For those who care for someone with Parkinson's disease
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I don't know what's happening to my hubby. It seems like he has wearing off reactions every time I give him his pills. He will be okay and within 15 minutes after I give him his Sinemet he starts with the reaction. I've been really careful about protein in the morning and afternoon. Nothing seems to make a difference. We switched to Almond Milk because it only has 1 g protein per 8oz. Could this be restricting the absorption of the Sinemet? Last night after his Aricept and Extended Release Sinemet at 8:30 pm he had a reaction that lasted for 2 plus hours. This is terrible to watch him having such a horrible time. I just don't know what I can do for him. I'm waiting for an appointment with the neurologist for the Apokyn injections. There has to be something that will help him, living with these reactions 3 or 4 times a day is horrible. |
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| Flowers, I'm not sure what you mean "wearing off reactions"? |
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| My hubby moans, his mouth is open, his left arm shakes a little. The neurologist has been telling me it's wearing off of the sinemet. We've tried all kinds of dosing changes, pills and timing and I've tried to be really careful about the protein. His reactions almost look like a seizure. I took a video of him and showed the neurologist and he said it wasn't dyskinesia. |
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I'm not certain what you mean by "reaction" either, but I can say that my mom sometimes thinks her meds give her this "reaction" also. But in her case it is the last dose wearing off, and the dose she just took hasn't kicked in yet. Sometimes if the wearing off is bad enough, the new dose doesn't do very much at all, and I've read that can be the case. (In which case it could easily be mistaken that the latest dose you took is making you that way, when in fact it just isn't working at that point because there has been too much off time.) ... Has your neurologist suggested any other treatment? Our neurologist has suggested that eventually Deep Brain Stimulation could be an option. I meant to ask him about it at our Monday appointment, but so much else was going on and she had improved enough by then that I forgot. ... Mom still has episodes in the evening that I assume are "off" periods. She looks pained, slows down, her face droops a little and is more red, some obsessive behaviors emerge, her blood pressure is sometimes a bit high, and often she has to urinate every few minutes. She was taking 4 of the 25/250 sinemet with entacapone (comptan) each day, but in December I upped her to 5 (the neurologist wrote the prescription for 5 in case we ever needed it). These assumed periods of "off" time in the evening are better, but still an hour or more. A couple of days this week, though, she didn't seem to have any of the off time in the evening. |
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My hubby isn't a candidate for DBS because he doesn't have bad tremors. I simply don't understand the timing of the pills. He takes 25/100 sinemet and Aricept at night with one Sinemet ER. We've changed from 2 pills every 4 hours to 1 1/2 every 2 1/2 hours and now to 2 every 3 hours and a few other adjustments over the last two years. Nothing seems to make a difference anymore. The "off times" are coming after each dose within 20 minutes. I hate giving him the pills when he's pretty alert and seems okay just to throw him into an off time. He's supposed to take 2 pills at 8, 11, 2, and 5 then his bedtime pills. He never gets his 8am pills because he won't wake up that early anymore and won't take them while he's still in bed. It's so impossible! |
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In my experience, the pills don't throw them into an "off" time. It's just that the last dose is wearing off, and the pills you just took haven't kicked in yet. For my mother, it takes an hour for them to kick in (sometimes a little less, sometimes a little more). So the dose she took just over 3 hours ago is wearing off, and the dose she took 10-20 minutes ago has not yet started to work. Usually an hour after she has taken the dose, she starts to get back to "on" time. ... If you give him the pills, and then 20 minutes later he seems to be in "off" time...how long after THAT does he seem back to "on" time? And is that consistent also? If so, I would think it is what I said above--that the newest dose hasn't kicked in yet, and the last dose is the one that's wearing off and causing "off" time. |
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Our Carba-L-Dopa takes roughly an hour to one and a half hours to get to the gut where it is absorbed. So wearing off continues until the new dose gets to absorption point. The Sinemet will work once it is absorbed and crosses the blood/brain barrier. But it takes time to get there. Here's a question from way out of left field for you Flowers. Was your Husband ever a hummer? You know hummed to pass time? Humming when doing something and waiting. As Parkinson's Disease progresses our whole body is effected speech, blood pressure, breathing, heart rate etc, etc...What if he's believing he is humming but it comes out moaning like as he's waiting for his next dose to kick in? In a way it is worth considering you say about 15 minutes after taking next dose the moaning starts maybe after the 15 minutes he decides to hum while he waits? What if the P.D. effects his vocal cords as it wears off and his humming comes out more moan like. Wouldn't that be something with Us all over thinking the cause. Just a thought. |
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So why aren't the doses timed for that wearing off time and the new dose that will take an hour or so to kick in? I guess that's what I don't understand. If we know how it works why can't we adjust the meds to overlap? I hope the Apokyn injections can help. Al, I love how you're so knowledgeable and think things thru and give great suggestions. My hubby wasn't a regular hummer but did on occasion. Sometimes his moaning changes octaves and sometimes it sounds like chants. I guess that could be. I don't know how he can keep it up for two hours though. |
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| As the disease progresses and the wearing off becomes more pronounced Doctors try shortening the time between doses like going from 4 hours to 3 hours or adjusting strength of dose (cutting it in half and giving every 2 hours) but when they do this it can become very tricky and they walk a thin line of too little dopamine and the patient being depressed and too much dopamine causing the patient to become manic. So we patients become the lab rats and you caregivers inherit even more side-effects and problems to contend with. |
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The point you make about becoming manic is exactly right. On Christmas Eve 2016 (a year ago), I tried moving mom to 5 a day instead of 4 because I had some time off to monitor her, and because she wanted Christmas to be a "good" day. By the time we got to the 3rd dose, she started running around the house dusting and cleaning and couldn't be convinced to stop. (I just followed her around for an hour to make sure she didn't hurt herself or fall down.) Needless to say I scrapped that plan, and only gave her 4 doses that day, with no off time. ... This year a few days before Christmas I did the same thing, with no immediate mania (I did transition with every 3 hours 15 minutes first for a couple days, then every 3 hours). During the first week, she did have one day of 20-30 minutes of mania where she cleaned the two upstairs bathrooms and couldn't be persuaded to stop (it's been YEARS since she was able to do something like that). But after that, no more episodes of mania. ... One thing I didn't realize early on in her disease is that the doctors are just guessing in terms of the dosing and timing of the doses. They expect you to figure it out yourself to a large degree, but they don't tell you that. I think I read this somewhere online 3 or 4 years into her disease. I wish I had read that earlier, because the first year or two, she had a lot of involuntary whistling, humming, mumbling, etc, and even then I figured if we called the doctors, they'd just reduce her meds a bit or spread them out. But she refused--the doctors told her to take them that way and that's what she was going to do, mostly because we were just afraid of the term "Parkinson's" and fearing something terrible would happen if we didn't take the meds exactly as they told us to. But nothing terrible would have happened. We just didn't know any better. |
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| Thank you Al and Greyeyed for your thoughtful responses. I'm just so beyond knowing what to do for my hubby. It's such a terrible thing to watch someone you love go thru so much. I don't know what I can do anymore. I know I can't give up. |
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The difference in the being able to transition to 3 hours instead of 4 hours is that our underlying disease must have killed off enough dopamine producing cells in that time between tries to allow the shortening up of time between doses. Many People who don't understand P.D. assume that we increase pills because our bodies get used to the dosage so we have to up it. That is not correct we increase because brain cells are still dying off so we have to take the L-Dopa to replace dopamine from those cells that ceased to function. |
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| Al, I have been curious about the need and dosage for the sinemet. During this recent knee re-replacement if I stuck to the prescribed Rx he was so agitated he pulled out his pic line, and once his catheter. So I cut back on the pills...even in the hospital. They were ALWAYS late with the dose so when they finally came it I told them I had given from the 'traveling source" bag provided by the Parkinson's Assn. They never knew I was cutting pills in half. Stopped all the antics. Now that he is back working in his shop in the wheelchair, I went back to the original dosage. Is it anything like Type 2 Diabetes RX, where sufferers have to balance exercise and intake of sugar to regulate their insulin? Am I making sense with the comparison. =More active full dose, less active (bed bound) smaller dose. |
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Was he on any other medications in the hospital during the knee replacement? They put my mom on morphine before flying her to Harborview last week for her back, and she became very agitated and combative (it didn't happen right away, but a few hours after). She's had bad reactions to pretty much all pain meds except Oxycodone. ... I've noticed that in hospitals, the doctors/nurses tend to go for what works with "most people" without considering the PD at all. (They gave her Haldol at one point to calm her down, and it did seem to work, although it isn't recommended for PD patients.) |
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Very interesting day. My hubby actually got up at 9:30 this morning. Got his pills at 9:45. Had cereal and fruit at 11. He has had no off time today other than about 10 minutes and hardly noticeable. I think it must be because he got his pills earlier? I can't see anything else that is different. I wish this could be a new norm for him. I try to give him his pills in the morning at 8 or 9 but he absolutely fights me on it and will knock my hand away and spit out the pills. Well, a good day made for a bad night unfortunately. It must have been too much protein for dinner is my guess. Small pork chop, fried potatoes, green beans, almond milk and small brownie. He took his 4th dose of Sinemet at 7 and his extended release at 9 pm. His left arm shook and he moaned off and on all night until about 3 am. |
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moonswife, I don't know about type 2 Diabetes. However in a way your comparison more active full dose, less active (bed bound) smaller dose.is kind of right but not the way you question it I think. When we get our full dose We are more active, when we are given a smaller dose we become less active because we have less medicine in our brain being converted to dopamine. Dopamine has one main job in our brain and that job is to fill the gaps between synapses so the message to move, breath, heart to pump, eyes and vision to work. If we can think of our brains as a bundle or ball of little pieces of wire not connected. When thought or intention is started a very small electrical charge runs through one of those little wires to the end of it (the synapse) in a healthy brain there is dopamine there so the intention (small electrical charge) runs through the dopamine to the synapse of the next little wire and so on and we reach our arm out to the coffee cup and our hand picks it up, the arm brings it to our mouth and we sip the coffee. As our disease progresses and we lose more Dopamine producing cells. So we need more Carba-Levadopa to replace our lost and low level of dopamine or reaching for that cup of coffee we may hit it or push it over or drop it. So the need for the Sinemet is to convert into dopamine which then gets shuffled by the brain into the gaps in those little wires so thought and intent can smoothly complete the movement resulting in what we intended to do.The dosage is a guesstimate made by observing us patients and our quality of living trying to get the best results with the least side - effects. It's like a reverse game of operation where we want the buzzer to sound and the nose to light up. His agitation probably stemmed from the medication always being late so there were gaps and his movements were impaired, along with balance and he was probably very self conscious of his clumsiness and fumbling. Hospitals will dispense med's per instructions written down. for example if he took 2 pills 4 times per day they read it as two pills every 6 hours while the doctor told the patient during the day take two pills every 4 hours and none at bed time.So we have to be on top of stuff like that |
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| I am a type 2 diabetic, and, yes, my blood sugar is greatly effected by the foods I eat and the type and amount of exercise I do. My husband is my PWP and it seems he, too, has changes similar to mine. However, since I am not on insulin, my reactions are much simpler to control. Carl maintain’s the same regimen and only alters the dosage of his meds when or if he’s s doctor recommends he do so. Otherwise, he balances his reactions by making changes to his food or exercise regimen. He never “messes” with his meds. To be honest, neither do I... |
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From the other side of the fence, both the original neuro and our MDS prescribe a suggested regimen, but have always encouraged us to tweak timing and dosages as necessary. We see our MDS every three months, so there's a fairly frequent check in on whether what she suggested worked, or if we had to add in/adjust something. Both of their opinions (independent of each other) are that the PWP knows best how they feel and after some time with the disease, have the best feel for how the drugs are working with their symptoms at the time. Greyeyed hit on this in his last paragraph above. Obviously, this doesn't work with every drug because others have narrower toxicity thresholds, and some require a specific blood level before they begin to work at peak efficiency (which is where I believe the initial mention of diabetes came in). I wouldn't dare to tweak levels of, say, blood thinners, but it's my understanding that Type 1 diabetics use their insulin in similar ways to react to the differing levels of blood sugar they experience throughout the day. A better analogy for drugs that have to come up to certain levels might be antidepressants, where theres a long half life and it takes a few days to come up to efficacy. The dopas, however, have a shorter half life, which is why they have to be taken more often. Moonswife, to your original question, if your PWPs biggest problem with PD is movement, then your speculation about adjusting dosing, at least per our PD doctors, is correct. Less activity, less need for more meds. But as it was explained to us, if the person has symptoms beyond just movement issues, then adjusting based on activity level isn't recommended. |
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| Thank you all for your thoughtful and thought provoking answers. He has always refused any pain medicine at any time before this knee surgery. They used morphine twice in the hospital when he told them his pain was a "9". One time it was ok, once a disaster. The nurse was going on break so she gave him morphine, and then another pain med within 5 minutes. Wowzer...did that make him psychotic. She came back from break, put him on the bed pan and left him there without checking on him. He managed to get it out from under his rear....and threw it at her. All in a day's work, I guess. Kaiser has started using contracted "traveling nurses" and some are superb, others not really up to Kaiser standards. Addressing the changing of his doses of Sinemet, the CR spells it out on the bottle very clearly....six doses a day four hours apart. The Sinemet 25 say "may take up to six pills a day, as needed" That was just too hard for the nurses and the pharmacy to handle. They wanted to give them all, of course. And they offered only sips of water. I read the importance of a full 8 ounces with each dose...and have always believed that myself...but I learned by trial and error. Even today things changed...and who knows why. He had a "night terror" dream last night when he thrashed, screamed someone was trying to kill us all and moved so much his catheter tube came disconnected. Wet Bed. But the change in linens broke the dream pattern. Something new since the surgery is the incessant snacking. Before we got to our now separated I comfort beds (so he can exit on either side) I give him a banana, some raisons, some goldfish crackers, two oatmeal cookies, three bottles of water and a gatorade. Now he wants "chocolate milk" too. I told him that was only when it was not pill time because of the protein...but he looks so sad, I give him 6 ounces (in a Tommy Tippee Cup) too. It is all gone in the morning. All night long he asks for foot massages, or back massages. Or he is cold. Or his tee shirt is too hot. Restless nights for both of us. But I do not know when he consumes the snacks...just that he does. All your insight was invaluable. Thanks for reading my long post. |