Looks Like I Can Cross Sleep Apnea OFF My List!!

I have slept longer and waked more refreshed almost every night now for over a week with the dental appliance set to a very comfortable amount of lower jaw extension. I'm not having as much trouble with daytime sleepiness, except for the odd woozy feeling I get after lunch. So, unless something unforeseen happens, I am going to cross Sleep Apnea off my list of problems! That feels so good, to have one less thing going wrong with me.

My neck continues to spasm, so I guess in a way I have traded one problem for another. But I know that will either work itself out, or I can go to my Orthopedist and he will deal with it. If it has not relaxed by Monday, I will make an appointment. I suspect he will give me a prescription for some Physical Therapy. That's why I stopped going earlier this year when my knee was so painful. I wanted to be sure I had some PT time left, as my insurance only covers 15 trips a year, I think it was. Anyway, I know I have some sessions left, and that will be enough to get this painfully stiff neck relaxed, I'm sure.

I am in an optimistic mood, and have been for some time now. It feels glorious!! Even my elimination seems to be getting back to normal. The combination of Bentyl, the antispasmodic and mild antidepressant, the extra Metamucil capsule, and the Acidophilus, have done the trick. I still have gas problems, as I try to figure out which foods I will have to delete from my diet, but that is so minor a problem compared to what I was dealing with.

So, this is going to be a great day! I just feel it!!

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.

Drug Interaction Still Causing Problems

I went to the Gastroenterologist Wednesday afternoon, and he did X-rays of my abdomen to determine if I was as constipated as he thought I would be, based on my symptoms. He was surprised to find that nothing in my colon was hard or compacted. After examining me, he has come to the conclusion that my problem is caused by spasms of the digestive tract, rather than weak muscles, as he had been telling me it was. So, now he thinks my trouble is exactly the opposite of what he had thought previously!! He prescribed Triavil, which relaxes the colon muscles, and he said I should feel much better by Monday.

I've learned my lesson though, so I specifically asked him if he was sure I could take this med with my Parkinson's meds. He said he did not think this would be a problem, but to ask my pharmacist. Full of hope that he had found a way to stop my very uncomfortable situation, I called our drugstore on the way home to be sure he had it in stock. But, when hubby came back from the drugstore, he didn't bring in the prescription bag. He said the pharmacist said his computer all but crashed when he put in the medicine, it produced such a strong warning that this was a dangerous combination with my other PD meds!!

At first I handled the news stoically, but later on that evening I went through a rough time of being very depressed, with lots of crying. I called my doctor's nurse first thing Thursday morning to let her know I couldn't take it, and to remind her that he would see Selegiline listed in the interaction information, rather than Zelepar, which is just a dissolving form of Selegiline. I think that must be why he didn't realize I couldn't take it.

Anyhow, I haven't heard back from him yet, so DH and I decided it was time to take matters in our own hands. We went enzyme, herb, and spice shopping, as I have been doing some research on my own about Irritable Bowel Syndrome (IBS), and I found some things that should help, without causing problems.

Yesterday, I started taking Turmeric, St. John's Wort, and Acidophilus capsules. DH's Oncologist has had him on Turmeric ever since he had colon cancer, and his doctor had already suggested I use it. We had our usual Date Day today, and I continued to belch a lot all day, but did not have any nausea at all, or my usual sensation as if my food was sitting at the top of my throat all day. I'm encouraged that I will find a way to calm my system down and get things back to closer to normal, whether my Gastro can find a medicine I can take or not.

I'm still very wobbly, though, so I used the cane just about everywhere we went today, and I'm using it in the house tonight, too. It may be that it's just going to take awhile to recover from the really bad state I was in Sunday, plus I may still have some of the Cortisol in my system. I'll have to see if I can find something about how long it stays in the system after getting an injection. Or, it may be that the St. John's Wort, added to my other PD meds, is giving me an overdose of Levadopa.

That's what makes figuring this all out so difficult, as too much PD meds makes for jerky movements, called Dyskinesia. If you've seen Michael J. Fox jerking around, you've seen it. When PWP have been on meds for a long time their systems process the Levadopa in a very unpredictable way, and you see these wild jerking movements. But early on, if the meds aren't strong enough, you see tremors. It's hard for me to tell if my wobbliness is tremor or jerking, so I can't tell, based on that, if I'm getting too little or too much Levadopa. My hands are only shaking ever so slightly, which makes me think I'm not getting too much. My Neuro will know when he sees me.

By then I should have heard from my Gastro doctor, and I'll know if the herbs are going to do any good or cause any problems. I will be doing more research, too, to be sure there are no contraindications of these OTC with my prescriptions.

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.

I Told You I Have a Good Doctor!!

Well, I carried the phone around with me all day yesterday, even when I worked outside, just on the chance my Gastroenterologist would call. If it were any doctor but he, I wouldn't have even considered that to be a possibility. Sure enough, he called about 7:00 last night, apologizing for not having called sooner.

He had me describe my problems again, in greater detail. Even over the phone, it was difficult to go into minute specifics about my elimination situation. He wants me to keep a detailed diary for a few days of every single thing I put in my mouth, plus each symptom event I have. So, I started that last night. It's funny writing down the time and intensity of each belch and gas episode. ROTFL And it means writing down every bite and sip, including the ingredients of the different herbal teas I drink, but if it helps, it's worth it! He didn't think the Beano I had been trying for the last few days would do any good, though, so I didn't take them this morning.

I know many would not agree with me, but Dr. B's dedication, and that of other doctors I have, just convince me that much more that I do not want the USA to EVER go to a national health care system. What I read from blogs from countries that have it makes me think that they would not have a doctor going out of his way to call from his home on the weekend to help me with something that is chronic, as this problem is. I am quite willing to have government subsidized health care for those who can't afford it, but I am adamantly opposed to making it into universal health care, where I have no control over much of anything concerning my health. OK, I'm off my soap box now. ;}

Bits of This and That

I've been a good girl, and I've tried to use the C-Pap machine every night. I can only say try, because I'm still not using it all night long. I did manage to keep it on for 6 hours on Saturday night, and I thought I had it licked. Then last night I couldn't stand it past 1:30AM.

I'm pretty much used to the nose canula now, but the chin strap contraption is quite another matter. I'm going to call the tech again this morning for another appointment, since I only have another week before I'm stuck with whatever equipment I have after 30 days. I have Acne Rosacea, which normally is not a problem for me, as I quit wearing makeup, except for lipstick, many years ago. The reason I bring that up is that all these straps and bands is irritating my face. I'm starting to get red patches around my mouth where the chin strap is rubbing as I turn in the night. There are several other types of chin straps available, so I'm hoping she can find something else that I can use.

We're in the middle of a cold wave right now, with high temperatures in the 90's! So, DH got up this morning in the mood to go walking. We were out at the track at 5:15AM, and there were already people out there walking. It's really the only time of day that it's safe to be doing it right now. I did 3/4 mile, plus my knee and shoulder exercises, and the Tai Chi, while he did 2 miles. Not bad for the first time we've been there in several weeks. Of course, I've been walking around at home and working a little bit in the yard each morning, so I was not out of shape too badly. Maybe tomorrow I'll walk a mile, but I won't push it if I'm not ready. I learned that lesson really well.

The gas is still just as much a problem as it has been, and I'm supposed to call my Gastro this week to let him know how I'm doing. I'll wait a few more days, just in case DH's explanation is right. He thinks I need to give myself a few days for the colon to adjust after the GoLYTELY, and he's probably right.

I also noticed that the tremor in my hands is becoming more noticeable, and showing up more often. I've not had tremors up until recently. Balance wasn't so good yesterday, either. But I'm not in walking shoes on Sunday morning, and that could be it. I am wearing flats, with as much support as I could find, but I never feel as secure when I wear them. I'm not sure what I could wear that didn't look like athletic shoes, but I'm going to have to find something. Part of the problem right now is that I have more tissue swelling than I have been having. I've been on a diuretic for a long time, even before I was diagnosed with PD. But now, my fingers are so swollen that I can't completely close my fists. My ankles are badly swollen, too, and my weight is up, which I'm assuming is fluid.

So, I'm still dealing with lots of little problems, none of which, hopefully, are serious, but all are things that lesson my quality of life. I am thankful that I am in as good a shape as I am. Reading about all the problems that other PWP have makes me feel very blessed that I have a wonderful hubby to help me when I need it, and sympathize with me when I need that, too. I feel for those Parkies friends whose symptoms are so much more debilitating than mine are, and pray that they have a good day today.

No Surgery After All!! WHEW!!

I made the rounds of my doctors again yesterday, and the specialist my Gastroenterologist sent me to does not believe that my situation warrants surgery at this time. He would rather I continue to use all of Dr. B's arsenal of Bowel Retraining routines - glycerin suppositories daily, Milk of Magnesia every couple of days, bran cereal and prune juice daily, Miralax, and Amitiza. He also went over the list of what I can't eat again, and it seems to get longer each time I see him.

I'm not allowed to have

soft drinks of any kind
chocolate
nuts, particularly peanuts
any dairy products at all
cruciferous vegetables, such as broccoli or cabbage
beans
tomatoes
coffee
caffeine of any kind

And no telling what else that I can't think of right now.

It's hard to believe it takes all that to keep my system from bloating, but it does. Zelnorm was much better than Amitiza at producing a stronger muscle contraction through the digestive tract, but I'll just have to make do with the Amitiza, and hope they find a way to modify the Zelnorm and get it back on the market.

There's now an agreement among the doctors that my elimination problem is due by and large to the weakness of the digestive tract muscles, caused by the Parkinson's, rather than the anatomical problem that was recently discovered.

I liked this new doctor. He explained things very well, and took a lot of time with me. He explained why he thought surgery would be unlikely to have much of a chance of improving things at this time, and he also gave me some idea of what to watch out for, in case the problem worsened. I will see him again in 6 months, assuming all goes well.

I saw Dr. B, my Gastroenterologist, too, and he wants me to use the full complement of Bowel Retraining strategies for a week. If I am still bloated and having problems with gas and elimination, he will do another colonoscopy. I had one a year ago, with no polyps or other problems, so he really doesn't expect to find anything. But he knows I'm concerned, and the colonoscopy will ease my mind.

So, with no surgery in the near future, I can stop spending so much time on the computer, reading everything I could find about this problem. I really was beginning to obsess over it, but I learned a lot. I was extremely pleased that the surgeon pulled out his huge PDR and looked up the interaction between Zelepar and Demerol as soon as I mentioned I had read about it. He agreed that I could not have the Demerol if I had the surgery. I will DEFINITELY have to get something in my wallet TODAY to that effect. If I somehow ended up in an emergency room, needing immediate surgery, my own meds could possibly kill me!! So, doing the research was worth it, if only for learning that one piece of information.

Hopefully this is the last time for a long time that I need to discuss my bowel habits LOL!! I'm sure anyone taking the time to read my posts is tired of hearing about it, as I'm tired of having to deal with it, too.

CPAP Saga Continues

I recently read that something like 80% of all people with Parkinson's Disease have some kind of Sleep Disorder, so I'm in good company, eh? There's even a study in progress to see if using a CPAP machine will improve the cognitive abilities of PWP, particularly memory. That's something I'd love to see as a side effect of putting up with this thing!

Well, I haven't given up yet, but I also haven't gotten through a whole night with the CPAP machine on, either. I've been getting to sleep with it pretty well. But then my old insomnia habits take over, and I'm wide awake several hours later. I am finding it easier to get back to sleep the first time, but not when I wake up around 1:30 or 2:00AM. That's when I've been taking it off on most nights.

I've also had a vague nausea and a horrible bout of stomach bloating, particularly this weekend. Since this is already a problem related to the elimination difficulties I have, I treated it with that in mind, with no success. Then, just on a lark, I Googled for bloating and Cpap. To my surprise, I found that this is a common problem, as some people get air forced in their stomachs. The suggestion was given to use Gas-X, and after I did that I felt much better! It's a shame I didn't think to check that sooner, as I didn't go to Church this Sunday, as I just felt entirely too yucky.

Another thing I discovered quite on my own yesterday made a considerable comfort difference for me last night. There are Velcro adjustments at the forehead and around the back of the neck and under the ears for the attachment of the mask. I've been loosening and pulling on them for days, trying to get comfortable. I happened to notice, while the mask was off, that the harness was all twisted out of shape, with one side pulled tighter than the other. So, I undid them all and started from scratch, carefully tightening them up in a symmetrical way, until I thought I had the right size. Then, I tried it on with the CPAP blowing air at its top volume and carefully adjusted it again. Now it is much more comfortable to wear!

I've been up since 1:30AM, so the CPAP hasn't helped me break the insomnia cycle yet. But I did sleep until something like 5:30AM Sunday morning, although most of that was without the CPAP. It's just going to take time, I know, but I WANT IT NOW. Patience was never one of my virtues.

Things Not as They Should Be

Well, I was right. Something is wrong with my elimination anatomy. I saw the Gastroenterologist Tuesday, and he sent me to another doctor, who found the problem. This doctor is not giving us a high percentage of likelihood of being able to fix it, though. He's sending his findings back to my Gastroenterologist, Dr. B, and I have another appointment with Dr. B next Tuesday. I really don't see much choice but to have the surgery that may repair the problem, even with less than best odds. Not exactly the news we wanted to hear.

Dr. B did give me some samples of Amitiza, the prescription that is replacing the Zelnorm I was taking for the problems with my digestive muscles not working properly, until it was taken off the market. From what I've read it nauseates some people horribly, but I've been lucky. So far, no problems taking it. I can't tell yet if it is going to be helpful, though.

Now, this evening, I found a tick on the side of my knee, and the bite area has a red ring around it. According to what I've been able to find, that means I'm headed to the doctor tomorrow, possibly to start a round of antibiotics, as this apparently is a symptom of Lyme Disease.

What's the expression? When it rains??????

Digestion Problems Worsen

I have an appointment with my Gastroenterologist for this next week. Even though I have faithfully taken the Myralax each morning, take Metamucil every day, have been on the Bowel Retraining regimen, using the glycerin suppositories, and I've been really careful about what I was eating, I'm still having bowel problems. For lack of a better word for it, I would call it constipation, but it's more like the colon and rectal muscles just are not working properly. Before I was diagnosed with PD last year, I had a four month bout with diarrhea that was very difficult to stop. The Gastro treated me with the same meds that would be used with colitis and Irritable Bowel Syndrome, so that may be what's going on now. From what I've read, the IBS spasms can cause some really strange symptoms, which fit mine fairly accurately. I won't gross you out with any details. Let's just say things are not as they should be.

Other than that, I can report positive improvement with my right knee, which I had twisted again. We took off several days from the track, I have been staying on the computer more and reading more, and generally letting it rest. I did walk 1 quarter mile lap yesterday, and another today. Mostly I've been doing the exercises that the Physical Therapist outlined for me. I'm thinking I probably need to get some kind of knee brace to use in situations that might aggravate it, such as the clearing out I was doing of Daddy's things that set this episode off.

So, I wait for the Gastro appointment, look forward to the Sleep Study next weekend, and baby my knee while it slowly heals. DH, as always, has been super considerate. He keeps me laughing over his foolishness and does so much for me. No one could ask for a more loving and caring helpmete.

Decided Against It

I do appreciate the feedback you gave me on the decision about joining the St. Vincent's facility, but we finally decided not to do it at this time. Time was, after all, the deciding factor. It was going to eat up about 3 hours each day I went, and to get any good out of it, I would have to have gone at least 2 days a week, if not 3. I think I can accomplish just about as much with home exercise equipment and our time at the walking track, which is about 5 minutes from home. Of course, in this day and time, we have to take gas prices into account too, and we do live a long way from any of these kinds of sports facilities, with some really bad traffic to contend with both ways.

I continue to accomplish more and more when I exercise in the mornings, but I'm paying for it each night with a lot of sore muscles. DH fusses at me for over doing it, but it doesn't ever seem like I am at the time. It's only later in the day that I realize I've over taxed my muscles. I think some of this pain I experience is coming from the Peripheral Neuropathy, particularly since I went off the Cymbalta. My Neurologist wasn't the least concerned about me taking it in conjunction with the Zelepar, even though the Pharmacist had warned me about the combination. So, I may yet go back on it. But for now, I'm still adjusting to adding the Requip back to my meds, so I don't want to add 2 new drugs at the same time.

The Requip is beginning to upset my stomach, just the way it did last time. I'm having lots of heartburn and belching a lot. Nothing else has changed, so it has to be the culprit. I'll put up with it if it doesn't get much worse than this, but I'm still planning to ask for the Neupro patch when I go back to Dr. S in June.

Just to document where I stand physically:

I can now sit down and stand up from a straight chair without using my arms, at least in the morning. I can't by the evening, though. Sofas and soft chairs I haven't mastered yet. I can walk over 3000 steps a day on the pedometer most days. I've put the handicap toilet seat away for now, as I can deal with the standard one, as long as I have the sink cabinet to hold onto. I'm still using the cane when we go to yard sales and such, where the terrain is unknown, and I still don't go up and down flights of stairs if I can avoid it. Crouching down to get things in and out of my kitchen cabinets is difficult, so I usually depend on DH to do that for me. I lose my balance too easily, particularly with something in my hands. My core muscles, those of the trunk, are definitely getting stronger as I continue to exercise, as I can now lift my behind when I do what's called the Bridge. It's a simple exercise, really. All you do is lie on your back, feet on the floor, with your knees raised, and try to lift your bottom. Until recently, I couldn't lift more than a half inch or so, but now I'm coming completely off the floor.

I'm doing the Tai Chi short form almost every day now, and I'm getting pretty good at it again. My balance continues to improve.

The biggest problem I am having right now, I suppose, is the insomnia. As soon as I started back on the Requip, it started back again. I haven't been able to sleep past 3:00 AM for some time now. I get a lot done on the computer, but I really need the sleep! I've tried napping later in the day, but that doesn't work unless I'm in the car. Then I can doze off almost instantly ;).

So, I am progressing, but I have lots of room for improvement. Eating healthy foods and exercising are just as much medicines for me as anything that comes in a bottle!

A Clinical Trial of One??

In a real Clinical Trial, doctors use a very large number of people, usually, but not always, divided into two groups. One group gets the medicine being tested, and the other group gets fake medicine, called a placebo. At the end of the trial, if the people getting the real medicine have improved considerably more than the group getting the placebo, the medicine is assumed to be the cause of the improvement. That's a good thing!

They use such large numbers of people to conduct these trials, because there are always going to be unforeseen situations that influence the effectiveness of the medicine for some people. Maybe a few of the subjects have an undiagnosed disease that makes even the best of medicines not work. Or maybe some of them are under a lot of stress that ruins their results.

When you see a new medicine being talked about with glowing praise of its effectiveness, you have to be very cautious about getting all excited about it. I have seen reports like that where the trial only had 16 people in it. That only gives doctors a hint that a certain medicine might be helpful. It's just not enough people to tell you much.

That's the problem with trying to find the right medicine for me, or any other PWP. We are, in a very real sense, our own Clinical Trial. The last time I was on Requip, I was terribly bloated, with horrible stomach cramps and gas. So, the Neurologist took me off of it, and he put me on Zelepar. That medicine dissolved under the tongue, so it doesn't bother the digestive system. My stomach improved tremendously. The question is, was that because of the Zelepar, or was it because, that same week, my Gastroenterologist changed the prescriptions I was taking for my stomach? Also, my symptoms were not alleviated as well when I was on the Zelepar --- BUT I had strep throat most of the time I was trying it, without knowing I was that sick.

There's no way to be sure, is there, with more than one medicine being changed at the same time, and with me being sick, too? I talked with my Neurologist yesterday about this, and the fact that I had gone back to 1 Requip pill a day for several days, because I ran out of the Zelepar samples before my appointment. Even though I had been on the Requip for several days, my stomach was doing just fine.

So, Dr. S. has prescribed another month of Zelepar, to give it a fair trial at helping my PD symptoms. If I am still not getting as good a results with it as I was the Requip, I am to add the old dosage of 3 times a day of Requip to the Zelepar, which I take 2 times a day. I don't see Dr. S. for 6 more weeks, to try to give me a chance to tell what is going to work best for me.

Parkinson's Disease is different from many diseases, where there is some MRI or blood test that will tell the doctor what is helping, and what is not. With PD, it really is up to me. I have to be the judge for myself if the Neurologist has prescribed the right medicine and the right dosage. Then he bases my prescriptions on his vast experience with many other PWP he has treated.

But it still boils down to a Clinical Trial of one - ME!

Miralax Effectiveness Evaluation Week 1

Miralax is a white crystalline powder that is mixed with a liquid and taken each day, one or more times, depending on the doctor's directions. Its purpose is to soften the bowel movement. It is also supposed to improve the effectiveness of Zelnorm, a medicine which helps to improve the rhythmic muscle action of the digestive system. I had read that it was supposed to be tasteless, but I frankly found that a little hard to believe!

I have been on Zelnorm for some time now, but my Gastroenterologist just added the generic form of Miralax to my prescriptions Friday. I tried dissolving the crystals in water the first time, and, at least for me, I will agree that it is tasteless. It does give the water a slightly thick feel, and I could tell it was going to turn me off of drinking water - a purely mental aversion, but one I needed to heed, as water is extremely important! So, I tried it in apple juice, and that worked for me. Then I got the bright idea to just sprinkle it on my morning bran cereal, since it really does dissolve completely. With a little stirring, it disappeared completely, and I couldn't even tell it was there. So that's the way I took it yesterday and today.

I didn't see any results at all from using it until the third day, and even then it was of minimal help. So, today I went back to using the glycerin suppositories after breakfast, and the combination was very successful. (I had stopped using the suppositories Friday, not knowing how my system was going to react to the Miralax.) The bloating has definitely gone down, as my pants are looser. I'm still belching as soon as I put anything in my stomach - even water - but it isn't as bad as it was.

Today was the first day in a long time that I didn't end up with the hot pad on my tummy, trying to ease the pain, so I can see the beginning of some improvement!

I'm sure everyone's experience with the effectiveness of Miralax will be different, depending partly on why they need to use it. But I can say that someone with Parkinson's, with a long term constipation problem, should certainly give it a try, anyway. The generic version is not very expensive, it seems to be gentle on the system and suitable for long term use, and it seems to do what they say it will do - all while being as close to unnoticeable as a medicine you have to drink is likely to ever get.

You will find a large number of testimonials about people's experiences with Miralax at the AskthePatient.com site.

Parkinson's and Constipation

I feel like I ought to warn you that this post made me uncomfortable to write it, and it may make you uncomfortable to read it. It's not considered "polite" to discuss bathroom problems, and I understand that. So just skip this one, if you like. I'll certainly understand. But if you have Parkinson's, or know someone with Parkinson's, you might want to keep reading.

My Gastroenterologist has added Miralax to my Zelnorm prescription. He's recently started me on a regimen of daily glycerin suppository use, too, in what's called Bowel Retraining. I've already been on Metamucil capsules for several months now, and also eating a high fiber bran cereal every morning. The Parkinson's, or a combination of the PD and my meds, has left me with very little muscle power in my digestive system, plus diminished nerve awareness as well. He says that's where the bloating, nausea, and gas are coming from.

I am not allowed to have coffee, any caffeine drinks, carbonated drinks, chocolate, any dairy products - including cheese, any citrus fruits or tomato based foods, peanuts, drink liquids with meals, or eat anything within two hours of bedtime. And I'm sure I'm leaving something off the list! It seems like every time I go see him he adds something else to the list, anyway. Some things on the list are for my GERD, and some are for the IBS (Irritable Bowel Syndrome) symptoms he's treating.

Constipation is one of the most universal symptoms that people with Parkinson's Disease deal with, but, let's face it, it's not something anybody likes to talk about. But I want this blog to be useful to other PWP, so I don't want to leave out this information, even though I really don't like coming right out and admitting that I'm constipated. I really didn't realize I was, as everything seemed OK to me. But it's obvious to me now, after taking all these high powered medicines he's had me on lately, that I am, and have been for some time now.

Again, in the interest of being helpful to other folks with PD, I found this really well done site about constipation at MedicineNet.com.

Well, this was not an easy post for me to write, but I hope it turns out to be helpful to someone else with Parkinson's who's suffering some of the same symptoms I have been for so long. This is not a battle I have won, by any means. In fact, judging by the lack of success my doctor has had so far in dealing with my problem, I'm probably going to be dealing with this off and on the rest of my life. That's probably the case with most PWP, as well. If any one chooses to comment, I'd appreciate hearing what you have to say about how you've dealt with this problem.

Same-o Same-o

I did go to church Sunday morning, which was a pleasantly normal thing to do, but my stomach acted up, as usual, so I really didn't get to enjoy the afternoon. I did get a good bit of rest, though, which I certainly needed, but I'm still not getting more than a few hours sleep at night. The Ambien just isn't working for me.

Today has been pretty much a repeat of many others, with the accompanying stomach bloating and cramps. I'm being just as careful as I can with what I eat, and I'm not having any bathroom problems, so I have to conclude that this is due to the Parkinson's itself. Just like my legs were moving so slowly before I was on medicine, evidently my digestive system muscles are also moving very slowly. The regular Parkinson's meds don't work on these involuntary muscles. That's what the Zelnorm is supposed to be helping, but I don't really think it is. And, thanks to how lousy I'm feeling, I'm losing a good bit of weight.

So it looks like I'll be moving my Gastroenterologist and Neurologist appointments up sooner, if possible, as I've had about as much of this stomach trouble as I want to put up with.

Another Day Goes By

Thank goodness the headache was gone yesterday. I can't say the same for the cramping tummy, though. I started out OK enough, but Daddy had a bathroom accident, and cleaning him up really unsettled my stomach. I managed pretty well while the cleaning was being done, holding my breath a time or two, but once everything should have been through with, then I started feeling nauseated. I spent the rest of the day with the hot pad on my stomach and abdomen, trying to ease the cramping.

I've checked my blood pressure, too, thinking that might have something to do with how bad I've been feeling. Sometimes it's been too high, like 144 over 80, but most of the time it's been just fine. I keep getting these fleeting feelings of lightheadedness or dizziness, which could just be due to tiredness, since the BP is usually OK.

At least I did accomplish something yesterday afternoon. DH wanted me to go to the house for a couple of hours, just to get away, but I really didn't feel good enough to want to move. So I told him to just pretend I wasn't here, and I'd rest where I was. So, while he took care of Daddy, I did the research and wrote the descriptions for 5 baby toys to put on eBay just as soon as I can get the photographs taken.

I'm looking forward to Francis coming this morning to give me some more time away from Daddy. That should help. If my tummy seems OK after breakfast, I'll go to church. If I'm still uncomfortable, I'll probably just stay home and rest. Whatever I do, being at home or at church and away from the care giving responsibility momentarily will do me good.

Hopefully, I'll feel good enough to get the photos of the toys done, so we'll have some items on auction this week. This should have been our busy time online, but under the circumstances, there was just no way to make that a priority. After all, it's only a hobby, but it's a hobby that gives me a lot of pleasure, and I need that release right now, too. So I have to balance my time and energy to keep myself as calm and relaxed as possible and still be helpful with Daddy. It's not fair to DH for him to end up doing everything, particularly since Daddy is such a pain to deal with most of the time.

If anybody's BP is high, it would be my DH's, who finds himself constantly stifling the urge to come back with an equally sharp remark, after Daddy has said something particularly insensitive or controlling. He's always been that way, although I know he loves me, and for the most part I can let it go in one ear and out the other. But DH is overprotective of me, and Daddy makes him mad now.

Is My Tummy Ever Going to Be Normal Again?

I started this blog to keep track of everything that was going on with what turned out to be a diagnosis of Peripheral Neuropathy and Parkinson's Disease. Once the PD diagnosis was made, the Neurologist seemed to basically ignore the PN diagnosis. Since I can't really tell that I'm not feeling things as well on my right side, that's OK with me, as long as I can walk normally. And I can say, that as long as I'm faithful to take my PD meds, I am walking normally enough to appear to be symptom free to the uneducated eye.

So, what's the problem? It has been, and continues to be, my digestive system. As I sit here writing this, my stomach feels like I have some kind of heavy weight in it, and there's the feeling of a lump all the way up to my throat. I've had good days, usually several in a row, but I've had more bad days than good since I started taking the PD meds. Since I do have good days, I keep trying to find a pattern, something I'm doing right, or wrong, that will give me some clues as to how to avoid this bloated uncomfortable feeling. But I can't find a pattern at all. It's very frustrating to go to the doctor, and they start asking all of their neat little questions, and you can't give them any neat little answers!

OK, I've whined long enough. This is turning into a major problem for me, as I'm losing weight rather rapidly, simply because I don't feel like eating. I have a Gastroenterologist appointment on the 20th, and hopefully by then I'll have something to tell him besides it feels like a weight and a lump!

One More Thing I Can't Eat Any More :(

I really like well made pork and beans, and we had some good ones for Thanksgiving. I wasn't able to enjoy them on Thanksgiving Day, because my stomach was really giving me a hard time, with lots of cramping and pain. But I've tried several times since, while eating the left-overs, to take just a small amount of the beans, after being careful to take a BEANO tablet first. It didn't do any good. Almost as soon as the beans hit my stomach, the cramping would start. Since I enjoy eating them so much, I've tried it again today, but the results were the same. So, that's one more thing I can't eat.

It wouldn't surprise you that I'm losing weight, would it? After all, most of the things I really enjoy eating are now off limits, not because somebody just told me to quit eating them (which would never work), but because they make me sick. That's a pretty good incentive to do without some of my all time favorites, like milkshakes and chocolate ... sigh. These were always my comfort foods, and now I can't eat them at all. Bummer.

Of course, I really do need to lose the weight, so I shouldn't be upset. But I really would love to have a thick chocolate shake about now. I can dream about one, anyway, right?

If we lived near Birmingham, I'd try some Soy chocolate ice cream, but we don't, so that's not an option. The next time we go to the doctor I'm definitely getting some, though. That's a promise to me!

Life's Unexpected Turns

This has certainly been a strange last couple of days for me. It started with my laptop suddenly getting the dreaded Blue Screen of Death over and over, for no apparent reason, right before Thanksgiving. We had all the family coming for dinner, and that meant moving all the eBay stuff out of the guest bedroom, so the grandkids could spend the night. That meant there was no time to work on the ole 'puter, so I had my first taste of computer withdrawal LOL.

I behaved myself, and only worked on the computer in between housework, as I found out very quickly that I have no stamina at all. I used to be able to move all the stuff quite easily, dust and vacuum, and generally straighten the house with no trouble, but not any more. It seemed like I needed to sit down every few minutes and catch my breath. Thank goodness my dear hubby was doing all he could to straighten up the place, and of course he did all the shopping.

Our family helped out a lot on Thanksgiving, instead of just coming and sitting down to the meal, the way they always have before. Our SIL cooked the turkey, and our daughters took care of the deserts, so DH fixed the vegetables, and I didn't have to do anything. It's just as well, as I woke up with those bad stomach cramps and the bloating again on Thanksgiving Day. I spent most of the day with a hot pad on my tummy, ate almost nothing at lunch, but did enjoy having everybody here. Daddy ate almost nothing, and no amount of prodding would get another bite in him. The kids were particularly good this year, as they stayed quiet all day. I asked DD if she had threatened them within an inch of their lives, but she said she hadn't said a thing to them. So they hadn't made Daddy nervous, as they sometimes do with their playful noise, so it didn't make sense that he wasn't eating.

We had a wonderful time enjoying getting to visit with everybody all at once, particularly since our older daughter and her hubby will be with his parents for Christmas this year. Younger daughter and the girls spent the night and didn't go home until Friday afternoon, so we did get on our other laptop and do some Wishlist shopping for the girls, so I'll have some things to pick from that they really want.

After such a pleasant day and a half, even with my stomach cramping, our whole world turned upside down when I got up to Daddy's to fix his supper Friday evening. I found him in the living room floor, conscious, but unable to get out of the floor. He was not hurt, evidently, and doesn't remember falling, but he'd been on the floor most of the day. Mind you, he has one of those "I've Fallen, and I Can't Get Up" buttons in his shirt pockets, but he wouldn't use it! I've never been able to get him to use it. No matter how many times I explain it to him, he thinks it's going to call an ambulance and take him to the hospital. But I have it set to call us, and then a neighbor, and only call the EMT's as a last resort.

So I called my DH, and he all but ran up there, and got him out of the floor, by the hardest. He was very weak, as he had not eaten since breakfast, and he's diabetic. We got some juice and a banana into him, and soon realized that he must have had a mild stroke, as his speech was slurred.

So, I've been taking care of him now for the last few days. He seems to be getting stronger, and his appetite is improving. His speech is still slurred and I'm being really careful to feed him thick foods like oatmeal, so he won't choke. I'm not sure what we will do today. It would be extremely difficult to take him to the doctor, and I'm not so sure it would accomplish anything if we did.

As for me, I can really tell the stress has put a strain on my Parkinson's meds. My balance is poor, because I'm really tired, and my back is bothering me from trying to help him stand up. Luckily, I've had lots of practice at care giving, and I do know the correct way to do things, body mechanics wise.

Daddy will be 102 in March, so it's going to be very difficult for him to recover from whatever happened Friday. He wants to stay home, and I want to be able to help him do that if it's at all possible. If I could be fairly certain that taking him to the doctor would get us some Hospice help, then it would be worth the trouble of getting him in and out of the car and the doctor's office.

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.