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By Pearly4 On 2009.12.27 20:20
This is my final post -- I want to thank everyone who has provided me with words of encouragement and assistance, kind words and prayers, solace and help during my journey as a Parkinson's caregiver but with my mother's passing last June, I find myself in a position of needing to rebuild my life and travel a different path now, and to do that, I believe it best that I leave you all.

Having said that, I also would like suggest to everyone that you tread lightly in the days ahead. The board seems intent lately on dividing -- first with political opinions taking over until moved aside, and now with those who suffer the disease itself seeking a life of their own, taking the board in a different direction than what I believed was originally intended.

Caregiving is so draining, so all-consuming, that total, non-judgemental life-sustaining support is necessary -- it was what I felt I was given, and what was given to others until recently.

Those of you who seek to live life to its fullest despite your disagnosis are to be commended -- more power to you and I hope you suceed in your efforts to gain a quality of life that you deserve. But don't blame - don't shame - don't belittle those who are making a desperate grab for a lifeline!

It seems lately the caregivers might feel like they're riding the Titanic as it sinks, and being thrown a Hawaiian lei instead of a life jacket!

By anidaholady On 2009.12.27 21:21
I understand your need to take your life in a different direction. You need rest and respite, and grieving and healing I'm sure. Please don't think you have to say a permanent adieu. If you check in again sometime down the road many of us will still be looking for comfort and advice where you can help by telling us your experiences and suggestions. Best wishes to you!

By Reflection On 2009.12.27 23:24
Pearly4, thank you for your grace, compassion, and wisdom. I hope you find fulfillment and happiness on your new path.

By Emma On 2009.12.28 05:44
Pearly4, I will miss you. Thank you for being there and being a a great support and advocate for us. Your words and advice have been much appreciated. I will think of you and wish you the best as you move forward with your life. Emma

By annwood On 2009.12.28 10:55
I will also miss you terribly. I feel as if I am losing a friend. Always remember that you were a very good caregiver and that you sacrified years of your life for you mom. In my belief system you will be rewarded. I wish you every happiness and much peace.

By Mary On 2009.12.28 14:12
Pearly4, I also will miss you terribly. Your advice and support during my care and loss of Dad has been immeasurable. You have become a friend of mine, a person I care for and respect. I wish you the very, very best! Hugs and blessings, Mary

By lurkingforacure On 2009.12.28 15:08
We will all miss you pearly4 and I too wish you happiness and peace on the next chapter in your life. Thank you for all the wisdom and compassion you have shown on all of us here.

By sooboo On 2009.12.29 23:54
I too have taken a break from the forum for my own reasons, but I have it bookmarked and I check back in periodically. Ya'll have been a part of my life for too long to say a permanent goodbye. But, we are each on our own paths and I respect yours. You will be missed.

By dkleinert On 2010.01.01 23:10
I guess I have missed a lot being gone since Dec. 6th. What has happened to posts? I am confused by this statement I just read on a thread:

"Having said that, I also would like suggest to everyone that you tread lightly in the days ahead. The board seems intent lately on dividing -- first with political opinions taking over until moved aside, and now with those who suffer the disease itself seeking a life of their own, taking the board in a different direction than what I believed was originally intended."

Has something been happening? Too many posts to read thru to understand. Has something changed here? Thanks for any clarification.

By annwood On 2010.01.02 00:42
Welcome back! I think the stress of the Holidays got to many of us. There are actually four groups contributing to this forum:

Those who have PD
Those who are in the early stages of caregiving
Those who are dealing with later stages of caregiving
Those who have already lost someone to the disease

I believe that all have something to contribute to this board but I believe it should first serve those caregivers who are stressed to the max with caring for someone who has far advanced disease. Those caregivers who are no longer able to call their life their own.

I just remember that when I sought help from here it was when I felt I could no longer handle things on my own. Friends had deserted us, my husband had dementia, I had no help, the physicians were of no help, etc. This forum was a life saver to me - I truly mean that. Before things got that bad we had enough information and my husband was still functional. I didn't feel as if I needed help.

We sometimes become divided because some do not want to hear how bad it is going to get and those who are in the thick of things don't want to be put down because we are so negative.

The problems arise when we all forget basic respect for one another. If a post doesn't interest me or if I feel I have nothing to contribute I just ignore it. I believe that we are all trying to do our best and we share something that few understand. I have been here long enough to see the flair ups and to also see them resolved.

I hope that we all have a good year!

By Pearly4 On 2010.01.02 07:33
Ok -- maybe that was my second to last post!

Just to clarify a little - I've spent some time working in the psychiatric field. I've seen people who have reached the bottom being told to "let a smile be your umbrella, turn that frown upside down" and similar type thoughts. And I've seen the damage it did. Don't mean to diminish anyone's desire to live with hope, and if you want to turn that frown upside down, and it works for you, go right ahead! I have no desire to pull you back down.

What I was trying to say was at least acknowledge the other's desperation, don't diminish it, or demean -- we all have our styles of living and we all have our lifelines. If this site is someone's last attempt to grab hold of a lifeline, don't rip it away!

As Annwood said - respect each other.

Sorry - not trying to prolong things -- just wanted to check my last thread.

By LOHENGR1N On 2010.01.02 08:59
This is all well and good and true, however if someone has stumbled across something that picked them up and made if only for a brief time life a little less burdensome and want to share it hoping to brighten part of someone's day. We shouldn't jump in trying to stomp out any light one can find in this darkness of Parkinson's Disease.

As Ann said treat each other with respect.

We shouldn't attack anyone Who with good intents and purpose tries to lighten the load and make the struggle easier on others. We shouldn't say this is a caregiver forum read the top of the page, then, say between the lines get out you don't belong here. Believe me I know the frustration and resentment you all feel over this disease. I wasn't going to post to this thread however some things needed to be said in response to it. There are and should be two sides here on the forum......US against Parkinson's Disease! That should be it! I'm sorry if this post offends. I'm sorry if you think I'm sticking my nose in where it doesn't belong. Many have gained insight and benefited from some of my posts. For that I'm not sorry nor am I sorry for being here to help. Peace.

By dkleinert On 2010.01.05 00:55
Thanks for the clarification. I thought something big had changed while I was away.

For me, I could not go thru caring for my husband with PD WITHOUT this site. I was so alone and frightened before I found all of you. YOU are my lifeline thru this disease. You know how a rope is strung down a cliff so everyone can hold on so no one can fall off - belaying it is called. Well, you are my belay rope.

I think what makes this site GREAT is that there are people from all stages of PD here. So much to offer and give to each other. I count ALL of you as huge blessings in my life. So, yes, we are all different, and as different as PD is, so are our experiences. It is so comforting to know I can come here and read and write and that no one judges me. I can't go anywhere else where that is the case.

I love all of you. You have the most giving, vulnerable and honest hearts.
We all have different needs at different times - sometimes different minutes throughout an hour our needs and experiences change. Just reading here helps me so much. Gives me courage to go on. Helps me not feel like an outsider and alone.

Pearly4 we will miss you. Heal and live - that is your destiny now!

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