Parkinson's Disease Tulip


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Old 05-04-2011, 12:32 AM #1
ol'cs ol'cs is offline
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Trig i believe this needs to be aired

WARNING THE FOLLOWNG SUBJECT MAY NOT BE SOMETHING THAT EVERYONE CAN HANDLE, SO IF YOU ARE SENSITIVE ABOUT THE SUBJECT OF PD AND DEATH READ NO FURTHER



When the time comes when we reach stage five, (remember nobody lives forever) what happens to us? We once had a few caretakers whose spouses passed on in stage 5, remember GOOGY's husband (Bill, who went "naturally"), and Bella and her hubby Fabs (Fabian who went right to the end); and others over the years.
I've heard that it gets pretty distressing in the end, and it's a slow death (go figure?). Something like congestive heart failure, well something like that, i' m not there yet. Can somebody give us some no BS about it, at least so we don't miss anything to aid our passage?
And i have read many times that suicide in PD victims is not much greater than the general population, so for those of us who have had it for years , i guess that means that it's no worse than a bad "off" in the end. I'm very curious because i can't seem to find descriptons of many "case histories", to get "a handle" on just what to expect? I mean, if there is anything that they REGULARLY do, to stop choking for 4 days or lingering painfully, i wanna know about it, so i can order my doctor to give it to me, even if it kills me. Now i'm no Kevorkian fan, if you can still get pleasure out of life but just want to end it because you are depressed, well that's a bad reason, because they have things that will fix depression, but if i'm in really bad distress for more than awhile, and it's the inevitable end stage of pd that's causing it; please forgive me, but i wanna have it ready to use.

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Old 05-04-2011, 09:30 AM #2
GregW1 GregW1 is offline
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Cool It's like waiting in line at the DMV. only longer and more painful

CS,

A not so funny thing happened on the way to a cure-it's taking a lot longer than many of us would have thought. I haven't been on this board since January, but I couldn't sleep and logged on to find your familiar moniker.

Having lost AJ's mother and step dad, and my own mother, along with a few PD pals and a couple of non-PD friends in the last two years-yes, it's been raining death around the Wasson house lately-we've seen our share of departures. And at 16+ years out, we have had enough aches and pains to provoke a few "what if" conversations to be filed away for future reference should we mutually decide that the game is no longer worth the candle. Hopefully that day is quite a ways down the road, but having been a Boy Scout, I like to be prepared.

I can't imagine this comes as news to you (weren't you a chemist in a previous life?), but after witnessing a few passings and discussing the location and use of the "emergency exits" with a couple of doctors, I think at least here in the US it would go something like this.

To be plain, it seems that there are three ways out: (I) passive assisted suicide, (II) assisted suicide, and (III) good old-fashioned suicide, unassisted.

I think we see a lot of the first in respite, nursing home, and hospice care, although it is not discussed openly. Unless we are among the fortunate few who fall down the stairs or bonk their heads and lose consciousness and never wake up, there is usually a substantial amount of pain associated with the end-of-life for PWP's. Strong painkillers like morphine and its derivatives are still used to make patients comfortable. There comes a point, which I've seen in several instances, where the issue is whether to increase pain meds and take the "risk" that the patient's breathing will be suppressed by the sedation and cause his or her death. The "upside" of this is that you can make it known to those near and dear to you, that should that choice present itself you would like to vote by proxy for over sedation. I know nurses and doctors who in their private moments acknowledge that they have increased pain medications at the request of relatives knowing the probable outcome. I think it happens all the time and it doesn't hurt to let those around you know that you would appreciate a push beyond a simple DNR request.

Assisted suicide seems to be a lot easier to come by than I would've thought, especially nowadays. If one seriously want to find the exit, and wants to avoid both additional pain (gun, rope, bridge, etc.) and the possibility that he or she will botch the job and wake up with end stage PD AND scrambled eggs for brains, one can simply start asking around and sooner than later find a group dedicated to making the exit as easy and pleasant as possible. I don't know the cost, but my understanding is that the patient buys the raw materials, including the proper mix of medications and simple hardware to effect their delivery, and the assistants help you set up the rig. The patient uses a plunger or some device to begin the flow of medications through an IV (that makes it the patient's choice), and after determining that the patient has departed, the assistants simply walk out the door and notify someone so that no one mistakenly walks in on a scene they did not expect.

Unassisted suicide is apparently quite easy as well, but involves a little more planning and risk. My understanding is you want to get the mix of medications absolutely right, to avoid pain or unpleasant sensation, and ensure that you make it all the way out. If the Internet isn't full of reliable information on this I would be flabbergasted, but if you can consult a sympathetic medical professional to talk to off the record, I certainly would.

As you said CS, most PWP's don't take a bow and leave the stage voluntarily. Like most of the population, we cling to life under the most extraordinary circumstances. And, to my mind, this is as it should be. Occasionally I have days where not a single comfortable or pleasant moment has intruded on the misery. But then at the end of the day, or sometimes late at night talking with AJ, I will find myself laughing at a joke or circumstance, or looking into the eyes of a friend, or simply notice that the medications have finally kicked in for few moments of blissfull relief, and that is enough to make me want to wake up the next morning and see what life brings.

The end stage of Parkinson's is pretty unpleasant, so I'm told and so I've seen. But so far I'm content to wait as long as possible to find out. Not particularly believing in an afterlife, I find the prospect of eternal oblivion scary, though if it is eternal oblivion how I would ever know is beyond me.

If there is one thing PD has taught me it is that the human spirit is stunningly elastic. It can bend and bend and bend and still not break. Whether this is simply a result of a chemical mix in our brains, or truly a testament to the resiliency of the human spirit, I can't say. But to those of you who remember him, I will quote the words of an old Braintalk comrade - "if you want to keep moving, keep moving." If you don't, make sure you know what you're doing and think at least twice about giving up the only thing any of us has ever known - life.

Greg

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Old 05-04-2011, 09:49 AM #3
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my 91 year old father died of complications of old age and my 62 year old brother died of lung cancer. both were in hospice and were given morphine as needed. i can't think of anything more awful than dying of lung cancer since it spreads so rapidly through the body. assisted suicide is legal in wash state, my brother had filled out the forms but it didn't happen, at the end he wasn't capable of taking the meds himself.

not to be too cynical but everyone, whether they have pd or not, need to have their exit wishes known to your heirs and involve them in the planning.
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Old 05-04-2011, 10:18 AM #4
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http://www.huffingtonpost.com/2011/0..._n_856037.html
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 05-04-2011, 12:12 PM #5
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Quote:
Originally Posted by soccertese View Post
my 91 year old father died of complications of old age and my 62 year old brother died of lung cancer. both were in hospice and were given morphine as needed. i can't think of anything more awful than dying of lung cancer since it spreads so rapidly through the body. assisted suicide is legal in wash state, my brother had filled out the forms but it didn't happen, at the end he wasn't capable of taking the meds himself.

not to be too cynical but everyone, whether they have pd or not, need to have their exit wishes known to your heirs and involve them in the planning.
I really agree with this , someone or a close trusted few have to know your wishes and see that it is carried out. Unless it is illegal...don't want them to be getting in trouble.
And it's good for family & friends to have some idea of any wishes so they aren't shocked, argue or blame the ones that implement the wishes.
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Old 05-04-2011, 05:23 PM #6
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Quote:
Originally Posted by GregW1 View Post
...[A] ...that is enough to make me want to wake up the next morning and see what life brings.

... [B] I find the prospect of eternal oblivion scary, though if it is eternal oblivion how I would ever know is beyond me.

...[C] think at least twice about giving up the only thing any of us has ever known - life.

Greg

A. Yes, yes. I slipped back into Depression for a while last year, and during that period, visited New Mexico--as any "high-functioning" depressive should. I was having Dark Thoughts one day (not even close to acting on them), when a friend who races pigeons took us out back to see the pure white males get their afternoon exercise. Their bursting skyward was weirdly inspiring--weird because you're supposed to be inspired by them, and I, rebellious as I am, have a streak of not liking to do anything normal people would do. But there I was, my friend telling me he takes the birds to weddings and funerals (for a fee), and I rejoicing that I had survived to live that day, with the white birds against the bluest sky ever.

B. It's a subset of the Mystery of Living: Do I live alone in The Void? r is there something else present to me? Do I live awake and alive? Or do I stumble toward nothing? These are questions that many avoid by buying Stuff and gaining Status. It's our good fortune to have PD, so, seeing that Status and Stuff can't save us from The Void, we can ponder such questions. It's a matter of which wolf to feed--you've heard the story.

C. Maybe you would remember to give an old pal or two a call to say goodbye.

Jaye
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Old 05-05-2011, 02:47 AM #7
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Default i hear your voices

of a few of "us" who usually are always ready to respond to the tough questions, and this is perhaps the toughest one to deal with, for ALL of us, parkinsonian or not. We'll all have to find our own answers ultimately. I' just glad that i lived to see humankind sort of understand the mysteries of reality, before i have to dive back into it. cs
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Old 05-05-2011, 07:24 AM #8
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hey cs,
i believe it was said here earlier but, it's probably best to have a legal document, living will or health care proxy or such. it alleviates family or friends from making difficult decisions under extremely stressful circumstances.

my dad, mom, brothers, and i were or are dnr.

my ma had high blood pressure, she told us (kids) that the docs said she didn't have to take them anymore.
it turns out she stopped taking the meds because she couldn't afford them and her pride wouldn't allow her to ask us for help.
she an aneurysm the size of a quarter in her left temple, a stroke, was in a coma for 3 1/2 months. she had to learn to walk, talk, feed and care for herself all over at 60.

my dad was 49, cardio-myopathy and given 6 months to live in feb of 1972.
several hearts attacks, a stroke in '80 and a cardiac arrest in '81. at that time, the state said docs had to make 3 attempts to revive. he woke up swearing the 3rd charge.

he was 71 years old, oct 3, 1994, first day of bow season, he got a nice buck. sat down for coffee and smoke while he waited for my brothers to help him haul his buck back. less than an hour later my brother, david, found dad dead.

my brother-in law shot himself in the head with a rifle oct 19, 1995. left my sister and 3 month old twin girls behind.

my brother, david, was healthy strong and full of poo, had 2 aneurysms or goliath arteriole-venus malformations (one the size of a golf ball in his left temple and the other the size of a lime in the back of his head) and in less than a week. he had spiked a temp of 108 for over 12 hours. he was pronounced brain dead, i made them check and re-check all of their tests, and results 3 times.

there was no recovery from that. death was a grace.

he died on jan 8,1999 at 39 years old.

after a family conference, the goodbyes, i was the youngest at 34, but i signed david's final paperwork to turn off life support and held his hand while his body left this world. just like when we were kids and held hands to cross the road.

at any rate, i worked at the same company that my older sister did, and apparently my sister had discussed her feelings of second thoughts with her co-workers. she blamed me for "killing" our brother, after all "i unplugged him", i had a few of her friends ask me if i felt like i had "murdered" him.

i asked "them" why i hadn't seen the sister or them, while i held his hand. i respected his wishes, "their selfish denial" would have prolonged his body's existence.

the point of all this babble is that we are not always allowed to choose when, how or what we die of.

making your wishes known gives us dignity and allows those left behind with the "comfort" of respecting your wishes.

my apologies, i've insomnia ramblings and talk or say too much.
make any sense?
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Old 05-05-2011, 08:58 AM #9
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Default so true

Thank you for sharing that, and for everyone on this post. These are things everyone should think about and consider, hard and unpleasant though it may be. Not letting your wishes be known, preferably in writing, makes it harder for everyone later and leaves those behind always wondering if they did "the right thing". I think it is hard enough to have to actually "turn the machine off", as you put it, even if you have been told very clearly it is what the person wants. How hard that must have been, and what courage you had, and honor for your brother, to do what you did. I have no doubt he is grateful for your courage and in a better place, free of pain.

It is cowardly and selfish for others to stand back and do nothing at the time, and then later criticize those who stand up and honor what their loved one wants. They clearly have not thought the matter through. Perhaps a gentle reminder asking them what they would want if they were lying in a hospital bed in pain, high fever, whatever, with no hope of ever leaving that bed, would help them see the grace and dignity that stepping up to that most difficult of plates, like you did, represents.
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Old 05-05-2011, 09:55 AM #10
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Default my plan

I find myself more worried about how extreme disability at the end of my life will negatively effect/be a burden to my family, especially my daughter. I want to have a well thought out exit, communicated explicitly to those "in charge" of my care at that stage, in order to spare those I love/who love me unnecessary anguish or prolonged responsibility. Right now, my plan is to approach death the same way I approach life - the next big adventure. I figure, if I were a person of religious faith, that faith would sustain me. But I am not religious. I am a person of curiosity, though, and until proven otherwise, am happy to think of death as simply the next chapter. I'd rather not tarry immobilized in the 9th Circle of Hell, but quickly turn the page to see what happens next.



Canto 34 from Dante's Inferno:

How frozen I became and powerless then,
Ask it not, Reader, for I write it not,
Because all language would be insufficient.
I did not die, and I alive remained not;
Think for thyself now, hast thou aught of wit,
What I became, being of both deprived.
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