YourCity.MD: A good way to give back

Joe Benza’s story: 

I’m an entrepreneur, with several successful businesses over the years.  My book called "Preventing Aids" published in 1985 by JALSCO, Inc.  is in 40 countries.  I also bought and sold Internet domain names as a rewarding hobby.  I come from a medical family:  I have a brother who’s a surgeon, and we have dentists, dental hygienists and a urologist in the family as well. 

My father had Parkinson’s, and his hand would shake a little.  He was a proud man, so he wanted medication to stop that from happening as he was very self-conscious.  He ended up getting leukemia, which was one of the rare side effects of taking his partiular drug.  My whole family missed it; we didn’t look at the drugs he was taking to see if the risk outweighed the reward; none of us looked.  The drug was somewhat controversial, and my Dad told me two of his doctors argued about the use of the drug.  One of the doctors stated the other doctor was getting a kickback or had a financial interest of some kind in prescribing the drug! 

Experiencing side effects, he was misdiagnosed by his doctors for four months, and then he passed away.  We were really angry but took on most all of the blame ourselves...at least, I know I did.

About a year and a half later, a business opportunity developed.  I’d realized that the name www.YourCity.MD was available as a Web domain name with the "Local" city names as well.  The Gannett company encouraged me to build the websites to help people like my Dad and my family.  They were prepared to collaborate with me on making YourCity.MD into a business. They ultimately bowed out, but I kept with it.  In light of what had happened to my father, it seemed a good way to give back to everyone else so they can avoid our guilt by using our free resources to make the best decisions for their own families.  

Today, we’re helping people in 100% of the USA to find good local doctors and the best healthcare information available.  We are the only "local" platform on the Internet in any industry with a national footprint. 

Read another entrepreneur’s entrepreneurial patient safety story.  Thanks to Joe for the interview, and to Joelle Caputa of CPR Communications for connecting us. 

My father, my hero: Paul Farbstein

Today is the third anniversary of the death of my father, my hero, Paul Farbstein.

He waged a long fight with Parkinson's Disease, without complaining. Even this disabling and humbling disease did not pierce his characteristic calmness.

With my mother's help, he did daily stretching exercises. To keep some muscle tone, he used a Theracycle, a self-propelling exercise bicycle, which greatly delayed his need for a wheelchair.

Long before Parkinson's, he had written a living will to express his wishes, and opted against heroic measures. We brought him to a hospice in the final days, at my urging. At that point, the only thing I could give my father was a good death.

Advice: Live like Paul Farbstein.

Read another story about hospice care.

A curmudgeon with a purpose: An activist disease foundation fighting Parkinson's Disease

He had long been the chief executive officer of Intel Corporation. Now Andrew Grove, 71, has Parkinson's Disease. So seven years ago, he launched the Grove Foundation, to combat Parkinson's. He also plays an ad hoc advisory role to the Michael J. Fox Foundation, to which he has donated $40 million. The creation of these two foundations in 2000 marked the beginning of targeted Parkinson's research.

At the time, Andrew thought that stem cell research would lead to a cure. By financing such research, which the government had decided not to do, he hoped to speed the cure.

While he is dissatisfied with progress to date, he realizes this approach has some unexpected results: "The most important thing we have figured out is the various things we didn't know and should have known."

As Joseph Nocera notes, "You have to be doing targeted research even to discover what you need to discover."

Andrew sees his role as being a curmudgeon with a purpose, whose job it is to push and prod and not let anyone become satisfied with the progress they have made.

His foundation is an activist disease foundation that is impatient with the pace of research and is using its money to stimulate researchers to advance in new ways.

Advice to those concerned about Parkinson's: Consider donating to an activist disease foundation.

Read a story about a similar effort against multiple sclerosis.

Thanks to Joseph Nocera for the source article in the New York Times of November 11.

I’m in remarkably good shape: A Parkinson’s patient advocate

Parkinson's disease hasn't robbed A.C. Cowan of his ability to enjoy life or fight for causes he's passionate about.

The 82-year-old spoke at a symposium this week to raise awareness about Parkinson's disease at LSU Health Sciences Center-Shreveport's. He spoke to an audience of patients, their families and caregivers, allied health and medical professionals and students

"For my age and the disease, I'm in remarkably in good shape," having lived with Parkinson’s for ten years, he said. "There's nothing I can't do for myself. I drive, eat well and I enjoy my life."

"Now in retirement, I have time to work with the Parkinson's group as an advocate. I've been to Washington, D.C., three times to try and pry money out of Congress" for Parkinson's disease research.

Advice to Parkinson's patients: Live like A.C. Cowan.

Read one of our Parkinson’s stories, or read more from the source article by Mary Jimenez.

Parkinson’s Treatment - Off and On: A medication error

Raul, a very nice elderly man who has had Parkinson’s Disease for 15 years, had frozen in place, seemingly awake but unresponsive, for more than an hour. Such on/off states among Parkinson’s patients are quite frightening to spouses when they occur. They seem to occur when the patient’s brain lacks Dopamine, a chemical that is provided by Sinemet. Alarmed, his wife called an ambulance, which took Raul to a large, well-known medical center. He arrived at noon. Later that afternoon, his wife gave his Sinemet—the mainstay of his treatment for all these years—to the E.R. nurse, with instructions that his next pill was due at 11 pm.

Raul was finally admitted to a hospital bed on the Surgery unit at 9 pm, because no bed in an appropriate unit was available. When Raul’s adult son called Raul’s nurse at 11:40 pm to verify the nurse had indeed given him the Sinemet, the nurse said another nurse was getting it. In other words, the attending physician had to write an order for the same medicine, hopefully in the same dose, with a similar timed release, and the hospital Pharmacy would dispense it—but this had not been done, and the dose was already 40 minutes late. Without their Sinemet, patients with advanced Parkinson’s often have extreme, uncontrollable tremors affecting their whole arms and legs, as viewers of Michael J. Fox’s political advertisement in last year’s Senatorial election in Missouri saw. The nurse mentioned that Raul had been quite “restless.” As my teenager says, Duh!

The hospital’s delay in providing the Sinemet had both caused this upsetting and uncomfortable set of tremors, AND made a recurrence of the on/off state even more likely—and that was the very cause that brought him to the hospital for treatment! Excuse my cynicism, but I doubt that the hospital will withhold their bill, or delay in sending it. Raul’s Medicare should cover the bill, so my thanks to you, Reader, the American taxpayer, for paying for his care

Advice to patient advocates: If a hospital patient depends on the meds he has brought from home, call to ensure that nurses have given them to him on time.