Posts Tagged support

COPD Awareness Month – Still Going Strong

November 20th, 2014 | Author: Katelyn Turner

It has been a busy month for us at the COPD Foundation. As you probably know, November is National COPD/Alpha-1 Awareness Month! How have you been raising awareness of COPD to your friends, family, and community?

We still have more than a week of COPD Awareness Month left! Don’t forget to wear ORANGE, the official color of COPD, and take part in COPD Foundation activities: COPD360ourcommunityonline_AAcard

Use #Tell10 to encourage your friends and family to tell at least 10 people every day about this devastating disease.
#Tell10 people about COPD every day for COPD Awareness Month. Strength in numbers: because we are stronger when we work together.

Pam DeNardo: A Decade of Helping Individuals with COPD

August 11th, 2014 | Author: Fabiana Talbot

This excerpt was drawn from the Spring 2014 issue of the COPD Digest.

When Pam DeNardo was diagnosed with COPD in 1999, there were scant resources available. She had to do her own research—teaching herself about medications, inhalers, and pulmonary rehabilitation, a task she said was daunting and scary without guidance or any references.

“I was terrified. Mpamdenardoy doctor said that at best I had three to five years to live,” DeNardo says. “’Incurable’— that’s all I could think of. Except, I couldn’t die. I was a single mother of two, I had a mother in her 90s who needed me, and a small insurance business that had just turned the corner and was making money. I simply could not be sick, and I could not die.”

Today, DeNardo is one of 35 associates who work on the COPD Foundation’s C.O.P.D. Information Line. When it was created in 2007, they averaged 300 inbound calls every month. Today, the associates field anywhere between 5,000-6,000 contacts each month. DeNardo was one of the driving forces behind the creation of the Information Line.

“Today, patients are still scared. You can hear that when they call the Info Line. The best thing is when I get a call from a newly diagnosed patient, because I can tell them I’ve had the diagnosis for 15 years, and you can hear the relief in their voices,” she says. “The Information Line, to me, is the culmination of everything I believed in.”

phoneIn 2007, she met with Bill Clark, director of outreach programs at the COPD Foundation, and John and Diane Walsh, and together, they recruited patients, set up the toll-free line for support and information, and the Information Line was born.

“The Foundation will continue to grow, and I believe it [a cure] will happen. And I hope to be there. I’m working hard to be there,” DeNardo says.

Read on about Pam’s journey on the COPD Digest website.

Life-Changing Diagnosis

April 1st, 2011 | Author: Katelyn Turner

Tom Corron knows what it’s like to feel depressed after an Alpha-1 diagnosis. But instead of sitting back and doing nothing, he’s taken control of his life, and has created two different support groups in two different cities.

“It was devastating thinking about the things that I could no longer do, but then I realized that this is a life-changing diagnosis,” Corron says. “Realizing that what you have has no cure and only treatment [makes you think] ‘what does that mean?’ A pulmonologist told me at the time that I would probably need a double lung transplant in about 5 years, but I’m still a long way from a lung transplant.”

After his diagnosis in 2005, Corron received a phone call from AlphaNet coordinator Doug Turley who shared with Corron his life story.

“He told me he was diagnosed way too late, and went through a double-transplant, and now he works for AlphaNet. I was able to ask him all the questions I had, and he pointed me to the Alpha-1 Association and their education days, to get involved in the community,” Corron says.

Tom Corron

Corron attended some of these education days, meeting Peg Iverson, another Alpha whose mother had passed away from Alpha-1.

“At the time, I was living in Des Moines and she wanted to create a support group, so I helped her,” Corron says. “And when I moved to Fort Wayne last year, I decided to start a support group [of my own].”

In 2009, Corron was appointed to the Board of Directors of the Alpha-1 Association.

To start a support group, Corron suggests starting with putting together a mailing list and reaching out to your doctor, church and others in the community to help spread the word. He also asked industry partners to sponsor the meeting.

“We received very positive responses from people. They were so glad to finally meet someone else who was going through the same things they were,” Corron says. “The first meeting we shared who we are, why we’re doing it, and let them know about resources available. During the second meeting, he had an Alpha speak who had received a lung transplant and he talked about that…we also agreed to open up the meeting to individuals with COPD, caregivers and significant others.

Corron says that before his diagnosis, it took a number of years and doctors to figure out what he actually had.

“I finally had a name for what I was dealing with and it was a relief to have it figured out,” Corron says. “I had asthma as a kid and was always dealing with frequent exacerbations, but I didn’t know what they were. I felt like I was getting old too fast; I couldn’t walk or run anymore.”

After creating the Fort Wayne, IN support group, Corron has also begun one in Chicago, which will have its first meeting Saturday April 9, 2011 at Coram Specialty Infusion Services Office.

“I really enjoy the support group experience as a patient—learning how to take care of yourself and the education,” he says. “If you want to start your own support group, talk to the Alpha-1 Association and the staff there can help you contact other group leaders.”

The main message that Corron wants to get across is that Alphas and individuals with COPD should never feel alone.

“There are many people out there willing to help. As far as new people being diagnosed, they should get involved in education days—that’s where the information is, and the latest and greatest news of what’s happening,” he says. “You’ll get a lot of your questions answered and you will feel comfortable knowing that you have the right connection.”

The COPDF Annual Awards and Recognition Benefit, Dec. 9th!

December 1st, 2010 | Author: Katelyn Turner

Photo By Richard Termine

‘Tis the Season…for our Annual Awards and Recognition Benefit! Read more…

Dennis Wright: Finding Trust and Comfort

November 19th, 2010 | Author: Katelyn Turner

When Dennis Wright was first diagnosed with COPD in 2003, he wasn’t given Read more…

COPDer Barbara Hlatky Leans on Family, Friends, Music

September 17th, 2010 | Author: Katelyn Turner

Barbara Hlatky says it was two years ago when she awoke with severe pains in her back. Read more…

Spread COPD Awareness via U.S. Postage Stamp!

September 8th, 2010 | Author: Katelyn Turner

This blog post was written by Lori Palermo. Read more…

A COPDer Makes a Tough Decision for Health Care

September 6th, 2010 | Author: Katelyn Turner

For privacy purposes and at the request of the interviewee, we have refrained from Read more…

COPDers Get Together, Get Moving

August 18th, 2010 | Author: Katelyn Turner

As a COPDer, sometimes you may ask, “What can I be doing?” Read more…

The Lunch Bunch

August 6th, 2010 | Author: Katelyn Turner

What’s better than getting together with friends over good food and good conversation? Read more…