Tag Archives: pain

Wonderful Weekend!

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We used our Date Day Friday to work our way up toward Huntsville, where our younger DD’s family lives. We haven’t been to see them at their home since last Summer, thanks to all that’s been going on with me and with my Daddy. So, we had a wonderful time getting to visit. We even got to watch our twin granddaughters play in their Softball game.

My knee behaved itself, although I was careful to use the cane up and down her steps and at the ball park. When we got home, I have a message to schedule the MRI, as insurance has already approved it. Our older DD has a couple of job interviews lined up, the Will stuff is moving along nicely, and our eBay sales have picked up, now that I’m listing new items almost every day.

We even had rain today, which was so badly needed around here.

Speaking of weather, however, reminds me to say a prayer for all those poor people who have lost everything – even their town – in the Midwest, from tornado damage. May God’s hand be felt close to them. He’s always there, but sometimes we just don’t realize it. I pray that they will feel His strength and comfort in this horrible time they are all going through.

I’m sorry I’ve not been able to get back to reading everyone’s blogs yet. It just seems like my list of things to do gets longer, instead of shorter! LOL And I do appreciate you checking on me, particularly since I’m not reciprocating.

I’ll be calling my insurance company tomorrow to find out where I stand on the number of PT visits I’m allowed, but I do have a PT appointment for tomorrow, anyway.

I’m looking forward to a great week, and I hope you have one, too!

Getting Back to Normal?

Day by Day with a Movement Disorder Posted on by 6

I’ve gotten a lot done in the last few days. We’ve had the appraiser out to the house, the taxes are ready to sign and mail, and I’m almost finished with the tax bookwork for our paid caregiver. I finally gave up and went to the Orthopedist about my knee and shoulder, too. The X-rays showed the degenerated cervical disk I already knew about, and arthritis in my knee, which wasn’t surprising. Dr. J is guessing that I have a torn miniscus, but it will take an MRI to determine that. From what I’ve been able to read on the Internet, that seems like a reasonable diagnosis to me, particularly since it was injured when I was shifting Daddy up in the bed.

I’ll have to go to Physical Therapy and stay on Extra Strength Tylenol 3 times a day before my insurance will agree to the MRI. That’s fine with me, as far as the therapy goes, as I’m sure it will be helpful. The Tylenol doesn’t even faze the pain, but I’m following his directions and taking it regularly.

We’re still walking at the track early in the mornings, but it’s been way too cold the last few days. Alabama is having record cold weather right now. So, we’ve been doing exercises from videos. DH is REALLY following the tape, and I’m bouncing on one of those little trampolines and doing as much of the arm movements as my shoulder will let me.

I’m still just taking the Zelepar, hoping that the exercise and whatever the doctor does for my knee will be enough. I just don’t want to try the Requip, if I can possibly help it.

We had our usual Date Day Friday and enjoyed looking at lots of Estate Sales. We’ve never been able to be an Early Bird before! It was strange to get there before most of the stuff was gone. And we did manage to pick up a few good buys, I think.

It’s been ages now since I’ve taken pictures and put anything on eBay, but I’m going to try to get back to that this week. We have an almost overwhelming amount of “stuff” we’ve bought in the last few years, and I haven’t been able to work seriously on our online sales for almost 2 years. With so much of the Estate business started now, I’m ready to get back to NORMAL.

Still about the Same

Day by Day with a Movement Disorder Posted on by 6

I’ve called Hospice back out here twice, because he was in pain that I couldn’t resolve with the Morphine, or his breathing was worse. They’re good to come, but it takes over an hour for them to make the drive. His heart is still strong, although the body is all but shut down.

I managed to get a little sleep last night, but mostly it’s my arm keeping me awake. It’s still very swollen above the elbow and painful all the way down to my finger tips. It’s hard to say if I pulled a muscle, irritated a tendon, or if this is from the Parkinson’s. Whatever it is, I’m not helping to change Daddy now. We have the nurses and aides coming, so Fred helps them do it. Daddy’s bottom looks horrible now, but it’s to be expected, since we have quit trying to turn him. He’s just in too much pain when we have to, to put in a suppository for pain, or to change him. He’s resting peacefully almost all the time, if we just leave him alone. So I’ve opted for bed sores, rather than upsetting him every 2 hours.

Frances is here today, so I’ve left her with Daddy, and I’ve moved up to the living room to try to get some sleep. Just thought I’d jot off how things are right now, before I try to get some rest.

Time I Tried to Catch Up

Day by Day with a Movement Disorder Posted on by 2

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.

Testing … Testing … This Is Only a Test

Day by Day with a Movement Disorder Posted on by 15

I thought I’d o a post without any back spacing or spellchcking, just to give you folks an idea of what my typing is like these days. This will also give me a benchmark as to the extent of my mind/finder coordiatniton at this time. so bear with me while you try to read my gobbledytook. LOL

Daddy an di both ahd a good night’s sleep slast night!! so I’m much more rested to day that usual. We;re beginning to settle into something of a routine finally, alsthough we’re still experimenting with ways to make the lift help us the most effiiently.

I did have to call the night service night efore last, because he was choking on his own spit in the bed about several hours after he went ot sleep. I tried moving the head of the bed up and down and turning him from side to dide, but nothing seemed to help. I think the nurse thought i was describing a death rattle when I first talke to her, but I assured her that I knew that sounded like. She said to wake hime up and see if that would help with stronger coughting. I let the bed flat, turned him onto this side, slapped him on the back the way cystic phibrosis patients done, and this huge glob of thick mucus finally came up. Surprisingly, he went right bakc to sleep, and slept well the rest of the night. I didn’t thogh, as I was afraid it would happen again.

I seem to be going from one problem to another, as far as I’m concerned. Now it’s my back hurting again. It’s not the vertebrae, but the muschles of my upper back. That’s from leaning across Daddy, even though we have the hospital bed. This is definitely from the Parkinson’s, so I guess it’s time to add the Requip to my meds again.

I can tell immediately when I make the se spelling mistakes and typing mistakes. At least I know it’s wrong, but I take spellls of not being able to cooridante everything einvolved in acutally typing, And I really wa sa good typist, so it’s not because I don’t know how LOL!!

Well, of you’ve srubbled thorugh this you have some idea of the whats’ involved in turning out a post the way they usually lool. It’s the same with comments.

Did I say that Parkisons’ is a terible disease? And I’m ant Stage One!!!!

What a Difference the Right Equipment Makes!!

Day by Day with a Movement Disorder Posted on by 7

This morning was my first chance to take care of Daddy from a hospital bed that worked properly. It made quite a difference, although I still had problems getting him to follow my directions. I was able to change him out of the night Depends, clean him up, and get fresh ones on, put on socks, pants part way, and shoes, before I ever let the bed down for him to sit up. That is a BIG help. He rolled away from me, following my directions perfectly, but when it came time to roll toward me, he kept trying to climb over the rail!! DH heard me struggling to get his legs back in, and came and helped me get him on his side, so I could finish the Depends. Next time, I’ll put his trousers on around his ankles first, so it will kind of “hog tie” him. LOL

Having the right equipment does make all the difference in the world when care giving. I’ve been very concerned about Ruth and Mick, after seeing the terrible bruises he gets from a wheelchair that doesn’t fit his needs properly. I wrote The Voltage Gate and A Hearty Life, thinking that they might have some scientist friends who could help her adapt the wheelchair better. If you know anyone who might be able to help her, I sure would appreciate you sending them the link to her post.

Anyway, we continue to take one day at a time, even one hour at a time, with Daddy, just trying to keep him as comfortable and as mobile as we possibly can.

A Clinical Trial of One??

Day by Day with a Movement Disorder Posted on by 2

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

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

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

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

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

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

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

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

Miralax Effectiveness Evaluation Week 1

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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.

Same-o Same-o

Day by Day with a Movement Disorder Posted on by 6

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

Day by Day with a Movement Disorder Posted on by 4

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.