[Judith]

We are told that no one dies of Parkinson's. They die with it but not of it. The deaths of several people I knew were described as due to complications from PD, but no one ever blamed PD directly. It was almost as though it was forbidden to do so.

So I was surprised when, as a hospice volunteer, I was assigned a new hospice patient and saw that that person has an official diagnosis of "End-stage Parkinson's."

Have any of you heard of this? I'm curious as to your comments and reactions.

Thanks,

Judith

[made it up]

Hi Judith,
It's a term commonly used with other conditions too eg end stage renal failure, etc.
The term that is formally used for a cause of death often appears to have little in common with what the deceased may have predominantly suffered from eg a PWP may die of pneumonia which is not that unusual.
I like to think it won't be PD which bites me on the bum eventually but something more exotic...sorry can't come up with anything
Cheers,
Lee

[Judith]

Thanks for your helpful response, Lee. I hear what you're saying, as I have also seen similar "end stage" diagnoses for patients with other illnesses. I guess my patient with end-stage ALS will officially die of something related to his disease, even though in my mind it is the ALS that is the culprit.

One reason I bring this up is that I think many are led to believe that PD is not all that serious since no one ever dies of it!

I do have to say, as a PWP, it was a bit disconcerting to see that end-stage PD diagnosis in writing. If PD is at an end stage, so is the person's life.

Like you, I'm hoping for something other than PD to end my days.

Judith

[rose of his heart]

Hi Judith,

This subject happens to be one of my pet peeves! One of the first concepts I encountered around the time of my diagnosis was, “PD doesn’t kill you; it just makes you wish it would.” With that as a sobering starting place, and the backdrop of YOPD in my family, here’s my 2½-cent rant of the day.

PD doesn’t kill? Really? Great. If I share that news with Aetna maybe they'll lower my life insurance rates back to where they were pre-PD! And maybe the three companies I called to get long term care insurance will change their minds and take PD off the blacklist. Maybe the whole lot will stop referring to PD mortality tables during their policymaking meetings.

Maybe PD doesn't kill, like AIDS doesn’t kill. AIDS just...um...what was it...oh, yeah, weakens the immune system to the point that the person is defenseless against opportunistic infections. Hmm. Rings a bell. Among other insults, PD renders us more likely to aspirate bacteria with our food and less likely to be able to clear our lungs of it, leaving us defenseless against opportunistic infections! In both cases, pneumonia sneaks in like a cowardly thief preying on the most vulnerable. So the thief clunks the old lady on the head in the elevator, steals her wedding ring and purse and leaves her for dead. Cause of death? Well the poor dear fell, of course. It could happen to anyone. And, since the woman was 91, she not only met but exceeded her life expectancy. Sound familiar? Feel better now? Me neither.

There is something extremely insulting, patronizing, even unethical, about sugar-coating truth, and/or trying to create false hope by citing carefully massaged data. If PWP want hope, as I do, there are many places to find it. Religion. Friends. Inspirational stories. Promising research. Great literature. Philosophy. But, if you are a doctor or PWP talking to me—a person with YOUNG ONSET PD—please, please, please ditch that paper-thin “reassurance” that the PWP lifespan is close to that of the general population and that only a small minority of PWP will see end-stage disease. (Notice how this is phrased: not PWYOPD but PWP meaning of any age.) Are those facts true? Yes. Are they misleading? Completely. Admittedly, not everyone wants the same thing from their doc, especially right away. That's okay.

Listen. When I pay hundreds of dollars a month for health insurance… When I research the background of every doctor I HIRE for her knowledge expertise… When I don’t blink at a $975 initial visit fee because I am so ****ing grateful to finally find someone with enough competence to properly diagnose me… When I find the time and energy and courage to tell a doctor everything I know about me that might be pertinent, I EXPECT, DESIRE AND DESERVE to be given a diagnosis, treatment advice and prognosis that are based on data that is up-to-date, clear and relevant to me. I am paying for expertise, not pablum, even if it is well-intentioned.

Why? Because I am a grownup. Because I am a planner; I need to look at things head on. Because I have children, and with that legal and financial ducks to put in order. Because I’m not an idiot. Because my intuition is that those things you said are BS (especially when your eye contact decreases) and my intellect knows it makes no sense based on what I've read, or in light of my family history. Like denial, cognitive dissonance is a waste of time and resolving it is as gnawingly seductive as agonist-induced shopping. Just tell me the truth. I can take it. You can’t really move into acceptance until you know what it is you are accepting.

Here’s my prediction: Of all PWP, those of us with young-onset PD will not live into our 80s or 90s. Numbers that suggest otherwise are aggregate, meaning that they include the 90% of PWP who are late-onsetters. Different ballgame. As young onsetters we are the most likely to see the end stages of the disease, especially if we are otherwise healthy and strong. Why? Because The fact that my grandmother, who was diagnosed in her mid-30s and died 16 years later, is relevant to me because NOTHING has been found to slow disease process definitively or significantly. And, BTW, should I outlive grandma by 10 years, what will those years likely look like? Wait. Don’t tell me; it’s a little early in the day for that much reality, even for me.

Don’t want to believe me? That’s okay. Ask your doctor what the “disease duration” is for young onset PD. If s/he doesn’t know, or tells you those stats are hard to come by, ask why? If that gets you nowhere, just read the solicitation copy mailed out by the hundreds of thousands every six weeks by our PD organizations. Amazing how differently a story is told for donors versus patients. Therein lies the rub. I am both. I’ve written both. I am not talking about the difference between the glass is half empty or the glass is half full. I am simply asking whether the glass would hold a pint or a thimbleful. If you can’t say it out loud, that should tell both of us something.

There’s another reason to care about the truth, at least for us young-onsetters. This is the time in our lives when we can be the most useful in the fight to improve the lives of PWP and advance better treatments and a cure. When one is in one’s 30s or 40s or 50s we are the most active and connected members of our communities. We are techno-savvy and media-ready. Our kids are still young, cute and compassion-provoking enough to be compelling. By and large, PD hasn’t yet ravaged our ability to speak or think or travel. And we are prime candidates for biomedical research.

Well, I feel better. If you don't, I am so sorry. Just forget everything you read. And I admit, although we ALL cannot be exceptions that prove the rule, someone has to be. Maybe that will be you!
Rose

[paula_w]

rose,

to quote bob cummings, aka bandido bob, 'Parkinson's won't kill you; but there are no survivors." It does kill you. Cancer patients die of starvation. It's just something they tell you which at first you believe and pass on to your loved ones. It takes forever to die of pd.

I'm with you. I won't make it to 70; i just turned 60 and have had it for more than 20 years.

Miracles do get stumbled upon. But my hope comes from causing changes to help those behind me and if I accidentally get cured wouldn't that be special?

not holding my breath.
paula

[Judith]

Rose,

You make so many good points - all dealing with the importance of the truth. White lies (big or little) are less harmful when the truth doesn't matter, but it matters here, regardless of a person's age at diagnosis.

Do I feel better after reading your post? Yes and no. You spoke the truth. We need to encourage the medical profession to speak the truth too, so that we can deal with it and so that we can adapt to the changes that PD brings us. But the truth doesn't bring back friends and family who have passed away from complications of PD. Might things be different for some of them or their families if they had known the truth? I don't know. But at least they wouldn't have been shocked at the outcome or held out false hope for miracle cures that never came.

The Serenity Prayer comes to mind: If we are told the truth it will be easier to accept the things we cannot change and to adapt to them. If we are told the truth, we may find the courage to change the things we can. And if we are told the truth, we may have the wisdom to know the difference.

Thanks for an articulate response and for speaking from your heart,

Judith