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Topic Pd'er is Worried/Paranoid Go to previous topic Go to next topic Go to higher level

By mytngenes On 2010.12.18 21:54
My hubby (dx'd w/PD 12 yrs ago) is really becoming worried and concerned about his condition. For the past 3 months he's been experiencing many more "off" periods and when he has these "spells" they seem to be more intense than they used to be. When he talks of a "spell" he is describing intense stiffness/heaviness/pain in shoulders/forearms, across his upper back, and overall weakness. These episodes don't necessarily happen at the same time each day, although often from 4-7pm and last a couple of hrs. He has begun a pattern of frequently calling the PD Specialist or DBS surgeon to see "what's wrong". He has been to see each dr and they've either tweaked the DBS or meds, but he's found no relief. Called the Specialist again on Friday and got an appointment for Tues. Today he tells me that this morning he called a long-time friend who's father had Shy Drager/MSA and died about 10yrs ago, thinking that he too must have MSA.

I'm concerned about paranoia. Anyone else dealing with this or something similar?

By karolinakitty On 2010.12.18 23:06
You don't state if your husband has any type of dementia, but with that comes sundowning, and this sounds familiar. Our Movement Specialist, Dr. Bachman wrote several papers on this. They are very technical but understandable. He recommended to us that instead of my guy taking his Aricept in the morning like prescribed, to take it at night to avoid the sundowning.... It has worked to this point. We take both the requipXL and the Aricept at night and avoid the "sundowning" experience from both.
I should mention to check with your doc if he is on any dementia meds about doing this.
Also... Bachman stated that there is a type of sundowning with almost all meds. They wear off maybe earlier than you or the doc thinks they should, plus when they are wearing off early there might be a need for change on meds. On the other hand he said it doesn't necessarily an increase in dosage, but may mean a change in the times given. He has stated in one of our visits that a lot of docs increase thinking that, that is the issue, more meds needed. However, he said that sometimes it can just be a simple time change in the med given as each person has a different daily routine.... Talk to the doc.... it might help

Also sometimes we all are guilty of reading to much into our own or our loved ones afflictions.... Could be he knows some of the symptoms of MSA, but maybe not all the issues... perhaps if you take a gander at this link to an MSA sight it might help ...http://www.wemove.org/msa/
It too is as complicated and hard to diagnose as PD itself....

By mytngenes On 2010.12.19 18:17
Thank you, karolinakitty got your response and the information/ links about MSA. I have wondered if he could indeed have MSA given the fact that my hubby has had the autonomic dysfunction symptoms almost from the "get-go". I have always thought that if that were the case (and he did have MSA) then the sinemet (or carbo-ledopa) would not work or be effective. Perhaps he's just now at the stage where it is no longer effective. Definitely things to discuss with the Movement Disorder Specialist-we go to Vandy. He has an appt this Tuesday.

You asked about dementia. No dx from the dr but I'm seeing behaviors that, to me, suggest that he may have the beginning of dementia.

Thanks, again. This forum is so helpful to me. There are so many times that I just plain 'ole don't know what to do, and I come here and read where others have already experienced the same thing or they may currently be experiencing the same. Very encouraging.

By LOHENGR1N On 2010.12.20 00:23
mytngenes, Also what your Husband is describing are classic "on/off" fluctuations experienced with long term Carbidopa/Levodopa treatment (about 5 years give or take). With DBS involved you've really got to run this by the Doctors. The paranoia could be an imbalance of chemicals in his brain or too much current DBS even too little current maybe. As for MSA or Shy Drager syndrome I don't know the protocol for DBS regarding these diseases, or any of the Parkinson's plus diseases. I would hope that any concerns would have been addressed pre-op. Also pre-op they should have been pretty sure of His not having MSA/Shy drager if DBS is of no benefit regarding those conditions.

Bouts of paranoia seem frequent and intensity varies with P.D. wether from medication or the disease itself. Saying this doesn't make it any easier to be dealing with or living with I know. I don't know the answers but knowing others are dealing with like problems or understand what you mean is of some comfort. Hopefully the Doctors will get it straightened out or at least to a tolerable level before long. Take care, best of luck and hang in there.

By parkinit On 2010.12.22 22:29
My spouse's PD has progressed and he was on the doctors to constantly change this or that in his meds to allow him to be "mobile," but I think he finally understands that he has advanced PD and the doctors cannot "make him better." He takes a nap most days and found that he is functional if he is timely with the pills and has a low-key, physically low exertion day.

I'm not discounting any of the above. You need to check into all options, but it also could simply be disease progression.

By Emma On 2010.12.23 04:33
There could be any number of things causing the increase in his "off" times. At the end of your post you said you were concerned about paranoia. With my husband I have noticed that as his disease progresses he is more acutely aware of every symptom and every minor change in his body and physical condition, whether it's related to Parkinson's or not. I don't know if it's paranoia, I think that it's probably just that he has less to do and focus his mind on so he's just more aware of it. Those of us who are healthy often ignore little changes or aches and pains because we have other things to do or think about. My husband constantly thinks there is something wrong with him, I literally have to check every hangnail, every bump, bruise, blister, etc. I have to take his temperature at least once a day. Most of the time there's nothing there, when there is it's just some normal minor thing. He also tends to ascribe everything from a headache to a sleeping foot to restless leg syndrome. If he hears about another disease he thinks he has it instead of Parkinson's or in addition to Parkinson's. As I said, I think it's just hyper awareness and attention to his body because he doesn't have much else to focus on. It drives me nuts but I always pay attention to it since one of these times there might actually be something going on.

By parkinit On 2010.12.25 11:10
I think there is somewhat of a fanatacism - whether you want to call it paranoia or "awareness of body" as the disease progresses. I've never really labeled it anything myself. I just go with the flow that this is part of the PD patient and part of my care for/of him.

When I was reading through the posts (especiall the one preceding mine), I thought, "This is MY husband, too!" Many of the bumps and bruises are magnified into greater issues than they are, and we don't take his temperature every day, but we have to check his oxygen level every day now since he was diagnosed with sleep apnea.


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