when we get so bad that we can't hold it together on our own? do we just hole up in an apt., until the authorities are called to evict us? Where do they put us? a hospital would only take whatever my family of three children will get from my estate, so PS "punishes" not only us, but our families too. I need help , like so many of the "old timers" around here. Life sucks and then you die, but what kind of diseases make one suffer for decades.? Many. I beat depression, because i know that so many others have lives even worse than mine, but c'mon, i mean PD just takes and takes, and we are just sitting by watching ourselves fall apart. it is not fair that we don't get a few years of life after dx and then pass away quietly in the night. I hate going to bed and i hate waking up, and i hate this damn disease, and i am not a hateful person. If i didn't have kids i would drink drano if that's all i had to off myself. I am bereft of emotion anymore, sick of being sick , and angry at my creator for the lengthy suffering that this disease "forces" upon us. We don't need another 100 million that just gets "wasted" on "research" by people whose power to help us is zip; what we need is a centralized "hospital to go to die. cs

had a friend who did, and lived and is now on dialysis...

CS, I hear you, and understand. I have these questions too. I agree that some of those millions ought to go into facilities that help us have some kind of quality of life - all that money going to things that only have an outside chance of helping us all, some of it could be diverted.

The losses we have accumulate, and it can seem like a mountain of loss, with little left of the self we once thought we were. But actually we are still there, and the losses moment by moment do not affect us all at once. We have to remember to stay in the moment, and not to dwell too much on the future.

It sounds so much as though you are lonely with this, it is no picnic dealing with it as a single person. While you say that you have dealt with depression it sounds familiar to me, your message comes over as on of lack of hope and lack of pleasure in life, which is something I had wanted to bring as a question to this forum, as I am increasingly not able to find joy in things, or pleasure, everything seems very functional, or dysfunctional, depending on what I am doing. This kind of very flat effect is a sign of depression, so perhaps this is a way that you can actually do something about you quality of life, seek some kind of help for how you feel. A good neuropsychologist would be a help. This is something we should all have access to, if it is available for you take advantage of it, if it isn't try and make a noise about it so that it might happen, who knows even getting your head round making a noise and securing something that others might benefit from might help how you are feeling, as it is a positive step.

Over the years your voice has shed a lot of light for me, and now your honesty about how you feel, though distressing in many ways, does open up this very difficult subject.

Please try and find hope within yourself, and be sure to try and find the help you need, you do not have to carry all of this on your own.

Lindy

I'm so damn sick and tired of living life in 1 1/2 hr increments until I take another pill. Tired of being stiff and going to bed with back spasms, etc after I've been trying to get stuff done and haven't accomplished a darn thing all day but I'm sure as heck worn out from all of it. My friends think I've got it made, do nothing and collect SS, yeah right! I'm so sick of all my family too, they watch me struggling to do something but never once offer...the other night I was off, trying to walk to the dresser to get a pair of shorts when my wife says why don't you ask me? Well, by the time she gets up and goes over there I can get them myself. This is an all day thing since she can't go anywhere-agoraphobia, I have to shop,cook, pay the bills, do errands, ALL of it and then she has the nerve to complain if something around the house doesn;t get done!

To alleviate the symptoms of PD. All that happened was slow loss of everything i worked for and believed in. This disease is like entering the event horizen of a black hole, then, one day you, mercifully dissappear.

I try to take it a day at a time, cuz when I look ahead, all I see is darkness

hey cs,
i don't know if you remember me from the old parky forum days (the early days of dr.john lester's experiments, i came onto the forums early jan of 99)

at any rate, i was dx with pd on july 22, 1991. i was 26, my kids were 6 and 8 years old. i've been through all the dope, sinemt cr, sinemet, mirapex, comtan, parlodel, the flu capsules that make you swell, accck so much dope in so little time.

i was retired at 36, maxing out all doses of sinemet, mirapex and comtan. it took me a year or so to titrate down from mirapex. then go on requip.

i'm 46, my kids are married and have kids of their own.

at 20 years with pd, i've out lived 3 of my doctors.a neuro surgeon, neuro movement disorder specialist and a neuro.

i'm the granny with tats, harley, i haven't rode in a few years because my balance is so bad that i trip over lint.

some say i have a bit of attitude, i dunno, i don't think there's a dam thing wrong with my attitude.

my mind is slowing down all of the cognizant processes, catching up with my body.

i have good days and bad. i definitely ain't no f-ing polyanna.

i've lived a very grand life, i'm not done, i'm greedy, i want more of a better life. yet, have no regrets, no coulda, shouldas, wouldas. on my own terms.

i don't need or want a hospital to go to die. i don't want or need to be told how to live and i'm certainly not going to be told how, when, or where i will die. i'd rather be out back drinking coffee, smoking and watching deer.

i want my kids to know and remember how i lived well and better than the hand i was dealt. bfd, well, life it ain't fair, there are no medals, no recognition, no pats on the back and no one to say "you did good".

you just do the best you can with what you have as long as you are able to.

depression has a way of stealing, cheating you out of your life. it's more insidious than pd because it discolors your view of the world. your mind can no longer tell what are depression symptoms

how can or do you tell between pd, the long term use/effects or anti-pd drugs, depression or the interaction of all of the above?

dunno if this helps or not, i'm not trying to say my pd is worse than yours or that my suffering is worse than yours, far from it. i'm trying to offer my perspective, since it's all i have to offer. to connect with you and let you know that you are not alone. we are in this together.

enjoy all the little nuances of life, how nice sheets feel good, the smile of a child, dew on grass, fresh scent of coffee, leather and peanut butter
take care
tammy

Remember the saying, "This too will pass," which used to buck us up when we were non-PD people suffering from a cold, an argument, a disappointment. Well, that saying is useless with PD. It will not pass. Toadie is right. She can't rid herself of PD or conquer it, but she can still sit out back, have a beer, and look at the deer.

CS - Find something you enjoy - a food, a drink, a TV show, the movie "Hangover" (a guy flick, very funny), a baseball team (but not the Yankees), and include it in your life - something you can look forward to. You will still have PD but you will also still have a focus on something PD cannot take away.

I worry about you, because you are one of the most intelligent people on the forum, but you have trouble finding enjoyment, spare though it may be, in your life. You can give up on Parkinson's but not on things you enjoy.

Ann

I hear you. Lou Lou is also a friend of mine who is going though alot. I feel what you do. You do find out who your friends are in crisis, and yes of course it effects your family. I have this little paragraph that I read now and then..."no one will demean or in any way violate the sanctity of another creature. Every barrier that prevents or limits intamacy between us will be removed for all eternity. We will be healed of all brokenness and distortions."
What we can do, is reach out to each other a bit more when things get to tuff to handle alone. I will be thinking of good people right here that need each other. Please write back, write to lou lou too. Think of that little paragraph.
I am disabled too, but I still work on mosaics to keep my mind from all the things around me that cause me to cry. If there is something you can engage in that helps take your mind away from the pain, even a placebo, try to do it. Talk yourself into a better place even if it is just a minute or two. ginnie

I really feel and fear for my fellow PLWPs living south of the border. Rick instead of saying "to hell with them", how about "Parkinson's on them". Of course, they don't need to worry........they have good healthcare.