming Sleep Study.

As for the elimination situation, I am somewhat improved, although certainly not where I would like to be. I’m still belching and having gas problems, but not having as much trouble actually going to the bathroom as I was. So, the Acidophilus, the Bentyl prescription, and an extra Metamucil capsule a day seem to be the right plan of attack for that problem.

DH and I have been searching for some practical ways for me to keep track of all my pills, the dosing times, and a way to effectively keep me on schedule. I seem to have some kind of Freudian aversion to remembering to take my pills. I hate having to take so much medicine, and I think it’s causing some kind of passive aggressive reaction that I’m going to have to overcome. We’ve taken some positive steps to get over this hump. We bought two Plano tool/fishing tackle boxes, each with 4 storage boxes in it. That gives me enough boxes for 8 days, so I can make up meds once a week and have a spare. Right now I am taking medicine at 12 different times a day, so I put a numbered sticker in the bottom of each little compartment, with the dosing time on it. I can take the small box for one day with me wherever I go fairly easily. I even found that I could use my Bible cover to “hide” my pills on Sunday. I just carried my Bible loose and put the pill box in where the Bible would have been. I have to take a dose between Sunday School and Church, so this worked nicely.

Getting me on a dependable schedule was the next problem to handle. I searched for days all over the Internet, looking for pill reminder systems that I thought would work for me. Most would not give enough alarms to suit my needs, or any PWP’s needs, for that matter. PWP tend to take our meds closer and closer to each other as the disease progresses, so it’s not unusual for a Parkie to be taking something every hour during the day, and even getting up in the night to take something. Also, some of the more promising systems only allowed you to set pill reminders from say 8:00AM to midnight, and my first pill is at 5:00 AM.

So, I ended up buying a Timex Ironman Data Link watch, which can be connected to the computer via USB. It’s like having a PDA on your wrist. It came yesterday, but I have been studying everything I could find about it while I waited for it to come, and I had my pill schedule all ready to send to the watch. It worked like a charm. It beeps and the face lights up and flashes for several seconds, and the names of the pills I need to take scroll across the watch face. If I don’t push a button on the watch, I get another reminder in 5 minutes. Since I’ll be wearing it, I’m much more likely to heed the reminder. I also have the reminders set up on Outlook, since the computer is on all day long, anyway.

The watch needs to be quite large, as you might expect, so it’s the size of a man’s sports watch. I don’t mind that, if it keeps me from forgetting a pill, as I have been prone to do. For now, it’s in my pocket, because I’m going to have some links taken out of the band. There’s a lot to learn about this watch, but the main thing for me was the Alarm mode, as it allows up to 200 alarms a day! And that was super easy to get up and running.

My tremors still remain, not as bad as they were when I went to the ER, but still enough to make me feel like I’m trying to walk on Jello, and it gets worse as I get tired later on in the day. I use the walls and the furniture here in the house to steady myself, and I have managed to do without my cane at church, by the hardest. But anywhere else we go, like our Date Day, or to go out to eat, I’m using the cane. The hand tremors are also more prominent, and don’t seem to ever go away completely, but I can handle a fork and spoon OK, and type, so I can live with that.

My biggest problem has been the odd about to pass out feeling I’ve been getting after lunch and supper, but not breakfast. We’ve checked my blood pressure during a couple of these attacks, and it’s always low, like 98/58 low. I can’t do much but sit very still and wait for the feeling to pass. I have found that eating something sweet makes me feel better, but that may just be because it’s a comfort food for me. Or, it may means that this feeling is from a low blood sugar situation, rather than a low blood pressure one.

We may have narrowed it down to being an interaction between the Sinemet and the protein in my meals. Yesterday, just as a test, I had a vegetable lunch without any meat, and I did not have the weird feeling later on. So, I’ll try that again for a few days, and see what happens.

Dear sweet hubby took over the compost making task for me for the last couple of weeks, but I did it all by myself this morning. I’m very tired, but feeling good that I was able to accomplish it. I’m also sweeping off parts of the driveway almost daily now, and the deck and patio underneath every once in awhile. That gives my arms and shoulders a good workout, and it’s good for my balance, too. I’m also using the trekking poles the whole time at the track now, where I usually do 3 laps, and then the leg exercises and my Tai Chi. My balance is still way off, so the Tai Chi looks pretty ragged, but I’m doing it anyway. After all, nobody but me knows just how pitiful my form is, right? 😉

So, I see progress with several areas of concern, but disappointment that I am in nowhere near as good a shape as I was before I had the Celestone shot that sent me to the ER.

I continue to try my best to live each day with a positive outlook, and I think the Bentyl has helped with the depression I was dealing with.

Tummy in Rebellion

Day by Day with a Movement Disorder Posted on by 6

Warning: This post is not for the weak stomached!

Today did not go well at all. I followed my list of med times, trying to spread out all the doses as much as possible. I was careful to take the ones that needed to be with food, and the one that needed to be without food at appropriate times.

Before I could finish sipping my hot tea this morning after breakfast, I moved to get up from the sofa to go to the bathroom, and all the liquids I had taken in over the last hour – juice, water, and tea – all came up explosively all over me and the sofa, propelled by all this gas I have. It’s as if my stomach is stopped up at the bottom and couldn’t hold it all. That is called Gastroparesis, which means slowing of the emptying of the stomach, and is quite likely part of my problem. Really, every part of my digestive tract shows signs of weakening, so I shouldn’t be surprised when something like this happens. That didn’t make it any less upsetting, though, as DH had to quickly do a wash before all that acid ruined my clothes, while I took a bath, and we had to try to get our sofa cleaned up, too. And, I’ve stayed nauseated most of the day, just as I did when I tried to take Sinemet last year.

From what I’ve read from other PWP, many people get over the nausea fairly quickly when they start Sinemet, so I sure hope I will be able to tolerate it this time. I was much sicker with the GERD last year when I tried to take it than I am now, so there is reason to be optimistic, which is what I choose to be.

I see my Gastroenterologist tomorrow, and I have an appointment with my Neurologist next Friday, so maybe I will know what needs to be done soon to get the benefit, and not the side effects, of my meds.

Day One with Sinemet

Day by Day with a Movement Disorder Posted on by 6

Yesterday was the first full day of taking Sinemet again, as well as the Requip and Zelepar I was already on. I also had the Lodosyn and Sucralfate I requested from the ER doc, so that the Sinemet had a better chance of not making me so nauseated, the way it did last year. I started the morning hardly able to feed myself or walk, but ended the day almost back to my normal state. That was a huge relief, to say the least!!!

I also talked to my Gastroenterologist last night, but without any real conclusion to my gas and belching problem, or my elimination difficulties. He basically just asked me a lot of questions, most of which I could not give him any clear cut answer to, and told me to go on and make an appointment with him. I told him about the ER trip, and how I had been delaying my Neuro appointment, waiting for a diagnosis. He said to go on and make the Neurologist appointment, so I’ll do that today. The fact that he has taken so long going over all the diary I gave him, plus his obvious quandary as to what is going on, leads me to think that a serious diagnosis is not jumping out at him as likely. That is what I’m going to assume, anyway.

The comical part of all this was trying to figure out a schedule to add in three more meds, taking into account all the restrictions on timing and eating and nearness to other meds that each one has. I finally wrote out today’s schedule, and I’m taking one or more medicines today at 5AM, 6, 7:30, 9, 11, 12, 1:15, 3, 5, 6:30, and 8PM! And that doesn’t count the Myralax that goes on my cereal or the glycerin suppositories I use! You should see the size of my pill boxes!! Oops, my timer just went off…. time to go take medicine LOL!

Well, I’m back. I just took the Sucralfate, a hog pill that I had trouble swallowing yesterday. Last night we cut it in half, but I still choked on it, because it’s so dry going down. So, this morning I soaked the two halves in a tablespoon of water, and swallowed that. That was much easier, although I can still feel the dry scratchiness down my throat. That’s one of my new stomach protector meds, so I have to take it, uncomfortable or not.

Each day is a new adventure with this PD, with some days being hopeful and others being miserable. Thank goodness I don’t often get as down as I was Sunday night. I thank God for that!! And, I thank you for caring enough to say an encouraging word, too, as I surely need it.

Walking on Jello

Day by Day with a Movement Disorder Posted on by 6

The saga of drug interactions continues, evidently. I had a Celestone shot on Thursday to get the poison ivy under control, as a steroid shot always does the trick for me. My regular doctor has given these to me several times in the last few years, so I was not surprised when I woke up very nervous Friday. That’s pretty much par for the course, plus they make it hard for me to sleep, too. So, I tolerated the shakiness Friday, and we continued with our Estate Sale hunting and went to see our younger DD for an overnight stay.

By Saturday morning I was even shakier, but we had a long way to drive home. I kept the way I was feeling to myself, figuring it would go away, and I did feel better after we ate a big breakfast. But, this morning, I was in really bad shape. I was shaking all over and holding on to furniture and the walls to get around. When my hubby got up several hours after me, I was worse. So, I called the Neurologist’s answering service and the doctor on call promptly called me back. After listening to all this, he told me to go to the ER. He said he was concerned it was an infection (I didn’t think so, but?) and they would be able to give me something to stop the tremors. So, we were off for the hour long drive to get to the ER, with DH trying his best not to show just how worried he was about me, and me trying my best to be still.

They took me right away, but it still took quite awhile to get the results from all the blood work they did. They did not find signs of any infection, and concluded, just as I had, that the steroid shot had precipitated this acceleration of my symptoms. So, armed with four prescriptions and orders to see my Neurologist this week, they sent me home.

So, at least for now, I’m back on Sinemet, which is the “Gold Standard” drug for Parkinson’s. Since I was so nauseated with it when I took it for the Sinemet Challenge that confirmed my Parkinson’s diagnosis, I had asked the ER doctor to also give me a prescription for Lodosyn, Carafate, and Phenergan. This is where my journal of everything that has happened since my diagnosis came in handy. I was able to show him in my journal that this is what my own Neurologist had put me on way back in September of 2006, when I got so nauseated with the Sinemet.

So, I’m typing this with a fairly steady hand, with all these extra meds in my system. I have an appointment tomorrow with my Gastroenterologist to find out what he thinks is going on with my digestive tract, and as soon as I know what is going on in that area, I will make an appointment to see my Neurologist.

This whole experience has been very upsetting to say the least, not only for me, but for DH as well. I hate it that he’s having to take care of me the way he’s had to. I hate it that I couldn’t stop myself from shaking. I hate it that the ER guard came immediately, being so very solicitous, wanting to get me a wheelchair, as I was obviously so feeble looking, wobbly cane and all. I hate being this way. Today I got a glimpse of what the future holds. I hate it.

Another Great Day!

Day by Day with a Movement Disorder Posted on by  

We had a wonderful Date Day yesterday, with beautiful Fall weather, and some really nice finds at a handful of garage/moving and Estate sales. Because of the direction we headed, DH didn’t have to deal with horrible Friday afternoon traffic when it was time to head home, like he usually does, so that made it even better.

We ate out at a buffet, so I was able to find plenty that I could eat, while he could get what he wanted. I’ve gotten in the habit of taking a couple of Beano caplets before I eat, anytime I even suspect that I’m going to eat something that might produce gas, and that seems to be helping, too. All and all, I seem to be settling into a pretty good idea of how to eat in such a way as to protect my stomach, as things have been pretty calm for several days now.

I wrote to the Ask the Doctor mailing list on the National Parkinson’s Foundation site last week, and my post showed up in the email today. It takes about a week between sending in a question and getting an answer, as these are practicing physicians, who take the time to answer the questions. I had asked the mailing list doctor if he could suggest any meds that I could take in patch form, to bypass my stomach.

The doctor suggested I try the form of Selegiline, called Zelepar, that dissolves under the tongue and bypasses the stomach, and also go back to Sinemet, with a larger dose of Lodocyn. According to him, Requip causes more nausea than Sinemet does. My Dr. S. had said he couldn’t promise that the Requip wouldn’t make me more nauseated, but that he wanted to give it a try.

So, for now, at least, I’ll stick to the Requip, but if the nausea and bloating start up again, I think I’ll make an appointment with the Neurologist for as soon as possible, and see what he says about the Parkinsons’s Foundation Doctor’s suggestion.

Feeling Better and Optimistic

Day by Day with a Movement Disorder Posted on by 6

The Zelnorm seems to be helping, plus I’ve made a few minor changes in the way I take some of my other medicines. I’m taking my first Protonix when I first wake up, and then I’m not drinking any water after that for a half hour. I can usually drink at least 8 oz of water, sometimes more, before it’s time for my PD medicines, an hour before breakfast. Then, a half an hour before I eat, I take the Zelnorm.

I spread it out again in the evening, taking the other Zelnorm a half hour before a very light supper. The other Protonix is about 8:00 PM, and that’s the last water I get for the day. I make every effort to get at least six 8 oz servings of water every day.

The Gastroenterologist doctors have taken me off of all milk products, sodas, chocolate, and gum, plus I can’t drink out of a straw or drink anything with my meals. I’ve finally adjusted to not drinking anything with my meals. I had already stopped the rest on my own back in September, when the GERD acted up, except for cottage cheese. Now I can’t have that, either.

The belching is still there, but the yucky feeling is gone, and so are the cramps and bloating. I’m eating cautiously, but much more normally and better quality, too, so my strength is returning.

Tomorrow I see the Neurologist to get the prescription for whatever dose of Requip he thinks will be appropriate for me. And it’s also my last day to take the Sinemet, I hope! So it’s a day to look forward to!!

Went to the Doctor’s Yesterday, Keeping Fingers Crossed

Day by Day with a Movement Disorder Posted on by 2

I ended up calling both the Gastroenterologist and the Neurologist yesterday morning, as I really couldn’t decide which one to call. Both answered my message in a timely manner. The Neurologist said to take Mylicom for the gas, but the Gastroenterologist wanted to see me that afternoon. I couldn’t see my regular doctor, as he was out of town, but I was just glad to get the appointment.

Dr. M poked around on my stomach and abdomen and it was extremely painful. He asked a lot of questions, as you might expect, and, since I’ve been keeping a journal ever since I was diagnosed with Parkinson’s, I was able to give him some pretty accurate answers as to onset, etc. He agreed that it is more than likely the Parkinson’s meds that are causing the problem.

He gave me some samples of Zelnorm to try, plus a prescription if it seemed to be helping. He feels like that will help my digestive system work better and perhaps solve my problem. I surely hope so.

Still Puny Today

Day by Day with a Movement Disorder Posted on by 5

I wasn’t as sick today as I was yesterday evening, I don’t think, but I still felt pretty rotten today. I really didn’t feel like trying to go to church this morning, and we didn’t have the service at our church this evening, because it was the Fifth Sunday Singing. That rotates around among the churches in the area, and I wouldn’t have gone to that, anyway.

I’ve tried to do the research on the Internet today, to decide if it’s the Sinemet or the Requip doing it, since I got sick Saturday, after I had upped the dose of Requip on Friday. The dose is pretty good sized now, so it may be the Requip. That makes me think I need to call the Neurologist, rather than the Gastroenterologist, in the morning. I don’t think I can wait until my Thursday appointment. I’m losing weight awfully fast, because I’m really eating very little. I just don’t feel like putting anything in my stomach right now. It’s much too uncomfortable. And I’m getting weak again, too.

I’ll be glad when this whole medicine regimen is worked out, and my digestive system settles down!!

Oh, another side effect is definitely showing up. I’ve suspected it for some time, but now I’ve let enough time go by to be sure — I’m beginning to lose my hair. I wear it really short anyway, so it’s not going to be long before it’s noticeable on top. But this is a vanity issue, and doesn’t effect my ability to eat or move or anything important, so I can live with it, even though it would have been nice if this particular side effect had passed me by.

Today My Balance Worked

Day by Day with a Movement Disorder Posted on by 4

I could tell when I got up this morning that my balance was back to “normal.” This fluctuation in what I can do is something I’m just going to have to get used to, I guess. I did manage to get several descriptions done for eBay, but I didn’t get them on last night, because DH had a called Deacon’s meeting that didn’t get over until about 9:00, so we were late getting home. I don’t like to post items after 8:00, so they’ll go on tonight.

All the Deacon’s wives stayed in the Fellowship Hall, where we had been for Wednesday night Prayer Meeting and Worship, and visited with each other. It’s been a long time since I stayed for one of those informal gatherings, and I really enjoyed it.

It was also the first time I let them see me walk any without the cane. This on and off way it effects me is hard to explain to people, so I’ve been avoiding having to explain by using the cane at church all the time, whether I thought I needed it or not. Now that the med doses are higher, and I’m exercising more, my balance and leg strength are better more days than not. I still need the cane for certain situations, so I carry it everywhere, but I don’t always use it.

My main difficulty continues to be my digestive system. I’m just trying to wait out another week, as that’s when I’m completely off the Sinemet. If all the nausea, gas, cramping, and just generally feeling lousy don’t stop then, I’ll have to change my Gastroenterologist appointment to a sooner date. I’m just telling myself to be patient for now, over and over and over.