For those who care for someone with Parkinson's disease
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| Hello. Two doctors have said my husband, who is 84, has Parkinson's and he has been on Sinemet for about a year. He has had a tremor and some of the symptoms, but this weekend things really changed. He fell and managed to haul himself up by holding on to furniture. Now he is having periods of not just a tremor, but shaking and jerking movements that frighten both of us. He couldn't get up from the toilet himself, and his balance is very much impaired. He was adamant he did not want to go to the ER. He is asleep now, but if he is still this way tomorrow (Saturday) I will insist on taking him to the ER. Is this type of scenario unusual for PD? |
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In my experience, this disease is very complicated, and everyone is different. That being said, here are some guesses from caregiving for the last 8 years (and reading quite a lot about this disease). ... One of the most important pieces of information that I discovered myself was that injury, surgery, med changes (not just Parkinson's med changes), infection, and stress/anxiety/grief (etc) can cause the disease to be temporarily worse (in all aspects, not just movement--constipation, depression, anxiety, etc). That doesn't mean they always WILL. But if things seem worse after the fall, it is possible he hurt himself and that is what is causing the shaking and jerking movements. ... That's not to say that is what it is. The cause of the fall AND the jerking movements could be something else--ie, they could have the same cause. It could be "off" time between sinemet doses (do they happen all the time, or at specific times that correspond to between doses or between when doses "kick in"?). ... If it isn't PD related, the ER may be able to figure it out. If it *is* PD related, I'm not sure they would be much help other than to say to see your neurologist. Hopefully you have one who specializes in movement disorders, if not PD specifically? The previous neurologist for my mom was next to clueless about PD. |
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| I don't remember which PD book listed the top 10 reasons NOT to take a PD patient to the ER, but if possible it is to be avoided. They can't help (except for head trauma or broken limb) and can make things much worse. Others may want to add their thoughts here. |
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| Sharonj, Hi and welcome to the forum. What you are describing with the jerking movements sounds like dyskinesia. Involuntary movements which can be a side-effect of his medicine. Some patients develop this at end dose or when the L-Dopa is wearing off, some when it is at it's peak. So if you can notice a pattern write it down to tell his Neurologist. Many times ER's staff and Doctors don't know that much about P.D. so you'll have to watch and probably answer the questions. Try calling his Neurologist maybe they can help over the phone when you explain what is going on. Unfortunately this type of scenario is not unusual with P.D. And it can occur in some early in the disease and others in the latter stages. If you go to the ER watch and question any medication they suggest making sure they won't interact with what he takes. We for the most part here are caregivers and patients on the forum so run our suggestions by his Neurologist first. Dyskinesia can be scary especially if we hurt ourselves. Several months ago mine started. I have a friend who has had P.D. a year longer than me. His began years ago and prompted breaking out in a crazy Russian folk dance. Mine resembles a crazy hokie pokie like dance. A couple months ago this resulted in me falling and dislocating my shoulder. Again welcome to the forum you've found a great place filled with caring people who will help in any way they can. I'm sure others will contribute to help along with the great info and advice already given. |
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| With regard to the ER making things worse: In August of '15, mom was having some difficulties in the wake of her lyrica withdrawal. She decided she wasn't taking her clonazepam at bed time for her REM behavioral disorder anymore because it made her dizzy. (This was before I became in charge of all her meds and knew everything about them.) Little did I know you can't just stop taking clonazepam, and if memory serves, she didn't tell me she stopped taking it until afterward anyway. Suffice it to say, she had withdrawals and rebound anxiety that lasted off and on for 3 days and showed no signs of letting up--she went to the ER 3 times, and finally they put her on lorazepam and sent her home. (It was neither the ER nor the EMT's that figured out it was clonazepam withdrawal, but me later when she had the same exact symptoms weaning off lorazepam.) That was 2 and half years ago and I'm still weaning her off the lorazepam. If I go too fast, she has episodes of rage. If I go too slow, the side effects of confusion, memory problems, etc, continue or get worse. I've honestly been terrified to go back to the sleep doctor for fear he'll just say switch back to the clonazepam and drop the lorazepam. Sounds simple, right? My fear is we'll just start all over--she'll have some kind of side effect or confusion from the clonazepam and refuse to take it, or withdrawals from the lorazepam and the switch, etc, and everything will be worse again. |
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| Thank you, one and all! I appreciate the insights you have provided, especially the information about the ER. Ron seems much better this morning! No jerking, walking well, ate breakfast, and now he's watching his car restoration TV shows. We will definitely call his neurologist Monday morning though. |
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Another possibility is protein. Protein will interfere with the sinemet, so if he eats a lot of protein at the wrong time, the sinemet won't work. (The way it was explained to me is the body will absorb protein before it absorbs the sinemet.) Just something to consider. ... Also, this disease in my experience has ups and downs, from hour to hour, day to day, week to week, month to month. Sometimes you can piece together why something went badly after the fact. During a bad time, however, it is sometimes very difficult to figure out. |
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| Does anyone know about Almond milk? It only has 1 g protein per 8 oz but do you think it interferes with the absorption of Sinemet? |
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| I very much doubt 1g would matter much. But you could experiment with it to see. Maybe do 3 days with it at the same time, and 3 days without it, and see if you see any pattern. But it seems to me if you pretty much eat anything, it's going to have 1g of protein in it somewhere. |