I’m still quite sick with the strep infection, with lots of hacking coughing and laryngitis. I’ve spent most of yesterday and this morning dozing in the chair, doing my best not to talk at all. I called the doctor’s office yesterday to see if I was being unrealistic to think that I should be seeing some improvement, and they called in an oral antibiotic and something to quiet down the coughing.
Well, what can I say. I woke up Friday with a scratchy throat, and spent the day sucking one Halls after another, trying to keep the sore throat at bay, as I did not want to ruin our Date Day. We did have a nice time together, but by the time we got home I was feeling rough. By Saturday morning I was really sick. Hubby’s Easter Cantata was Sunday morning, so I went to church, even though I probably should have stayed home.
By Sunday night I was running a fever, and I felt even worse by Monday morning. So, I went to the doctor with my suspicion, and the test came back positive, as I had suspected. Strep.
I’ve had strep throat so many times over the years that I can almost tell when I’m getting it again. I still have my tonsils, and when it hits it hits hard and fast. None of this week of a cold that doesn’t get better … no, Mr. Strep hits full force from day one.
He gave me a shot, and hopefully I will be feeling better in a few days.
His nurse asked me if I was checking my blood glucose levels, which came as a surprise, as nothing had been said about doing that when they said I was borderline diabetic and put me on Glipizide. So, we stopped at Walmart, and I bought the testing kit that had the cheapest strips. They really do cost a lot!! The one I bought has strips that cost about $.50 each, while most were more than a dollar a piece. I read all the directions and tried to take a test reading before lunch and another two hours after lunch. Assuming I did it right, the blood glucose level was 90, which is smack dab in the middle of the normal range.
I had such a hard time finding anything I thought I dared eat at our local Chinese buffet on Sunday, I am looking forward to being able to quantify that food’s effect on my blood sugar, so I’ll enjoy eating there more.
Of course for now, there’s no exercise program going on. Aggravating! I was doing really good, too. But it wouldn’t be a good idea to stress my body right now. I’m still counting carbs and reading everything I can get my hands on about pre-diabetes and diabetes. I’m keeping a daily detailed log of my food intake, with carbs totaled. And I’ve learned a whole lot about diabetes, too.
I’m feeling much more knowlegable and in control right now, so now I just need to get my throat and all the post nasal drip settled.
On a brighter note, we mailed more packages yesterday than any other single day ever.
So, I continue to read everything I can find about diabetes, I’m learning to use the testing kit, and I’m getting as much rest as possible, while I wait for the Strep to go away.
When I posted a couple of days ago, things were looking pretty grim with Daddy. But each time I’ve not been able to get him to eat much, I’ve been giving him his medicine with Boost to drink, instead of water. So, he’s a little stronger now than he was.
Frances stayed with him yesterday, so we could go to Sunday School and church, and have a little free time to ourselves after lunch. Daddy didn’t want to get out of the bed before I left, but Frances said she’d deal with whatever needed to be done. Thank goodness we have someone with him I can actually trust him with. We are very fortunate.
We were pleased to find, when we returned, that he was lucid and had been using the walker all day. DH had a deacon’s meeting to go to, so I took care of supper and putting him to bed all by myself. I did take him to the bedroom in the wheelchair, because he had gone sound asleep in his chair already and he seemed woozy. But I didn’t have a problem making the transfer, using the walker to make the change, instead of having him hold onto me.
This morning was not quite as normal as I would have hoped, but it wasn’t too bad. The hallucinations have been mild today, and he’s walked most of the day. I did use the wheelchair to take him to breakfast, as I had him by myself again. DH had to travel to a family funeral.
We get the hospital bed this afternoon, so that will make a lot of things easier for us. And Daddy surprised me about that. He protested when he realized we had ordered it, but I was able to get him to understand that we had followed his wishes on that as long as we could. He hasn’t fussed about it since. That may change when he actually has to sleep in it, but I’ll deal with that when and if it happens.
Through all of this, the Zelepar has been working just fine. It was definitely the strep throat that kept it from working before. I’m still on the antibiotic, and my throat’s still sore sometimes, but I think the strep is gone finally.
So, all in all I’d say things have settled down again, but I know how quickly that can change. I’ll just be thankful for now and let next take care of itself!!
Evidently the reason I was not getting good results with the Zelepar was due to the strep infection. (I did get a refill on the antibiotic, so my throat continues to improve.) This time, my walking is quite normal, and so is my balance. I am taking the second dose earlier than I did last time, as I think it was one of the factors that was keeping me from sleeping. So this has been a pleasant surprise, and a welcome result.
As for sleeping, that’s been, shall we say, interesting? My Neurologist did not want me to stay on the Ambien CR continuously, although he did refill the prescription. So, I figured I’d better find some other way to get some sleep. It wasn’t working all that great any more, anyway.
Daddy has been taking one or two Tylenol PM for years, so I figured I’d give it a try. I tried two pills for two nights, then cut back to one pill. I was still waking up after a few hours, but went back to sleep quicker. I was getting more hours sleep with the Tylenol than I had been recently with the prescription for Ambien. Go figure. But, I felt drugged for several hours in the morning.
Time to try something else, right? I figured it was time I found out just how much sleep I would get without any sleep aid. The first night I got very little sleep, and wasn’t even sleepy the next day. But after that first night, I’ve been sleeping just about as much as I did with the Ambien. So, I’m just going to do without, saving the Ambien CR for special situations. That way, maybe I’ll get the longer sleep time, the way I did the first few nights I took it.
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.
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!
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.