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Topic Late Stage PD - Chronic Pain Common? Go to previous topic Go to next topic Go to higher level

By glopps On 2010.04.25 22:33
I am brand new to this site, although I have a mother who has had PD for over 20 years (now in her early 70's). She is having extreme pain in shoulder due to arthritis (among other problems) and is now in hospice and they have her on all kinds of pain meds which are keeping her from walking, going to the bathroom etc on her own/or with assisted help. My question is this: Is chronic pain common in late stage PD in general? My understanding is that you want to help keep the patient moving to the best of their ability. Would anyone recommend a private nursing home with a PD specialist or do these hospice people know what they are doing? Any feedback would be greatly appreciated. We're just not sure where to turn at this point.

By LOHENGR1N On 2010.04.25 23:44
Hi and welcome to the forum glopps. In general pain med's are a no, no with Parkinson's. Meaning the more powerful the med the worse it makes the Parkinson's symptoms. My Neurologist has said many times We're limited as to what We can have to help deal with our pain without causing problems with our Parkinson's. Chronic pain is more common than previously thought with Parkinson's (any stage I believe). With Parkinson's Disease many experience Dystonia a cramping or twisting of our muscle groups, it twists Us out of shape. This being so it makes sense that if a joint is weakened either through injury, wear or arthritis Dystonia will cause pain. I would discuss the pain med's and their usage regarding the effects upon Her Parkinson's Disease with Hospice. From many postings here hospice is well thought of and generally a great benefit patient and family. This site is full of many wonderful, caring people who will do their best to help through the journey with Parkinson's. Keeping posting and asking questions We're all here to help. Take care, best of luck and hang in there.

By Emma On 2010.04.26 04:43
glopps, welcome to the forum. As lohengrin said, there are a lot of good people here, caregivers and patients, who can offer support and advice.

We haven't dealt with Hospice (yet) but the people on the board who have seem to think highly of them. I believe that their primary focus is on comfort care, ie; pain reduction. But like I said, we haven't worked with them so I'm not sure.

Chronic pain seems to be common in PD and there is ongoing research in this area. My husband has a lot of back and leg pain. His back pain is particularly bad, almost unbearable, as he has severe spinal stenosis (worsened by the dystonia). Pain is a tricky thing to deal with. My husband takes a lot of pain medication which makes him even more tired than he usually is and worsens some of his PD symptoms slightly, but he prefers that to the constant pain. Some people with PD have more of an issue with pain meds than he has, every situation is unique. I would support lohengrin's advice to talk to the Hospice people about the use of pain medication for her.

Good luck, and again, welcome.

By karolinakitty On 2010.04.26 07:22
Hi glopps.... welcome aboard .....

Chronic pain ... mine has only been diagnosed about a year and a half and has chronic pain. In fact he's had the dystonia a lot longer than the diagnosis. As our saying goes, everyone is different. Mine is only 53 years old. The APDA has a booklet you can get for free on meds to aviod.. there are many pain meds and physch drugs to avoid. The movement disorder doc only recommends Ibuprofen and nothing stronger due to the crazy side effects. I'm sure there is something Hospice knows more about then the common man so give them a try. I have experience with them but not PD related. They were right there for everything, they really care and try to make things as pain free as possible, in all aspects. THey help you with the paperwork, meds and everything in between. If you put hospice in the search here i'm sure you can find lots of good posts about them.

By Pearly4 On 2010.04.26 10:16
I think chronic pain is a common problem at any stage for multiple reasons including simply dysfunctional nerve conduction. And my personal belief is that its the patient's choice -- does she want pain relief or does she want independence? I for one would choose pain relief I think. Meds can cause confusion for multiple reasons including simply age -- a old liver doesn't clear the toxins as well or as easily. My mother chose independence and learned to live with the pain - may not have been as bad as others, or maybe her "determination" was stronger, I don't know. Hospice is all about comfort - is your mother clear minded enough to discuss it with her? If so, definitely she needs to voice her opinions.

I'm confused - are you asking for a referral to a nursing home or are you saying you've found one with a Parkinson's specialist on staff? If its a good one, that could mean a great deal of difference to a resident!

By glopps On 2010.04.27 23:37
Thank you everyone for your replies. It really helped a lot. Due to the pain medication she is not herself and I believe does not really understand what is going on fully. We all agree she has to be weened off the pain medication to have a conversation about what she wants. Unfortunately she has some of the dementia that goes along with PD and so at this point we probably need to find a really good nursing home to help ease the burden for both my father (who is 75) and to help her better. When you have helped your mom get to the bathroom for the last 5 years all of the time you kind of get used to the situation, but now that she is bedridden it is a lot to ask a 75 year old to help do that - most physically is the problem. Thank you all for your kind words. Love this site. Wish I had found it sooner.

By susger8 On 2010.04.28 08:03
Glopps, also keep in mind that there are hospice facilities, which might be good for your mother depending on her situation.

By lurkingforacure On 2010.04.28 08:06
We too have really bad pain, mostly back, and had it before dx, who knew. Our neuro told us chronic lower back pain was actually one of the things they look for.

Since dx, we now have toe and foot cramps thrown in there as well. But the back pain is by far the worst. It's constant, relentless, and severe. My husband takes a lot of aspirin and/or ibuprofin. It often wakes him up at night, too.

By parkinit On 2010.04.28 09:59
Interesting that back pain was mentioned by your neuro as "something they look for." My spouse has had chronic back pain, but I can't recall any doctor flagging it as a PD indicator. Good info. Thanks.

Now on to the chronic pain. We were in the emergency room for a dislocated shoulder recently and there is apparently only one painkiller that wouldn't interract with my hubby's meds. Our doctor gave us the name for future reference so we wouldn't be delayed by someone having to look it up again (some doctors are so very thoughtful!). I won't provide the name, though, because all PDers have different med mixtures. As many indicate here, you need to have a doctor (maybe better yet, pharmacist) look at everything your spouse is taking and let you know if any and all interractions.

By anniem On 2010.05.01 14:47
Being new here, this is very interesting to me. My husband has been complaining about lower back issues, went to his neuro who did an MRI and it turns out he's got stenosis. The neuro referred him to a neurosurgeon who then ordered NVC and EMG tests. No one, but no one, even suggested to him that this might be part of his Parkinson's! He's had terrible leg cramps, knee pain, etc. He was only diagnosed 2 years ago but had not been feeling well for maybe 2 years before that. Clearly, I have a lot more reading to do about what is involved.

By lurkingforacure On 2010.05.01 21:47
Could the stenosis be caused by the Parkinson's? I would suspect this could be the case, PD leads to all kinds of problems because it causes the muscles to twist and contort in abnormal ways, and stay like that for much longer than normal. The whole body is taxed and exhausted because it is being forced to function with less of everything, so I believe almost everything my husband has to deal with is part and parcel of the PD, especially considering the fact that pre-dx he was NEVER sick, not even a cold.

PD: the all-inclusive mystery disease.

By glopps On 2010.05.13 13:14
Thank you everyone for your replies. My mother passed away Monday May 3rd. I know she is now no longer in pain but it still doesn't help the sadness in seeing her go. Wish everyone well here and for a God Send that will cure this horrible disease quickly for everyone afflicted.

By caregivermary On 2010.05.13 15:43

So sorry to hear the news regarding your mother. you are right-she is no longer in pain. Thank you for taking the time to wish us well.

Take care

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