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Topic I'm back...at least for a minute Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2012.01.05 10:06
I'm back for at least a minute to speak my truth...

I had been a member of this forum for almost 4 years...there are a few still here from then, but many have gone to the wayside. Some because their loved one has passed on...others due to infighting....others because, well, you can can get burnt out....

You see ...even though I quit posting...I still lurked here and there....and it only reinforced why I left... In the 100+ posts since I left about 85% of those were all about the same issue.....

That is why I left.... after 4 years of repeating myself time and time again....you people just burnt me out!!!!
It was not about attention getting or attention giving...it was about the fact that while you "read" things you didn't "listen" to what was being said...and even a month later the topic is still the same ...."My PDer is sabotaging, being a child, etc. etc. etc.......for heaven's sake give it a rest.......

I know there are some new folks, I understand when new people come on they need direction...but those of you who have been here..WAKE UP!!!!

Back at the end of August, beginning of September...I did like a 10 point series on Dementia.... if you had even really read it....you wouldn't still be on the topics you are on..... there was the 36hour caregiver which gave hints on how to deal with family and all that....
I spent over $140 on Memory papers from John Hopkins, gave you all a synopsis of the studies for free to educate you all on dementia for that very reason.....TO HELP YOU... I knew it helped us.....it improved and slightly reversed his dementia...it made me understand more about the disease and how I needed to deal with it now and in the future....future....because you just never know what will come your way...

I know you need a place to vent .... to put your feelings out there.... and that is what I am doing today.... I didn't say anything too much then....because I was hurt... but here I am today saying my peace......

We don't...they don't ...NOBODY...can really say if "bad behavior" is a part of PD or not...is it a part of the drugs....how can they be on, what seems like when they want to, and be off when we want them to be on.... This disease is...UNPREDICTABLE....plain and simple...there are many folks on here who have been there and done that...LISTEN when they speak... even if it is not what you want to hear......

My friend who lost her husband to lung cancer over a year ago constantly tells me...."you think you are prepared for everything...but in reality you will not be"....so it goes and so it shall go with all of us here....we will be prepared for anything.... but in reality...we will not be simply because we are humans....However....If we have people telling us this is the way we saw it and this is the way we dealt with it...Isn't it a good idea to ponder it, to chew on it and adapt our lives to handle it?????

Caregiving is something most of us didn't choose, myself, mylove....we choose it....I could walk away this instant from putting up with this Hemorrhoid of a disease, I don't have a piece of paper tying me to my guy, but I CHOOSE to stay.....
Caregiving is all about sacrifices...to our lives, our health and our security.....it is about giving up all and I mean all...to take care of someone we truly love....we can vent...we can ponder....but do we need to rehash and rehash and rehash...

We know NOT the answers to all...but we can see that others have been there... that others have made it through....we try to encourage and help push on those new to this disease...to educate not only caregivers but the world that this is not about tremors alone....that this disease is so complicated that most of the medical community can't even give you answers....

and so I said it.....you might not hear it...but I said it.....

you all might think that LO is defending his disease, that he and other PDers are saying woe is me and put up with it... OR...you can look at them and say.... Man, I am so blessed I don't have that pain, that dementia, that dystonia, the on/off periods etc. etc. etc. Then learn from those of us who have dealt with these issues and most of all ADAPT

Anticipate
Drama
and
Proceed
Tactfully

Thank you for my "cents" worth

By Marie On 2012.01.05 10:29
Thank you KK for that wonderful post, boy o boy do I agree with you. I sure do miss your posts

By chroop67 On 2012.01.05 11:11
All the head knowledge in the world doesn't make dealing with dementia easier. I understand what is happening but is still unbelievably difficult. Whether its the disease or the person manipulation IS manipulation and it feels like !@#!!!
My Mom is here physically but the Mom who raised me is long ago gone. The 6+ phone calls a day are exhausting, her crazy talk depressing. I don't come here to find out why, I come here to cope.
Support NOT condemnation!!

By karolinakitty On 2012.01.05 11:22
And YES....Educate is part of this site and always has been as it says on the home page I copied below:

We've developed our Web site specifically for people who are current or future caregivers to patients with Parkinson's disease.

We know it is not easy to accept the diagnosis of a chronic illness that relentlessly progresses. Questions flood your mind. Do you die of Parkinson's? What is the prognosis? How long can the patient continue to work? He has changed so much over the past year or two. What took us so long to recognize that something was wrong? Will changes in behavior continue to increase? Crowding these questions are silent pleas for help. The spectre of what lies ahead seems so frightening!

Find out how to help...
We trust you'll find this site an extremely valuable source of information and references that will help you understand the nature of the disease. Just as important, we know this site will help you better understand how you can be at your most effective when providing care for your Parkinson's patient. You are just a click away from years of experience and insightful commentary on providing care for the Parkinson's disease patient.

Exploring this site, you will find that there is an extensive support network available to you; that Parkinson's is most often an extremely manageable disease; and that with each passing day, the prospect for ever more effective and long-lasting treatments becomes more certain.

Thanks again for visiting the site - and let us know what you think, so we can continuously improve our efforts in assisting you and your fellow Parkinson's caregivers!

By plcpainter On 2012.01.05 11:36
Dear Karolina Kitty --
I am a retired teacher after 30 years in the public high schools. Frustration was often my constant companion when the kids just didn't listen to all the good stuff I was teaching them! Why didn't they pay attention and learn? As the years have passed I learned... I learned that those kids WERE learning! They weren't necessarily taking the same slant that I taught them but they were listening, adapting, watching, and remembering. They have come back to tell me things like: I learned you shouldn't give up on yourself (from a watercolor unit). I learned that laughter makes things better (after a dismal clay unit when I ruined the pots in the kiln). The list goes on. What I learned from you was to research. I learned there were many more slants on this disease than what our doctors were telling us. I learned to be feistier. (Ok -- maybe that wasn't such a hard lesson! LOL!) Some of us, like my students, just take longer to assimilate the realities of PD. Don't take it personally when we ask the same questions over and over again. It's part of our journey to acceptance. In the meantime, I encourage you to continue to post. I for one have missed your posts and your input. Thanks for letting me share my 2 cents worth too! :) Warm regards from an ol' teacher lady.

By karolinakitty On 2012.01.05 11:47
Ty plcpainter.....I appreciate your honest insight and I know there are those on here who truly have learned from what I put out there as I get personal emails from a lot..

But as with just this one post...i am again condemned because I vented and said my peace ... not a rehash of what others have said... but one vent and one truth I felt you all deserved....you indeed have all been a family of sorts...and as in some families..we just don't see eye to eye at times... so be it I guess

By karolinakitty On 2012.01.05 12:20
OMG... I can't believe I fell your new name Chroop....

you sneak onto the board every so many months and cause a disruption...always starting a rukus over nothing....

your posts are still the same....you just hate ....cause discourse....get people going and stir up trouble....Is that all you have in life??????

I feel so sorry for you.........

By chroop67 On 2012.01.05 20:08
I assure you, karolina, that I am not someone from the past who has changed their name. I am new to this forum and have found some very helpful support here. Your words have been hurtful. I am here for support, period. We each walk our own path and sometimes its nice to not walk alone.

By parkinit On 2012.01.07 20:38
You can lead a horse to water, but can't make him drink. This applies to all the posts. Some we read, some we don't for one reason or another (could we be a bit busy taking care of our PWP?).

I receive encouragement, education, and a sense of "sameness" by coming to this site, but I don't expect people to be upset because I haven't read their posts.

I do find what you write highly cerebral, karolina. Highly! and highly applicable to most of us. However, I will choose to read what and when I want - just as everyone does.

By karolinakitty On 2012.01.07 22:18
Ty Marie..I missed your post earlier...if you want...I do have a facebook page you can check out..you don't have to "like" it to read it...if you put "the truth about Parkinson's Disease" in the Facebook search you can find it.....Myself and others put posts on there pretty regular..if you want to post you do have to "like" it.....

By lvmymom On 2012.01.08 19:51
Karolin, I think the difference between your venting and frustration and those of others is that you seem upset that people on this forum are not appreicating the insite shared and you find that frustrating; the others who use this forum to vent seem to rant about the frustration of caregiving. And LOH uses this forum as a means of advocating or at least giving us insite to those with the disease.

There are the same questions being asked all the time when all the poster has to do is look it up on "search" and get all kinds of wonderful advice - I see why this can be frustrating...

There are people who vent about their struggles over and over andI see why this can be frustrating too... but there in itself suggests why it is a struggle.... it is a continual stuggle for them.

But what we all have in common is the passion within us - we all have a different passion that we are frustrated with , but never the less we all have our struggles ... you, them, him, her .... me.... and we want to get that passion out. So we write -

It feels good and it makes us feel better.

That's why there is a forum. Not so much to read and listen, but to do something with our passion, with our frustration... to do something with our thoughts.

Plus we learn ... which is the best of all .... so keep on writing, keep on reading, and keep on learing ..... even if we do it over and over again.

By poppadum On 2012.01.11 00:01
Dear KKitty, so happy to hear from you again. Many a time you've been my rock and my guide because you know so much more than me about PD. Your sharing that makes my life infinitely easier because then I don't need to go looking left right and center. Our situation is hard enough as it is so I am very grateful for your "pre-chewed" info.
Hubby hardly ever tells me anything. I have to find out about his plans from everybody else and many are the times that you managed to balanced that out for me.
I was writing a new-year's letter to my friends and yet again I referred to your post from 2011.04.08 because I find it such an eye-opener, as it will be for many others. I don't have your knowledge because hubby "hides" a lot from me. I don't take it personally. It's part of his disease, but on many an occasion have you made so many thinks clear to me so I understand the underlying reasons.
What really bugged me though, is that this is supposed to be a site for carers, of which I am one. For a PDP to shoot my thoughts/opinions down in flames for what appeared to me as mainly attention seeking I felt I done wrong by as this is still a forum mainly for PD carers. If it had to be said, why not in a kind way? An opinion from the other side of the coin can be really helpful but why kidnap the whole setup just to have one's "all important" say at the cost of people whom this site is intended for? I already have more than plenty of attention seeking at home and the "attack" on this site was just the last straw.
I posted part of what kind of life I lead to try to explain that I thought I was trying to be a nice person for many of my friends/neighbours/acquaintances, not forgetting to mention my family. It was all meant to explain that I just I like to see people happy. I don't ask for anything back but a smile once in a while. Neither am I some idiot who's not capable of thinking for myself. Yet I felt treated like one.
Thanks for having turned up again. It's made my day. Hug


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