Quote:
Originally Posted by ol'cs
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
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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