[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

[lou_lou]

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

[lindylanka]

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

[Jim091866]

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!

[ol'cs]

Originally Posted by Jim0918

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.

[stevem53]

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

[Conductor71]

Originally Posted by stevem53

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

I am no Pollyanna; I loathe platitudes, and I certainly do not want to make light of anyone's suffering, so forgive me if my post seems any of those things. Do not let this disease consume your soul. I guess what helps me when things look particularly bleak is I allow myself only a few moments of wallowing. I have an internal egg timer and I don't dwell on the what ifs, or why is this happening, I go to that dark, murky place for a few; may have a good cry then it is done. We are tethered to pills for the time being, so why spend most of my time focusing on all the deficits in my life; why waste so much of that precious on time we have in such a dark place.

I know that haven't lived with this as long and maybe I sound naive or dismissive - don't mean to do that. Living with this disease seriously sucks; however, I try to keep it in perspective. We are not alone in our suffering.

Recently over the summer, I suddenly started having a pretty potent panic attack-freezing even combo. Literally, in the course of one day, I was walking my son at the park and the next I was scooting around on the floor for two hours because I did not have the muscle strength in my arms or legs to even crawl. Does this sound like PD to anyone? No I didn't think so. Rick has had very similar experiences.

This started last June; I realized that much of it was brought on by fear. For nearly the next nine months, I would not take my son alone with me anywhere for fear of freezing and not being able to keep him safe. Yesterday was different. I stood up to the disease. I took my son on an errand and then we made a special trip to the toy store so he could choose a birthday gift. This is a non-event for most people, but for me was a triumph because we went alone. I have been in cognitive behavioral therapy for months now working on this. I finally said that I was not going to let fear rule my life, and I sense that is what PD does to many of us. As we focus on our motor symptoms progressing, it slowly takes over our psyche and we don't even know it is happening. Well, I have caught on, and I won't let it also turn me into a reclusive, shell of my former self to top it off. That is where we do still have a modicum of control. How we react to this disease is up to us, and it ends up shaping our reality. It is normal to have our dark hours, but don't get sucked in.

I find that one thing that really helps me is to at least once a day recall one thing that has made me smile. Yesterday, for me it was watching my son try to capture the sunlight streaming through the window in his hand. That's what living with this disease is like for me; it may all be futile but it is what keeps me going. Ol'cs and Jim,there is still a lot in life to enjoy, please do not hand over the simple pleasures and joy we can still feel to this disease. Yes, it might require some clinical or pharmaceutical intervention at first, but if you try the therapy you'll not get sucked into that black hole. Fight it.

Laura

[lou_lou]

? I would love to see a place for us all - 50,000 dxd cases a year of PD
but noone understands it - at least in my town - big fish in a little pond
we need a parkinson's retirement / assisted living places...
but that is a little too late for some.

end of life rights? it is okay to end your life if you do not want to take anymore - chemotherapy for cancer
their is a huge list -
if we went off our meds completely we would die/ oe become very very ill and weak, that is very much what happened to me, I am undermedicated, and I am sorry many of us have been ignored by family -sister /brotthers
or have become peopletrash, thrown away because the loved one we married hates to watch our patheticness sp?
----
their is a breaking point

[reverett123]

This is one of the greater dangers of the disease - the despair that makes you give up and collapse from an exhausted spirit. "I will fight no more forever."

I intend to keep going so long as there is one herb untried. But I know that I have to watch for that despair. It is at its worst when we are alone and it drives people away from us, feeding itself.

Laura has her boy to light her world. I have my quioxtic drive to understand and master this foe. Others have the sunrise.

We have to respect the right of others to give up when all else fails. But we don't have to join them. I will continue on and enjoy the journey as I can.

Originally Posted by Conductor71

I am no Pollyanna; I loathe platitudes, and I certainly do not want to make light of anyone's suffering, so forgive me if my post seems any of those things. Do not let this disease consume your soul. I guess what helps me when things look particularly bleak is I allow myself only a few moments of wallowing. I have an internal egg timer and I don't dwell on the what ifs, or why is this happening, I go to that dark, murky place for a few; may have a good cry then it is done. We are tethered to pills for the time being, so why spend most of my time focusing on all the deficits in my life; why waste so much of that precious on time we have in such a dark place.

I know that haven't lived with this as long and maybe I sound naive or dismissive - don't mean to do that. Living with this disease seriously sucks; however, I try to keep it in perspective. We are not alone in our suffering.

Recently over the summer, I suddenly started having a pretty potent panic attack-freezing even combo. Literally, in the course of one day, I was walking my son at the park and the next I was scooting around on the floor for two hours because I did not have the muscle strength in my arms or legs to even crawl. Does this sound like PD to anyone? No I didn't think so. Rick has had very similar experiences.

This started last June; I realized that much of it was brought on by fear. For nearly the next nine months, I would not take my son alone with me anywhere for fear of freezing and not being able to keep him safe. Yesterday was different. I stood up to the disease. I took my son on an errand and then we made a special trip to the toy store so he could choose a birthday gift. This is a non-event for most people, but for me was a triumph because we went alone. I have been in cognitive behavioral therapy for months now working on this. I finally said that I was not going to let fear rule my life, and I sense that is what PD does to many of us. As we focus on our motor symptoms progressing, it slowly takes over our psyche and we don't even know it is happening. Well, I have caught on, and I won't let it also turn me into a reclusive, shell of my former self to top it off. That is where we do still have a modicum of control. How we react to this disease is up to us, and it ends up shaping our reality. It is normal to have our dark hours, but don't get sucked in.

I find that one thing that really helps me is to at least once a day recall one thing that has made me smile. Yesterday, for me it was watching my son try to capture the sunlight streaming through the window in his hand. That's what living with this disease is like for me; it may all be futile but it is what keeps me going. Ol'cs and Jim,there is still a lot in life to enjoy, please do not hand over the simple pleasures and joy we can still feel to this disease. Yes, it might require some clinical or pharmaceutical intervention at first, but if you try the therapy you'll not get sucked into that black hole. Fight it.

Laura

[EmptyNest68]

cs-I reread your post a couple of times and you are on to something with your comment of "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."
Your pain is evident in your writing and for that, I am sorry. There are a lot of people alone with this illness, and a lot of people who are with someone, but as good as being alone. If there was a comfortable place for parkinson's patients specifically, what a blessing that would be.
I am married. My husband while he does love me, has done nothing to find out about this illness. I am afraid that when it comes time for me to quit work, quit housekeeping, slow down even more, his understanding will be hard to come by. I frequently think that I would be better off on my own; it's stressful to keep a relationship going, and any added stress right now makes me worse. On top of that, he's got two grown girls and 5 grand children who take precedence over my two children and grandchild. More cause for conflict. He's a great provider and a homebody; but he doesn't take weakness and illness well. I forsee a struggle in the coming years. And it won't be fair to him, either. Clinging to our vows "til death do us part" is important, but in all reality, will this work?
My ideal place would be anywhere along the east coast, which is the one place I have felt completely at peace, home and comfortable.