Remission Survey

05.00.03  Pre Remission Survey

On April 8, 2014, exactly 20 months since a pesky red spot appeared on my forehead, I was declared in remission by Dr. Arturo Dominguez. In that moment I transitioned into a phase of PRP that I had only viewed from afar. My want to know became an immediate need to know.

I sent an email to 152 PRPers who had something in common. Each has submitted a 2014 PRP Census form and indicated that their status was “in remission”

In my instructions I included a promise. I told them that a response from 100 of the 152 would qualify as a bona fide Remission Survey. I suspected, however, that a 66% response rate was dubious at best.

I also told them that if there were 20 responses, I would write a decent article for the June 1st issue. The final tally was exactly 20. A promise is a promise.

GOAL OF THE SURVEY

There was only one goal: to conduct a pre-survey of PRPers in remission to see how they reacted to and answered specific questions. Were the questions confusing? Did the responses stay focused on remission. Did they take the opportunity to provide an overview of their entire PRP experience.

The fact is, they did all this and more. The result is a redesign of the survey with instructions to intercept confusion and maintain a focus on the subject.

WHAT’S YOUR REMISSION DATE?

I discovered that the month and year is all that is needed. Moreover, if a PRPer has been in remission for over five years, just the year of remission is fine.

WHO MADE THE CALL?

Three obvious options: You, Your dermatologist, Both of you. However, there was enough unsolicited storytelling to justify adding a “comment” field.

Norma Miller—in remission since 07/2007

I made the call when I felt sweat trickling down by back – it felt wonderful after not sweating for 18 months!  I used to hate hot stick humid days and now I love them as they remind me that I don’t have PRP.

ANY RELAPSES OR FLARE-UPS?

When the answer was “no”, that was that. When the answer was “yes”, the comments were always enlightening.

Brenda Steiner—in remission since 03/2005

I had two minor flareups.  Both occurred after I took several rounds of antibiotics for severe sinus and ear infections.  The first flareup was confined to my ankles and feet, the second to my forearms, elbows, shins, and back of the knees.  In both cases, I had the awful itchy red blotches with islands of sparing.  Luckily, these flareups did not last long.—

DID YOU REGAIN YOUR ENERGY?

The response here was fascinating. 81%% regained their energy; 19% didn’t. Again, the comments were always fascinating.

Ed Dunn—in remission since 07/2011

I used to play rugby, now I don’t have the energy.

Elise Latter—in remission since 05/2009

I think I have more energy now than pre-PRP
I exercise more and appreciate my health more than I ever did before.

Gina Drury—in remission since 12/2008

Energy came back, albeit I do still get tired more than I would normally expect to get at age 43.

Ken Ausborn—in remission since 01/2014

I was a football official for 30 years.  I can hardly jog a quarter mile now.

Tom Holder—in remission since 10/2008

I am stronger today than I have ever been.  Since remission, I work out 4-6 times a week.  I had my annual physical recently, and was declared in the best shape my doctor has ever seen me.

DID YOU REGAIN YOUR LIFE?

That may be a question that every Newbie and Roadster wants to ask.  Again, the responses offer important insight regarding Quality of Life issues.

Andy Zarow—in remission since 10/2005

Once I started sweating again I knew I was on my way back.

WHAT’S YOUR DEFINITION OF REMISSION?

For the most part the responses reflected the unique version of PRP.  It seems that the general consensus was not having the symptoms that were the most painful in terms of body, mind and spirit.

David Steckinoin remission since 11/2008

My skin was back to normal and I could sweat.

Tom Holderin remission since 10/2008

A return to normalcy; physically, mentally, and emotionally. No more regular visits to the dermatologist No more, “well, let’s try this treatment and see if if does any good.” NO MORE!  I have my life back, and I’m doing more today than ever before to live it to the fullest.

Vicki Rossin remission since 01/2013

I consider my remission as the day that my four-year-old grandson, Steven, said “Grandma your face is all white again!” He is still my biggest supporter.  Every once in a while when we are playing badminton or basketball or swimming in our pool, he will say “Grandma, remember when you were all red and you couldn’t play outside with me?  I’m glad that you’re white again”.

Within a few weeks the updated Remission Survey will be emailed to 217 PRPers already identified as in remission. Another 385 PRPers whose status is unknown will also be invited to participate.

In addition, when a PRPer completes the newly revised PRP Census form and indicates that they are in remission, the questions from the Remission Survey will “suddenly appear”. It’s a smart survey!

Published in On the Road, June 1, 2014 pages 10-11

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