Tag Archives: Neurologist

Still NO Sleep

Day by Day with a Movement Disorder Posted on by 6

Insomnia is turning out to be my biggest problem right now, because it effects my stamina and mental agility as the day wears on. I start out each morning all fresh and energetic, even with only 4 hours sleep. I’m wide awake and rarin’ to go! But I fizzle. Not surprising considering it’s been over a month since I’ve had more than 4 hours a night. I doze in the car when we go anywhere, but other than that, there’s nothing.

My Neurologist appointment is coming next week, and he had mentioned doing a sleep study. I think it’s time, don’t you?? I can’t imagine what he can do about it, though, as I’m comfortable in the recliner, and if I snore, there’s no one nearby to tell me about it LOL. I do hear my DH sawing away in the bedroom, though. Ah! Maybe HE’s the culprit!! ROTFL

I’m really proud of how much stronger physically I am right now, and I’m determined to keep up the good work. I’m doing the Tai Chi almost every day, which definitely improves my balance, walking about 6000 steps on average, lifting 1 lb weights to do the arm exercises, and working around the house more than I have in a long time.

We’re about to close on Daddy’s house, so that will be out of the way. That leaves his car and all the stuff in the house to get rid of, plus some small insurance policies to deal with. UGH!

I continue to stay behind on all my computer work, but the eBay business is picking up, now that I’m listing new items every day. Maybe in the year 2020 I’ll have all of the things we have been buying at Estate Sales sold. HA! Maybe … but we keep on buying, ’cause that’s the fun part for us, as we do that together. One step forward and two steps back! All the online part is strictly my doings. Hubby can’t stand computers.

I really do miss all of you, but I just can’t work it all in. I don’t think I think as fast as I used to.

Quadriceps Are Giving Me Fits

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Well, I think the Physical Therapist came close to killing me last Thursday LOL. The tops of my thighs, where the quadriceps muscles are, were so sore Friday through Sunday that it was all I could do to get in and out of the car or sit down or get up from even the handicap toilet. I spent the whole time on strong pain pills, and much of it with the hot pad in use.

So, when I went for therapy yesterday I was very quick to let her know that whatever she did Thursday was too much. She cut way back and basically just did a few warm ups and then put me on the ultrasound, electrical stimulation, and moist heat for a long time. She doesn’t want me to walk at the track but every other day for one lap, avoiding the days when I have therapy. She says as weak as the quadriceps are that she’s afraid I will lose my balance or start to fall. Without the quads being strong, she says I’ll damage my knee. She was also surprised that I was able to walk even the quarter mile around the track once, even with the cane. She says I’m compensating in some way for the weak quads, which means I have just completely forgotten how to walk normally. I really try to do it “right,” but I must not be, according to her.

She did say that the other PN patient she has is doing better, and she did give her the URL for this blog. I’m going to be disappointed if she doesn’t write, as it will do me good to talk to someone who has a similar problem.

I was a good girl this morning, and only did one slow lap with the cane, concentrating on the technique for each step. Then I did my home exercises while DH walked his 2 miles. He lapped me 3 times before I could get around once! ROTFL

I go back to the Orthopedist next week, and I’ll decide after I talk to him whether I should try to get an appointment with my Neurologist sooner than scheduled. I suspect he will agree with me on that. He was planning on getting an MRI of my knee once I had the PT, as that’s what my insurance required before they would authorize the MRI. I am so thankful that I had this opportunity to go to Physical Therapy. It’s a shame that insurance companies are so stingy with authorizing it. I can’t get it for chronic conditions, so having Parkinson’s Disease or Peripheral Neuropathy wouldn’t get me permission. But wrenching my knee did!! Strange twisted logic – it’s OK for me to fall because of weak muscles sometime in the future????

The deadline for our BLOG VILLAGE HEALTH Carnival is this Friday, but I haven’t decided yet which post to enter from this blog. Too many to choose from, I guess. If you have a post you could enter, I’d appreciate your participation.

Sleep? What’s That???

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I’m tired. I’ve reached the point that I’m too tired to sleep, even when I could. I have the Ambien CR, but the Neurologist doesn’t want me taking it all the time.

Besides, I might not hear Daddy if I’m doped up. He’s becoming very unpredictable as to his sleeping patterns. There have been some nights lately where he hallucinated much of the night, even clawing to take off his Depends and trying to climb over the bed rails. Other nights, he talks in his sleep. I’ve had several lengthy conversations with him in the middle of the night, where he never opens his eyes, and I can tell he’s still asleep LOL! Other nights, he barely twitches a muscle, but stays in exactly the same place all night long. That’s not good for his skin.

The lift has helped with the lack of strength problem tremendously (Daddy’s and mine, too), and Daddy is accepting it without argument, thank goodness. He’s also letting us feed him, which surprised me. I thought he’d balk, but I think he’s beyond that. He still takes spells of hateful talk, but it doesn’t happen too often any more. Frances heard it for the first time yesterday. It really surprised her. We told her that meant she was part of the family now. 😉

We’ve reached that point in care giving where we pretty much control everything to do with Daddy now. We’ve bought sweat pants and put his regular zipper pants away. I’ve put up his watch, wallet, and keys, which he’d always put on first thing each morning. He’s no longer wearing athletic undershirts or his favorite flannel shirts. We’ve bought him some knit Henley long sleeve shirts instead, so we could get them on and off easier that the unstretching flannels. He’s in white diabetic ankle socks, instead of his dress socks, and I can’t remember the last time he had on both shoes. In fact now we’re not even bothering with the slipper socks, as he’s not standing or walking. The sores on his bottom and his heel look much better, because we have more control over his skin now that he’s not walking and in his own bed. It’s no wonder he keeps asking to go home! He certainly doesn’t recognize the life he’s living now. But he’s safe (well, except for his rail climbing times), and he’s as comfortable as we can get him.

The Zelepar seems to be sufficient for my physical Parkinson’s symptoms, but I’m not sure any medicine could improve the mental deterioration I see, considering all we’re doing right now. Thank goodness for backspace and spell check!!

At the rate I’m going it won’t be long before it’s just too difficult to try to correct all my typing mistakes. I’ll just join Joe, and let you see what it’s really like for me HA!!

So, I’ve cut out what I could in the way of other responsibilities. I haven’t put a new item on eBay in some time, and I’ve put up a notice that we are not able to ship promptly right now. I’ve sent an email to all the BLOG VILLAGE members, asking them to help me with the monthly check on all the voting links and dead blogs. I’ve even cut down on my own reading and commenting, not because I want to, but because I’m just overwhelmed right now.

As you can see, I’m not very cheery today. I’ll feel better once I get some sleep, though – whenever that will be.

Cymbalta + Zelepar = BIG NO NO!!

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I sent my DH to the drug store yesterday evening to pick up the prescriptions I had ordered earlier. When he brought the bag back, our local pharmacist had written a large note on it. It seems my Cymbalta and Zelepar can have a dangerous drug interaction. So, he didn’t fill the Cymbalta, but told me to call my doctor.

Before calling the Neurologist, I thought I’d look up a little about this combination for myself on the Internet. Well …. I don’t need to call the doctor!! Cymbalta is OUT!! Not only do the two cancel each other out, but the combination can cause something called Serotonin Syndrome/Poisoning, which can be fatal in its extreme manifestation. I have definitely had one of the milder symptoms, which I was blaming on the Zelepar, as it started after I started taking it. Out of nowhere, I would start sweating profusely and be so hot I just about couldn’t stand it. I’ve mentioned this before, as it feels just like menopause hot flashes at their worst.

The Cymbalta prescription came from my General Practitioner, who prescribed it almost a year ago. The Neurologist had a complete list of my medications, so at least he should have known I was on it when he put me on Zelepar, which is the dissolving form of Selegiline.

So, as is so often true, it’s the Pharmacist who is the expert when it comes to such interactions of medicines. This is the best argument I know of to use only one pharmacy for all prescriptions.

Zelepar is Working Much Better, Insomnia Is Still a Challenge

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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.

Strange Things Are Hapnin’

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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??

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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!

Tummy Improvement OR Walking Faster?

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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.

First Dose of Zelepar, My New Parkinson’s Medicine!

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This is the day I have been waiting for for about two weeks now. I spent that time tapering off of the Requip I had been on, went without any PD medicine yesterday, and this morning I took the first dose of Zelepar.

Zelepar is a quick dissolving tablet form of Selegiline, which dissolves under the tongue. It tasted a little like an orange mint might to me, but it does dissolve extremely fast. There was also a little tingle on the tongue, but nothing uncomfortable. I had read somewhere on the Internet that it tasted bitter, but, for me at least, that was not so. The directions emphasized not to drink any liquids or eat anything at least 5 minutes before or after taking it. I’ll be taking it twice a day while I’m on the samples, but I’m to go back to the Neurologist at the end of this two week trial.

I felt my walking begin to smooth out within about 30 minutes. It may be my imagination, but I think it’s made me a little hyper, too. (Of course, I’ve been so slow the last two weeks it may be I’m just normal now.) I’ll have to be careful when I take the evening dose, if that’s so, or I won’t get any sleep tonight. LOL

I’ve been reading the explanations of what a MAO-inhibitor is, which is the class of drugs that Selegiline falls in, and I think I’ve got it figured out. Basically, it’s some kind of high powered targeted anti-oxidant, that keeps the smaller amount of dopamine that my brain is making from being broken down prematurely. So I’m getting the full benefit of what my brain is naturally producing.

There is also some research that suggests that Selegiline may actually protect the part of the brain that makes dopamine, and possibly slow down the progression of this disease! If you’re not really familiar with Parkinson’s Disease, that may not sound so significant, but it would be quite a break through. All the other meds treat symptoms only. There is a possibility that Selegiline may effect the cause of Parkinson’s!! I’ll not go so far as to get my hopes up for that, but you bet I’ll be watching to see if that turns out to be true.

Tapering Off Requip

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When I went to my Neurologist last Tuesday, we decided I would stop taking the Requip, since it was probably the cause of all my stomach problems, other than the PD itself. Also, it was the likely culprit for my hair loss. So, Dr. S. told me to taper off the Requip before I changed over to the samples of Zelepar he gave me. That meant last week I only had two pills a day, instead of the usual three. Starting Tuesday of this week, I’ve only been taking one a day.

Dopamine is the brain chemical that controls muscle movement, and that’s the one that people with Parkinson’s no longer make enough of. Requip tricks the brain into accepting the chemical in it as a substitute for the dopamine, so it’s called a dopamine agonist. Now that I’m down to one pill a day, I can really tell it! My balance is terrible, and my walking is stilted and jerky.

As long as DH can take over the care giving tasks I’m not up to, I’ll continue to do as much as I can to help Daddy. We’ve only got to make it until next Wednesday, and then I can start taking the new medicine. Zelepar, a special form of the medicine called Selegiline, is a different type of Parkinson’s medicine entirely. It is an MAO-inhibitor. I’ve read what that means a dozen times now, but I still don’t understand it well enough to put it in my own words LOL.

The reason Dr. S. is trying this particular prescription is that it dissolves on the tongue and does not go through my digestive system. It goes straight into the blood stream. With the improvement in stomach comfort that I’m seeing from the Miralax and glycerin suppository combination, I’m hoping this new medicine will be the perfect one for me for the time being.

I do know that at some point I will have to go back to taking Sinemet, which was the first medicine I took. It nauseated me, too, but I’ll cross that bridge when I get to it, because there is a patch form of it in drug trials now.

So for the next few days I’ll be weaving and lurching around here like I’m drunk, but I can put up with it, knowing there’s something new to try just days away. I am ever thankful to God that there are so many researchers working to find new ways of fighting the symptoms of this disease, working on ways to slow its progress down, and ultimately to cure it.