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Personality changes


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#121 Trying hard

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Posted 25 July 2015 - 02:07 AM

I am not sure what you are trying to say when you bring up the homeless with mental illness attacking everyone, are you saying that PD is a mental illness?  PD is a progressive neurological disorder that progresses differently for each, and you were the one who called it a snowflake disease.

 

My DH didn't have a mental illness, he had PD, his brain chemistry was off, yet he was "together" enough never to attack me or anyone else.  As with PD each pwp walks a slightly different road, so what may work for one pwp won't for another.  Do you want your DH to set boundaries for you?  Weren't you the one who was saying how upset you get when you DH does something that you don't like because you had yourself more organized that day, didn't need him reminding you of anything.   Don't boundaries take away some of you independence?  Don't boundaries keep you from perhaps trying things differently?  

 

If you have rages that come, then make you DH set the boundaries that are necessary so that they don't happen again, have him set the consequences and that should stop them.  Thing is NN no boundary can stop them if you are experiencing  just what I describe above, it is the way your body has chosen to react to emotion the only way your brain knows how now.  Can you control it, sure, but not by setting boundaries.


"There is in every woman's heart a spark of heavenly fire, which lies dormant in the broad daylight of prosperity; but which kindles up, and beams and blazes in the dark hour of adversity."  Washington Irving

 

"I shall pass through this world but once.  If, therefore, there be any kindness I can show, or any good thing I can do, let me do it now; let me not defer it or neglect it, for I shall not pass this way again."               Stephen Grellet

 


#122 miracleseeker

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Posted 25 July 2015 - 06:55 AM

I think boundaries only work if the person understands the consequences when they step over the line and is fearful of it.   They also have to be clear headed enough to know what is happening and to be able to contain themselves before  they get out of control.   I think this applies to everyone with or without PD.


Edited by miracleseeker, 25 July 2015 - 06:58 AM.


#123 miracleseeker

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Posted 25 July 2015 - 08:20 AM

MS commented...who has the right to be ugly?

Are you referring to me?  I didn't say ugly.  I was talking about people who do whatever they want regardless of it being right or wrong.  Beautiful people included.



#124 coacht

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Posted 25 July 2015 - 08:49 AM

What a great discussion! I identify with both the CG and PWP. the alexithymia, delusions (thinking she told me things she hadn't), paranoia, punding, compulsive behavior, executive function, etc., are due to PD and side effects of drugs. don't worry about thwarting the plan of God, if he wasn't God then you could, then He would not be much of a God. Try to think about what is best and discuss it. My sister-in-law told my father-in-law (FIL) once, that (insert name) are always right, but (insert name) always know best. That family trait is definitely there. :) the family trait of having to be as good as everyone else in their own eyes is there also. That doesn't make life easy without PD. My MIL said my FIL was kind of touchy and that has followed through. I also agree that people that don't have problems are probably not posting here also.

 

Thanks to everyone,

 

Coach T



#125 cwbee

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Posted 25 July 2015 - 08:53 AM

I have to say boundaries are helpful with my PWP. If he starts raging - And I think we know the difference between raging and having differences - I will say to him that we can continue this tomorrow. If it continues still, I leave. Maybe 20 min will pass and he seems to have calmed down. He has admitted that he doesn't even realize what he is saying and I do believe him. I refuse now to to engage in this craziness. Why would I argue with him?
The PD brain is deteriorating, no denying that. Call it what you want but there are definite changes.
Boundaries are most helpful to my family.

#126 citabriapilot

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Posted 25 July 2015 - 09:41 AM

Most of you don't know me at all. I haven't been around much lately as I had severe vision problems. Also, I didn't read all the posts. I read the first couple of pages then skipped up to the more recent posts so if I repeat something that has already been said sorry. I have PD, was diagnosed in 2009 but had symptoms for 5 or 6 years before that. I also live alone with no close relatives or friends so if I have had any major or minor personality changes I wouldn't know. I was also a caregiver for a person wit Alzeihimer's for 10 years so I have some understanding of what a CG goes through. While I am not trying to make excuses for a person with PD who knowingly acts badly I would like to point out that a person with PD has an increased likelihood to have two forms of dementia, Parkinson's disease dementia, and Lewy body dementia. Recent studies have shown that all PWP have Lewy bodies not all get the dementia, but the very fact that we have Lewy bodies increases the likelihood of that form of dementia. That doesn't even cover the normal chance of getting Alzheimer's, so PWP have to deal with the chance of 3 or more forms of dementia. 

 

The reason I bring all this up is so much of what has been said here sounds like my mother when she was suffering from Alzheimer's, that I'm wondering if some of the problems aren't caused by undiagnosed dementia. Your doctor should know this and take it into consideration when dealing with these issues, but most neurologist really don't want to deal with the person with the disease but only the disease itself as if it had a life of it's own. There is also the problem that many of the meds prescribed for PD cause some personality problems, OCD type behaviors and paranoia, to name a few. An example of this I could see in my mother who was a very mean person became vicious before she was diagnosed with AD. I thought her normal personality was just becoming worse or she was acting up because she knew she could get away with it. She was easily the nicest person around when with others, but she had always been that way. It wasn't until after she was diagnosed and I did some research that I realized that her normal meanness was being exacerbated by the Alzheimer's. It is easy as a caregiver to be led astray by what we don't know and haven't been warned about.

 

Again, sorry, if I've only repeated what's already been said.



#127 miracleseeker

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Posted 25 July 2015 - 10:19 AM

Sorry about your mom Cita.  My mom has always been a timid woman with zero temper.   As her PD progressed she just withdrew more to where she isn't even speaking now but that's more of a dementia thing.  It does look like PD will make you more of what you were before.



#128 New normal

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Posted 25 July 2015 - 10:37 AM

A great discussion....and I welcome Cita's comments....as I know she has a long history as a CG as well as a PWP...it is so difficult to have a discussion through texting....and misunderstanding can occur....nonetheless....I think the benefits outway the bad...and the discussion is productive....


MS..I think at the time I referenced you saying about "who gets to choose to be ugly".... I was agreeing with you...that some people,can "get away" with abusing their CG's....while others are held accountable ...and why is that? Can CG's differentiate PD affected personalities...and somehow it is not as,hurtful...then, the next day the CG feels it intolerable ??? (I think that is what I was saying)...in any event...I know I was agreeing with you...

CoachT....what I hear you say...is your wife is exhibiting personality traits that not only does SHE own...but is culturally embedded, so if you try to let anyone know how hard it is to reason with her, her family supports her actions...as they have always been "her"...so,how can a CG get a grip on that.....while it worsens.....to the point that communication is lost...

And Trying hard.....we are not on the same page.....never did I mean to equate the homeless with PWP....I merely added that paragraph as a postscript....that from my life experience, a psychiatrist told me people who are experiencing mental illness......regardless how severe.....and she used the homeless as an example....because some of them have chosen an alternative life style because of their unwillingness to conform....that THEY still understand boundaries. And in MY instance....especially because of young children present....I should establish boundaries......I, myself, am trying to establish boundaries with my DH...having experienced the god awful feeling of losing control...now ...we both recognize the elements that precede that behavior.....and we both try intervention to keep it from happening. Obviously, I am not in stage three....obviously I still have capacity to analyze it...and most obviously I am trying to make a difference in my behavior while I can.

I appreciate Try Hard explaining the transition to the point when she recognized that her DH no longer had capacity to control his personality behavior...and because she walked with him step by step...she had a clear perception...rather than a CG in assisted living.or a CG's family that visits every 6 months.....what Trying Hard said helps me understand the process....

Also, when I recounted the instance of my DH giving me driving instructions...or directing me where the car was....I did not get upset with him....I do know my expression showed frustration....but because he and I have discussed it....he was not offended...he knew my expression was directed at myself...or PD...because, again...we both are trying to separate emotion from each other....and direct it to PD.....AND...my point was...just as I went out the door, I was grateful he did indeed point the direction. The example was to indicate that as a PWP, I might not like my dependence on him for direction....but i am grateful for him....and as I transition to more dependency...I am trying to accept it...and not make an issue of it.....as Johnny is stating in his study with Dr Low...it is WE who put the value on PD...not PD....so I am trying to incorporate what I inderstand John is saying....IF I can remove my emotion of the fear of dependency from each little scenario wherein my DH is helping me.....the friction disappears.....THAT is what I was trying to say....

When we ...CG's and PWP discuss these things...it is so important to keep in mind the huge discrepancy of life experience....so,our perspectives are widely varied....I am the newbie here....you all are the masters....it is you to whom I seek for advice....I am jus trying to figure this out while I still can....and so far...I have taken every morsel of advice from the CG's forum and attempted to apply it in my life....in the slight hope I can avert some of,the challenges you all have faced.

When I refer to "ugly"...it is the ugliness of spirit...when I rage...I can feel that ugly spirit....and I want none of it......yet what I am hearing...I rally can not control it.....and I know this discourse makes it sound like I am trying to,control the universe...not so...my DH and I talk often...and are trying to build together a strategy that will benefit both of us....boundaries??? Maybe it is the look my DH gives me when I may be heading for a rage....maybe it is me saying, I think I can't discuss that now, I need a walk....those are signals we both respect...and heed. My DH NEVER questions if I need to go to another room for a while...and not do as we had planned...at this point he trusts me...I trust him...but at SOME point the balance will shift.....is what I am hearing....and then what?

At what point can a CG no longer walk side by side...when it no longer is a team effort....and ....as you who have walked ahead of me reflect.....at what point is the PWP REALLY no longer responsible ...and can no longer understand boundaries....yeah...it is different for everyone...I get it....and it depends on the relationship, I am sure.....

I guess...while I am not obsessed...I am frightened....seldom in my life have I been frightened...because I am born with the genes to step up and face the enemy....death....or defeat are not my enemies.....dependence is.......and, I suppose ...because I have seen abuse as a youngster...I have NO tolerance for it....none.....if EVER I thought I would be the cause of abuse to my DH, it would put me over the edge,.......so this whole discussion....is NOT intended to judge anyone...or to suggest I have answers...I am seeking answers.....so that I can remove the emotional overtone of fear...as John suggests.....I hope this makes sense....and thank you for my taking so much space in your forum.....but it is you who know the answers....
Dx'd 6/13 @ 66 by MDS in office with sub linquil L dopa challenge. Carbidopa/l dopa 50/200 5x in 24 hr span.
Reaction to Amantadine 100 mg 2x per day,Discontinued, 4/15.
Normal DaT scan '13, normal MRI, '13 Second DaT scan, 10/14, normal.
Symptoms: 90% controlled: significant tremors rt & lft side, rt leg drag whn tired, balance, slow movement, cognitive/ speech issues, apathy, full body dystonia seizures approx one per day, dysfunctional autonomic systems
Cherish your loved ones, make memories with them..........now.

#129 coacht

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Posted 25 July 2015 - 10:48 AM

NN,

You are correct except for the fact that my DW's family is really out of the picture. They have fallen apart since that attitude is present in the family. the brothers family business split for example. No help from that side, they just want to be a friend to my DW and not actually deal with problems since as a family they never deal with problems. Culturally institutionalized for sure. My family gets it and everyone tries to avoid causing problems since she is easily offended, but that is not always possible and she never offends since she always knows best. :)

Coach T



#130 cwbee

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Posted 25 July 2015 - 11:25 AM

Nn your insight is so valuable to cg's. Do not fear offending as we all know writing is much harder than speaking with each other. You have raised so many points that I am so appreciative of.
I hope we can all agree to post freely, as this is what makes the site so helpful. We can vent freely without judgement. I for one lived 9 years with this dx for my husband. He chose to not educate himself and thought the changes were not significant. As I raised questions, I felt shut down by him and his neurologist. I wish I had this outlet back then. I felt completely alone, embarrassed by my concerns, and uneducated by the behavioral aspect of PD and utterly scared by this disease. As a nurse working with many PD patients, I never witnessed this, causing me to feel it was all my fault.
I applaud all the members here for their honesty expressing their fears, frustrations, and experiences. So no NN, I beg you to continue your posts. You have educated me as everyone has and open this closed door and support each other.

#131 FlyBaby

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Posted 25 July 2015 - 04:41 PM

Within this forum, I choose to sit, read, and learn.......... Thank you to ALL that post here...........................


Michael

Current age= 55

First symptoms: 1975

Prior mis-diagnosis: Dyspraxia, Essential Tremors, Ataxia, "Nerves".....

Final Dx. of Parkinson's: 2013

 

DBS surgery 12/2014............ Bilateral lead placement with a single battery/stimulator on RH side. Turned on 12/21/14 

 

"I will do what i can, while I can, and when i can't, I'll do something else"

 


#132 Trying hard

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Posted 25 July 2015 - 10:46 PM

Hi Cita, so glad you joined the conversation, the more input the more we all learn, thank you!

 

cwbee it really is a shame that your DH choose not to educate himself, that makes it so much more difficult for you, and I can certainly understand why you need to set those boundaries. 

 

New Normal   we may not be on the same page but lets just hope we are at least in the same book!  ;-)  If setting boundaries works for you, and for your DH then go for it, work hard everyday at it!  One thing I do wish to say is that at the end my DH still only had mild cognitive impairment, he was still very much aware of what was going on, the biggest thing was that he lacked the ability to be my companion, to be my husband, he could no longer empathize with me, or read my emotions, and it is hard to loose the one you love when you see them there in front of you, and find yourself wondering who that person is, you can rationalize it all you want, but it doesn't make you feel any better.

 

Each of us has to take what we are given, and then find the best way to deal with what ever the situation is, and there is no right or wrong. 

 

Writing on forums is difficult, I am not one who likes to type a response I would much rather sit around and have the discussion, mostly because after all these years it is hard to condense and sometimes I skip the first 20 years, and jump right to the end, leaving out a whole life time of happy, and when ugly times came they were usually fixed by doing away with this medication, or cutting back on that medication.  If that didn't work then we struggled to find ways to make things work until they did.  I do think I was lucky in how my DH responded to his PD, not saying in was easy for either of us, but it could have been so much worse, and for that I thank God!

 

Best of luck to all the pwp's and caregivers, may this conversation continue, and may we all learn from each other.


"There is in every woman's heart a spark of heavenly fire, which lies dormant in the broad daylight of prosperity; but which kindles up, and beams and blazes in the dark hour of adversity."  Washington Irving

 

"I shall pass through this world but once.  If, therefore, there be any kindness I can show, or any good thing I can do, let me do it now; let me not defer it or neglect it, for I shall not pass this way again."               Stephen Grellet

 





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