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Topic New to this. Who is the stranger in my bed? Go to previous topic Go to next topic Go to higher level

By Mollyskid On 2012.01.02 01:17
OMG, I don't believe whats happening to us. My partner has i believe had PD for almost 5 yrs but only told this 2 months ago. he lost 26 kilo when he was choking every time he tried to eat or drink. finally they found the first the back of his throat. Sinemet has been great. But he stopped eating and was put on a steriod. It sent him crazy. it was reduced then told to stop taking it today. (dexamethasone) he has been up all night for three nights and really manic. The gentle quite man has become like a stranger and nasty. I try and not take it personally, but when i feel this tired, thats not an easy call. He has servere pains in his stomach (?dystonia) and is on morphine LA. and also liquid morphine. For three nights he has been bowel incontinent. (I hope that was the steriod, and may improve) but maybe PD. He was put on steriod to elevate his extremely low Blood Pressure. His legs are very swollen, blisterd and weeping, yet Drs think he can still stay at home.he is 81 I am 61 going on 100!!
He fell last night and could not get up. I think he needs to go into care, but then he has days that are ok. Please tell me i will get used to this. I work full time, and frankly, I cant wait to get back to work for a break!!! Then i dont know how he will manage. we have needs assessment in two days. Thanks for lettling me vent

By LOHENGR1N On 2012.01.02 08:37
Mollyskid, Welcome to the forum. You've found a great place with many, many great people who will do their best to help anyway they can. Right off the bat I'd question the morphine? As a rule of thumb my Neurologist said the stronger the narcotic (painkiller) the more it makes our Parkinson's symptoms worse. You might want to bring this question up at the assessment. Again welcome.

By susger8 On 2012.01.02 08:41
Hi, it sounds as if you have a lot going on -- very hard to cope with one problem on top of another.

First, does your partner see a neurologist who is a Movement Disorder Specialist? If not, I would suggest trying to find one. Ordinary neurologists often don't know enough about the later stages of PD to adjust the meds properly or how to integrate treatment for other medical problems so as not to interefere with the treatment of PD.

Personality changes often happen with PD -- sometimes part of the disease, but also due to the meds. What PD meds is he taking? Older patients are often over-medicated and do better with lower doses or fewer PD meds.

People with PD tend to be chronically constipated and adding morphine (which slows down bowel activity) will make this much worse. Any kind of opiate-related pain relievers have bad effects on PD and generally need to be avoided. They can contribute to hallucinations and problems with thinking and memory.

PD meds can lower blood pressure so I would think his neurologist and cardiologist need to confer. The swollen and blistered legs suggest congestive heart failure, which is a serious condition.

It sounds as if he has reached a stage where he needs someone with him while you are working. Is it possible to get a home health aide? Sometimes having an aide can enable the PWP to delay entering a nursing facility.

There is lots of good information here, and you will find members who have experienced pretty much any problem a PWP can have. Glad that you found us!


By Reflection On 2012.01.02 15:32
You have your hands full.
I think it can, and should, get better.
I second the wise words of the other responses you've received.
When I hear the word "manic" I think over medicated. For a very long time I couldn't tell the difference between PD and the medications used to treat PD, and I believed, incorrectly, that over medication was perhaps the choice of the person with PD, if they thought it made them feel better.
I now believe that overmedication is poison. Persons with PD lack dopamine (and some other neurochemicals) - they need medication that regulates their dopamine. But too much is just as bad as, say, too much insulin would be for a diabetic - more is NOT better. It makes them more likely to fall - a recent post discussed this. It can make them paranoid. You mentioned that he only "told" a couple of months ago - did you mean that he knew he had PD, but didn't tell you, or that the doctors hadn't diagnosed it?
Personality changes come with PD, but those changes tend to be apathy, depression, withdrawal. Staying up all night, impulse control issues, mania, anger/combativeness are all over medication.Over medication leads, over time, to bad motor issues - very uncomfortable dyskenesias (involuntary movements.) So it's no good for motor symptoms, and very, very bad for mood/behavioral symptoms. I'm passionate about this because my family suffered irreparable harm from years-long over medication. Be very assertive with your husband, and with his doctor. If he isn't letting you communicate directly, and privately with his movement disorder specialist, insist - and if he doesn't, that's a boundary you might consider enforcing with the alternative - that you can't live with him until you can communicate directly with his doctor.
Good luck - it'll get better, if you believe in your heart (as I do) that this will not only be for your benefit and sanity, but his. I wish you both the best.

By Mollyskid On 2012.01.04 00:50
Hi people, thankyou for your replys, My partner is now in hospital, he collapsed due to severe postral drop. I am in the middle of fighting the medics...they don like like people who speak up. to bad! I love my man and will fight for him. Firstly...he was not diagnosed until a couple of months ago. I believe he has heart faliure. but the Dr said his postral drop was due to his blood pressure??? Well i know he has heart murmer, and gp said heart faliure. Thats good enough for me.
I appreciate the comments re the morphine....I am having my say re this, and the pain team are going to reduce this and see what happens. He does have severe pain in his Dr said this was from the Parkinsons.
I am saying we need to see a neurolgist.The hospital had said the wait would be too long and would not be worth it! where are you people. I am in Timaru New Zealand. Not a lot of help here. So i am glad i found this site. Thank you for your posts. I am sure he has been over medicated.

By susger8 On 2012.01.04 07:51
I think you may be talking about postural hypotension -- there is a severe drop in blood pressure when the person goes from a seated to standing position, which can cause fainting. This is quite common in PD, unfortunately. Often an adjustment in medication helps this, but sometimes does not solve the problem completely. We try to be with the PWP when he or she is changing posture, but of course sometimes they just get up on their own and have falls.

A heart murmur is not necessarily a problem -- it's when the heart valves don't close entirely. I have one, it's never caused me any trouble. Heart failure is entirely different. That's when the heart muscle is weak and does not pump the blood strongly enough -- circulation is poor, and fluid can build up in the extremities (which you are seeing) and also around the lungs. This can be treated with medication.

For sure you need a neurologist!!!

Many of us are in the US, but there are members from other countries as well.

Good luck, I hope you can pressure the docs to work out these problems.


By parkinit On 2012.01.07 19:16
Michael Okun, M.D., National Medical Director, NPF answered the following for a similar question online regarding stomach pain:
1. See a gastroenterologist to eliminate any other issues. Tests to ensure are preformed are: a) scopes in upper and lower GI tracks and b) gastric emptying study.

If there is a delay in the gastric emptying this may explain some of the symptoms. The best treatment for these type problems - unfortunately highly effective meds have been taken off the market, so other drugs have been used: arithromyacin and derived products to improve motility. Beware of metoclopramide (Reglan) can make PD worse.

Wearing off of PD meds can result in these gastric symptoms, so can be a wearing off phenomenon. Take meds every 2 hours.

Move meals to be after you take meds. Give your meds 1 hour head start before you eat.

High protein ties up PD meds, so reducing protein in the diet is helpful.

Hope this is helpful info...

By Reflection On 2012.01.08 13:28
Yea! New Zealand! Such a beautiful, wonderful country - though I'm sorry you aren't getting the support you need.
One thing that can happen with an elderly person is that each specialist prescribes medications that take care of the symptoms caused by his specialty - but might interfere with other meds for other issues the person has.
From your description, yes, he is overmedicated for Parkinson's, or some other medication is causing his manic symptoms.
On his swollen, weeping legs - that is a symptom, I believe, of heart failure - the heart isn't pumping the blood strongly enough, so fluid pools in lower extremities. It's worth trying a non-pharmaceutical intervention that might help - elevate his legs. As much of the time as you can. So, if he's in a chair, legs on an ottoman or whatever, if on a sofa, legs up - best, elevated on some big soft pillows. And even mild exercises - as often as possible - help, like moving his feet back & forth from his ankles. The muscle contractions help push the extra fluid back into the blood stream, so might cut down on the swelling - without another medication.

By LOHENGR1N On 2012.01.08 16:32
Mollyskid, I believe He should be seeing a Neurologist. There are so many of our systems that Parkinson's can effect. Our autonomic nervous system is one which controls blood pressure, digestion, bladder and bowels, to name a few. Thing that our bodies do subconsciously. Many GP's don't take this into consideration. I hope you can get into see one sooner than later as I'm sure you'll both find it is worth it. Take care, best of luck and hang in there.

By moonswife On 2012.01.09 01:42
Mollyskid, take these wise peoples advice. They have taught me so much. I want to speak to the prednisone Rx. I do not have PD, my husband does. What I DO have is a hypersensitivity to prednisone, even the synthetic type. When you posted your loved one was manic, he possibly was reacting to too much prednisone. My family was so upset with the behavior I exhibited, (not sleeping for days at a time) if they had killed me they never would have been convicted because it would have been judged justifiable homicide. Most people do not react this way and it is a lifesaver for them, but to the few of us it is hell. I pray a movement disorder specialist is in his future, and a GI also.

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