Monday, February 3, 2020

More Time

More Time

We have all known friends or family who died with little or no warning.  Whether it is a heart attack, a car accident, or something else unforeseen, we feel badly for the person and his or her family.  Of course, there is the pain and loss associated with the event. Beyond that, we wish for their sake that it had been different.  We wish they would have had more time.  More time to spend with people they loved and who loved them.  More time to finish things that were left undone. More time to spend doing the things they loved most.  More time to say goodbye.
And yet, if we were given the opportunity to know in advance when we are going to die, most of us would probably say no.  Why ruin the time we have left because we know that the “clock is ticking”. It is something we would rather not think about because we fear death.  That is human nature.
While living with PD is no picnic, we have traditionally been told that it will not kill us.  We have been told that we will die “with” PD, not “from” it. And yet, PD is the 14th leading cause of death in the U.S.  And up to 75% or more of PwPs will develop dementia, which is terminal, during the course of their disease. And we know that aspiration caused by  PD swallowing problems can be fatal.
The following is from the Michael J. Fox Foundation website:
Will I die from Parkinson's disease?
Most doctors say that Parkinson's disease itself is not fatal. You die with Parkinson's disease, not from it. However, as symptoms worsen they can cause incidents that result in death. For example, in advanced cases, difficulty swallowing can cause Parkinson's patients to aspirate food into the lungs, leading to pneumonia or other pulmonary conditions. Loss of balance can cause falls that result in serious injuries or death. The seriousness of these incidents depends greatly on the patient's age, overall health and disease stage.
I don’t think this information is designed to be purposely disingenuous (what a great word!), but it smacks of “word-mincing”.  By the way, similar verbiage is found on all the national PD websites
Please don’t book a one-way ticket on a “lemming express” (small arctic rodents that stampede, following each other over the edge of a cliff) after reading this.  OK, I’ll say it. We are all going to die! Big deal, right? Everybody knows that.
OK, everybody take a deep breath.  Then review my opening comments about wishing for more time.  You could still get hit by a truck tomorrow or die from an unrelated cause.  Otherwise, PD will get you eventually.  If you choose to accept the idea that PD is an “end-game” proposition, you have given yourself the gift of “more time”.  How much more is an estimate depending on your symptoms and how advanced they are, but you get more time regardless.
How will you use that time?  I came to the conclusion I outlined here a few years ago and this is what my care partner and I have done (I am 69 and was diagnosed ten years ago):
Linda and I have become “members” of the PD Palliative Care (PC) Clinic at University of Colorado Hospital.  The PC team (PC doctor, nurse, social worker, and chaplain) has helped us make end-stage choices and plans based on our preferences designed to minimize chaos-related stress when the time comes.  We both receive customized care, counseling, or other service based on our needs.

We are focused on quality of life and “living in the moment”, spending time doing things that matter to us (including PD advocacy) with each other, family and friends.
We have a strong sense of peace and acceptance about the future.
We are enjoying life and each other.
I couldn’t ask for anything more.

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