I have read every single one of your posts to this thread, and it occurred to me how much of a "therapy session"this must have been for most...if not all of you. Here was the opportunity to "open up your hearts and souls"...to bear your inner feelings/thoughts in a way that you've so needed to do. It has been the impetus that allowed and encouraged you to share so many feelings that you may otherwise have continued to keep buried within...and it is my hope that having been able to unburden yourselves, you have found at least a degree of peace for having done so. I believe that just the fact that you felt that you were able to "say it as it is" for you as you make this PD journey has to have been cathartic, even if just temporarily. I would like to remind you...as I have many times...that I do not have PD...but, I am the carepartner of one who DOES have PD...and it is here that I am able to find what most helps me...yes...the more technical data...but, most importantly, the mental and emotional support that any good carepartner needs...and let me just say...I cannot even fathom how it is that one would not persist in a loving, committed relationship simply because the partner has PD. Perhaps at no other time in the relationship do these two elements become so important...to know that the one you love and who loves you will always be at your side...in good times and in bad. Again...I am in awe of all of you...

Therese

When I returned home from the hospital yesterday I said to myself I am not going to post again and here I am doing so. I don't feel good and probably won't ever again save for a day or two but when I red this posting and the responses I couldn't not say anything. not like me eh lol

There is no past that has any bearing on today. What was and is no more is gone and won't return. Forget about it.

Remembering and bemoaning it will only spoil today and that lis really all we have. Tomorrow is not here and who knows what good or evil it will bring. The one thing is that you can not change tomorow today. We would like to think we influence it but do we really?

I do know for sure though that worrying about other people and 'things' is not the way to go.

Life has a way of going on whether we are here or not and while we would like to think our health or death even would influence the future is ego and nothing more.

Some will say this is cynicism and some will say right on but the fact remains that the life you have now is temporary and why not make the best of it.

I thought when my Grandson died so tragically that the influence on his daughter would be tremendous and on his nutso wife, well i thought she would go bonkers. But it didn't happen. Life went and goes on. The only change is he is gone and the going is getting fainter and fainter as time goes on.

I hope this is the way it will be for me. I think the one thing I did for my kiids is leave their father with no notice and no fights and arguements that they would have to remember.

No matter what the cause or condition of parting it is always the children who have to endure the pain of the seperation but this can be helped by getting out of the money trap and letting the possessions go as well.

They are the junk we pick as valued and they can be easily replaced.

Divorce can be a good thing and death can be an event that can last forever, lol lol lol

Which one would you prefer.

Live long and prosper just don't try procreating as it is too stressfull lol lol lol

Relax and enjoy the life you have as that is your reality.

As our friend Mike Fox said once in an interview, "when you have one foot in the past and one in the future, you are pissing on today."

But life changing situations are traumatic, and you need support. Without it who knows what may happen.

Many times when I went to Washington for a Pan Forum, I would visit one or two high school friends that live in Alexandria Virginia. I've known both for many years but one, Marilyn, I've known since 3rd grade. Marilyn was little and cute, at age 57 still sounds like a little girl because she has a little girl voice. Everyone likes her, called her Peanuts, but she had many stressful events in her life that don't happen to everyone. And she was a teacher......need I say more about stress? She is the second longest known friend I have in life, meaning we still keep in touch.

As I became stranger and stranger, she ignored it and stuck with me, listening to all my stories.

Here are some of the uncommon things she went thru:

In high school, we got into a craze about going to cemeteries, "haunted places", and just scaring the crap out of ourselves. One night Marilyn and Debbie, the other close friend since high school, went to a "haunted location" that was private property. The owner fired buckshot at the cars of teenagers and Marilyn was blinded in one eye for life. Debbie got shot in the ribs. They were the only two hit.

Marilyn rolled her car multiple times in a snowy accident.

In college, having learned to drink, a group was tossing her up and catching her on a couch. She missed coming down and broke her hip.

She became anorexic before I ever knew what it was.....that was the first I learned about anorexia back in the 70's. She finally recovered.

She got married and her son had leukemia as a very young child. Years of nightmare and treatments - he recovered.

I had dinner with Marilyn and Debbie in DC at the PAN Forum this year.

On June 13, Marilyn died of lymphoma. I don't know the facts, just found out today (I'm in PA at my sisters and another high school friend told me).
It happened quickly, by the time she was diagnosed they couldn't save her. Why Debbie hasn't located me and told me is puzzling. We don't correspond as Marilyn and I did, but it disturbs me.

My point, other than tellling a sad story, is that stress is a killer. I know that genes play a part and toxins and - well everything - but I have come to believe that stress is possibly at the top.

Marilyn was a riot, didn't complain, we experimented many things together back in college days, and remained friends to the end. But we lived far apart and I didn't really know her husband or son that well. SO today I just am hearing this extremely sad news. She was 57.

Being alone is not the ideal situation, but as individuals, I can't recommend enough to eliminate the stress from your lives as much as possible. I will always believe that Marilyn, who was sweet, funny, and oh so fun to be around, was stressed to the point where her body just gave out.

Hell, teaching alone can do it to you.

I am still letting it sink in and getting sadder by the minute. But , I can unload it here, not because I "have no life" or anyone else to talk to about it - but rather because I choose to.

The tears are coming now, family activities over for the day, I can unlock the box I tucked her away in for the day to get through another day with relatives and cry my heart out.

I have lost one of the people who stuck with me - strange and all.

thanks for reading,
paula

Reading through the post my one thought is, if I didn't haaave pd would I be openig up on the web to a bunch of people I have never met? Most likely, not. This disease has helped me re-examine my life. Chasmo you are right...I usually tell people I am doing well, or great...loved ones don't want to see us suffer. And I figure if its a day I could tie my shoes and get out the door fairly on time, I'm doing well.
It does seem someimtes as if I come down hard on my spouse. It's stupid to do that, and I try more to treat it humorously. He loves me and shows me every day how much...he has a life too, and hard days, and things going on which cause him to re-examine his own life. My heart goes out to those who have lost spouses because of this disease-either patient or care giver-it is hard either way.
Take care

as a pwp dxed less than a year, i gotta tell y'all, this is one scarey thread. i mean, there is hope of several flavors but...

i am very thankful for this thread, it is like gold(the whole form is) finally i hear truth. you know; "well doc, whats my prognosis? well, the doc says, i cant realy say, everybody is different... " . ok . from determined reading in ooks and on the internet i started getting an idea about what would happen and maybe the general timetable, also how i might be able to affect the what and when of my pd. the sharing i find in this thread and in this forum lets me know where i stand and that i'm not alone.

this past week i had a bad cold, first one in a long time, and i see now what people here mean when they say pd while sick is synergysticly bad. my symptoms have been the worst yet. i dont know if it was this thread or just the accumulation of my past year worth of investigation, or just being sick but i feel understanding about pd now.

im not the best writer but the stuff i read on this forum is more valuale than gold, i know i couldnt buy it, and i appreciate you .

Regarding the following, some items are to the specific people. Others are meant generally.

Paula -I am sorry about your friend, but I am happy you had her as a friend. From what you say, she added greatly to your life. My mother once told me that if at the end of your life you have had two good friends, you are a lucky person.

Regarding the past and putting it behind you, that for me would be like erasing who I am.

If stress is a killer, than I am doomed. I went to college at night four and five nights a week from 7 to 10 after working a full day as a secretary of a railroad company where I filed the papers of employes who died. I suppose they had to because of Railroad Retirement. I was then transferred to a job where I typed up papers of passengers who were killed on or near or by a train. It was a boring and depressing job where most of my fellow employes seemed to be over 80 - at least to my young eyes.

I then graduated and taught in public schools in an urban setting for 35 years.

I had breast cancer at 39. Not exactly a relaxing concept but it never came back - at least not yet.

I write, and mostly it is too much about sad things in my life, but that is how I cope. I try to make my writing honest, but sometimes, as the song says, the honesty is too much. Other things I speak and write nothing about. They are for me alone. Finally, I write about Parkinson's here because I can.

I have had good things - two kids, and a marriage to a good man who is helpful and caring toward me, and it would scare me to think I became such a burden that he would leave. It will soon be 42 years. Sometimes I almost want to apologize to my family for my predicament because I know it would be better for them if I were healthy. While it is not my fault, it is also not theirs.

To CS - I think your biggest battle is not Parkinson's. I kind of remember you are young, an early onset. You may be enjoying a cure for many years of your life. You need to live either in blissful solitude or with people who really love you. You deserve that.

Thank you all for your posts. They reached my heart.

Ann

Thanks to all who posted here. I have been a lurker, perhaps a bit thin skinned and afraid to post, based on past experiences, but I feel compelled to applaud you all for your courage and for telling it like it is for you. Each of you writes from your heart about your own personal truths.

I have friends with PD who are alone (one whose husband left soon after she was diagnosed), some who are in good marriages and some who are in marriages that are not that great. I know carepartners who are truly caring and truly partners and who have been through hell every bit as much as the person with PD. And I know "carepartners" who are actually abusive. I know couples where both people have PD.

Personally, my first marriage lasted 29 years and I was more lonely during that time than I ever was after the divorce. Now I am one of the lucky ones that cs describes, married to a supportive man and with PD that is slow moving, although I have had to work hard to keep it moving slowly.

I like Thelma's point of view best. Today is all we have. Whatever the situation we are in right now, that is where we are. We can't change the past or predict the future. If I start thinking about the past, it is like a whirlpool that sucks me in--and down. If I start worrying about the future, I become paralyzed by fear and "what-if's."

The Serenity Prayer comes to mind: "God, give us grace to accept with serenity the things that cannot be changed, courage to change the things that should be changed, and the wisdom to distinguish the one from the other." ~Reinhold Niebuhr

Thanks for letting me talk, Judith

Welcome, Judith...I related to the term "lurker" in your post. I, too, use to "lurk" until...as with you...I felt compelled to speak to the people here about their great strength and courage. I do not have PD...I am the carepartner to one who has this disease...and I can tell you that it is the right and best place to be...for both pwp's and their caregivers...but, then, I would guess that you already know that. Just from reading your post, it seemed that you felt comfortable...that you felt that you were able to speak from your heart...and that you will continue to post here. Again...welcome, Judith...

Therese

I am a carepartner to my husband who has PD--diagnosed in 02. I see daily his pain and frustration at who he has become and at his future. It is my future, too. Cut us carepartners a little slack. Sometimes we are cranky and impatient, as are you. The most frustrating thing for me is to be doing something and be expected drop everything to give a helping hand, when I don't see how a few minutes wait on his part would hurt much. I read everything I can about PD, and do whatever it takes to make things smoother, but I am not perfect by a long ways. Having PD did not all of a sudden make you the person you are now, and your diagnosis did not make us carepartners the people we are now. That took a lifetime, and sometimes we just have to swallow hard and plug on the best we can. And don't pine too much for what can never be because you will lose sight of what wonderful things that can be.

trfan

Something is drawing me back into the PD fold this week. Emails and phone conversations with old friends, including one with Paula this morning. We talked a bit about this forum; I said I had not logged on for months. So here I am this evening reading a classic AnnT thread, and of course, finding it that it resonates thoroughly.

I’m on my ninth year with Parkinson’s; at least 15-18 with PD-related depression. I fight them equally, and they both fight back; for a long time it has seemed they are winning. Diagnosed at the age of 41, I began the decade with confidence – a cure seemed just around the corner. But as the years wore on, my confidence wore thin, and I became not only a stranger to myself, but estranged from the world around me.

In many ways, though PD-politically active, I sleepwalked through my forties. The most ordinary things became oddly forbidden; I’d walk through malls with my daughter, shopping for her but finding the thought of buying clothes for myself to be an absurd idea – why do the dead need new clothes? Even the weather forecast seemed to be for everyone else. Who cares if it rains or shines if I have no place to go?

I thought of what it would mean to end my life, thoughts that never got beyond the point of remembering the love I have for my daughter. But I wondered what would happen when she was grown up and gone.

2007 arrived, and I looked at the calendar ahead. High school graduation in June; off to college in September. That was it. What about me? Only that looming December birthday. 50 years old. I started looking at myself. I mean, really looking at myself. There was no cure, but I was not dead. In fact, I was feeling pretty good. So now what? Graduation came and went; Elizabeth left early to take a summer job before school starts in the fall. I am alone. But, I am not alone.

Elizabeth is an hour car drive away, our movie dates intact; my ex-husband loans me his truck and we go to lunch to talk just long enough for me to remember why I divorced him in the first place, and I get to go home to my dog, cat, and cozy condo. My parents are still young at 72 and 73; they and my sister and her family only a phone call away. Healthy old friends, busy with their jobs and seemingly more significant lives, are only too happy to stop and chat, once reminded I am still here, while other friends are suffering from their own illnesses and job and family woes, and find me to have a sympathetic ear.

Maybe I can make plans. For myself. Maybe I can buy new clothes – and maybe I can, and should, drop some weight and become fit because those new clothes would look better and, any way, my neurologist keeps telling me I’d feel even better if I’d exercise (it is neuro-protective, you know, but up till now I kept telling myself, why does it matter if I’m already dead?).

But I’m not dead. I’m very much alive. And for some reason, I’m ready to live again. It’s kind of scary, because I know the despair, I know how close it is, and I know I’m not immune. But in the meantime, I’m tempting fate and taking a chance on myself, finding the stranger to be familiar and ready to walk in the world again. If my plans pan out, you’ll find me riding a bike from Seattle to Portland next July, and on the back of a horse on a Wyoming cattle ranch next fall. There’s still time to make some dreams come true. I hope the weather is good.