what happens?

toadie · 03-29-2011, 12:55 PM

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

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

AnnT2 · 03-29-2011, 02:16 PM

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

stevem53 · 03-30-2011, 12:01 AM

Quote:

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

I go from one extreme to another..One day Im waging war on pd, and the next day Im asking myself what Im fighting for?

It wasnt like that a year and a half ago..I wasnt dyskinetic, freezing, having off periods, nor getting so uncomfortable that I wanted to jump out of my skin, insomnia, etc

The game changed quickly all of a sudden..But I keep fighting and thinking outside the box, cuz I believe there are simple solutions out there to getting relief from some symptoms

No matter what Im feeling on any given day, I know I cant change pd, I have to change my attitude towards it

Thank You for your thoughts

Floridagal · 04-05-2011, 07:41 AM

Good morning. what a life we live, ain't it? lately in mine, I vacillate between waging war against PD and trying to make "peace" with it. There is a fine line between acceptance and giving up (to me, anyway) Can't get my mind around it. On the worst day, draino sounds like a great solution. Boy can i relate. I get desperate, agitated, and carry on arguments, mostly,(but not always) with myself. I get so frightened when i have "weird" symptoms, that seem to not fall into the PD spectrum. things are going well, i'm on, and there is just the slightest change. maybe i have a worry that comes to mind, or an argument, or alot of things to do, it could be anything. i am then reduced to total disability, and find myself totally off. not on schedule, not what "should" be happening. It happens about every day. I start thinking nursing home thoughts. It is truly torture. I keep telling myself that I "have to learn better COPING skills", but honestly, enough is enough. thanks, FG

Atma Namaste · 04-05-2011, 10:01 AM

Quote:

Originally Posted by 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.

At least we get to experience daily miraculous recoveries!

stevem53 · 04-05-2011, 10:06 AM

I have realized that I have to stop thinking about what I am going to be like a year from now..5 years from now..etc..I am finally starting to get it through my thick head that it is what it is, and the more space I allow it to rent in my head, the worse my symptoms are going to be

I was doing ok when I got done fishing last December..Then around Xmas we had a snow storm every week for 5 weeks in a row..The weather has been crappy, and has been windy and raining the past two days..So I went from functioning reasonably, to not being able to get out of my own way, and holding on to the furniture and the walls to get around the house, and not wanting to do anything but lay on the couch and sleep all day

I know pd doesn't progress that fast, and that every spring when I get ready to go fishing, as futile as it looks, like I am not going to be able to do it, somehow I manage to get through another season, and last year, I had the best season Ive had since I started fishing part time in 2006

I think I need an attitude adjustment, more than I need a medication adjustment

toadie · 04-05-2011, 12:54 PM

Quote:

Originally Posted by stevem53

I have realized that I have to stop thinking about what I am going to be like a year from now..5 years from now..etc..I am finally starting to get it through my thick head that it is what it is, and the more space I allow it to rent in my head, the worse my symptoms are going to be

I was doing ok when I got done fishing last December..Then around Xmas we had a snow storm every week for 5 weeks in a row..The weather has been crappy, and has been windy and raining the past two days..So I went from functioning reasonably, to not being able to get out of my own way, and holding on to the furniture and the walls to get around the house, and not wanting to do anything but lay on the couch and sleep all day

I know pd doesn't progress that fast, and that every spring when I get ready to go fishing, as futile as it looks, like I am not going to be able to do it, somehow I manage to get through another season, and last year, I had the best season Ive had since I started fishing part time in 2006

I think I need an attitude adjustment, more than I need a medication adjustment

for some people hope is a cruel

hope is cruel in the waiting...

hope for a cure, hope to get, be and feel better, hope to regain our lives.

i don't idle, hope for me. i hope for my kids. that my kids remember, see and feel me busy with living, full of love, laughter and hope for a better tomorrow.

you don't need an attitude adjustment, you are golden as you are.

mayhap, we all need to have some grit about us to survive life in general. when you have pd, you have to have enough grit to make it through the really crappy days and see that tomorrow is a brand new day "full of possibility" a chance for a "do over"

the "do over" may be a few days or weeks in coming but that ahhhh that one good day.

my world is spent almost exclusively among "regular people", when i am relatively ok, i tend to do more and make regular people ashamed of their idle complaints or of being just plain lazy. if i wake them to a new or better level of functioning or living, it is worth it, i've had a good day.

life doesn't always go the way you think it should, you can have a very good life regardless of the hand you're given. there is a good life after a not so good diagnosis.

you can take a really hard hit, or several. you may have survived traumatic events or series of events, things that would take anyone down.

there may not be an answer to "why me?" or "why not you?"

ultimately, it's up to you to get back up.

do the best you can as long as you are able to. that's all anyone can or should ask or expect from you.

it's a very fine line to walk when you expect more from yourself than others. it can be even harder to forgive yourself for your own mistakes, real or imagined, although you forgive others easily.

i hope my babble makes some bit of sense, to someone other than me.

ol'cs · 04-05-2011, 11:17 PM

Quote:

Originally Posted by toadie

for some people hope is a cruel

hope is cruel in the waiting...

hope for a cure, hope to get, be and feel better, hope to regain our lives.

i don't idle, hope for me. i hope for my kids. that my kids remember, see and feel me busy with living, full of love, laughter and hope for a better tomorrow.

you don't need an attitude adjustment, you are golden as you are.

mayhap, we all need to have some grit about us to survive life in general. when you have pd, you have to have enough grit to make it through the really crappy days and see that tomorrow is a brand new day "full of possibility" a chance for a "do over"

the "do over" may be a few days or weeks in coming but that ahhhh that one good day.

my world is spent almost exclusively among "regular people", when i am relatively ok, i tend to do more and make regular people ashamed of their idle complaints or of being just plain lazy. if i wake them to a new or better level of functioning or living, it is worth it, i've had a good day.

life doesn't always go the way you think it should, you can have a very good life regardless of the hand you're given. there is a good life after a not so good diagnosis.

you can take a really hard hit, or several. you may have survived traumatic events or series of events, things that would take anyone down.

there may not be an answer to "why me?" or "why not you?"

ultimately, it's up to you to get back up.

do the best you can as long as you are able to. that's all anyone can or should ask or expect from you.

it's a very fine line to walk when you expect more from yourself than others. it can be even harder to forgive yourself for your own mistakes, real or imagined, although you forgive others easily.

i hope my babble makes some bit of sense, to someone other than me.

Just like our disease, and our personalities, our lives are all so different. I'll bet that anyone with an established life, support of family, financial independence, and all the coping skills in the world, plus early in this disease will and can feel a sense of hope. For those who are treated like they "aren't disabled", broke, abandoned by most family and friends, swamped with "things to do" often just to eat and find a warm place to be, and otherwise "crippled" by thousands of possible things going bad, or wrong, or just pain, depression, and the inability to move, and are advanced and alone to cope by themselves, undermedicated, death seems like a release. You who know what i'm talking about, often never post, but still read this forum. Drugs can buy you a few years, but won't halt progression. In the USA, if you are below the poverty line, you are on the street, unmedicated, and have no access to a computer like US, the more fortunate YPWP, life IS NOT worth living. No amount of talk will or can even send a kind word their way. It is not for me that i posted this thread, it is for the forgotten, those who suffer in this country, like tsunami victims, or war victims. Pure despair. No more reason to live. Now i still have reasons to be alive and my pains are adequately taken care of by drugs that i can still afford, and i can pay for my drugs, and i can afford a roof over my head, and still keep warm and adequately fed and have a nestegg for the future when PD stops my breathing.
I fear for a country that doesn't care for it's chronically ill and wants to cut 1 trillion from medicaid. It is similar to those who come back from war, beaten and psychologically suffering silent trauma, losing everything, and nowhere to go and nobody to care about them. They might as well end their lives, because they shoot horses, don't they?

reverett123 · 04-06-2011, 04:21 AM

...to me, at least, that the US is one of the worst countries in the world to be if you have a serious, incureable illness. The tiny bit of safety net that exists is constantly under threat from some jerk who thinks that he will live forever and so, in his selfishness, stands ready to throw even those shreds to his simpleton followers to advance his own career. To hell with the lot of them.

ginnie · 04-06-2011, 08:59 AM

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

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