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.

Just When I Start Sleeping Later ... THE TIME CHANGES!!

I can't win for losing! LOL!! I was finally putting together a string of days when I slept until close to 5:00AM, a real accomplishment for me, when the Daylight Savings Time changed on me this morning. So, I've been up since "3:30AM", even though my brain thinks I slept until 4:30AM. I am very pleased that I slept over 7 hours, but I know that I always have a hard time adjusting to these time changes. My appetite gets off schedule, and it has always taken me quite a while to adjust to the different sleep times. Plus, I have my Sleep Study this week. Not the best timing in the world, but it will have to do.

My neck is much better this morning, with pain and stiffness only when I try to turn almost all the way to the sides. I have been very careful with this spasm episode, trying to be very cautious with any stretches, trying to move just to the point of pain, but no further. I have not tried to advance the TAP screw any, since this spasm hit, but I am sleeping with the dental appliance every night.

I have reached an amount of extension of my lower jaw that makes it harder to get the pieces in my mouth. Now, I have to connect the two pieces before they go in my mouth, and then jut my lower jaw forward to meet the mouthpiece. Before, I could put the two halves in separately, and jut my jaw forward to hook them together. I can't unhook them in my mouth any more in the mornings, either. I have to break the seal with them still hooked together. That's not an easy thing to do, as they really fit tight. Of course, it's because they fit my teeth so perfectly that this contraption doesn't hurt, so I'm not complaining.

I exercise my jaws with the chewing pieces every morning while I'm on the computer, and don't even really have to think about it. It's about like chewing gum, really. Then, I also do a series of facial grimacing and stretching exercises for my Parkinson's, to delay the time when I will lose facial expression. The chewing strengthens my jaw, and should actually help delay the "Mask of Parkinson's".

I am in a better mood generally since I started taking the Bentyl, which is an antidepressant as well as an antispasmodic. I'm taking it to soothe my spastic colon, but I'll take any mood improvement I can get! I've managed to get started on several projects that I was previously just overwhelmed by, so that's a good thing. I even managed to put something new on eBay several days in a row, and posted some new requests for people searching for lost loveys on our Plush Memories blog. I'm still way behind on that, though. But I'm completely caught up on the BLOG VILLAGE membership screenings. The house is still chaotic, but that's nothing new. I never was a very good housekeeper, sad to say. I do love it when it's all uncluttered, but I never have been able to find the gumption to keep it that way. All in all, though, I can tell that I'm getting out of the doldrums I've been in for some time, and that's a very good sign!!

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.

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.

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!

Parkinson's Patch Approved in USA

Neupro, a dopamine agonist delivered in patch form, has been available in Canada and Europe for some time, but now it has been approved in the USA. The Requip I am on is a dopamine agonist, so I should be a good candidate for the patch.

I was disappointed on doing some research to find that nausea is still one of the more common side effects. I was hoping that my tummy would not be involved, since it's not a medicine that is swallowed. There's also a fairly high incidence of irritation at the patch site, and users are not supposed to put the patch in the same place more often than 14 days apart. Most of the other side effects are true of just about all the Parkinson's medicines, from dizziness to low blood pressure on standing. As a dopamine agonist, there is a certain level of risk of obsessive behavior and also of suddenly falling asleep. Driving can be risky. Thank goodness we're both retired, because my not driving has really not been a real problem for us.

So, although I had planned on bugging the Neurologist to change me to the patch as soon as it was approved, now that I know a little more about it, I probably won't be in such a hurry to push for it.

If anyone reads this who has been on Neupro, or is now on it, please leave a comment about your results and/or side effects.

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!

Lots to Do Settling Daddy's Estate

This is the second time I've been the executor of an estate, but Daddy's is much more involved than Pop's was. Luckily, we have a niece who is a lawyer, so I'll have some help when I'm ready. I've tried researching what I need to do on the Internet, and I've been surprised at how little help I could find. Everything seems to be geared toward Estate Planning, rather than settling an estate.

April 15th is getting closer, too, and I've just not been up to dealing with important numbers. I did get a good start today, though. Starting is half the battle for me, as I find I've become quite the procrastinator in the last few years. I don't know if that's a sign of old age LOL, stress, or Parkinson's!

We walked again this morning, but I was slow as mud. I made it around for a half mile, using the walker. I've been using the walker all this week, but I depended on it more today, as I could feel the tightness in my shoulders when I stopped. That slow as mud feeling is the first Parkinson's symptom I had, so it's looking less and less like I'll be able to continue on just the Zelepar. The Neurologist told me I could go back on the Requip as well, if I felt like I had to. I've resisted, because the Requip gave me stomach troubles last time. Well, I had stomach trouble when I was on the Requip - that doesn't automatically mean the Requip was causing it. It's that uncertainty that has kept me trying to do without it. I'm just not ready to cope with stomach side effects yet. Maybe next week.

I taught 4th and 5th graders for 25 years, but I've seen the "Smarter than a Fifth Grader" TV show a couple of times since I've been back home. It's scary how much my mind goes blank on stuff I know I should know. I hope it's just remnants of caregiver burnout, and not the PD effecting my mental abilities. Stress can really do a number on such tasks, so I'm trying really hard to relax as much as I can. But getting things accomplished is part of what's needed to lower my stress level, too, so it's a matter of finding a balance, I guess.

I continue to be uplifted by all the loving comments. You all really are helping. Just a thought for you, if you need to send a sympathy card to someone. One of our friends included a neatly cut out copy of Daddy's Obituary notice in their card. It was very much appreciated.

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??

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.

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!

Can I Keep Daddy in His Own Home Any Longer?

It looks like it's time to consider a Nursing Home for Daddy, something I never wanted, and he certainly won't want.

The last couple of weeks have been busy ones, as far as taking care of my Daddy is concerned. He woke up two weeks ago with his right arm in such pain and so stiff that he's been having to eat breakfast left handed. He can't even get the spoon to his mouth with his right hand. The Hospice nurse came and checked him out, but she couldn't find anything in particular going on. She did get a prescription for Ibuprofen, so I've been alternating every four hours with the Motrin and Extra Strength Tylenol. By lunch time his arm has been better, but it starts all over the next day, just as bad as the day before.

With his arm like that, he's having more difficulty getting out of his chair and the bed. Eating has been very frustrating for him, and he's having more trouble using the walker. I've been trying to help him get up and down, to give his arm a chance to heal, whatever has been wrong with it.

Day before yesterday, the nurse looked at it again and was concerned about a good bit of fluid build up around the elbow and upper arm. I knew his hand was swollen, but I hadn't realized the upper arm was larger, too. Anyway, she made an appointment for us to see his GP, Dr. M., in case it was a hairline fracture from the original fall, or something like that.

I didn't realize until yesterday just how much worse Daddy is than he was when he first fell. Trying to move him from the chair to the wheelchair, and then from the wheelchair to the car, was just about impossible. I wore myself out trying to do it. Luckily, Frances, our sitter, was there to help move him into the car, and she was panting by the time he was in. It's so much different than when we took care of Mama and Pop. They were both small people, not weighing more than 100 pounds, and they both cooperated. Daddy is about 160 pounds, and he's a dead weight. To make matters worse, he doesn't trust anybody, so he kept grabbing hold of the car door for dear life, and we had to peel his hands free to get him to hold onto us to maneuver him.

We asked for help at the doctor's office, getting him out and back in, so at least we didn't have to struggle with him there. But then, of course, we had to get him out of the car and back in the wheelchair on our own when we got home. He wasn't any easier to move then than he had been at first.

The whole ordeal was extremely upsetting. The worst part of it was that the doctor no longer has an X-ray machine, so it was more or less a wasted trip. We have to see an Orthopedist next week. That means going through all this again. I did mention to Dr. M. that I had a sore throat, so the nurse swabbed it, and I have strep. So now I'm on antibiotics. At least we accomplished that!

Yesterday's events have forced me to reconsider just how much longer we are going to be able to keep Daddy in his home. I can see that he's fast reaching a point where I won't be strong enough to take care of him. My DH and my Daddy have always had, shall we say, a cool relationship with each other. So DH gets frustrated with him, and Daddy stays mad at DH. My hubby is here for me, and doing a great amount of the work, but he's just not up to the cheek to cheek "dance" it takes to move someone who's not able (or willing) to help. And I've had a lot more practice at it, too. It is a skilled maneuver, but with Daddy, I'm just not strong enough to do it well.

So, I started thinking about Assisted Living homes vs Nursing Homes last night. I really don't think an Assisted Living place would take Daddy, but he's so mentally alert most of the time I hate the idea of a Nursing Home. I don't think I'm going to have a choice, though. We had visited just about every good Nursing Home in this area when we were caring for my mother and father-in-law, so I have a pretty good idea which ones to check for vacancies.

We have an appointment Tuesday with the Orthopedist, and his diagnosis of what's wrong with Daddy's arm will have a lot to do with where we go from there. If he puts Daddy's arm in a sling, we're in a mess. So, we'll get through the next few days as best we can, and go from there.

All this has been happening while I was supposed to be giving the Zelepar a fair trial. Considering how yucky my throat has been the last couple of weeks, and how much more work has been involved in taking care of Daddy, plus the extra stress of seeing him deteriorate, the Zelepar really hasn't gotten a fair trial. I'm not walking as well as I did with the Requip, but my stomach is definitely better. From recent reading I've done, I understand that this is the maximum dose of Zelepar, so that's not likely to improve, unless it's because of the increased stress, or because I had strep, and that effected my walking.

So at the moment, my thoughts are up in the air, with lots of questions, but no clear way to answer them right now.

Tummy Improvement OR Walking Faster?

I've been on the new Zelepar medicine for several days now, and my digestive system is behaving just fine. I don't seem to be getting quite as much help with my gait as I did with the Requip or Sinemet, however, but I'm still on the samples. When I go back to the Neurologist next Friday, it may be that he will order a prescription for a higher dose or more doses, which might make the difference. Anyway, even if the dose stays where it is now, it seems like a reasonable trade off between stomach problems and balance and walking problems. I'd love to walk better, but I can live with it the way it is now, if I have to. It's nice not to spend part of every day miserable, with a hot pad on my tummy!

I said at first the Zelepar didn't taste bitter, however, I'd better amend that evaluation. Yes, it is bitter, but not enough to bother me, anyway. (The trick is to be sure you place it under, not on, the tongue.) It dissolves under my tongue so quickly that it's just a few seconds, and I can swallow it. You're not allowed to drink or eat anything for at least 5 minutes before or after taking it, but my saliva quickly washes the taste away.

We're still staying with my Daddy, which means I spend most of my days and every night in a hot house. We tried to find a compromise temperature for the thermostat, but at 101, he gets too cold, while we're still sweltering. I have noticed that I'm having more trouble with the heat this week, since I've been on the Zelepar, than I was before I started taking it. I'm getting what feels exactly like hot flashes several times a day, and I've been past that stage for some time now. I have read that Parkinson's can mess with the body's regulation of internal temperature, so I guess that's what's happening to me right now. Or is it because of the Zelepar? I really don't know.

I was on Requip before starting the Zelepar. Requip is a dopamine agonist, but Zelepar is an MAO-inhibitor, so they don't attack the PD symptoms the same way. There's big news in the Birmingham News today that a doctor at UAB is close to getting FDA approval for a patch version of a dopamine agonist. That will be good news for me, as the Requip did a better job of improving my balance and walking than it looks like the MAO-inhibitors are going to. I'm all for any PD med that I don't have to swallow!! So this is something else for me to be hopeful about.

It's great to see that there is good news on the horizon for the large number of people who really suffer with this disease. My own symptoms and discomfort level are so mild compared to people who have had Parkinson's for years. I pray that all this new research may bring them relief in the near future, instead of years from now.

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.

A Quiet Christmas

We had a very quiet, uneventful Christmas today. Meals on Wheels always gives Daddy a Christmas present, but for some reason this year there were several. So we made a big deal of having him open them after breakfast. As usual, he didn't really show any emotion one way or the other, but that's just the way he is. DH had been recording all the Christmas TV programs he could find, so we watched the Mormon Tabernacle Choir, a fantastic bell choir, and a few other choirs today. Daddy slept through most of it. Both our DD's called, and Daddy talked to them a little. We got on the extensions and chatted with them for awhile, which helped me feel a good bit less lonely.

DH had bought the makings of a really nice Christmas dinner, so he and I put that together, plus some leftover cornbread and turnip greens Frances had made Friday. It was a really good lunch. We both nearly choked when Daddy told our DD's that we had leftovers for lunch!! He doesn't have a clue that he hurts our feelings with his lack of appreciation for anything we try to do for him. I should know better, as he's always been that way. I was always Daddy's little girl, always trying to please him, and never succeeding. I finally figured out that the problem was his, not mine, but even now, it still stings sometimes.

The Miralax is finally beginning to take effect, although I still spent a good part of the afternoon with the hot pad on my tummy, trying to quell the discomfort. Hopefully, in the next few days, I'll really begin to feel better.

All in all, it was not nearly as bad a day as I was expecting it to be, but certainly not as enjoyable a day as it usually is. Talking with our daughters and being with my wonderful hubby all day today made a huge difference for me. I also enjoyed emailing and blogging back and forth with several really great cyber-friends, who have a lot to do with me being able to stay upbeat most days. For that I am truly grateful.

So, yes, it was a quiet Christmas. We listened to a lot of beautiful music. We shared each other's company. We talked with family and chatted with friends. It was a good day, after all. Merry Christmas!

I've Lost Christmas!

Ya know how sometimes it's too warm when you should be Christmas shopping, and it's just hard to get in the mood? Well, something like that has happened to me this year. First, we have had shirt sleeve weather, which doesn't help the situation any, but that's not really the problem. It just doesn't feel like Christmas to me this year.

We're not going to see either of our daughters or their families this weekend. We didn't decorate our house, because we haven't been there enough to do it, nor to see it if we had. We put a tiny tree up in Daddy's living room, but that's it. Our only Christmas shopping was over the internet, so we haven't been in any of the crowds, nor had the fun of looking for all the little stocking stuffer unique oddities that our grown kids and grandkids look forward to. I've even missed all the Christmas programs at church.

Oh, we've had the songs on the radio, but they start that way too early, so it loses its effect. My Sunday School Class did come by here on the way to their Christmas party and sing Christmas carols to Daddy. That was about as close to feeling like it really was Christmas as I have felt. In the vacuum of taking care of Daddy and trying to take care of myself, it just doesn't feel magical this year. And that's very depressing. There, I've said it out loud. Yes, I am depressed this Christmas, a feeling I have never experienced before on such a joyous holiday.

I never meant, when I started this blog, for it to turn into a place to wallow in self pity, but it sure seems more and more that's all I'm doing. I guess I could make excuses and call it therapeutic LOL. All I wanted to do was keep a running record of what it was like from day to day, for my own sake, and possibly to benefit someone else going through similar experiences with Parkinson's.

I was also hoping that by posting regularly, my keywords would attract other PWP through the Search Engines, and I could enjoy some conversations with other people going through the same things I am. That hasn't happened, either. Maybe it will in time, but right now the Page Rank of this blog is still zero. It's hard to move up through the Google ranks, and it takes time and patience.

So we take one day at a time, each one feeling pretty much like the day before, expecting the next to feel pretty much like today. It's a care giving rut that leaves no end in sight, because only God knows the outcome of all this. All we can do is our best from moment to moment.

Another Medicine Change

When DH got home last night, there was a message from my Gastroenterologist that I am to call back. He wants to make another medicine change, if I'm not any better, and I'm not. So I'll be talking to his nurse today to see what she has to say.

Night before last I enjoyed a very good night's sleep for the first time since the first night or two after Daddy fell, thanks to Ambien CR. But last night I was up to my old tricks again. I've probably had enough hours of sleep, but it's been in fits and starts, not in a solid stretch of sleep. I'm writing this in the wee hours of the morning, as there's really nothing else to do at this time of day but get on the internet.

So I'm Stopping the Requip

I went to my Neurologist today, and we discussed my digestive problems, hair loss LOL, and insomnia. His solution was to taper off the Requip until I have quit taking it completely and see what happens to my stomach problems. He also gave me a prescription for a time release version of Ambien. And, of course, if it was the Requip that was causing the hair loss, stopping the Requip will take care of that situation.

I told him about writing to the National Parkinson's Foundation "Ask the Doctor" site, and what that doctor suggested. So he's given me some samples of the medicine the NPF doctor suggested I try. I'm not supposed to use it until I've completely stopped the Requip, if I can possibly stand it. But I explained we were taking care of my Daddy, and I might not be able to put up with my impaired walking that long. He wants me to try, so he can get a fair assessment of how the new medicine works, but he does understand our situation.

He gave me samples of Zelepar, one of the brand names of Selegiline. It dissolves on the tongue, so it does not go through the digestive system at all, but straight into the blood stream. I have high hopes for this medicine. It is also a different type of medicine than I have had before. This one is an MAO inhibitor. I'll have to do some research to fully understand what that means.

I am very thankful that all the research over the last few years means there are a lot more different types of medicines for him to try on me than there used to be for Parkinson's. None of them slow down the disease, or do anything at all to cure it, but they do help with the symptoms. For now, that is a blessing. Hopefully, in my lifetime, they will find ways of at least slowing the disease down. And who knows, maybe they'll even find a cure.

Waiting to Talk to the Doctor

I stayed home from church yesterday morning and tried to sleep. I think I did doze some, at least. I felt more rested by the time DH came home, anyway. It did feel good to be in my own recliner, under my own quilt, in a COOL house. I haven't slept in a bed for years, because of my back, but there sure is a difference between my recliner and the one up at Daddy's!

There's been no change in the status of my digestive problems yet, and I've put in a call to the Doctor to give my progress report. His nurse called back, so Dr. B may be calling me this evening.

Everything else has been pretty much routine today, and I guess that's good. Our eBay sales will be winding down in the next day or so, as it will be too late to get them to anybody before Christmas. Then we'll start selling the vintage collectibles that people tend to buy for themselves after Christmas.

The Ole Brain's Missing it's Sleep!!

Today more than any day so far I've been able to tell that my mental sharpness has dulled from lack of sleep. I can't count how many strange mistakes in thinking I've made today. DH has sent me home for a couple of hours to try to decompress from whatever tension I might be feeling at Daddy's house, but it just doesn't seem to be enough to do any good. What I really need is a good night's rest.

The really strange part is that I'm not in the least sleepy! I'm not hyper, either. I feel perfectly normal, until I do something really, really stupid, and then I wonder where did that come from. But I really know where it's coming from. I just don't know what to do about it.

I go to the Neurologist Tuesday, so I'll try to last on the sleep the Ambien gives me until then.

Daddy was stronger this morning, and his own barber came over and cut his hair, which pleased him immensely. But he's been sleeping in his chair literally all day today. So whatever happened yesterday morning has taken its toll on him again, evidently.

I continue to battle the digestive problems, trying to follow the new instructions from Dr. B today. No real change, yet, but it's too soon to expect any difference, really.

Doctor Recognized My Symptoms

I went to my Gastroenterologist today, and I went into some detail about the stomach and general digestive problems I've been having for some time now. He recognized what I was describing, and even had a worksheet of instructions already printed up with how to deal with my set of symptoms. He definitely said this problem was caused by my Parkinson's medicine, Requip, and not by the Parkinson's Disease, itself.

I was correct in my guess that my digestive system had basically quit moving things along, but apparently wrong as to the reason, as I thought it was the PD causing it.

Anyway, he assures me I will be feeling much better in a few days, and I'm to call his nurse Monday with my progress report. Hopefully, I will have a good report for her.

Daddy woke up this morning barely able to balance well enough to sit on the side of the bed without falling back over. It was much harder than usual to get him dressed, and I was glad when DH got there, so he could help me walk him to the kitchen for breakfast. By then, Frances had gotten there, and we cautioned her that he was very unsteady. When we got back this evening, she said whatever was going on earlier had passed by mid morning, and the rest of the day was normal. I don't know if he had another little stroke in the night or not, but he sure was different for awhile this morning.

I'm very thankful I have someone I can leave Daddy with that I have confidence in. Otherwise, I probably would have postponed my own appointment today, and that would not have done either one of us much good.

Seeing My Doctors Sooner

I was quite surprised to not only be able to get an appointment with my Gastroenterologist this Friday, but I was also able to get one with my Neurologist next Tuesday. The Neurologist appointment really surprised me, as I know how long I've had to wait before to get one. I must have lucked up on one somebody had canceled, but I'm thankful for it, regardless of how I got it.

I'm hoping that, between the two appointments, a definite solution to my stomach problems can be found, and I also need to have a different sleep aide prescription besides Ambien.

The Friday appointment won't be a problem, because Frances comes on Friday's anyway, but I'm just keeping my fingers crossed that she can come on Tuesday. She's out of town right now, so I'll have to call tomorrow to work out the details. If she can't, then I'll have to start calling church members to find somebody who can sit with Daddy for us.

I want to thank you, friends, who put up with my daily moans and groans, to give me an encouraging word. I really need that encouragement right now. Our situation with Daddy has settled into pretty much of a routine, but there are still a lot of questions about what the future will hold. It's hard to imagine that he will recuperate from this episode and be able to live by himself again. But I keep reminding myself that he's "graduated" from Hospice once before. He really is amazing! Cantankerous, but amazing!!!

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.

We've Hired a Respite Aide!!

I talked to Daddy yesterday about me needing some rest and a chance to settle my nerves and my stomach, and the fact that I had a doctor's appointment coming up that would require finding someone to stay with him that day. He was agreeable to me trying to get the lady who had stayed at the house when I needed relief with Mama. I was a little surprised he agreed to it so quickly, but very glad he did.

So, I left a message for her to call, and she and I made some arrangements last night. She's going to spend all day on Friday and part of the day on Sunday with Daddy, so DH and I can get completely away from the care giving responsibilities for just a little while. That will be good for us both, but particularly for me, I think. It also means we can go back to going to the yard sales and Estate Sales and having our Date Day again. I've really missed that. And I can go to at least Sunday School, and probably church, too.

Thank goodness Daddy has never been one to spend a lot of money, so we should be able to take care of the respite care costs without a problem. I really feel for those care givers who are not able to pay anyone to give themselves a break every once in awhile. I hope for their sakes that they have family nearby who can spell them. Since we don't have family near, this is our best choice. She's already used to Daddy, and he's already used to her, and we trust her. We couldn't ask for a better combination.

Frances was so excited to hear from us, being the Christmas season, and she was between jobs. She was more than happy to take part time work, under the circumstances. I told her we'd understand if she found full time employment, as long as she kept her obligation for my Dec. 20th appointment. She agreed. So a salary was agreed on, and she will be at Daddy's at 7:00AM this Friday!!

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!

Muddling Through a Rough Day

Well, it was good while it lasted, but the Ambien didn't keep me asleep last night or the night before. I had a particularly rough day with Daddy yesterday, too, so the sleep would have been helpful. Daddy was way over in the middle of his Queen sized bed and couldn't seem to get up yesterday. I tried helping him get into position to sit up, and even pulled on him some, but he sat up several times and fell back over each time. I called DH to come up and help early, which he did. By the time he arrived, I'd finally gotten him to sit on the side of the bed, and I'd managed to change him out of his wet night things. But I sure wasn't going to try to help him walk up the hall to the living room, not as worn out as I already was, and as weak as he was.

We worked together to finish getting him dressed and get breakfast on the table, and afterwards we took him to the toilet, because he hadn't had a bowel movement in several days. I gave him a Dulcolax the night before and prune juice for breakfast, so it was time to expect results. Nature finally took care of things, but it seemed to wear him out, as he slept in his chair almost all morning.

Without going into any details, I had quite a cleaning to do in the bathroom, and it set off the nausea, just as it has ever since I've been on the PD meds. I tried all day long to relax, take some gas pills and antacids, but nothing would settle my stomach. It really didn't stop hurting and cramping on me until about bedtime. I blamed a lot of it on tasting the pork and beans at lunch, but my tummy was already tender before that.

Let's face it. Care giving involves dealing with some less than pleasant bodily functions. We dealt with them when our children were babies, and we deal with them again when our parent's bodies return to the state of babies. There are times in life when such tasks are easier to deal with than others, I guess, because this is certainly not one of my better times. DH isn't very good in this particular department, either, although he's improving out of necessity, God love him. I took care of all this sort of thing with my mother and his Dad, but now he's having to help, and he's doing his very best to survive it. He's from the generation that didn't even change diapers, either, so he doesn't even have that experience to fall back on. Under the circumstances, he's doing fantastic. I can't brag on him enough.

I can't help but wonder if it has occurred to him that he's getting the practice he will need to take care of me someday, hopefully way off in the future. It has certainly occurred to me!

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!