Tummy's Back to Normal - PT Continues

It took a couple of days of very careful, limited eating, to get my tummy back to a normal situation, but I'm much better now. I've gone back to using the glycerin suppositories, and that's helping the most, other than to avoid some questionable foods.

I talked to my PT Monday, and told her my neck was much better, and that I was surprised they had not had me doing any exercises. She said they wanted to get my muscles calmed down first. So, she is going to add some tomorrow. I told her I wanted to be stingy with my visits, in case I needed to come for something else later on in the year, so she has me on Monday and Thursday now, instead of 3 days a week. Of course, that frees up our Date Day, and that suits me just fine.

I've been extremely busy trying to help all the families who have been asking for help find lost lovies, ever since the msnbc.com article came out about our Plush Memories Lost Toy Search Service. We had well over a thousand hits that first day, and our traffic is still about double what it was before the article.

I'm fighting the poison ivy again, and I'm not sure which one of us is winning right now. I have found that I can take one Benadryl at night, and that stops the itching until in the afternoon. Then I take a non drowsy type that the pharmacist said I could use. It doesn't work all that well, and by early evening I'm in misery. It gets in my blood stream or something, because I end up with rash and blisters in places that it should not be. Very delicate skin itches ten times more than arm or leg skin, I guarantee it!!!

I see the Dermatologist in another couple of weeks, so I will certainly ask him about anything I can do to dry it up quickly.

I think I know where the poison ivy is coming from. We've been bringing our outside cats in at night when the weather is below freezing. I am pretty sure I'm catching it from them. We had the brother and sister kitties neutered last week, and the little girl is somewhat frail, so we did not want to take any chances with the cold. The only other possibility is that the wood chips I'm using for the compost have the vines ground up in with it. Our back yard is just full of poison ivy, so that's certainly possible.

I'm continuing to limit my reading of anything Parkinson's related, but nothing has changed as far as my foot tremors and facial tics go. Oh, and I still haven't started back using the TAP. I decided to get my neck calmed down, plus see if the mouth tic was related to maybe my tongue moving around on the inside of the mouthpiece in my sleep, and it getting to be a habit. Well, the neck is calming down nicely, but the mouth tic is still there. So I think I can stop blaming the TAP for that.

Since I've been taking the Benadryl at night, I'm sleeping quite well, even without the TAP. Funny, the Benadryl is working much better than all the fancy sleep meds ever did, and I've tried almost every prescription they make at one time or another.

Slept All Day Yesterday

I overdid it. We have been going more and more to fresh foods, mostly raw, for lunch. Our salads have been getting larger, while the amount of cooked vegetables has been decreasing. We've also had a few smoothies, including one the other day that was a total disaster. I made myself drink about 6 oz of it, because I just couldn't stand the thought of wasting all that food. Well, if I ever make one again that tastes yucky - it will make great compost!!

I was bloated on Wednesday morning, and I didn't feel like exercising at all. I did a little moving around, but quit about half way through the video. But I felt OK as the day went on. I should have paid attention to my body and gone back on my strict safe diet and the bowel retraining regimen I have used in the past. But I didn't listen.

By that night, I was nauseated and so uncomfortable that I used a Phynergan suppository and went to sleep early. I woke up about midnight coughing uncontrollably from acid reflux, so I started sipping on liquid Gaviscon to calm down my esophagus.

I slept until my medicine alarm went off at 5:00AM, was so groggy that I took the Zelepar and went right back to sleep. I kept on waking up for meds and going back to sleep most of the day. I went back to using the glycerin suppositories, too. I cut back on medicines to only those I thought were essential, and only had a couple of lightly buttered English muffins to eat all day. I managed some chicken soup for supper, and then slept all night again.

Surprisingly, I felt OK this morning. But I will be extra careful with my meals for the next few days, and will be using the glycerin suppositories again for awhile. My Gastroenterologist explained to me that I feel like that when I am constipated. The fact that I am still going to the bathroom doesn't matter, if I am not eliminating enough to keep my colon working properly.

I went for my Physical Therapy this morning, as usual, and we even did a little traveling for our Date Day. There aren't very many Estate Sales this time of year, so we ended up going to just two. Neither one of them was very interesting, but we did find some old toys that will pay for our day out, anyway.

I feel fine as I write this, but I had become complacent, I guess, since it had been so long since my tummy has bothered me. I learned my lesson this week.

I've Been Busy, Busy, Busy!!!

I've been so busy I hadn't even realized how long it had been since I posted here. This is our busy time of year for selling on eBay, so I've been spending a lot of time taking pictures, writing descriptions, and packing items to ship. Hubby helps a lot with the packing, and he goes to the PO with them, but the photography and anything computer related is up to me.

I also have been very busy on the Plush Memories blog, because so many people have written wanting help finding their child's lost lovey. It feels so good to actually help someone, and I have had some successes lately. But right now, I have something like 70 or so requests that I haven't posted yet. Every time I open my email, there are a few more requests. It's almost like being Santa, getting all the letters. But I'm not magic, and there are only so many hours in the day that I can give to it.

I am still sleeping a good 7 to 8 hours a night now. My alarm watch is waking me up at 5:00AM most mornings now. That's made a huge difference in how much energy I have, and I'm not even dropping off to sleep in the car like I had been. I haven't had the nerve to drive again, though. I have mentioned it to hubby, but he just doesn't answer me. Not so sure he thinks it's a good idea.

The elimination problems have improved slowly, and the Bentyl, prune juice, extra Metamucil, and the Glycolax are working. I bought a couple of books about IBS, and I'm trying to change some more of my eating habits, too. I had already made some huge changes over the last few years, thanks to the GERD. But now, my diet is even more restricted than ever. I eat the forbidden foods from time to time, like pizza, but I do it knowing that I can expect to have consequences. And I give in to the chocolate craving every once in awhile, as it's the best cure for being upset that I have ever found. Yes, I am addicted to chocolate!!

Wearing the Skechers shoes helped last Sunday, and I was not anywhere near as unstable in them as I have been in my regular Sunday shoes. They're not the kind of shoes anyone would normally wear with dress up clothes, but they are unobtrusive.

I'm to have a stand up MRI soon for my neck, as the pain and stiffness have not gone away at all. I'm waiting right now for my insurance to approve the test. The muscle relaxer and anti-inflammatory have not made a dent in my neck situation. The X-rays show the degenerated disks, and my Orthopedist knows about the problem I had with the Celestone. He said I may have to go off the Zelepar long enough to have the epidural in my cervical vertebrae. He said I would need to talk to the Anesthetist and work that out with him. Sounds fine to me!!!! If the epidural doesn't work, the only thing left would be some form of surgery, and that I will avoid as long as possible.

Hubby's sciatic nerve problem has flared up again, so he doesn't feel like going to the track to walk. So I've been getting most of my exercise by working in the yard. The Lasagna Compost is still growing, one pile of wood chips, fertilizer, kitchen scraps, and dirt at a time. It sure is tempting to turn the pile to see if it's working, but I have resisted the urge so far. I work in the yard several days a week for over an hour, so that's good.

So, I think I have more positives going on than negatives, and that means today is a good day!!!!

No Such Thing as Status Quo with Me

We had a wonderful Thanksgiving Day with our whole family. Our older daughter and her hubby both love to cook. So they went overboard with the food, but it was important to them, as their first big family meal in their new home. I could tell she was getting all stressed, which is not good for her at all, but I sure was glad I didn't have to have them all at my house. Don't get me wrong, I love being around all of them... but I get way too panicky at the thought of having that big a group all at once.

Plus now, my house is not clean enough for me to feel comfortable entertaining. I have started trying to unclutter some parts of the house, but it took it several years to get in this mess, and it's not going to be clean overnight. Hubby says to just ignore it .... something he seems to be able to do quite well. It bothers me, though. Every time I try to tackle it, I get worn out before I've made a dent! LOL

Anyway, I did have an appointment with my Gastroenterologist this week. I am still having lots of belching and gas, although the elimination difficulties have improved considerably since he put me on the Bentyl. I had read some things on the Internet that made me ask about the Metamucil and Glycolax, as far as were they contributing to the gas problem. I gave him the printout showing the times I was taking my meds, thinking he might see something that I needed to change. He was flabberghasted. He said he had no idea I was taking the Metamucil and Glycolax in the morning - that I should be taking them at night!

He also said the loud belches were from swallowing air. I told him I knew I did that when I took my meds with a big gulp, because I had trouble swallowing them. He suggested I take them in applesauce, instead of water. And .... it works! I do have a little trouble getting the swallow to come, though, thanks to my uncooperative tongue.

My tongue has started some kind of tic. I'm lip licking, or lip sucking, or moving my tongue around, rubbing against my teeth almost constantly now. I mentioned this new quirk in the PLM forum, and one of the Parkies said she had been rubbing the back of her dentures with her tongue for 14 years! She's actually worn a hole in the back side of two of her teeth!

Speaking of the TAP, I am continuing to get 7 1/2 to 8 hours of sleep each night. My alarm watch is waking me up now to start my meds at 5:00AM. If I could just stay awake later at night, I would change the time of the first meds. But it's all I can do most nights to stay awake until 9. I'm toying with the idea of taking a short afternoon nap, but I will wait awhile longer before I try that, to be sure I have the sleep habit well established.

I am out of the muscle relaxer meds now, but they really didn't help a whole lot to ease the soreness and stiffness in my neck. So I'll be calling my Orthopedist this next week.

I'm still having a lot more tremors than I had before my trip to the ER. The tremor in my right hand is unpredictable, but strikes often and hard. If I stand still for even a few moments, my right leg starts a little dance all by itself, making my whole body bounce, and sometimes now it starts up even when I am sitting down. That was only happening at church before, where I was blaming it on being cold and the seat being uncomfortable. Now it's pretty much a given that if I'm standing, I'm dancing, and if I'm the least bit tired or upset, I'm jiggling as I sit. And walking still feels like I'm on Jello. I'm using the cane all the time when we go somewhere now, except for church. I'm still stubbornly holding out on that, as it puts too much attention on me.

I am going to have to keep track of the times of the day that all these tremors start and stop, so I can tell if it has anything to do with my meds wearing off.

So today, I can give my sleep problems an A, elimination difficulties a B-, stiff and sore neck a D, and tremors a D.

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!!

Catching Up

My Gastroenterologist finally found an antispasmodic that I can take with all my Parkinson's meds! I've been on it for several days now, and things have improved somewhat. Of course, I've also added the Enteric coated Peppermint Gel Caps, Turmeric, and Acidophilus.

Well, I went to see Dr. S Friday, and he said pretty much what I expected him to. Since I was taking 4 prescriptions that had just been added in the last two weeks, in addition to the OTC meds that I have added, he wouldn't even discuss dosing or changing meds. He wants me to come back in about 2 months, after I have had the Sleep Study with the TAP dental appliance in place.

I had printed out a nice neat list of all my meds, with the times I take them, and I asked him to take a look and see if he thought I had spread the meds appropriately. He didn't see anything wrong with it, which made me feel good. It took quite a bit of time to figure out how I could keep certain meds away from each other, and take into account such things as having to be on an empty stomach.

I asked for the form to get a handicap parking placard, too. It's time. On good days I won't need it, but the way I've been lately, I will definitely have to have it available. It is sad to see that check mark in the Permanent Disability box, though. We have dentist appointments tomorrow, so we'll take care of it then.

I have been using the trekking poles for the last week or so, since I've been so wobbly. They make all the difference in the world. I'm wobbly when I try to walk unassisted, but I can stride along at a good clip when I use the poles. I walked a mile this morning, with the poles, even though I'm holding onto furniture and walls to navigate in the house. We bought one adjustable pair some time ago, figuring we could get another pair later, if we thought they were doing any good. We'll buy another set tomorrow while we're out, too.

I've made 2 quarter turns on the TAP device now, but I couldn't feel the change when I turned the key. Each quarter turn pulls my lower jaw out about the distance of half the width of a dime. I'm still getting about 5 hours a night, but I am not sleepy when I get up around 2 or 3AM. Of course I go to bed around 9:00PM. I still get miserably sleepy in the afternoon, but I don't take a nap. I'm afraid if I get in that habit that I won't ever sleep any longer at knife.

I could feel a huge weight lift from me when I got the call the other day from my Gastro to tell me to order Bentyl, also called Dicyclomine. If I had been there in his office, I would have given him a huge hug!!

So, I continue to stay busy, trying this and trying that, hoping to get the best results possible toward the goal of living as "normal" a life as possible.

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. ;}

Waiting, But Not So Patiently

My Gastroenterologist is a very busy, very dedicated man, for whom I have the utmost respect. I know for a fact that he works long hours, because one of the times I went to his office lately, they couldn't find my chart. Then the nurse pulled it out of a big duffel bag full of files, and told me those were the ones Dr. B had taken home that night to work on. He had been reviewing my whole chart, hoping to find a pattern in my symptoms that would help him decide on a course of action. I had no idea that doctors took their work home with them. Considering they get calls in the night for emergencies, I always assumed that they tried to leave their work behind as much as possible when they went home.

So, I'm trying to be patient as I wait for him to call me back. I reported in to his nurse last week to let her know that the cleaning out he had me do with the GoLytely did not stop my problems with elimination or with the bloating and gas. She told me then to check back this week, after I had stopped the Amitiza, to see if that would help. Well, I called her Tuesday, and left a message that stopping the Amitiza did not change the problems. I didn't hear from her, so I called again late Wednesday afternoon, as she is usually so good about returning calls. She said then that Dr. B was going to call me back that afternoon, himself. So, I stayed close to home, with the phone on ready. No phone call. Well, like I said, I know he's a very busy man, so I waited until late Friday to call his nurse again, thinking maybe there had been a mixup on who was supposed to talk to me. She called me back just a few minutes later to say that Dr. B had just plain forgotten, and was very apologetic, and would definitely call me that evening. Still no phone call. I can't imagine him calling me on the weekend, but who knows.

I know I need to work on patience, as it is a virtue I really need more of. The old joke is that you should be careful when you pray for more patience, as the way to get patience is to deal with adversity. I guess my "adversity" right now is having to deal with these digestive related problems for over a year now, trying one thing after another, as the doctor ordered, with no relief yet. I'm definitely showing signs of depression, and I blame much of it on this unresolved problem.

There's no doubt in my mind that I am under medicated right now, as far as the Parkinson's meds are concerned. But there's no point in going back to the Neuro until I have overcome my difficulties with getting used to the CPAP, and until something definite has been accomplished with this digestive situation. As it is, I'm changing two things at once, which is not good science. In order to be sure what the cause and effect is on any treatment change, there needs to be only one variable at a time.

I wrote some time ago about how dealing with Parkinson's is like being in a clinical trial with one participant. I still think that is an accurate assessment of what it's like. After reading lots of comments and stories from other PWP, it is apparently true for most, if not all, Parkies. The doctors can only try things, never knowing exactly how any one patient is going to react to the meds, or their side effects.

And the depressing thing is, none of these meds work to improve the underlying brain deterioration. They only work on the symptoms. So far, no medicine has been proved to actually slow down or halt the progression of the PD itself, and there's not even a whisper yet of anything that can repair the damage already done, with the exception of claims made for stem cell therapy.

I do have one positive piece of information to report, though, and I try hard to end on a positive note. I mope about all this enough. Since brain fog is a problem I've had for a long time now, I was very curious when someone on the PatientsLikeMe site mentioned the idea of using brain training to improve their mental abilities. That started me doing some research, and led me to the MyBrainTrainer site. It was not very expensive to join for three months, and I figured I could give it a try for that long, and then decide if it were worth taking a year's subscription. They have a series of online brain exercises, set up like miniature games, that you work through on a planned schedule. I'm on Day 12 of the 21 day basic training part right now. My scores are consistently falling in the 25 to 29th percentile of all their participants in my age range. Not anything to brag about, that's for sure. BUT, here's the good part. The brain fog is beginning to lift, just a little. I'm not groping blankly for answers to questions on the Smarter that a Fifth Grader show nearly as often. I find I know the answers more often on Jeopardy, too, and I don't feel nearly as frustrated by watching these shows as I was a few months ago.

So is the BrainTrainer the reason, or the CPAP machine? I have no idea. Again, changing more than one thing at a time makes such a conclusion impossible. But I don't care, all I know is that I'm thinking better, even as my body is slowing down again from not having a strong enough PD med dosage in my system. I'm very grateful for that, and I cling to any positive outcomes as I try to work through this depressed stage I'm in.

Cpap Adventure Continues

I've been on the new full face mask for a week now, with one extremely good night's sleep, night before last. I've been awake since 12:30AM today, though. I woke up with air just jetting out from under the bottom of the mask, where the silicon soft part had come out of the plastic part of the mask. By the time I woke up enough to realize what the problem was, and then fixed it, I was wide awake. I'm also continuing to have problems with my skin. I'm ready to try the all over the face kind. That's not supposed to irritate skin, as it fits at the hairline and all around the face completely. This is the last style there is, basically, so I'm about to run out of options, other than not use it at all. That 8 hours of sleep on Sunday night gave me such high hopes, too.

I continue to struggle with terrible gas, and I'll be calling my Gastro's nurse today to report in. Stopping the Amitiza just didn't help any. Nothing has really changed as far as feeling like something is wrong with my elimination process, either.

We walked at the track again yesterday morning, after several days off. This time it was due to DH having some pains, as I think he over did it when we started back walking the other day. Hopefully, he'll be OK this morning, and we can get our walk in. I also worked in the yard early yesterday morning, putting another pile in the Lasagna Compost area and digging around the foundation of our new garage. We need to get a drainage ditch around the front edge, so I'm hoeing just a little bit each day. I'm also trying to sweep off the driveway every day or so, as that is good exercise for my shoulders. It sure does feel funny, though, trying to sweep left handed. But I need to exercise both shoulders, so I do it, funny feeling or not. And boy, am I right sided. I'm pitiful trying to sweep "backwards". LOL

I've been doing more research, trying to see if there is anything I've missed about CPAP. I did find that I'm supposed to have the machine below head level, a fact that escaped me somehow. I didn't keep it on long enough last night to know if that would stop the "rain out", as it is called. That's when the humidifier in the machine causes condensation in the tubing, because the air in the room is cooler. I can't do without the moistened air, so I will need to deal with the condensation. It got so bad one night that it sounded like the thing was gargling!

I was also trying to find out of the machine is aggravating the gas I'm having, and yes, CPAP does often cause that, as many people swallow the air. It's supposed to be something you grow out of, and can be lessened by using the Ramp Up switch, which starts the pressure lower so you can go to sleep easier. I hadn't been using it, since going to sleep has never been my problem. But I did use it last night, and will from now on.

For all that I'm discouraged this morning, after so little sleep last night, I am still hopeful that I will adjust to the CPAP. I'm not so optimistic about my digestive system problem, though, and I am still wanting the colonoscopy. My legs and hands continue to be swollen with fluid, too. We'll see what the doctor has to say today.

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.

Whoever Named It GoLYTELY Had a Cruel Sense of Humor!!!

I said I was going to quit talking about my elimination problems. Well, no such luck, so skip this post, if you're as tired of reading about it as I am of struggling with it. Anyway, I called my Gastro the other day to tell him that, even though I had gone a week on his full strength Bowel Retraining program, that I still felt blocked, and he called back yesterday. I'm in the process of drinking down 4 liters of GoLYTELY, by the hardest. I've had surgery and colonoscopy preps before, but I used Fleet. At this point, I'd say I'd rather drink a small amount of horrible tasting Fleet than a gallon or so of relatively bland tasting GoLytely! I think I'd be nauseated if I had to drink that many glasses of just plain water every 10 minutes, let alone this stuff.

OK, I've griped. I still want my doctor to do a colonoscopy, though, because I don't think I'm going to have any peace of mind until he does. I've tried not to worry, but I really do have the sensation that there's some kind of tissue blockage. So, I'll have this to go through again sometime or another soon. Gee, what fun.

Now, I'm praying this does the trick and clears out whatever the problem has been. I'm also praying that I will have peace of mind with what my Gastroenterologist tells me, but that I continue to press for a resolution if I'm not. I have learned that I am the best judge of what my body is doing, not the doctors! And I think God expects me to continue to be my own best patient advocate.

Trying a Different C-Pap Mask

I took the c-pap stuff back to the supplier yesterday, and they have changed me to a very soft nasal "plug" that doesn't have nearly as much strapping all over my face as the nasal mask did. I slept 6 straight hours, without getting up at all. I can't remember how long it's been since I did that. It's not perfect, as my nostrils were sore this morning, and I can still feel the thing, even hours after it has been out. I've always had this odd thing where I could "feel" a hat long after I had taken it off, and this canula is doing the same thing.

I have hope now that I will adjust. The frustration I was feeling with the other face mask was really wearing me out. It's a good thing I don't cuss! LOL

I'm calling the Gastroenterologist today, as I want the colonoscopy for my peace of mind. I'm still not satisfied with my elimination situation. We took our kittens to the vet this morning, and I got light headed and had to sit down quickly, because we were standing, waiting for the vet to come in our treatment room. I blame that on my tummy, as I felt better after I excused myself and used their facilities.

I've started going out in our yard and working just as soon as it's daylight, as it's just too hot later on in the morning. So, my exercise routine is back on track, with walking and Tai Chi every day, plus working for a little while in the yard. By the time I come in around 7:00AM I'm drenched in sweat.

I'm definitely going to have to get my Neurologist to prescribe something to stop this excessive crying I'm doing. I broke out in blubbering at the c-pap office, trying to tell the tech how frustrated I was trying to adjust to the mask. I have learned that this is called emotional lability, and it is a PD side effect. He doesn't want to change my meds until I get the cpap and elimination situations settled, and that makes sense.

So, some things seem to be getting better, and others aren't.

In Wait and See Mode

The CPAP machine is getting a little bit easier to stand now, but I still haven't slept past 3:00AM with it on. That represents as much as 6 hours of sleep on a few nights, which is definitely better than before. I am having trouble keeping the chin strap on, as it is a soft band of stretchy material, with Velcro on the end. I need it because I am a mouth breather. Without it, I wake up with a sore throat and a dry mouth, as the forced air is being forced right down my throat.

So, I called the people that the CPAP machine came from, and we will take all the stuff into their office on Monday, and they'll see what they can do to help me.

So far, I'm not satisfied with the results of the Bowel Retraining routine the Gastroenterologist has me on, as I still have difficulty getting my muscles to work effectively. I'm to call him this next week to set up the colonoscopy, if I'm not satisfied with the results, so it looks like I may be scheduling that sometime soon.

So for the time being I'm in a state of limbo, just waiting for the right time to take care of things differently.

I have tried to get more exercise the last few days, but it has to be done at the crack of dawn, literally. I was outside walking around in the front, where the street light shines, at 5:30 this morning. It was already hot, but certainly bearable. I worked in the yard a bit, swept the driveway and sidewalks (a good exercise for my shoulder), and worked up a good sweat. DH and I have both noticed that I'm slowing down again. This symptom of Parkinson's is called Bradykinesia, and it's my main problem, both with my legs, hands, and my digestive tract.

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.

Cortisone Shot Again

I went yesterday and got another cortisone shot in my right knee, and I can already tell that it's beginning to help. The Orthopedist says he doesn't like to do them more often than every 3 months, so that gives me some idea of how long I would need to wait until I could have it done again. I was doing OK on this last shot, until I did too much packing of stuff of Daddy's, which involved squatting down. That's just something I can't do anymore, not only for the knee's sake, but also for other problems I'm having. I'll just have to do all the other exercises for my knee that the Physical Therapist gave me, and leave that type of exercise out of my routine.

It's just too hot to walk at the track right now, with 103 yesterday. Even at 5:00AM it's just too hot and the air quality is too poor to be out there, so we're exercising in the house to some videos. Well, hubby is following the video, and I'm bouncing very carefully on the mini trampoline at the same time.

I noticed a vague nausea last night after supper again. The same thing happened night before last, but I'm not sure where that's coming from. The Amitiza I've just started on is bad about that, so that may be what's going on, or it could be the elimination problem I'm having causing it.

The steroids always make me not sleep, even before I had trouble with insomnia, so I managed the C-pap until about 1:00AM and then I just couldn't get back to sleep with it on. I was pleased I got by with it that long, knowing how the steroids do me. I will get used to this thing ... I will get used to it!! Just have to keep telling myself that, and take each day at a time.

6 Doctor Visits in 6 Days!!

We have kept the roads hot this week, going from one doctor to another, even seeing two doctors twice. But at least I have a better idea of what's going on with several different problems I have been having. I saw my Gastroenterologist twice, and now he has me scheduled to see the doctor he wants me to use for the surgery I need to correct the problem with my digestive system. I was really upset about having to have surgery at a hospital I don't like, if my own doctor performed it. Now I can quit stewing about that. Dr. B solved that problem by telling me that he coordinates for this surgery with this particular doctor, who uses the hospital I like.

I saw the Sleep Specialist twice, too. The nights at the Sleep Study were not pleasant, as I was very uncomfortable in the bed, and the thing they had in my nose felt horrible. Halfway through the night, I got so upset about how miserable I felt that they changed to a different type of mask, and I got through the rest of the night fairly well. Tonight will be my first night to sleep at home with the C-Pap. Wish me luck!!

The tick bite looked really fierce for a few days and itched something awful, but now that I've been on the antibiotics since Friday, my left knee no longer looks like it's getting worse, and has stopped itching.

The Amitiza has turned out to be a good substitute for the Zelnorm that was taken off the market. I'm very pleased with how much it is helping with the constipation problems.

I've been reading everything I could get my hands on about the surgery I am to have, and I discovered that I cannot have Demerol if I stay on my Zelepar. I talked to the Sleep Specialist Doctor about what I would need to do about the Apnea when I have surgery, and I talked to him about the Demerol interaction I had discovered. He suggested I might want to tell them that I was allergic to Demerol, so it would be marked clearly on my chart and they wouldn't dare give it to me. The combination is extremely dangerous, so I might as well be allergic to it, right???

Now the only thing left to do is to make an appointment with the Orthopedic doctor, so I can get another cortisone shot in my right knee, which has arthritis in it. I don't want to be hobbling around the way I am now, trying to recuperate from major surgery!

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.

Sleep Continues to Be Scarce

The insomnia is continuing to bother me just about like it has been for several months now. I'm still having constipation problems, too. I've been on the Miralax continually now, but when I had to stop taking the Zelnorm, it began to gradually give me trouble again. I've been using the glycerin suppositories regularly now for the last week, but the problem isn't resolved yet. I'm already on a Metamucil capsule every day, besides the Miralax, so I hate to add any more oral medicine for it, for fear it will suddenly work too well. The only other Parkinson's thing that is going on with me right now is a very stiff neck. I have had like a crick in my neck now for several days, from a very tight muscle, that I just don't seem to be able to stretch out or limber up. I'll just have to keep exercising it, and hope for the best.

We had an absolutely glorious drizzly rain all day long yesterday, and I thank God for that. We need about a week of that kind of rain to make a dent in our drought situation, but it's better than nothing. Our grass finally looks like grass again.

They are supposed to come finish the garage tomorrow, but it looks like it might be raining. That's OK. We need the rain worse than we need the garage to be finished. We need to put another coat of water sealer down on the garage floor, anyway, before we start putting stuff in it.

Once we can use the garage for storage, we'll start bringing the furniture that our DD does not want to keep from their house down here. Also, we have stuff in our basement that we can't get to because it's in such a mess. Once we have a place to store it elsewhere, we can start emptying the basement of things and get the good stuff out of our way temporarily. Then we're going to have to make several trips to the dump!! We used to have a landfill dump here in our town, but it was moved to the other side of the county a long time ago.

That wouldn't have been so bad, but our town garbage collection rules call for household garbage only. They won't pick up anything that won't fit in a garbage bag. So, over the years, as things broke, like the washing machine, it just got stuck in the basement. Now we can hardly move down there. Oh, and the nearest Thrift Store won't pick up the appliances, either. There are certain disadvantages to living out in the boonies, that's for sure.

DH won't let me go down in the basement, as he's afraid I will trip over something or lose my balance trying to walk around all the stuff. I really do think he's being over protective, but I've done as he asked, and stayed out of it. I'm itching to get it cleaned out, though, and it bothers me that I can't just go down there and work on it if I want to. As it is, I'm stuck with his idea of when it will get done, and his timetable is a lot slower than mine LOL!! C'est la vie. That's what being married is all about - the give and take of blending two different people's habits and problem solving techniques together. I just need to work on my patience a little more, that's all.

Going Through a Depression Phase

I have really tried to stay positive about all that's been happening to me over the last year or so, but I'm not succeeding very well right now. When I went to my Neurologist last time we made a point of telling him that I was crying extremely easily over just about everything. He had a name for it, but it was a mile long, and I forgot what it was. Since he said he didn't want to change any medicines until after I've had the sleep study, there didn't seem to be any point in pursuing it, as long as we've told him about it.

We've been waiting to get the garage we're having built finished. We waited an extra month for the siding and roofing to be special ordered to match the house. Neither one of them is a match - right color, but wrong shapes. And we're stuck with them. That set me into quite a blue funk for the last few days, but I'm getting over that. It's just a garage. Sometimes it's hard to keep perspective about things like that.

We're still dealing with estate business, so that doesn't help with my state of mind right now, either.

I started back on the glycerin suppositories today, as I have gradually had more and more trouble with bowels again. Just as before, there's nothing that would make me consider myself to be constipated, but my muscles just don't push hard enough. They took the Zelnorm off the market that dealt with that problem for me before. So I'm planning on going back on the Bowel Retraining regimen.

So, with the insomnia continuing, the bowel situation flaring up again, and just generally too much going on, I've had better days.

Zelnorm Is Taken Off the Market

When I refilled my prescriptions last week, my pharmacist sent me a note that our insurance was no longer covering Zelnorm. I found out today why. It has been recalled. Luckily, the Miralax is doing a good job of keeping my digestive system moving along smoothly, and I didn't have any problems stopping the Zelnorm. Thank goodness I didn't have any of the heart problems that some people were having with it!!

That's twice my pharmacist has come to my rescue. I can't reinforce enough my suggestion that you buy all your prescriptions from one drug store!

Time I Tried to Catch Up

I've ended up doing the very thing I really didn't want to do, and that's not keep this blog as a daily journal. It's just that so much has been happening lately that I just had to put blogging way down on my priority list.

So.... here goes .........

Since I wrote last, Daddy has been much worse. There was a large bulge in his upper right colon area that no amount of enemas, suppositories, stool softeners, or laxatives seemed to be effecting at all. We are fortunate enough to live in the country, where doctors still treat their patients as individuals. So Friday, a week ago, Daddy's primary care physician came out to the house after work! After feeling around on the area, he really didn't think it was a bowel impaction, but there was no way for him to be sure. He suggested we put Daddy in the hospital for some tests. I spent the weekend deeply upset by that prospect, not knowing what was best for him. Dr. Mc understood that we had no intention of any type of surgery, if they did find anything other than fecal matter. On top of the rest of my misery over making this decision, he would be in the hospital I swore I would never take anyone to ever again.

I finally decided that I would be in worse shape emotionally if I didn't at least give it a try, so I was in the hospital with Daddy for several days this last week. We came home Thursday, after the tests they did showed conclusively that it was not fecal matter. We stopped them from running any more tests, so it was left as a diagnosis of a soft tissue mass. I don't need to know what it is ... only that I can give him pain medicine, because it won't be causing more constipation on a blocked bowel.

We also brought home new pressure sores, because it took lots of complaining to get them to change him and turn him. And, when they did handle him, most of them were not gentle with his skin. Did I say I hate that hospital??

One of the two really caring PCA's gave me four hospital gowns to take home, which is a big help at this point.

Yesterday evening, when DH and I started to turn Daddy to change his Depends, he threw up all over the place. Considering the amount of food and liquid Frances had gotten in him, everything must have been sitting in his stomach all day!! He was obviously in pain, so I called the Hospice nurse, who advised that I not try to give him his night medicines or move him for at least an hour. We cleaned him up the best we could and managed to get towels between his skin and the sheets, etc., that were soaked.

After an hour, we changed everything out to clean, but it was obvious we were really hurting him with every turn. After reporting in to the nurse, she said not to feed him or give him any medicine, but to call again if he didn't go to sleep comfortably on his own.

I called her back at 2:00AM, as things were worse again, and she told me to give him the morphine that absorbs through his mouth. She arrived about an hour later, as we are on the outside reach of this Hospice territory. He was running a temp, and his blood pressure was very high. We managed to get the blood pressure med in him that he had missed at supper time, plus a sublingual tablet for fever. I'm not sure what that was.

She then suggested I try to get some sleep, and she sat up with him for three hours, while I napped!! There's a lot about this hospice I don't like, but she moved them up a few notches in my estimation, in the wee hours of this morning!!!!!

Part of the reason I haven't been blogging is that my right arm and hand have been in considerable pain and swelling since we went to the hospital. Thinking it would be enough, I only took my cane. By the time I had walked all over the place as they took Daddy for tests, I had put too much pressure on my arm, and I paid the price for not remembering to swap to the left hand often. Thank goodness, I had thought to pack my hot pad. So I spent his hospital time doping myself up with as much pain medicine as I dared to, and still staying awake enough to be harassing them to do their job. I just couldn't manage the computer very well at all!! It looks like I'm going to have to learn how to use a mouse left handed ... I'm pitifully uncoordinated as a lefty ... far more so now with the PD.

I'm also fortunate that we had bought a really nice wheel walker with the seat in it some time ago at an Estate Sale. DH was very depressed when we bought it, but it was a blessing when my arm hurt so much.

I can't thank you all enough for your prayers and kind thoughts while all this was going on. I knew you were worried about my sudden disappearance, and appreciate the emails I received. Just know that you have been supporting me, even though you didn't know what was going on.

Tremors Galore!!

Don't let anyone give you the impression that everyone who has Parkinson's reacts the same way to the loss of dopamine in the brain. I'm one of those whose main symptom is Bradykinesia, which means without medicine I can barely get my legs to move at all. My upper body movements are slower and less coordinated, but my lower body simply has no clue what my brain is telling it to do. This effects my walking, balance, and my digestive system muscles. Something as simple as standing through the verses of a song in church can be very difficult for me to do. I'm also having lots of problems sleeping, no matter how tired I am.

Unlike the stereotypical image of a PWP, I have not had tremors. Well, I can't say that any more. Yesterday evening I noticed a rhythmic series of what felt like shivers to me, but I wasn't cold. I thought it was nerves, as things have been quite stressful around here lately. But when I tried to go to sleep last night, those shivers turned into full blown tremors. Not only my legs, but for awhile there, my whole body was uncontrollably shaking. These are called resting tremors, as they immediately stopped when I raised both legs. As soon as I put my legs back down - they would start up again. Yep, that's Parkinson's tremors, alright. Something else to talk to the Neurologist about next week.

I have decided not to add the Requip to the Zelepar, since the doctor's appointment is so close, but if I do the shake, rattle, roll thing again tonight, I may change my mind. Just as a point of information that I find extremely odd, PWP don't have tremors in their sleep!! Weird, isn't it??

My Uplifting Valentine's Presents

This last week has really been a strange one, on several counts. I wouldn't normally go this long without a post, but I tried to get a little too fancy with my Drive Partitioning software, and couldn't get the computer to boot at all! It took me several days to figure out how to fix it, and several more to get everything back the way it belonged. Luckily, I'm good about backing up my data, so I didn't lose any of that.

In between working on the computer, DH and I have had quite a time with Daddy. He's been getting more and more wobbly, and less and less able to follow our transfer directions. So, we've had several episodes of it taking every bit of strength the two of us had to get him from one place to another. The last straw was Monday or Tuesday (I've lost track HA!) when we had the usual bowel problem. Thank goodness I had decided to move the commode into the bedroom, instead of trying to take him in the bathroom. By the time that ordeal was finished, he just about finished all three of us before we got him cleaned up and back in his wheelchair. The Hospice nurse came not long after that, and she could tell how exhausted we all were. This time, when I asked for lifting help, she agreed that it was time.

So, what did I get for Valentine's Day???? A brand spanking new Hoyer Lift!!! Frances, our paid care giver, DH, and I learned how to use it this morning, and we were able to move Daddy from the bed all the way into the living room to his recliner, without any trouble at all. He's more comfortable, and we're MUCH happier. And our backs and nerves appreciate it, too!!

I've been pleased with how well the Zelepar has been helping me deal with all this physical and emotional strain. I did have a bout of hysterical crying this weekend, though, because Daddy's foot looked worse to me, and I felt so guilty that I had let it get that way. My head knew I'd done my best, but my emotions sure didn't. The Podiatrist was here today, and he's very pleased with how it's progressing, so that's a big relief. Hey, that's another Valentine's Day present for me!!

And, today, for the first time in years, the pressure sore on Daddy's bottom is all but healed! Present number THREE!!

I feel like a huge weight has been lifted off my shoulders. For the first time in quite some time, I really think we're going to be able to keep Daddy out of a Nursing Home. The lift, the gel seat cushion, our Estate Sale sheepskin finds, and the rippling mattress have made all the difference in the world in Daddy's quality of life. I thank God for his tender mercies.

We Have BOOTIES!!

Finally, a good two weeks or more after I first asked for them, the nurse brought the sheepskin looking booties today. If I had gotten them when I asked, his heel would not have looked so bad, and may not have even blistered at all. She also brought the seat cushion for his chair. His bottom is also getting worse, so this will help considerably.

We spent the whole morning trying to achieve a bowel movement. I've been giving Daddy 2 stool softeners with each meal, plus a Senna laxative tablet each night. He hadn't been since last Wednesday, so this morning we went all out to get some results. Prune juice for breakfast, plus another laxative tablet. It's quite an involved process to get him in the bathroom now, but DH helped me this morning. Daddy still couldn't go. So, I used a suppository. We waited, but still nothing.

By the time we had him ready to move to his chair in the living room, everything decided to start working. So, we went through the routine to get him back in the bathroom, take care of that, and then put him on the bed, so I could get him really clean and put ointment back on his sores. Then, we got him back up and into his chair. By the time we did all that, the nurse came. His chair is a recliner, which he would not use before. But we had so much trouble keeping him comfortable in his chair or the wheelchair Saturday, that we thought it was worth a try. By propping his calves up with two pillows, we finally got his legs high enough for his heels to hang without touching anything. And he's comfortable. He immediately fell asleep, bless his heart.

He's not the only one who's worn out! DH had to take over and sit with him while we were waiting for him to finish in the bathroom, because my stomach started churning and cramping. I not only had diarrhea, but I came very close to throwing up. I think it was just from my nerves, but this would never have happened before I had Parkinson's. It makes me so very nervous to work with him, because I'm so slow at everything I do. I'm afraid he's going to fall while I'm trying to get his pants down. In fact, I'm afraid he's going to fall every time I do anything with him. Really, I'm just afraid, period. Even though I know exactly what I want to do, I have no confidence that I will be able to actually do it, anymore.

DH and I have eaten lunch, but we've left Daddy sleeping for now, as he's exhausted. DH is asleep sitting on the sofa, and I'm blogging and resting. We're all three worn out from the morning's doings. LOL

This nurse says the other nurse will bring the air mattress when she comes later in the week, which should help his bottom a good bit.

I managed to control my temper while the nurse was here, as I didn't see that anything useful would come from letting her know just how mad at her I was. My DH knew I was mad, but I don't think she ever realized it. I hope not, as we have to work with her.

But if we have another situation develop like this one, I doubt if I will be so restrained.

Miralax, Zelnorm, Glycerin Suppositories Update

I just thought I'd been bring you up to date on how the regimen the Gastroenterologist put me on for constipation is working. I'm currently taking the Zelnorm in the morning at least 30 minutes before breakfast, and again in the evening. I sprinkle 17g of the generic form of Miralax on my high fiber cereal each morning. (It comes with a marked dose cup.) I can't even remember the last time I had to take the glycerin suppositories. The Bowel Retraining routine worked in about 10 days of using the suppositories at approximately the same time each day.

I'm no longer having problems in the bathroom, and have not had for some time now. I don't want to "jinx" it, but it looks like that difficulty has been overcome, thanks to Dr. B.

Strange Things Are Hapnin'

I went to my Neurologist last Friday, and I explained to him all that had been going on the whole time I was trying out the Zelepar. He agreed that the medicine had not received a fair chance at working. So, he gave me a prescription for it, with instructions to use if for a month. If I was not pleased with the way it relieved my symptoms, I could then add the Requip I have taken before back to my schedule. Now that my digestive system is behaving, I told him I thought I could handle the Requip just fine.

Of course, being the little town that ours is, our Pharmacy didn't have the Zelepar in stock. He has to order unusual medicines, but they come the next business day, and that works OK, most of the time. Of course this was Friday afternoon, when we dropped off the prescription, so I was without all weekend. I did the only thing I knew to do - I used the Requip I already had. My tummy didn't complain a bit, either.

My throat is still irritated, and I finished the antibiotic today, so I'm thinking I'll see if the nurse will swab my throat again, or just refill the prescription. I'm not convinced that the strep is gone, and I can't afford a relapse. I had rheumatic fever as a baby, so my heart is particularly vulnerable to strep infections.

I'm feeling good about the medicines Dr. S. has me on for the Parkinson's now, and I'm sure my GP will take care of my throat, so things are settling down for me.

It's just as well, because Daddy continues to decline. His arm is much better, thanks to the arm band, but his mind, and his body in general, continue to go down hill. We've had some difficulty all along getting his bowels to move, as one might expect from a 101 year old. I was using the glycerin suppositories I had to help him go, plus he is on Colace as a stool softener. The last time I used the suppository, it didn't help, which I thought was strange. So, I figured, since I use two of them, I'd use two on him. To my surprise, I discovered the first suppository still in place - not melted in the least! His body temp is so low that it didn't dissolve!!

So, even though I had been trying to put it off, I felt I had to call the Hospice Nurse, and request help giving him an enema. The enema was an ordeal for him, but it helped. That was yesterday. Today, his strength is noticeably less, and his confusion is noticeably more. His mind and body just can't cope with any kind of assault now, even if it's for his own good. Going to the Orthopedist sent him downhill, and the enema just pushed him that much further.

I can only pray that I will do well on the Zelepar, or the Zelepar and Requip combination, as I think it's clear that Daddy has taken a definite turn for the worse. In God's good time, this will all work out. I just have to take one step at a time, and leave the end results to Him.

My Digestive System Is Behaving! Not So Sure about Us??

It looks like the Gastroenterologist has found the right combination to get my digestive system working again in a manageable way. I haven't had any pain or bloating now for several days, and I've been able to eat some things I wouldn't have dreamed of trying just last week. I still don't have an appetite, but I still need to lose weight, too! So I'll count that as a blessing for right now.

We had our Date Day today, instead of yesterday, because our respite care giver couldn't come yesterday. We had an enjoyable day together, not really doing much, but just relaxing. With my balance as wacky as it is right now, there's not much else we could do.

Daddy, DH, and I had our first big flare up of tempers this evening. It was just a matter of time before it happened. We've been trying to stall it by getting out of the house a couple of days each week, but it was inevitable.

Daddy hates the idea of having anybody in his house, doing things he would normally be doing, or changing his routines. He's been independent too long to take easily to having DH and me here, and certainly to having Frances here two days a week. And he hates not being able to take care of himself any more.

We've understood how he felt, so we've been biting our tongues ever since he fell, as his bitterness shows through in almost everything he says to us. Hopefully this show of temper on all our parts will clear the air for a little while, but that remains to be seen.

So my relaxing day had a somewhat dramatic end, but as thick as the tension has been around here, it may well have been for the best in the long run. I can only hope so.

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.