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

blessing in disgise !
 

I have the odd notion that most illnesses including PD is the person's optimal survival mechanism in defense against long physical and psychological stress.
In case of a serious illness like PD, It is the ultimate message from our being that It had enough of the stress and change is required.

In the case of most cancers the message is more desperate and it is a death wish.

Speaking for myself, I believe that my PD resolved some of my most sticky psychological issues. So much so that I can claim that PD came as a blessing in disgise !
I hope this will help some.

Imad

Firstly your honesty is refreshing. Has PD made you that way? Secondly factor this into your paradigm, if you have not already. The world is in a stupid sad tragic dumb place. Its narrow, selfish, mean and obsessed with image, sex and material values at the expence of real people and real values and is plagued by elite groups who manipulate economies, control assets flow pour trillions into killing machines while health education and infrastructure deteriorate and its getting worse as pop explodes and resources dwindle. They also do this with almost complete media control, so it looks sexy.

Now despite this sad state of affairs many good people exist. Find them and avoid those lost in or obsessed with the above. Works for me. Dont forget God. He / she has not forgotten us and this awful world situation.

BTW my partner supports me 100%. But we have weeded out a lot that is superficial and transient. It helps. Make it real

Jak

Harly........
 

Still the same YOU!BRAVO GIRL- You git 'em!. If the others only respected you for your written (and recorded) text, they certainly would see that you've been through the meat grinder of life's black hole and have subseqently been deposited somewhere in between or somewhere else. or something that just make your words shine, with all the truth that one can find, and this isn't just a kudos to youdos compliment, it's the dirty downright truth!
I have been taking measures that have allowed me to forget the last decade or so, by doing just what you described. every day a new day and just get involved with anything that makes me feel better about life, as it is, NOW, with what i still HAVE, and that nobody, especially myself, can take away fom me.
Could it have something to do with getting out from under the Effexor cloud and the fact that i feel right about just finally accepting the CluCk you, from a mind contaminating entity? I might still be whoever i always as, but then again maybe not. Who knows and cares anymore. I'm now just happily working myself to death physically and having altogether too much fun doing it!
Only one little problem, i'm eating so much sinemet that my last bp reading was 80/50, so if i get to having too much fun, i pass out!!!! cs

know somethin cs? i write about things that capture my heart. i dont give a rats *** any more if people respect me or my writings. i have given up on trying to please everyone. you cant. so why bother?i dont live in soap operas and i feel sorry for people who prefer to. its much easier to listen and believe gossip than it is to understand blunt, stark truths. being a realist, i have not the desire to bother explaining who i am, being a person with a neurological disorder i do not have the energy. so, i have come to the conclusion that whatever whomever says or believes about me.. it is not my problem. it is their loss.

Its wonderful you are taking these measures. you have found your shovel and are digging your way out of your hole. kudos to YOU!

Wonderful Post!
 

Harley those last few posts were that of a PWP Genius!!!

Courage Inspiring, Honest, Dignified Post!!!

That post should be bottled!

I will read it everyday, you have accomplished a wonderful mission by sharing such thoughts, how generous and giving you are!

it's a love/hate thing
 

Imad and Jak also made excellent posts here. I'm a little behind. I recall a friend who was repairing her relationship with her husband giving me the same advice as Jaye's gave hers; look within first. I know it's hard when you're alone. Real hard. For 6 years i did it by choice. Then i moved back with my husband.

I guess I'm trying to make the suggestion that even with pd one can repair a family, if both people are willing to make changes in the relationship.

This you know, the artificial garbage has got to go. The spouse has to make great sacrifices with material possessions and that is sometimes not able to be overcome. I had to look very very hard at expectations. As a family, we had to change our expectations but maybe more importantly we have to learn to live with our limitations. That's were the pwp can be so demanding and use excuses that don't always apply, expecting too much understanding.The partner has limitations too. It can't be too demanding on the partner, you'll kill him/her...lol but not really funny is it?

I can't deny the blessings that this illness has brought me - they are almost unbelievable. And yet i feel like crap all the time.

It's a bumpy ride, but we are learning what's important to us by spending our increasingly limited energy on it. As the others have said, worrying about what others think is artificial - in many instances - but worrying about what the right people who are helping you think is important.

best wishes

Just want to say...
 

Excellent thoughts and insights by all. CS- thanks for asking the tough questions...the ones we can't ask our doctors or caregivers or family or friends because they have no idea what this does to a person's self-image and confidence.

I would only add that I am a hopeless romantic. Most everyone has seen "Sleepless in Seattle"...I would encourage you to seek out the original "An Affair to Remember" starring Cary Grant who has plans to meet the love of his life six months after they met briefly on a ship...only something happens to her that dramatically changes the dynamic of the relationship. Interestingly, Deborah Kerr, the female lead, had Parkinson's. This sums it up about relationships and the integrity/depth of people.

I have always felt that it is the rare couple that can go the distance happily or contentedly with one another, and most I have talked to always have the easiest laughter that arises between them. Keeping each other laughing, intellectually, and emotionally engaged is no easy feat, even when both involved are "normal", so though we may falter more physically- heck who doesn't as they age...I think we all still have a lot to offer anyone. The kicker always has been finding someone who can see the "diamond in the rough".

Finally, I do not agree with the sentiment that PD is the gift that keeps on taking. I would look at it in a balanced way in the sense if we get past the obvious suckage, we will find that we can learn from it and perhaps better our lives in some ways that we never could have without its presence. I see PD as a great litmus test for people you either already know or those you might know- I don't know how many of you have had relationships where you feel that you somehow don't measure up? Well, now I am a little more selfish and judicious with who I let into my life...in other words you see someone else for who they really are early on, as PD almost always reveals the other person's hand. If they can't hack it, not my problemo. As Paula and Laura have expressed we do not have the time or energy for head games.

Laura

I'm so encouraged!
 

Paula, Laura and Conductor you are better than a bottle of anti-depressents!!

So many of the things you said are feelings/thoughts I have been having since the onset of PD and the tough times my sig/other and I are having adjusting to this as a part of our relationship.

I have to admit, I too have uncovered new thoughts, roads, friendships, enlightenment and changes in relationship with sig/other. Material things, a clean house, vanity of appearance are meaning less and less to me. Relationship with sig/other is very hard right now, but I see a new dimension starting to form.

Thanks again to all of you for your input, I will read and reread for my daily inspiration.

Wish we could all meet someday!?.........I live in New York.

that's what has built this forum
 

It's mutual invisable - we get our inspiration from knowing we have eased someone else's amxiety. Where in new york do you live?

paula

I am filled with sorrow at how my family have been cheated by my illness. I know they are worried about me. I realize PD is not my fault or choosing, but somehow I think they suffer more than I do and I feel guilty My husband deserves to have the independent person he married; my children, the mother they admired as an active person who accomplished things. Yes, they still love me, but I can no longer be who I once was. I am mystified when people say they gained something from having Parkinson's. I see it only as a thief robbing me of my enthusiasm in life. I fight it, yes I do, but ......

CS - Missed your intelligence and even you impatience. You are one honest man when it comes to expressing what you know and feel.

Ann

Paula & Ann
 

Paula - I live in a suburb near Buffalo.

Ann - PD is a thief........but try to look hard, dig deep..... the thief may have left some things in place of what he took. It may be a deeper dimension of spirit or soul, these are things you can offer your family that they may have otherwise not experienced in your relationship with them.

Believe me, I know it is hard, I am new at this discovery, and sometimes it takes alot of digging for me to get a glimpse of it, but join me in the search.

Express your thoughts on here and we will help you as we help ourselves.

some of us have an easier time of it
 

I do not consider my life easy and i think there is some merit to how Imad feels about illness. My family life was stressful altho my parents didn't divorce, they were incompatible and my mother passed away at 57. i'm how older than my mother.

i am very anxious to follow the research about this new pathway that links emotions, and many of the cognitive , mental symptopms we have to parkinsons and hope there is a link to these microRNAs. this gives us something tangible to say to our families about why we do the unexplainable.

i want symptom relief pretty desperately but honestly don't feel like having a long life of suffering. i am trying to accept it but i don't want to see my children or grandson get it. that would kill me, and my girls are in there 20s.

i'll be in such a rage of despair if they get it that i'm would probably declare war on the people who wasted time and money keeping us at arm's length. I don't mean it as a physical threat but there is evil in the world and the good guys, if they happen to follow the teachings of Jesus, aren't even supposed to fight back. They are supposed to turn the other cheek and then just walk away. very difficult with dishonest researchers. My brother, also a teacher who thinks he might be a high functioning aspberger [sp?] autistic thinks we are all on the same continuum. and that makes sense when i look at my family. i used to be the normal one lol. First born, more attention, but first born with colic and who sometimes had to be squirted to stop tantruming. are we born with pd? we used to say that my father was "neurotic". is he autistic? my brother teaches junior high and has had autistics and describes them as paranoia on steroids. one big panic attack and it hurts.

are we the same or are we just reacting to a devastating illness in the same way as you would expect a human being to? i've been wound so tight and i know the only relief is marijuana because i started using it with some, not all, friends from online when we got together. This progressed to trying to get it at home but it's just not too easy for a grandmother and ridiculous that we should have to go thru this. so i am not using it now, am never hungry because of sinemet, get up for a couple hours in the middle of the nite, and never relax. Drinking just doesn't do it and i don't want to drink with xanax.

so how is it that the world spends trillions on drug development but creates shortages and something we can grow ourselves,which helps appetite, sleep and pain, along with relaxing the mind , remember we are also uptight in our minds, is forbidden. we are like prisoners and we live in the countries with abundance of everything.

all of this stress is bound to affect relationships and we have to learn where the limits of our carers are, where to draw the line of what to ask of them as they age too.

i just settle for a house that gets cleaned less, we try to keep it picked up, but if you keep your standards high in house cleaning you will be a slave to it as i was most of my life, which kept me wound up tight every saturday when i worked. it's not worth it.

as laura says , we need to laugh. but my mouth will only do that in the morning.it gets dyskinetic in the afternoon and then looks like a smiley face with a headache and my speech goes with it. this is sinemet , not pd, as you will see in the pccvideo. i let the two worst pictures ever of me to be in that video. it is about as gross looking as the hole in the guy's head. i don't go out much but i will say this, i' ve never seen my daughters look embarrassed by my appearance, which is very parkinsonian by night time and my speech is repetitive and volume gone. i'm pretty paranoid and look for that. i guess taking them to summer school and having them help me with the physically impaired desentitized them.

I have taken my daughters to conferences as my carer, which needs to be paid for by foundations not out of pocket. we are no longer safe but we are hobbling off to work for our cause. another story.

so i guess i'm trying to say that you need to educate your family somehow, online might be the best way. support groups tend to have speakers but i'd love to see them have dance. include them in your activities concerning pd when they are old enough. my daughters and grandchild are pretty good at ignoring my head bobbing end of dose dyskinesias as does my husband. when my leg goes i walk like a troll under the bridge. but they are not sad because i've had it for most of their lives.

i'll end with what i heard my grandson say to a friend in Pennsylvania wheni came in to the room he was saying "she is reaaalllly old." But the friend had been there two years ago when i retrieved a volley ball and made it almost back to the pool at the top of the hill but not quite, had to turn forward rather than fall backwards and trunk forward trying to keep upright but losing the battle and flying downhill as everyone watched the disaster unfold- going down on the roots of the tree iwas headed for.

the child was just 6, only 4 when it happened but he remembered and followed me into another room and asked ,"did you get hurt when you fell?" i said it hurt and i was sore but nothing was broken. it was so sweet.

just follow the golden rule and that includes trying not to instigate worry for others ... i know i know its pretty hard and i definitely don't do it as well as i should.

cs i'm straying from just marriage, jump in and take it back if you feel like it.

Dear CS,
It is both an accident and a coincidence that I found your post just now. I was actually looking for information on Plasmapherisis as my friend is currently in the hospital undergoing this treatment for his Parkinson's.

How is this relevant to your question? Well, I haven't seen this friend in 24 years, and we are about to reunite in 3 weeks to see if we can reignite an old flame. We dated for a couple of years back in the 80s and I was pretty crazy about him. But, he had a lot of "wild oats" to sew, and I was ready to settle down. We parted ways and went on with our lives, only to reconnect a few months ago on Facebook.

When we reconnected, he told me about his Parkinson's right up front. We discussed his symptoms, treatments, side effects. (My grandfather had Parkinson's so I've had some experience with the disease.) He asked me if I had any questions, and I did. But they were the same questions I had 24 years ago. "Are you a good man today?" "Do you honor your family?" "Do you have faith?" "Are you capable of committing?" "What brings you joy?" And so on. There's so much to talk about and know about each other that his disease is sort of swept to the side. I'm sure it will work its way into many future conversations, but it certainly isn't one of the top 10...20...30 questions I have for him at this time.

He tells me he's a kinder, gentler, person now. He voluntarily acknowledged that he wasn't the best boyfriend many years ago. I'm excited to hear more about his emotional evolution and can't wait to spend time with this "new and improved" man.

So, I thought I would share this perspective from the outside looking in. When it comes to a relationship, Parkinson's is not a deal breaker...not at all.

Also, I've been single for 14 years and tried the singles scene, web sites, etc. Found it all depressing. Don't beat yourself up - it's just an icky, somewhat unnatural process and we all feel judged when we're going through it. Personally, I decided instead to focus on my own passions and interests and as corny as it sounds, found a happier life in the process. I'm counting on my friends to be my lifelong companions and if romantic love works its way into the equation, well, that's a bonus!

J

Still stable
 

You ask: "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?"
----------
Mine is. But I'm fairly new to PD. I was diagnosed in 2006. But I was diagnosed with breast cancer in 2003. We've been married for 40 years. I'm not on medication so I haven't suffered the side effects. It's getting more difficult to do some things. We help each other. He doesn't have an illness but he relies on me. I guess that is what keeps me going.