Is there life after PD?
 

A little different post here from ol'cs. For those of you whom have never been "exposed" to my writing (and i only write about PD here, then usually erase my posts because i have this desire to remain 99% PD anonymous; i feel it's easier to bring up a subject, discuss it, then dump it; ya, kinda crazy but I have my reasons).
I would like to ask all of you, those who i know and those who I don't know (mostly the "new" posters), about a subject that i hope will shed some positive light on the topic.
The topic is love, intimacy, marriage, divorce and related issues that we, the younger PWP, are forced to deal with, as much as we are forced to somehow make some kind of a "living wage", while being severely disabled.
The "living wage" aspect has been discussed quite a bit here, and there are few really effective honest ways of dealing with this topic, so i'll just push this very important issue aside for now.
What i would like to know is "are there any really stable relationships that one with PD continues to have with their mate, after the PD diagnosis?"
My world of marriage, love, trust and stability with my mate went to God knows where after I couldn't "hide" the symptoms any longer. In my case this was shortly after DX.
We have been near divorce after at least 14 years of PD. We have been in this quandry because of many PD related behaviors on my part (obsessive compulsivity, and physical changes which have weakened me to the point of having to retire on SSDI+, a lot of "paranoid (perhaps) dilusional thoughts of her cheating on me (a classic PD issue,wich invariably leads to a loveless mriage (she did ask me to leave my home and my children, and i complied after 6 years of "baffling psychological warfare" and many "uncertain" behaviors on her part, no doubt because "we" have 3 "children"(15, 20, 23; children???) and she needs my income to get along even though she now has a job and i'm getting worse, needing more of my income at he same time as my "family" does.
Basically i feel, unwanted, unneeded, uncared for, unloved. And i'm a man, i always thought i was the woman with PD that got the short end of the stick.
Recently, i tried to mingle with local women, but they will only "talk" to me, and want to hear very little about the thousand pound gorilla who is constantly tagging me whether i ask a stranger to buy them a drink in a bar (usually they see canes and run), or attempt to utilize online meeting venues (where i pull no punches and am honest about PD and my remaining abilities). However, Zippo, no luck PD boy. I fact, i have been openly used and then thrown away, just like a microcosm in time, comparing 14 years of PD to 20 minutes of cordial conversation, with no hint of desparation to "find someone" at all.
So, instead of looking for someone else, with true intentions of seeking a single mate, which we all need desparately; or thinking that i'm "washed up" and "worthless"; i keep trying, but to no avail. Whenever i see a couple embracing, i just sigh and keep thinking "why not me?" Is it the "Parkie mask?", do I slip up and subcontiously sound "needy" or like a "complainer"?
Why is it that nobody wants us? Some days, i still look good and could only "throw somebody off completely" if i went dyskinetic all of a sudden.
Do people take me for being poor, and thus a "bad catch" even though i'm not?
What is it (in your minds,if you feel that what i am saying is true), that makes us so unwanted because we have PD? A person who is not used to being alone and recieving the treatment that they get when their life changes to having a disease such as PD, i believe, is much more at risk for suicide than if they could just get the few things that they need most in this life, love and companionship.
So whataya think? Do we stand a snowflakes chance in hell of ever meeting another lifelong companion, or are we dust? cs

CS, those are a lot of complex things you are talking about, and as someone who lost a partner roughly commensurate with PD becoming an issue, though there were other problems too, I do know that PD was part of the equation. And that equation was not all about me, but about my partners disinclination to want to be with someone who was steadily becoming less able. I was the breadwinner, and the bread basket was diminishing.........

However with all of this, and the personal emotional knock back that I took from it, it taught me something that I had not got to grips with before, and that was that I do have value in myself, that my worth is not dependent on the my exterior circumstances, but my sense of self worth. When that wavers my quality of life literally goes, and is more challenging than PD. I have not found a new partner, not because I do want one, or because I don't, it simply hasn't happened, and that is something that could happen to anyone, not just a PwP. I have grown in other directions, and the loss of lots of things has, in it's own peculiar way, given rise to me doing things, being things I wouldn't have been otherwise. I do feel the loneliness of not having another human being to be there for me, but have found on the whole that what my life needs is for me to live in the moment, and squeeze as much as I can from it.

I had a great discussion with someone who also has PD the other day, we both have found that we are a lot more fearless than we were prior to parkinson's. Disinhibition, inability to set boundaries, medication or disease, whatever, it has given us a new kind of freedom, and a bit of a chance to refashion our lives. There is life after parkinsons, yes, but you have to find it, and it may not always come in the things that you are looking for, you might just trip over it accidentally!

Hope this is some help, I have enjoyed your posts for more than a few years, and look forward to them. I am learning that life is a lot more than money, and that you can do lots on very little, perhaps someone will come along for you who also understands this...... I am finding more and more that the money equation is what is messing up our existences, changing that individually helps everything.

Life-long companions, they are getting rarer for everyone I think, and once you reach a certain age they are thin on the ground, but never give up hope!

Lindy

i'm divorced, male and have no illusions of marrying again except maybe to another handicapped person. imho, that's a reality for all handicapped people, it may suck. so i live for the day and look for happiness in friendships and just being alive. i suggest counselling. you can only change what's in your head, noone else.

ol c/s-

Well said. Very well said.

Unfortunately for us, there is an inborn and unconscious process of evaluating a new member of our circle vis-a-vis their effect on our chances of survival. Strangers who are overly "needy" are a liability in this primitive system.

While this made since in the distant past, things are different now and it is possible for us to contribute to and enjoy the communal life both publicly and privately. But that ancient wall remains.

Maybe there is a solution to be found in the online "lonely hearts" forums. They short circuit that first impressions problem and allow us to be as we really are. Heck, if a woman can fall in love with an axe murderer serving multiple life sentences, surely she can fall for a grumpy old chemist. :)

Good luck - Rick

Thanks for your replies
 

I realize that many of you YPWP never got the chance to experience a "full" life before PD, so it's actually "better" for those who haven't had this to lose too. That's what i hate the most about PD. For many of us, we slowly lose everything that was our lives piece by piece, it all goes, eventually.
I think that diseases where one loses it all very fast, are "better" than the slow torture of loss that PD imparts on us.
If at first you don't succeed, you are actually lucky if you just happen to wind up with PD. The one thing we are lucky for if we have a family; we get the chance to stock up on life and other insurance, so, in a way, PD can be profitable, i guess.
In the end, all i can say is "i gave it my best shot", although PD always "wins".

A Word from the Wise
 

A wise old friend of mine, when I was getting divorced, observed: "Most people just change partners. Change yourself first, if you don't want to repeat the same mistakes all over again."

Yes Jaye........
 

But that only applies to people who aren't together mentally, people ho have very bad issues that are purely psychological. I''m talking about when your partner is PHYSICALLY turned off by the changes wrought by PD. Anybody who has been through psycological awareness counseling, and is motivated enough to make positive behavioral modifications, hs a better chance of retaining a wanted partner. I'm hinting more along the lines of major surgury, say mastectomy in female breast cancer victims. These create psychological changes in their partner that sometiems cannot be overcome by just counseling. They are deeply etched in a partner's psyche because they involve so much more than just behavior.

i believe that there are so many sides to this that the complexities can baffle and confuse both the pwp and the pw/out p to the point of pulling apart any relationship no matter how strong. there is no guide book to show anybody how to live with their or their partners pd. each person is different from birth, way before the pd came into their lives. each person has different coping abilities, personalities, survival methods and thresholds. before pd came along, the knowledge of our coping abilities and strengths may have been felt or tested due to another type of adversity, but it isnt until the actual diagnosis of pd happens that we begin to experience that side of the coin. and as the progression continues and things change, our adaptability and coping mechanisms must also change.

the pwp (person with parkinsons) has no choice in the matter of pd being a part of their lives. they have the disease and they must learn how to live with it.THEY are the only one who can make the decision on how they live with it. the method of coping can change daily, sometimes hourly as what we try to descern what is happening to our bodies. is it symptom, side effect, or medication interaction? if it is not symptom, that means the possibility is there that we can make that particular annoyance go away which is an elation to the pwp. the pwp deals with emotional anguish which at times is so overwhelming that the only thing that we can do is cry, scream, get angry or pull inward. this is seperate from the depression which may be a symptom or a side effect of a med. the entire life we once knew must change as adaptation to a new way of living is essential in order to survive it. we HAVE to change. there is no choice. the pwp MUST change.

the caregiver also changes. but it not with the same type of necessity that the pwp lives with. they do not HAVE to live with it like pwp do. they can turn their heads from it, walk away from it, become neglectful and even abusive. or they can become nurturing, caring, supportive and sympathetic. the ideal would be the latter, of course, but unfortunately there are many that simply don't get it and don't want to. this is how they are as a human. and as much we wish they would try to understand, they wont. not because of anything we did. but because it is the type of person they are. they will not be able to care, and those of us that are in an abusive or otherwise bad relationship have another option.. that option is to leave.

cs, you are a highly intellegent man. you are gorgeous to look at, generous, funny, and witty. you are trying to find that man in the mirror from the past. that man is no longer there. that man went through hell with dxd and bad marriage and all that is tied to it. this is your life now. YOUR life. enjoy it. relish in it. so what if you have f*****g pd. you dont need a woman now. you need to discover you again. the new you. i know exactly where you are right now. i went through it about a year ago. i decided i wasnt going to turn the page in the book. i decided to throw away the book and start a new one. you already have. look at it.. then add to it. it is your life story afterall.

great post harley!

hey soccertese, im across the pond from you in port orchard