...to read this Robert.I have popped back to say in all my fervent rambling in the above post of mine,I overlooked mentioning specifically those important factors which you have stated.I too have been blessed with a marvellous family.Two sisters live close by and are my angels,as is my sister who lives further away but who provides me with verbal support and keeps my faith going.We are both Christians.[yes..I know I know..a Christian who swears ]
And my two brothers also,who live away,they are all brilliant...as are all my friends...near and overseas ..those from way back,and some new ones I have made on this forum.All are close to my heart and valuable in my life.
Guess I am lucky uh?

Thanks for this Robert.
x

when you come back after a hiatus, and hit us with one of your ultimately ponderable threads?
Whew .
It's very early in the morning on my spot of the globe. After a nights hallucinosleep, i usually get an hour or two of on time before i have to injest the dope that keeps us moving. And i do mean moving. AS I said earlier, i don't post too much now because i have too many of those times when i DON"T get up early, so when i do get a chance to post the dysks are so bad that i constantly kick the computer table and have to correct durn near every word because i either hit 2 keys at a time or reverse letters dyslexically, with merry abandon. Don't mean to complain now, parf, parf, ooo, so sorry
Well, we've heard from many of the posting crowd, and i know that i learned something. It truly is great to have different opinions as expressed by others on this forum, we can all learn from each other, even small ways to help ourselves weather this giant storm.
Rain on meeheehee (the who)
Michael, the beast is a very good rendition of whats going on in our heads. I got visual imagery of Michael slaying Satan (this welled up from some subconcious neuroconnections from my distant past).
I appreciate that what i had to say WAS ondered by a few of you. I really did expect this to just sink out of sight in a few hours, but many of you took up on it, and were not going to let me go unchalleged.
I guess that the reason why i am posting again is to thatnk you all for the reply. The younger PWP should now see that we truly are all VERY different from one another (more so than PWOP), but very clearly have some common ground with which to build a forum that is useful to us all.
And it always hurts to reveal ones inner feelings of doubt and sadness; sure is a lot easier to come up on this podium and say that everything is alright, and you are making great progress with PD.
SOME of you are LUCKY to have mild PD symptoms and agreeable partners, but for those of us who aren't as lucky (and don't get me wrong, i know that luck is often a lot of hard work on your part too), eveything that has been said that is perhaps a bit difficult to both believe and envision, DOES happen. I thought that what s happening to me now, would be many years away, but in my smugnosity (i like to make up words, ok Carol ), i was wrong.
IN other words, I have fallen right into the trap that fed up caretakers sometimes use to get rid of their "downers" (moooooooo!).
I should have realized from the beginning that my spouse would'nt take much, she even TOLD me so! So when i began wondering what was going down, she saw that it was time to pop that zit right sprightly! . Now i can say that it's all my fault for being so stupid to think that there is goodness in ALL people. Let me tell you it HURTS bigtime that what has gone down has probably emotionally scarred my kids for life, has shattered all MY dreams of what could have been, and is downright embarrassing to have to explain to all in our lives. But she is draining the bank accounts, buying EVERYTHING for her and the kids you can possibly imagine (new cars, new wardrobes, new everything), and is even sore that i was prudent enough to take her hints to heart, so i still have many assets that are out of her and the courts reach. So just be wary, you van trust other people only so far. I now know the meaning of keep your friends close, but keep your enemies even closer.
I just hope that many of you really can trust who you believe you can trust. I thought that i had it down, but i was wrong. And that's a wrap. See ya round folks! cs

Thank you for your honesty.That must have been hard to share.I hope you didn`t read from my first post following yours,that I,personally was negating all you said.That was far from my intention.You spoke many true words,but my intention was to reassure folk,especially those who are well into the disease,not necessarily in years,but in symptoms and difficulties,that it is indeed healthy and their right to be able to express worries,anxieties,sadnesses ,fears.I hit an all time low several years ago and posted truthfully on another forum.I literally wore my heart on mym sleeve.That post prompted over 70 responses if I remember correctly,from folk who wanted to help,right down to lurkers who said it had given them permission to say how they felt too.I have no regrets about logging my journey through that hell,and it truly was hell.I never thought I would recover.But hopefully along the way,people could relate a little to some of my agony and walk the journey with me.
I feel so sorry that you were not supported in your time of need.But that,CS is not your fault. .You are so right that family and friends do not need to hear day in day out our tough battle.And I don`t play it that way.
In your case,it sounds as if PD was a convenient hook for your wife to heap her problems on to.Not the other way around.And I for one,have noticed of late,that recently your posts have been so much more positive and injected with humour.That has made me so pleased and I hope is a reflection that emotional healing is taking place.And I for one take my hat off to you for the strength of character you display.
No.We can`t gloss over what is to come to us all.We can only trundle along,upoholding one another and that is why this forum and the people on it are as precious as the day is long...yourself included.
And I have suffered my own relationship battles...coming through the storm now,but no one knows the true extent of what folk suffer.
We just have to be there for one another.

I needed to say this.
Love
Steff

ps.Would love to sit down and have a beer with you [hic] Bet you could set me right on a few things hey?

Ann, great thread...thanks! I have been avoiding reading it for selfish reasons..."The Stranger I've Become" just sounded so sad to me. I am a stranger to myself. I am certainly not the person I was just a few short years ago when still working. How could I have ever imagined back in 1989 that I would be sitting here today typing into a Parkinson's disease forum!! Or that I would have been forced out of work in 2000 due to PD. Or that I would be living "paycheck" to "paycheck" today with no financial security, having to deal with Medicare RX donut holes and the like.

Curious, your dad may seem lost. There is a poem in a book that Joan Snyder had on her website, Voices From The Parking Lot. It is filled with poems and other writings...a beautiful book. One of the poems has always stayed in my mind. I don't remember the title, but it is about being "left behind." About how that "mask" one may wear is hiding what one truly is feeling...sad, happy, etc. So, when you see me, don't forget I truly am inside, behind this "mask" I now where.

In these past 18 years with PD, I have NEVER had a response of any kind from my children or sisters...never a "how are you doing today"...other than my mother who invariably asks, "how are your pills working these days" from the other end of the telephone.

A friend from AZ was visiting her cousin recently in Chicago. Her cousin was dxd with MS two years ago...another emotionally and phsically alone patient. My friend noted that her cousin's family never inquired as to how she was doing day to day. When asked if this was always the case, her cousin replied, yes.

Sadly, it took one morning off meds recently for a trial doctors appointment for my eldest to see the "real" me...rightly so, she was shocked into paying attention...It is amazing what a large amount of phamaceutical chemicals can do. Then it took a trauma to the brain for any kind of empathy to come out of her, only then did the hugs appear, but count on the fact that the day will soon come again that we will be back to "normal."

Someone along this thread commented about the lack of discussion about significant others. What always saddens me is the lack of empathy for those of us who live alone, physically and emotionally, with PD. No carepartner or even the symbalance of one. No one to help with bathtub scrubbing...ugh!! No one to help with chasing the fork I just dropped on the floor. No one to go to the grocery.

Don't get me wrong, anyone who knows me knows that I am one fiercely independent person. I never complain about anything...honest...why would I, there is no one to listen anyway, accept for my recent complaints about not being able to drive due to the Keppra I am now taking. Do I sound bitter, yes!

I envy from the depths of my soul, everyone who has any caring person in their life. Does this make me pathetic, I suppose so.

We are all in this journey together, or why else would we be here replying to this thread or any other thread in this forum. Just so we ALWAYS remember the following, we can all be fine. And, I do stretch the meaning of the words a bit....referring to PAN, support groups, etc.

My step-father was an Episcopal Priest. When he died several years ago, no one wanted his library of books, so I took them. In one of the books, translated from French i 1954, is a prayer...several actually...that is appropriate and about support:

The Wire Fence

The wires are holding hands around the holes.
To avoid breaking the ring, they hold tight the neighboring wrist,
And its thus that with holes they make a fence.

Lord, there are lots of holes in my life.
there are some in the lives of my neighbors.
But if you wish, we shall hold hands,
We shall hold very tight,
And together we shall make a fine roll of fence.

There are several other in this book, with similar meaning:
The Friend
The Brick

you said,
Someone along this thread commented about the lack of discussion about significant others. What always saddens me is the lack of empathy for those of us who live alone, physically and emotionally, with PD. No carepartner or even the symbalance of one. No one to help with bathtub scrubbing...ugh!! No one to help with chasing the fork I just dropped on the floor. No one to go to the grocery.

YOu would be surprised, if you saw the lives of some of those with "carepartners". They may have someone to get groceries, but i'll bet that if you not only had to chase the fork that you just dropped on tne floor, but were "expected" to chase after not only your fork, but also three others who would just as soon walk away and not pick up their forks, clean up messes from three other's all day, cook and clean for three others, etc.; all the while saying to your self "i feel like crap, they are selfish and will not help, and i must do this because its my duty" that you would soon wish that you were back alone to pick up only your fork. "Carepartners" can be abusive, surly, and many other unpleasant things which can make life a living hell, one which you sometimes CANNOT free yourself from because you just can't get the groceries. Many PWP find themselves in nothing less than a situation of "bondage", for many reasons. Some are financially dependent on their carepartner, who can get groceries, but will then expect that you to grovel at their feet in gratitude for this, and then bark out orders to what you can do with the groceries, like "make me dinner, NOW! *****!"
You should be happy that you are alone, and not in a bad, abusive relationship with a "carepartner" along with any other people who would place immense demands on you, demands that you would be hard pressed to fill. I'd say that many, perhaps the majority of "carepartners" are not caring and don't consider themselves your partner. I am not saying this to be mean, i am just saying "have you thought of this kind of a situation"
We must always think of all the possibilities, not just the pleasant one sthat come to mind. cs

Hi CS, I just finished reading your post. I'm sure some of what you say is not without some merit. The only thing I can speak to is how I feel myself being married to a PWP. I am cranky and miserable on some days and happy and optimistic on other days. Sometimes these moods have nothing to do with Parkinson's. I think these so-called Carepartners you're talking about are not very nice people to start with. No one is perfect and relationships are tried under the best of circumstances. Perhaps these marriages/relationships should have ended long before an illness came on the scene for any myriad of reasons. It's easy to stick it out when things are going well; we might overlook each other's weaknesses and bad character traits. When life gets messy and ugly, these bad traits become much more obvious and intrusive. Suddenly we admit things about the other person that had been present all along. What was that country song back in the 60's? "I Never Promised You a Rose Garden". Well, I guess some people really mean it. They are no longer interested in the bond or pact they made with their partner, they are selfish and they want out. It isn't easy committing to someone when things are tough. It's so much easier when love is in bloom and you are young and dreamy. Then life starts to deal out the cards and you have to get real.
I can't speak for anyone but myself. The only things I can say are that I married someone and that person is sick now and needs me. I need him too. If I give up on him now, what does that say about the previous 34 years of marriage, were they a sham? I stay not just because I love Rich, but because I have to look at myself each day in the mirror and I don't want to not be able to face who I see. I stay because I have two sons who expect more from their mother than for me to walk away from their father. What message am I giving them in how to treat their relationships in their lives? It isn't just about love. Believe me, I'm not trying to be noble. I'm just trying to get through life as best I can. I'm sure there are many PWP on this forum who are in good marriages and relationships. There are many who are not as well, I'm sure. Somehow we have to carve our way through each day. I would rather be alone than in an abusive relationship, as you say. You have a lot of wisdom to share and I hope you keep writing because you are thought provoking. I hope you find some kind of peace, that's something we all need.
Thanks, Maureen

cs, you have a good point. I can see that being alone may be better in some ways.

Thanks for giving us a better understanding of your situation. I guess I was bitter after my wife left me but I didn't have time to dwell on it. I had a son who chose to stay with me to raise and kept 5 grandsons age 2-13 on and off for more than a year.

The times have been hard and things didn't always go as I would have chosen but the thrill of having a 2 year old for a year and seeing a son mature into a fine young man made it all worth while even with 10+ years of pd under my belt already at the time.

I have waited 16 years to form a relationship I want to continue. If I hadn't had DBS I probably would never have considered putting a woman through what she may go through but have regained enough of my pre pd life that I think I can make her happy. I may be kidding myself but hope and pray I'm not.

I wish you well in your battle.

Dale

I have to agree with cs about being alone. It sometimes is better. A bad marital situation can kill you. Negativity and stress, anger, are all killers and I mean that literally. I was the one who left and I left to survive. But I am grateful for my family and to my surprise, my estranged husband and I do OK as friends. We still do things as a family, so there are many possibilities.

CS i think i know how you feel having been through it.....it can be a hopeless feeling. There is life after it, and you may find that it is not as bad as you think. Don't be surprised if your symptoms improve.

best wishes,
paula

What you said about symptoms is true..Anytime anybody upsets me, my symptoms are nasty..A few months ago my girlfriend was here for a week, and it wasnt anything she did or said at all..It was just that I wanted to be alone that week because I had alot of things that I wanted to get done, and just felt like I wanted to come and go as I pleased, and not have to entertain..I felt trapped, and I was symptomatic so bad that it made me want to jump out of my skin..I spent most of that week on the couch..and like I said..it wasnt her..it was me..I can only imagine what it feels like to be in an abusive relationship

A few weeks later she came down when I wasnt stressed, and we had a good time