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By care4loved1 On 2010.12.25 10:22
My husband was diagnosed with PD 3 yrs ago. He is steadily getting worse. He is in so much pain, mostly at night. It bothers me to see him like this. The neurologist put him on Amentadine recently and said this may help him with the pain. It has been two months and still no change. If anything it is getting worse. It is now starting to bother him on both the right and left side of his body. I am concerned about him. Anyone with any help or advice can you please post what you know. Thanks

By karolinakitty On 2010.12.25 19:53
Cared4 ... wish i could help better than this but my guy too has a lot of pain with his PD. His regular neuro however says there is no pain with PD. He has offered Neurontin which we did try, worked for several weeks but then made him feel zombie like and he was falling asleep even more than "usual".
After our visit the other day he gave us samples of Cymbalta, which is more recognized for depression, however, after reading up on it, it is used for nerve pain also. Ibuprofen, is the "best" bet as Alleve(naproxen), aspirin and tylenol are all not recommended by his Movement Specialist, he said they interfere with the PD meds. He did offer Amantadine earlier this year for his freezing, but there were soooo many bad side effects we didn't even try it. Plus the Movement Specialist said he didn't favor it....

I know how much it bothers me to see my guy in pain like that. You just want to take it all away. Plus when they are tossing and turning so are you.... so we both lose.....

By care4loved1 On 2010.12.26 00:44
Our Neuro from the movement disorder clinic said the same thing that there is no pain associated with PD. He does take Ibuprofen. He is constantly very tired. I can't say I would not be any different if I was up most of the night in pain. In general he has absolutely no energy to carry him through his whole day.

The Neuro said that within the next 3 yrs it will be on both sides of his body. Does that mean the disease is getting a lot worse??? If so does this seem like it is progressing fast??? His memory is also been getting worse. THe neuro chalks it up to not listening to me. I know he has a hard time concentrating as I will be half way through a sentence after he asks me a question, and he will be off doing something else before I am done.

thanks for all your input who ever responds to my msgs. it is such a great support.

By karolinakitty On 2010.12.26 08:47
Don't panic about the progression. Everyone is different and everyone progresses differently. My guy took a downward turn the beginning of this year and like your guy is only dx about 3 years. Here is a link to a a John Hopkins article that explains PD in a better way than most. I used to read a lot on Mayo Clinics site, but i found this last week and like it better.

Sometimes it is an adjustment in meds. we are on just RequipXL and Aricept, no lev/cardidopa's . Just added Cymbalta and are gonna try that starting today. Each day may be a new thing but you have to learn to take them in stride and not over panic about each thing. The link i sent you has a chart for each area PD hits and what the issues are. Yes, it lists pain, cognitive issues and all the rest.
Sleep issues are a big problem with PD. I know the pain will still be there, but one thing we tried was Melatonin at the Movement docs suggestion. You can get it at Walmart or any place that carries vitamins and supplements. start at the 3mg and go to 6mg if needed. Melatonin is a chemical in the brain that aides in sleep. Always ask the doc first. Call and talk to the nurse but adding it should not be a problem.
You might want to check about Aricept depending on how far the dementia has gone. They do a short test in the office and while Aricept does not stop the dementia, it does help slow it down. My guy actually did much better on the test this time than he ever has. He still has issues, but the test is general memory, but really doesn't check on concentration and other dementia issues very much. The test they did at the movement clinic was much more involved.
Concentration is a big issue for us...he almost never knows what day it is, doesn't remember if or when to eat or drink, loses words, can't do certain motor activities.. there's more but I do know how hard it is....

By LOHENGR1N On 2010.12.26 12:18

care4loved1, Hi and welcome to the forum. I am a Parkinson's patient. There is pain with Parkinson's Disease anyone who say's there isn't needs to study and learn more about this disease. You don't mention if your husband is on any other medication. There doesn't seem to be too much "out there" we can take for pain. The stronger the pain medication the more it effects our Parkinson's. Parkinson's tries to contort our bodies (slumped posture, rounded shoulders, pulled up limbs etc..). Imagine having a injury to lets say the rotator cuff, now on top of that Parkinson's is causing your shoulders to lift and curl forward. That's like saying your wrist or elbow hurts and having someone twist it on you. Plain and simple, pain! It does make sense for the pain to seemingly transfer to involving both sides now. If you think about it when one side hurts we favor that side and rely more on the other side. After a month or two the "good" side is overworked (even while resting we tend to put more pressure on the non hurting side) eventually the overcompensation catches up and we have pain on that side too. It's only natural, alarming but natural.

As for progression from what you say this seems to be something his Doctor was taught or learned. As KK said we're all different and each on our own timetable. As your doctor will learn but sadly it isn't much help to you now. When I started with tremor is was on both sides much for the old it begins on one side then a few years later involves both sides. Many people have tremor still only on one side years after diagnosis.

Again welcome to the forum, keep posting. This is a hard disease to figure out and while we don't have all the answers, we do have years of experience living with Parkinson's both Caregivers/partners and patients here to draw on for many tips and answers. Take care, best of luck and hang in there.

By care4loved1 On 2010.12.26 17:39
My husband is on Lovodopa/carbidopa (sinemet) 100/25mg (he takes 2 1/2 tabs every 4 hours) and he is on amentadine. He recently has gone off of parsitan. The dr now wants to add requip to his cocktail of drugs. (I am from canada so some of these drugs may have different names). He does not always remember and misses anywhere from 1/2hr to 1hr. He says he takes it on time but when i read his daily journal that is not always the case. He absolutely hates if I say anything to him about taking his meds etc. I do not want him to feel that i am taking away his independance so i try and tip toe around it.

To me the disease just seems to be progressing faster and faster for him. He is just seeming to be in more and more pain, memory getting worse, and more and more tired all the time. He no longer has much empathy anymore. I guess I could say he is no longer the man I married. Which i am sure everyone on this site can relate. He also has a lot of distonia in his feet.

By lurkingforacure On 2010.12.27 08:50
I can't believe docs, especially from a MDS clinic, still say there is no PD pain. They are ignorant, plain and simple. It must make a PWP so frustrated to hear their doc tell them there is no pain with PD, that is must be something else!

We also have horrible pain, and fatigue. I know I'll get a lot of nasty replies to this, but it seems to me that those with PD who do best, if there is such a thing, are those who do not mix a lot of different meds. We take sinemet, azilect, and mirapex (although we;ve tried to get off of that latter one twice to no avail, it is beyond addictive). Our doc is really pushing us to add Comtan, we refuse. At some point, we may cave, but it seems that the many, many side effects of these PD drugs get all mixed up and you simply cannot tell what it what and then end up taking more meds to address side effects of other meds. Plus, many drugs precribed for PWP actually have side effects that mimick PD's cardinal you think you are progressing but really it's the damn drugs making things worse.

At some point we will be facing the decision(s) of adding more drugs but for now, we are trying to keep things as simple as possible by keeping the number and type of drugs to a minimum. That helps us tell what is what, at least for now.

Oh, and my guy takes a ton of aspirin, and it helps. We have never been told it interferes with his PD meds. I guess this is yet another thing that the PD "experts" have not gotten together on!

By karolinakitty On 2010.12.27 11:05
Lurking .. i agree with you.... the mixing of meds can cause such a mess to distinguish what is what and is it a side effect or is it PD. We are only on the RequipXL and Aricept, just yesterday adding the Cymbalta. we were offered Amantadine in the past but refused for it's side effects. We tried the neurontin, it only made him zombie like so that was off.
Don't know if you saw my post about the doctor's-sigh, but it is so frustrating having a doc that knows squat about a disease. I am in the process of putting together a lecture of sorts, to present to some in the medical field about PD from the caregiver and patients view. I am including these off the wall comments and some others from other PD patients as i get into this.
Exercise... that's a hard one especially if you think it in the terms of push ups and sit ups. BUT for a PWP exercise can simply be walks, but religious walks. Daily routines can turn into exercise. If your PWP likes to putter with wood, cars, toys or whatever, they should continue to do so even though some may think it obsessive.
I can prove my point by the latest exam we had. the MMSE test he took this time was the best he ever did. His gait, while still not "normal" was better than i have seen in a long time. Did he purposely do this? NO, no practicing answers to the test. No trying to "fool" the doc. He actually did better. Was it the fact he was struck by lightning a while back? we will never know, but to us it is a possibility. The doc shrugged us off on that like we were psycho's but who cares.
My guy "works" in his shop almost the entire day. he putters around transforming his wagons and from this we have concluded, that is the reason his mental capacities are getting better. It has been proven in the elder community that folks who "play" memory games on the computer, read more, use their minds for complex tasks, have improved mental function. My guy is not a gearhead, or a metal worker or even that good at building a box let alone tricking out little red wagons. BUT, he is doing it. It takes him weeks to do one however those that are receiving them don't know it until they get it, so it doesn't matter. He doesn't sell them, he gives them away, so there is no pressure, no time limit. He has to use a complex part of his brain. Again, it takes him longer to deduce things, it may take him 10 or 1000 times to get something right, but he does it. Proactive. That is our word in this disease. I might get some flack from some older folks on this, but anybody under the age of say 65, in this disease, needs to fight harder to fulfill their lives. They can't be looked at it as dying tomorrow. They can't be looked at as having no possible life past this disease.
It may hurt like hell to do things, you may want to fall asleep midstream of a project, but do it anyway. Don't lay down and die because everyone else thinks you should. It's not that i don't sympathize with those farther in age than my guy, I do, I just think that sometimes being classed as having PD puts you in a category of....OK, there's nothing we can do so you're going to die, the end..... It is so unfair both to patient and caregiver.......
Oh boy... I rambled on.....but I,we, have the proactive approach and we refuse to give up and refuse to just take a drug because the doc says so. We may "try" it, but we don't take it for a long time if it doesn't work. I think that is something so many of us need to learn. Just because the doc says so, doesn't make it so......Maybe, no probably, as this disease progresses and things get worse i will have a different view. As for now and today...Proactive is the word and that's what we'll do....

By LOHENGR1N On 2010.12.27 23:53
Lurking and KK, I believe you're hitting on some good points, I think the less med's and more exercise helps. Like KK said it doesn't have to be sit ups, push ups or even riding a bike. As long as it is of some benefit to our body and well being. Walking is a good one, I include a hill in my walking uphill it stretches calves and hamstring, downhill works the quads. (Morning I walk a loop that includes uphill, afternoon reverse the loop and go down hill.) Don't forget to stop and look for that bird that's chirping or singing, it helps the eyes and mind also. It's a walk not a forced march.

Living alone I have the benefit of having to do most things myself. Yes it could be viewed as a BIG drawback and I realize many can't do it, but many can do things that they now aren't because they don't have to do it. Some care givers would rather do these things because they don't want their loved ones to get hurt, some because it's easier or quicker for them to just do it. I'm not saying you should let us run with scissors but we can butter the toast. Because I live alone many times I have to buck up and just go on if I have a runny nose, sniffles or a cough I have to get up and go on. I don't have the luxury of being spoon fed medicines, my temp taken or pillow fluffed and delivered meals in bed. Which sound really nice but I've been wondering as of late if I would be functioning at the levels I now do or if I would slip into the patient role and just wait to be fussed over and about? I don't know, but I do know we are facing different issues being young onset and I think remaining as active as possible both physically and mentally (while maintaining safety) is important in fighting this disease, and stalling the eventual need for more medication. (And you two were afraid you'd get some flack over your posts lol.)

By parkinit On 2011.01.02 14:03
On the medication timing issue... Most of the time, I hand the pills to spouse to ensure he takes them as many times he doesn't remember if he has or not or I tell him to take them and he forgets to do so after I walk out of the room.

I wear a watch that vibrates as a backup (so could your spouse and you). When it vibrates, I ensure he takes his pills. For you, you could wait a few minutes then double check with spouse to see if he has taken the pills. If he understands how critical it is to be timely with pills, he will appreciate your backup system.

Even if he says yes, I double check the pill box and sometimes they are still there, so it works for me to be a "backup."

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