General Commentary : Every Patient’s Advocate

CNN’s Heroes of Patient Empowerment. A Humble Thank You.

1 comment »

There aren’t many times that I am left speechless, but this is one of them.

If you are a regular reader of CNN’s Empowered Patient, offered each week by Elizabeth Cohen, then you know there have been any number of outstanding advocates featured. People who work tirelessly to improve our safety, access and navigation through the dysfunctional American healthcare system. Some are healthcare professionals, others are patients just like you and me. Many have lost someone to the system or have suffered a medical error.

This week Elizabeth highlighted six advocates and called them “Empowered Heroes,” citing the fact that each has taken a negative experience with healthcare to transform it into a way to help others. I am privileged to be among them.

Take a moment to read about the other heroes:  Victoria and Armando Nahum who lost their very healthy son to a MRSA infection and now work tirelessly to prevent hospital and community acquired infections, Dr. Tom Ferguson who built one of the first health websites ever created, and coined the term “e-patients,” Ysabel Duron who recognized the need for cancer support among the Latino community, Gilles Frydman who founded ACOR, the Association of Online Cancer Resources, and Michael Cohen who, early on, recognized the problem of prescription drug errors and founded the Institute for Safe Medication Practices.

It’s an honor, a privilege, and in many ways I believe “I’m not worthy!” Well. OK. I’m just not so worthy as so many others. Because this list is only six people.  There are dozens of advocates who work on behalf of all of us to improve the system.

I can only say thank you for the recognition, and — now you know why I am left speechless.

Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate email tips
- - - - - - - - - - -
Join Trisha in the Patient Empowerment Forum at About.com
- - - - - - - - - - -
Or link here to empower yourself at EveryPatientsAdvocate.com

Randy Pausch - a Commencement Address of a Lifetime

1 comment »

Those of you who follow my blog know that I’m a fan of Randy Pausch, like so many others. I first blogged about him last September, after watching his Lecture of a Lifetime — what he has learned in his too-short years, and the legacy he wants to leave his wife and children. As I said then, I felt his remarks were simply brilliant, and brilliantly simple.

[If you haven't heard of this fine man, you should know that in August 2007, he was given up to six months to live. He is dying of pancreatic cancer, a swift killer with very few who survive it more than a few months once it's diagnosed.]

Then in February I posted an update with a link to his personal blog. It has been one of the most linked-to posts I’ve ever written here.

I learned Randy appeared on Oprah today. That means that people who had not heard of Randy, and his “lecture of a lifetime” before today have certainly heard of him now.

I didn’t see Oprah, but I did decide I needed to check back in with this remarkable man. On his personal blog I found a link to the video of his address to the Carnegie-Mellon Class of 2008. (As an aside, I’m proud to say that my closest friend’s son, named Tim, was a top engineering graduate at Carnegie Tech this year — you go, Tim!)

Just like any of the other appearances of Randy’s I’ve witnessed, his graduation speech was moving; moving to the point that you just wish — just WISH — and hope and pray that his death is a loooong time coming from now. He is so generous with his words of wisdom. He needs more time to share them all.

He made two excellent points for the rest of us:

  • When we are on our deathbeds, it won’t be the things we did that we regret. It will be the things we didn’t do.
  • To live your best life, find your passion — the thing that fuels you from the inside. You won’t find it in things you buy or own. You’ll find it will be grounded in other people.

Since first discovering Dr. Pausch last year, I’ve felt a bit of a kinship. Unless you’ve ever heard that death sentence (you have only six months to live) you can’t really relate to it. But if you have heard it? You discover there is a very strong tie that binds you to that person — and I feel that tie with Randy Pausch.

Take the six minutes to watch his commencement address. It will stay with you, as I hope it will stay with those many graduates of Carnegie Mellon who were lucky enough to have known Dr. Randy Pausch, even if it was only for those few minutes at commencement.

Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate email tips
- - - - - - - - - - -
Join Trisha in the Patient Empowerment Forum at About.com
- - - - - - - - - - -
Or link here to empower yourself at EveryPatientsAdvocate.com

Moms With Alzheimers Need Mother’s Day, Too

No comments yet! »

My Parents

At least I think they do.

I returned a few days ago from spending a week with my parents in Florida. My mother is in a “Memory Support Center” — a too-hopeful title for a place where people who suffer from Alzheimer’s Disease and other dementias can benefit from assisted living and nursing care, plus daily activities for supporting what memory they still have.

Mom was diagnosed with Alzheimer’s disease about nine years ago. It’s been a very long and sad road, especially for my dad who has been at her side, on and beyond what most caregivers, even spouses, provide. He has been there for her through too much thick and even more thin. My sisters and I have worried that her debilitation would be the death of him.

What do you do for a mom who has Alzheimer’s disease and apparently has no memory of even her children?

You do the same as you would do if she remembered every moment of your lives together. Because honoring her and loving her doesn’t change, just because she doesn’t seem to get it. So my sisters and I sent flowers. And when I visited last week, I gave Mom a teddy bear with angel wings and a halo.

And then you do what you need to do to support prevention or cure for this “long good-bye,” so others won’t suffer the same way. To honor Mom, my sisters and I donate to the Alzheimer’s Association, and we walk in the annual fundraising walk each year. We’re doing what we can do.

I hope your family is never touched by this horrible disease. If it is, you may be interested in some of the material found on this blog. If you’d like to share more information about your experience with it, feel free to leave comments in the Alzheimer’s section.

And if you don’t deal with it — count your lucky stars.

Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate email tips
- - - - - - - - - - -
Join Trisha in the Patient Empowerment Forum at About.com
- - - - - - - - - - -
Or link here to empower yourself at EveryPatientsAdvocate.com

The Bully Psychiatrist from Naples, FL - Follow Up and Lessons Learned

1 comment »

A few months ago I told you about an addiction psychiatrist from Naples, Florida who is a bully. Well — he is still bullying. I heard from him again today.

At that time I shared with you a story about a comment that had been made about him by someone who had read my blog. Nothing I had said, rather, commentary by someone else about how she felt she had been sexually harrassed, stalked and mistreated.

I told you how, behind my back, he had pulled my Wordpress blog offline and had contacted my About.com colleagues to ask them to make me pull THIS blog offline — but he had never even contacted me! He never asked me if I would remove the comment, which — if I had known there was a problem — I would have. The comment was a he-said, she-said type of thing. I don’t know either of the parties. I would have pulled the post. All he needed to do was send me an email to request it — and as you can see — my email address is front and center on every page of this blog. I’m a reasonable person. No excuses for his bullying tactics.

In frustration, this Naples psychiatrist finally sent me an email DEMANDING I remove the comment. Aha! He did find my email address! He cited all kinds of federal laws and trademark infringements he thought I was violating. At that point, I replied to him, and told him I don’t respond well to bully tactics. He had found my email address just fine at that point — so why didn’t he contact me before contacting my colleagues?

And then, I asked him for an apology. I just wanted him to take responsibility for all his bullying. With an apology, I would removed the post and that would be the end.

The apology was never forthcoming. Nope. Instead he threatened me some more — so I published my first post which you can find here.

You can imagine then how I felt about another email arriving from the bully psychiatrist today. Here’s an excerpt — copied and pasted — the typos are his:

Subject: YOU ARE BEING SUE

PLEASE BE ADVISED IF THE FOLLOWING CONTENT IS NOT REMOVED WITHING 3 WORKING
DAYS, I WILL ADVISED MY ATTORNEY TO INCLUDE YOUR WEB COMPANY AND
AFFILIATES IN A LIBEL SUIT FOR $1,000,000 DOLLARS FOR DAMAGE AND EMOTIONAL
HARM. YOU CONTINUE HAVE METAGS THAT APPEAR AS FOLLOWS IN GOOGLES AND OTHER
SEARCH ENGINES

Hmmm…. so the question is…. what happened to all those cyberstalking laws he cited in his first contact with me? Now — who is stalking whom? All I asked for was an apology from the bully. He can’t handle an apology — so now he’s stalking me. Never mind that I live more than 1,000 miles away.

But — what he doesn’t know is that I spend quite a bit of time in South Florida — not far from Naples, Ft. Meyers, Marco Island… I have family there and I’m there several times a year. In fact, I’ll be there within the next few weeks, so while I’m there, I plan to make a trip up to the Naples police department to see what kinds of restraining orders or other paperwork there may be on him. If he contacts me again, I’ll add a restraining order to their records.

I will not be bullied.

And what does it mean to you, the reader of this blog? Patients need to be able to protect themselves from dangerous doctors, whether those doctors are addicted to alcohol or other substances, bad surgeons, guilty of making mistakes with their patients — or even bullies.

Here is a good way to do it:

Sometimes all it requires is a general google search to get the information you need. If you know the doctor’s name, then search on that first, plus the word “blog” or the word “problem” or even “malpractice.” You may need to use your location, too, because there may be more than one doctor who has the same name.

Even if you don’t know his or her name, Just input your location, the type of doctor you seek (family practice, orthopedist, whatever) — and then those words: blog, malpractice, problem, even “error” or “mistake.”

Be sure to look down through five or six pages of google results — and you have a better chance of finding the information you need. Even if there haven’t been lawsuits, you can get general impressions of a doctor if someone has had a very good or very bad experience and chose to share that information online.

Bullying is never acceptable. I’m still waiting for that apology. I refuse to respond to bullying tactics.

I hope you will follow my lead.

Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate email tips
- - - - - - - - - - -
Join Trisha in the Patient Empowerment Forum at About.com
- - - - - - - - - - -
Or link here to empower yourself at EveryPatientsAdvocate.com

Earlier Posts »