Still Having Problems, But I'm Sleeping Longer!

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

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

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

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

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!

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

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

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

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

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.

Still Increasing Requip Doses

I'm still increasing the dose size of the Requip very gradually, and this week I'm only taking the half Sinemet and Lodocyn twice a day. I'm not up to a full Requip dose yet, because my walking is not up to normal yet. I can still feel the trembling, particularly on my right side. I can't balance on my right foot, either, and it's still difficult to go down steps without holding on and being very careful. But it's getting there. I see the Neurologist again the first week in November, so he should be able to tell by then just how much more Requip I need. Hopefully, when I get off the Sinemet, my tummy will settle down completely. I sure hope so.

I'm continuing to try to get just as much exercise as I can, and we're eating as healthy as we possibly can, too. I've even started back to putting items on eBay. That's something I just about had quit doing, while I was so sick with the colitis, and when I was having so much trouble walking. I need to get back to a regular routine, though. We can't keep going to the estate sales if I don't start selling some of our purchases, right?

Tai Chi Form Was Good Today - Tummy Wasn't

I've increased the dosage of the Requip, but I haven't yet cut the amount of Sinemet, other than going to the half tablets four times a day. It really showed today when I went for my second Tai Chi lesson. I could tell the difference immediately, as I walked around the mat to warm up. Just walking was much easier. Doing the form was much easier, too, and I only had to stop once for a walking break. I was very pleased with my progress.

I've not been pleased with my stomach, though. Just drinking some water after we left the gym set my abdomen to cramping. After lunch, which was a particularly bland one, the gas got so bad that I had to take some Gas-X. I was really in a lot of pain way up in my chest. After I took my 4:30 meds, my stomach was very tender.

I'll be cutting the Sinemet down to just twice a day on Friday, so hopefully my tummy will begin to get better then. If it doesn't, I'll have to call the Gastroenterologist again.

Results of Endoscopy and Ultrasound

Yesterday I had the Endoscopy and Ultrasound to try to determine why I'm having such a terrible time with the acid reflux. I've been diagnosed with GERD now for several years, so I generally know what I can and cannot eat. I really thought it was the Sinemet that set off the reflux, but my Gastroenterologist wanted to be sure it wasn't a lingering infection from the severe colitis I had been plagued with for so long.

Anyway, the tests showed nothing but irritation, not infection, and no sign of gall stones or anything like that, so it was the medicine after all. My own doctor had been called away, and one of his associates, who is not familiar with my case, did the endoscopy. His orders were to take the Parkinson's meds with meals, which, of course, I'm not supposed to do. He also prescribed Carafate and a week's worth of probiotics, and to continue the twice a day on Protonix. All this is designed to settle down my tummy and soothe my esophagus.

As for taking the PD meds with meals, I'm not going to do that, but I do eat crackers with them each time, to try to protect my stomach. Hopefully, by the time I'm weaned off the Sinemet and fully titrated onto the Requip, I won't have the conflict with the meds, anyway.

If I still have problems then, I'll have to try to get the Neurologist and the Gastroenterologist to talk to each other and decide what's best for me. I don't like being the go-between for doctors. They need to discuss this with each other!

I had read that Parkinson's meds and Parkinson's itself could cause a person to react differently to anesthesia. Well, there may be some truth to that. I slept until 6:30 PM yesterday evening after we got home from the endoscopy, and then I went back to sleep about 10:00 and slept all night until around 6:30 this morning!! I just about lost yesterday!! I'm fine today, with no ill effects at all.

My Prayers Have Been Answered!!

I've been going to doctors for years with strange symptoms that came and went, that they never could explain. Most of them were attributed to stress, which made sense, but I was never satisfied with the diagnosis. Today, the Neurologist officially gave us the diagnosis of Parkinson's Disease, and even though that can mean years of debilitating illness, it doesn't have to be that way. Every PD patient is different. I'm just so relieved to have an explanation for what's been happening to me, particularly for the last year, that I have been celebrating all day long. Now I have an enemy I can fight!!!

Doctor S has given me the directions today for weaning off of the Sinemet and changing over to Requip, which is a dopamine agonist. There's no way of knowing if I will be able to use it instead, without trying it, so the next 4 weeks will be another trial. Sinemet is the gold standard of PD meds, but it only works for a limited number of years, before the side effects cause as much trouble as the PD does. So they try to delay starting "younger" patients like me on it, if they can help it. (I don't call 63 younger LOL)

We also asked about exercise, and he said for me to walk for 30 minutes a day for 4 days a week. From my reading I've found that Tai Chi is good for Parkinson's patients, and I've already had some training. I went to the gym on the way home today and talked to the Sensei about giving me some private lessons two days a week for 30 minutes to help me build my balance and stamina again. And Dr. S said I need to do some weight bearing exercise, too, so I'll be getting back on the mini trampoline, too.

Today is a new beginning for me in a very real sense, and I thank God that I have been diagnosed early, so I have time to improve my health as much as I possibly can. I thank you all for your prayers.

My Arms Were Swinging This Morning!

Such a little thing, that we take for granted, and don't even notice ... when you walk normally, your arms swing quite naturally at your sides, without any thought on your part. Well, that's not the case for someone with Parkinson's, and it hasn't been that way for me, either. In fact, I have tried to consciously do it, and I couldn't remember how to coordinate it at all.

Daddy has a long hall at his house, and I noticed for the first time this morning when I walked down it that my arms were swinging again, quite naturally. This is quite an accomplishment, and is sure evidence that the Sinemet is working.

I go to the Neurologist tomorrow, and I'm very excited about seeing him. I'm hoping for a definite diagnosis this time, so I can get down to the business of dealing with handling the meds and my GERD. I'm still having a lot of trouble with that, but I have the Gastroenterologist appointment Friday. It seems to all be coming together.

I'm praying for some definite answers. I realize that Parkinson's is not something anyone would want to have, but knowing is better than not knowing, any day, IMVHO!

Acid Reflux Still, Plus Procrastination????

The last few days have been relatively uneventful, so I haven't been posting. We enjoyed our Date Day, and the cane certainly made things easier to navigate than the walker did. My muscles had a good workout for the day, and I could tell it Saturday, but that's OK. The exercise is good for me, and getting out of the house is even better.

I'm still fighting the acid reflux, though. I can't seem to get it stopped, and my throat is definitely irritated. I've played around with the timing of my meds, eating some crackers when I take the pills, and I think that's going to be the right thing to do. I've also upped my water intake, as that is good for my throat. I've been experimenting with when to eat supper, too, in relation to taking that last Sinemet. Yesterday, I took the third one at 4:30PM and ate supper at 5:30. That seemed to work pretty well, as it gives me time to empty my stomach before I get sleepy at 8:00PM. Sometimes I can manage to stay awake later, but not always. But then I'm wide awake at 4:00 or 5:00AM in the morning. I've always been an early to bed, early to rise sort of person, so this is nothing new.

What is new, that I'm just now coming to terms with, is that I'm procrastinating on paying bills, and I really don't know why. I've been doing it for months now, even letting some credit cards get late charges. DH gets very upset with me, and I have no defense, because he's right. I have plenty of time to get it done, and spend way too much time on the computer. It just seems like every time I think about doing certain things, I talk myself out of it. I'm wondering if this isn't a sign of depression, as this is just not like me at all. Or maybe it's a PD symptom? Or maybe I've just gotten lazy!!

Sinemet Is Working Again

My legs are almost back to normal again, thank goodness. My GERD is still acting up, though. The nausea is gone, but now that my tummy has been jangled, it just doesn't want to behave itself. My throat is staying sore from the acid backwash, and I'm still getting some acid in my mouth. I'm still on the super blando diet, trying to calm everything down, but no luck so far.

Otherwise, I had a very good day yesterday, and I'm getting off to a pretty good start today. I've been so inactive around the house for the last six months, depending on DH to do just about everything, that I need to get busy and help clean up around here. He's had his hands full taking care of me and the house, and it's been the house that's suffered. We've reached that clutter point where it's hard to clean up, because it's so overwhelming, know what I mean? I hope to have the dining room table all cleared off before he gets back from grocery shopping this morning. That will be a start, anyway.

My Legs Were All but Frozen this Morning

It was all I could do to walk this morning, so for the first time ever, I used the cane when I went to fix breakfast for Daddy. Before I was on the medicine, I was able to hold onto furniture and walk enough, so I could hide how bad off I was from Daddy, since his vision is so bad. But I didn't have a choice this morning. He was upset, but I couldn't help it. I've been gradually telling him what's going on, so I could keep it from being such a shock, anyway.

Our pharmacy does have voice mail on when they're not open, so the doctor's call went through yesterday evening. Trouble is, our pharmacist doesn't have the medicine and can't get it until tomorrow. So we checked with a nearby town's CVS, but they didn't have a full amount of the prescription. My DH got the prescription, but it took several hours for it to be ready.

We finally got the medicine about 1:00PM, so I took the Sinemet and the Lodosyn together, and I had a baked potato for lunch at 1:30. I dozed a bit, but so far the legs are still very wobbly.

Lodosyn is an additional dose of Carbidopa, added to the Carbidopa that is already in the Sinemet. It does not help with the Parkinson's symptoms, but it helps control the bad side effects of the Lodopa in the Sinemet, which is what changes into Dopamine in the brain. That helps to replace what the brain is no longer producing.

Nutrition Suggestions for GERD plus Sinemet

After spending this weekend nauseated, it is obvious that I'm going to have to be very careful not only with when I take my medicine, but also with what I eat. After doing a lot of research on my own, and getting a general idea of what I need to have, I was at a loss as to how I was going to decide on a diet, taking my GERD into account.

So I wrote to Jackie, a fellow BLOG VILLAGER at The Vegan Diet, who was kind enough to put together some information for me. She's done such a wonderful job of pulling together just what I needed that I thought it might help someone else, so here are her suggestions.

I see with GERD you must steer away from :

* fatty or fried foods * peppermint and spearmint * whole milk
* oils *onions * chocolate *high sugar content * creamed foods or soups
* most fast foods * citrus fruits and juices (grapefruit, orange, pineapple, tomato)
* coffee (regular and decaffeinated) * caffeinated soft drinks * tea
* other caffeinated beverages *Spicy or acidic foods


You can have :

apples, berries, melons, bananas, peaches, pears
chicken (no skin), fish, turkey (no skin)
fat-free milk and yogurt
milk free breads
a miniscule amount of fat or butter

Basically my advice is lots of small meals a day, not three meals a day. I eat 5 meals a day, like many people do now for many medical conditions and to keep weight average (not under or overweight), as it keeps my IBS and my sugar levels on track. A few ideas below, not totally vegan, plus useful links at the bottom.


Breakfast

Fruit is good. Papaya is the best I find when I am acidic. Herbal tea (not mint)

Mid morning

Fruit Apples, melon, bananas and nuts like almonds and walnuts (most nutritious).
or Bean dip (chick peas or beans blended with a tiny amount of oil just to make it cream cheese consistency and a fresh herb like cilantro) on a slice of white or brown bread (not seed bread or wholewheat)

Lunch

Tofu dip (no oil with it) with raw vegetables like carrot sticks or
Veggie Soup with tofu cubes

or this Fish Dish recommended by a GERD sufferer:

This recipe is for one serving. Increase the ingredients for additional servings as needed.

One 4oz filet of white fish (orange roughly, sole, turbot, flounder, etc)
One med. Potato. Steamed green vegetable such as broccoli, spinach, peas or asparagus
Parsley or chives for garnish. ¼ tbsp unsalted butter, olive oil or Pam

We will start with the potatoes, because they take the longest to cook, and they tend to retain their heat the longest. The fish and vegetable take only minutes to cook.
Peel and cube potato. Place in cold water to cover. Bring to the boil, and then simmer until fork tender. Drain, leaving just enough cooking liquid for mashing or whipping. You may also use the vegetable broth (recipe below) instead. Add salt to taste. Hold in a warm place. Season fish with salt and pepper to taste. Place non-stick sauté pan over med high heat. Add butter, oil or spray with Pam. When not quite smoking, add fish. Cook two minutes, turn and cook other side for two minutes, or until the filet is light brown and cooked through. If the filet is very thin, one minute on each side may be enough. (You can broil or bake the fish if desired). Serve fish on top of mashed potatoes, surrounded by the steamed vegetables. Garnish with chopped parsley or chives.

or Savory Lentils with Texmati Brown Rice

1/2 lb of organic green lentils (2 ½ cups), rinsed 4 cups water or stock
1/2 onion, chopped 1 cloves of garlic, chopped 2 carrots, sliced
2 stalks celery, chopped 1 bay leaf 2 sprigs of thyme, or ½ tsp dried
Organic Texmati brown rice (follow instructions on package)

To a large pot bring water and lentils to a boil. Add other ingredients. Reduce to the simmer, partially covered. Cook until tender (about 20 to 30 minutes), stirring occasionally and adding more liquid as needed.. Remove the bay leaf and thyme sprigs. Season with salt and freshly ground black pepper to taste. Serve over organic Texmati brown rice. Garnish with chopped parsley. Serve with a light green salad, dressed with the lemon chive dressing above.

Mid Afternoon

Herbal tea (not mint) or glass of strawberry soy milk or flavored fat-free yogurt

Early evening (best for supper)

Grilled or dry stirfried turkey or chicken without skin and steamed or stir fried veggies and mashed potatoes/baked potato or pasta

or Broiled Burgers with Mushrooms and Rice

1 lb lean (10% or less fat) ground beef
1/4 cup seasoned bread crumbs
1/2 tsp dried rosemary (crushed)
2 tsp dried parsley, divided
1 egg white
Nonstick vegetable cooking spray
1 tbsp olive oil
2 cups mushrooms
1 cup fat free skim milk
1 tbsp flour
1 1/2 tbsp Worcestershire sauce
1/4 tsp salt
1 cup long-grain brown rice, cooked according to directions

In a bowl combine ground beef, bread crumbs, rosemary, 1 tsp parsley, and egg white.
Mix well and make into four 3/4" thick patties. Spray a broiler pan rack with nonstick vegetable cooking spray. Place patties on rack and broil 3 to 4 inches from heat for 5 to 6 minutes on each side or until desired doneness. Put olive oil and mushrooms in a skillet sprayed with nonstick vegetable cooking spray over medium-high heat. Cook 3 to 4 minutes until mushrooms are soft. Combine milk and flour together in a bowl. Add mixture to skillet. Add Worcestershire sauce, the remaining 1 tsp parsley, and salt. Stirring constantly with wire whisk, cook sauce 3 to 4 minutes until thickened. Serve mushroom sauce over broiled burgers with hot cooked brown rice. Makes 4 servings.

3 hours before bed

Another snack like a banana or a cup of clear soup

***************************
Gerd friendly recipes - Vegan and meat eaters (index in right column)

Fat Free Vegan and Vegetarian Recipes

Non Vegetarian Dairy-Free (lots of ideas and substitutes)

VegWeb Fat-Free Recipes plus tons of other recipes that should be suitable

Free Vegan Cookbooks (fabulous ideas) to download

Physicians Committee for Responsible Medicine:
Parkinson articles

I had asked Jackie to help me find foods that would be suitable for a GERD diet and take into account the fact that Sinemet cannot be taken with large amounts of protein. I'd say she went out of her way to be helpful, wouldn't you? But I shouldn't be surprised. Every post she has on her blogs is just this thorough.

I can't thank her enough for all this information, but I can ask you to visit her blog, so please stop by

Having My First Bout of Med Side Effects

The nausea started yesterday evening, and it's continued today. I wasn't having any until I changed the Sinemet dose from after meals to before meals. But the more I read, the more it seemed that the way to get maximum benefit from the dose is to take it 30 min to 1 hr before meals. That gives the medicine a chance to get out of the stomach before the food hits it. I am eating a few crackers with it, though, out of necessity. Crackers don't have any protein in them worth counting, so they won't cause absorption problems for the Sinemet in the small intestines.

I really think I just ate too many grapes the last few days, trying to increase my intake of antioxidant foods. Since I have GERD, too, it's hard for my system to handle any citrus fruit. Plus, I've been drinking Powerades to keep my fluid intake high and boost my vitamin K. I'm on a diuretic to keep my feet and ankles from swelling, so I need the fluids and the K, too. I had gotten tired of bananas when I had colitis so long, but I guess they're back in my diet, along with plain water.

I'm eating macaroni and cheese for lunch, and I'll stay on the "white diet," I call it, until my tummy calms down.

Developing Our Plan of Attack

In order to understand my approach to having a chronic illness, you need to know a little about me and my side of the family. My grandmother had and my Daddy has Macular Degeneration. My Daddy has been legally blind now for over 30 years, gradually losing more and more of his sight, but never doing anything to prepare himself for being blind.

I've said for years that if I were ever diagnosed with the beginnings of MD, I'd immediately start learning Braille and take classes on how to take care of myself from a low vision standpoint.

My approach to any illness is to search the Internet for every bit of information I can find. I have a Chemistry major, with a strong background in Biology and Biochemistry, so the technical papers usually make at least some sense to me.

With that said, it shouldn't be so surprising that I've spent almost all this week researching everything I can find about Parkinson's Disease. I've found bits and pieces of information on various sites that I've bookmarked for myself, but the links that have the most information, presented clearly, I'll be listing in the right hand column.

DH and I are working together, bouncing ideas around as we try to understand how to balance the medicine with the foods that interfere with the medicine, but are necessary for good health. I did my first set of the PD exercises today, and DH bought a different cereal for me, based on the nutrition information I found.

By the time I see the Neurologist again, I should have a good idea what I need to ask him about. Of course I'm still assuming the DX is going to be PD, but at least I feel like I'm doing something besides waiting for the next appointment.

I Don't Want to Jinx It, But ....

I think I'm better! I didn't dare write anything yesterday. In fact, I was in a bubble of enthusiasm all day, afraid to say the words out loud, for fear it would burst the bubble, and my legs would feel like two ton weights again, slogging through mud.

I've been on the Sinemet since Monday night, and I woke up yesterday walking amazingly better. I wouldn't call it normal, but for me, it was a vast improvement. I was also aware of being happier than I have been in quite some time, but then who wouldn't be! I noticed that even my upper body movements were faster, which I really hadn't realized had slowed down.

I think I spent every spare minute all day long thanking God for this miracle. I really over did the physical work, though, as there were so many things I've put off doing, because I just haven't been up to it. I'd work for awhile, and then rest, and then work awhile longer. My leg muscles are telling on me today, for sure, but I'm proud of what I was able to accomplish yesterday.

We didn't tell anybody at church last night, and I still used the walker. I don't want to say anything until we get an actual diagnosis, and that will be on my next appointment. From what I've read, Parkinson's symptoms can fluctuate, so one moment can be better or worse than the next, so for now I don't want to have to explain.

We have decided that if we don't find one of those adjustable canes with the extra legs on the bottom at an estate sale tomorrow, we're going to buy one. At the rate I'm going, I may not need the walker much longer. My balance is still not good, so I'll use the cane, and we'll keep the walker in the car, in case this doesn't last. That's the plan for now, anyway. The balance thing is probably from the Peripheral Neuropathy, anyway, and I don't think he can do anything about that, except to monitor it to see if it progresses or improves.

If I Could Dance ... I Would!!!

I went to the Neurologist today, and I feel like I had a very productive visit this time. He is agreeing with the diagnosis of Peripheral Neuropathy, but he thinks something else is going on at the same time, as not all my symptoms seem to fit that diagnosis. First of all, the heavy metals test came back negative, so we don't have to worry about the EPA site, at least. All the other blood tests came back OK, too. One test is having to be done again, as the lab goofed on that one.

Anyway, he's given me a prescription for Sinemet to take for three weeks and then see him again to see if it makes a difference in my walking. This is a Parkinson's medicine, which is what I've thought he was thinking all along, since Mama had Parkinson's. She didn't have tremors, and I've only had some shakiness when I was weakened by the colitis or really tired.

I finally feel like I'm getting somewhere!!! At least in 3 weeks we'll know if it's Parkinson's or something similar, and I really think it is. I'm looking forward to being able to walk better. I know I shouldn't be getting my hopes up so, but right now I'm almost ecstatic!