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.

It’s Too Darn Hot!

August 5th, 2014 | Author: COPD Coach

Dear COPD Coach,

I try to stay as active as possible, but it has been extremely hot and humid, making it hard to breathe.  What are some things I can do inside to stay active but cool?

-Doing my best

Dear Doing my best,

If there is one thing that is true with COPD, it is that it affects people in different ways.  Some COPD patients are not able to handle hot and humid environments, while others cannot handle extreme cold weather.  Many cannot handle both, and some do not experience any difficulty with either one.

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(thechart.blogs.cnn.com)

I am one of those who cannot handle either extreme hot and humid weather, but I fare far worse in very cold weather.  In any case, hot weather, especially accompanied by high humidity, and cold weather below freezing will cause many with COPD to experience problems breathing.  Many COPD patients can tell you when the weather is changing simply based of the quality of their breathing!  Many people with COPD also experience problems on windy days, as the wind velocity produces resistance – worsening breathing.  High winds combined with extreme hot humid air or cold air, can often cause your breathing to significantly decline.

During periods of extreme weather, time your outside activities during moderate times, and remain in a more climate environment (indoors) during the worst of the weather.  If you do venture out, limit your exposure to extreme temperatures as much as possible and dress appropriately.

As for activities indoors during weather extremes, you might try simple exercises, like chair exercises or lifting small weights (talk with your doctor or respiratory therapist as to what type of exercises would provide you with the most benefit).  During hot weather, try and have at least one room with an air conditioner that you can retreat to if you begin to feel warm.

It is important to note that showering or bathing in hot water can actually simulate hot, humid weather and cause you to become breathless.  If you become breathless while showering or bathing, use colder water and make sure your bathroom has an exhaust fan!

In all, avoiding weather extremes as much as possible will make your breathing much easier.

Stay Cool,
The COPD Coach

Ask the Expert is aimed at providing information for individuals with COPD to take to your doctor, and is not in any way intended to be medical advice.

If you would like to submit a question to the Coaches Corner email us at coachescorner@copdfoundation.org. We would love to hear your questions and comments. You can address your emails to any of the following: COPD Coach, Caregiver Coach, COPD Doctor or COPD RT.

Prevent Accidents with COPD

July 30th, 2014 | Author: COPD Coach

Dear COPD Coach,

My mother has COPD and lives alone. I want to do what I can do help her. Do you have any suggestions on how to make her home safer to prevent accidents while I’m away?

-Accident-free

Dear Accident-Free,

I can certainly understand your concern about your mother living alone. Here are a few ideas that might ease your concerns:

1. Consider purchasing an emergency medical alert system for you Mom. This would include a pendant she could wear to summon help if it would become necessary.

2. Organize her medications, listed by day and time so you and she can track use.

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(homehelpersphilly.com)

3. If she is on Oxygen, keep an emergency cylinder accessible and instruct her on its use. Make sure that her oxygen hoses are long enough for her to be able to get to areas of the house she needs to use.

4. Make sure phones are located in convenient locations.

5. Install safety bars in the bathroom, specifically by the tub and toilet, and slip proof rugs and bath mats. Also consider getting a tug and shower chair.

6. Purchase shower brushes to aid in bathing.

7. Bathing can sometimes cause breathlessness, purchase a terrycloth robe she can wear until she feels up to dressing.

8. Set regular times during the day to call and check on her.

9. Keep a list of important numbers by the phone should an emergency arise.

10. Keep a list of all medications she is taking and the dosages.

11. Try and keep ready-made or frozen meals available for times she doesn’t feel like cooking.

12. Become educated about COPD. Learn to spot an exacerbation before it becomes severe.

Being a caregiver can be a difficult but rewarding task. The more you learn about COPD, the more proactive you will become in your mother’s care.

Best regards,
The COPD Coach

 

Ask the Expert is aimed at providing information for individuals with COPD to take to your doctor, and is not in any way intended to be medical advice.

If you would like to submit a question to the Coaches Corner email us at coachescorner@copdfoundation.org. We would love to hear your questions and comments. You can address your emails to any of the following: COPD Coach, Caregiver Coach, COPD Doctor or COPD RT.

Meet Your Member of Congress this Summer!

July 17th, 2014 | Author: Aimee Bulthuis

It’s that time of year again—August District Visits! Each August Congress takes its annual recess to return to their districts and meet with constituents, providing us with a great opportunity to raise awareness for Alpha-1 and COPD and start building a relationship with your member of Congress.

This year is unique because it’s a mid-term election year, meaning 1/3 of the Senate and all House of Representative members are up for election. This is a great chance to have your voice heard and help us change our nation’s health policies.

The COPD Foundation will help you in every way we can: scheduling the meeting, locating others to participate with you, providing talking points, mailing you leave behind packages, but we really depend on your involvement to make these meetings a success. To get involved please contact Rebecca Rudolph either by email, rrduolph@copdfoundation.org or by phone 866.731.2673 ext 451.

Steps for Meeting with Your Elected Officials

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