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18 Fearless Years


Gary Barg - Editor-in-chiefOn Being A Family Caregiver CEO:
Exocrine Pancreatic Insufficiency


Sometimes, through greater powers than our own, situations are placed in front of us that help to shape our lives and yet it may take many years to figure it all out. Three decades ago this month, when I was a video producer, we released a training series for therapists working with young patients living with Cystic Fibrosis (CF) to teach them the proper techniques for Chest Physical Therapy (CPT).  If you’ve never heard about it, among other treatments, CPT involves pounding the chest and back over and over again to dislodge mucus from the lungs. Producing that series affected me deeply and I have always remembered the strength and tenacity of the therapists as well as the little patients that we interviewed for the program. I know in my heart that I am a better person for having spent those months watching professional and family caregivers as well as these littlest warriors work together to battle these effects of CF.

One decade ago this month, we faced a personal tragedy in the Today’s Caregiver family, when our managing editor, Nancy Schonwalter’s father Lee Sosower, passed away after battling cancer. You would have to know Lee to understand how inspirational it was to watch as he waged war with cancer in his own inimitable way. At eighty years of age, you could have sworn he was sixty-two, at most. I also know that I am a better person for having known Lee for all these years, and that when times are tough, I try hard to summon the willpower, humor and spirit that personified the man and that he shared with the young people living with CF that I met so many years ago.

And as if the fates were telling me something, during the very time of year that the CF video was released and that we said our final farewells to Lee, I learned the topic of this communique would be something that ties people living with CF and Lee together.

 Exocrine Pancreatic Insufficiency (EPI)

Severe pancreatic insufficiency occurs in cystic fibrosis, chronic pancreatitis, pancreatic resection (surgical removal) as well as pancreatic and gastric cancers.  Certain gastrointestinal diseases such as celiac disease, lupus, insulin-dependent diabetes, stomach ulcers, and Crohn’s disease may also contribute to the development of pancreatic insufficiency.

Symptoms of EPI

As a result of EPI, your loved ones body can’t absorb the nutrients needed, and can experience symptoms such as abdominal pain and bloating. diarrhea, loss of appetite, and weight loss.

With EPI as with any caregiving situation, two things apply. The first is that knowledge is power and the second is that it is extremely important to find a group of family caregivers who are dealing with the same issues as you that you can open up to in a confidential and supporting setting.  We have received such positive response a few weeks ago regarding our friends at Communispace’s support community for schizophrenia caregiving, that it is good to know that they in partnership with a leading pharmaceutical company, have also created a private online community for caregivers with loved ones living with digestive disorders.  This confidential Web site was established to provide caregivers with the ability to come together to share their experiences and needs as well as learn from one another.  I am also glad to see that as with the schizophrenia community, the membership survey for the digestive disorder caregiving community is confidential.

I would like to say that the lessons of these past decades have been received loud and clear. And also, thank you.


  Gary Barg
Today's Caregiver magazine

Friday February 08, 2013


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