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					Empower        Educate              Enrich                WWW.ERMAG.ORG
$4.99 U.S.                                                    Volume 5, Issue 2
$6.99 CANADA                                   World’s Leading Respiratory Magazine




                 Photo courtesy of John More
                                                                    Contributors
                                                                                                                   Chris and Gwen Wigley
                                                                                                                   As a COPD patient, Chris Wigley faces challenges,
                                                                                                                   but does not allow them to inhibit his positive attitude.
                                                                                                                   With his wife Gwen at his side, who provides him
                                                                                                                   with caring support, the two embrace the opportunities
                             CONTRIBUTORS                                                                          and enjoyment that travel offer them. Thanks to
                                                                                                                   POCs, the Wigley are off across the nation, via rail!
 Fred Walsh                             St. Louis Children’s Hospital
 Jean Schmit                            Mayo Clinic
 Roxlyn Cole                            David McGovern
 Jean Rommes                            Trevor Scibner, Aeromedic
 Dr. Francis Adams                      Andrien Bledstein, I Can Breathe
 Gary Singleton                         Carol Baglia, Correct Breathing Concepts
 Holly Lockwood                         PHA Association
 Nick Jones
 Chris & Gwen Wigley,
                                        John More, American Medical Sales & Repair
                                        NIAID Food Allergy
                                                                                                                   Roxlyn Cole
 COPD Canada Patient Network            Holly Lockwood                                                             We so admire “Lyn” for her amazing fortitude
 Edward Grandi                          American Academy of Allergy,                                               and zest for life. She, Mike McBride and a cast of
 Alpha-1 Association                    Asthma, and Immunology
 John R Goodman, BS RRT
                                                                                                                   “can-do” oxygen patients and vendors takes us on
                                                                                                                   an inspiring ascent of one of Colorado’s most
                          ADVISORY BOARD                                                                           famous “14ners” . . . Mount Evans.
 Robert A. Sandhaus, MD, PhD, FCCP –
         Executive Vice President and Clinical Director Alpha-1 Foundation,
 Patrick J. Dunne, MED, RRT, FAARC— Healthcare Productions, Inc.
 Ed Grandi, Executive Director—American Sleep Apnea Assoc.
 Robert McCoy, BS, RRT, FAARC—Valley Inspired Products
 Mark Mangus, Sr, BSRC, RPFT, RRT,FAARC.—Pulmonary Rehab,
         Christus Santa Rosa Health Care, San Antonio, TX
 Brian Groskopf—Respiratory Consultant
 Barbara Rogers—NECA President and Board Chair
 Brian King—Region Clinical Manager, Apria Healthcare
 Vlady Rozenbaum, Ph.D.—COPD-ALERT
                                                                                                                   Jean Schmit
                                                                                                                   Jean shares an in-depth journey of her twin daughters
                                                                                                                   Maddie and Hallie. Maddie was born with Children’ s
  RUSH MY SUBSCRIPTION                                                                                             Interstitial Lung Disease (chILD). This devastating ill-
      To Everything Respiratory                                                                                    ness is a group of rare lung diseases found in infants,
                                                                                                                   children, and adolescents. There are different types of
                                                                                                                   chILD that vary in their severity and in their long term
 SPECIAL ISSUE PRICE!                                                                                              outcomes. In simplest terms, all types of chILD
                                                                                                                   decrease a child’s ability to supply oxygen to
   4 Issues for ONLY $9.99                                                                                         their body

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Name     ______________________________________________________
                                                                                                                   Fred Walsh
Address______________________________________________________                                                      In 1989, after experiencing many
____________________________________________________________                                                       lingering respiratory infections and being
City__________________________________________State __________                                                     re-diagnosed with asthma, Fred was finally
Zip   __________Email: ________________________________________
                                                                                                                   correctly diagnosed with Alpha-1. He is a
                                                                                                                   former high school teacher and building
K VISA           K Mastercard               K Discover              K American Express
                                                                                                                   contractor with a Master ’s degree in counseling.
Name on card: ________________________________________________                                                     Fred has been involved with Alpha-1 support
Credit Card #:     ________________________________________________                                                groups for ten years.
Expiration date: __________/ __________V-code: __________________

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4                           www.ermag.org • Vol. 5, Issue 2 2010                                                                                      1-877-376-2448
                                        FEEDBACK@ERMAG.ORG

Dear Editor:                                  Dear Editor,                                 Dear Holly,
FYI. Patients love your magazine.             My name is Kean Tran, and I am the            The cover was “different” than your usu-
                                              Public Awareness Director for                ally pretty face cover but I guess we do
Robert J. Redneck, MA, RRT                    PleuralMesothelioma.com. While I was         look sick inside. I was just shocked at
Harrington-McLaughlin Heart                   browsing through a number of health          first to see that poor woman but then I
and Vascular Institute                        and lung sites, I came across your website   read the article. She has been through so
University Hospitals Case Medical Center      and was very impressed by the informa -      much. Andrea is a very brave woman.
                                              tion you have listed.
                                                                                           Tina
Hello Holly,                                  Pleural mesothelioma is the most             San Francisco, CA
You do such great work and put a great        common type of mesothelioma, a rare
magazine together with so much useful         cancer that develops in the lungs. It is
info. Good luck on your new O2 for            almost solely caused by exposure to          Dear Editor,
Andy. I am truly sorry for the loss of your   asbestos, which was used in everything in    I am a widow for 14 years now. I am 61
friend. Thanks again for sharing my story.    children’s toys, household insulation, and   now and have been on oxygen for 8 years
                                              naval carriers. Our website has the most     24/7 and live alone with a very low FEV1
Andrea Timmons                                up to date and comprehensive information     of 18%. Life is different and very scary
Arizona                                       about Pleural Mesothelioma on the web        when you have to do it alone and you
                                              today.                                       learn to be as prepared as you can be for
                                                                                           any emergencies that might arise because
Dear Editor,                                  With information ranging from a              you do not have someone with you to
I am struggling with finding a mask for       complete list of symptoms, to treatment      help you out of a bad spot. I have had my
my CPAP unit that works. They all do          options, and steps to take after a           share of “bad spots” and have learned
great when I’m flat on my back that that      diagnosis.                                   from them but I am sure there are others
position is the worst for my sleep apnea.                                                  that maybe other people have had to face
Any other suggestions you might have.         Great insight Kean! Thank you for this       and conquer. If you think this is of inter-
Tell Holly hello. We miss her here in         information. We will add it to our links,    est, I could tell you some of my solo
Grand Junction and hope she is                and reader’s, guess what our next rare       learning experiences. Just one is that I
doing well.                                   lung disease will be.                        have learned the hard way that when you
                                                                                           have a breathing attack and/or a panic
Pat                                           Editor                                       attack...the empty house, the quiet, the
Grand Junction, CO                                                                         walls all seem to be closing in on you
                                                                                           and making both the breathing and the
                                                                                           panic worse. If I just hear a friendly
Dear Editor,                                                                               voice it usually helps. I have told a few of
I became a member of the Better                                                            my friends and family that if they
Breathers Club and I just got a copy of                                                    received a call in the middle of the night
Everything Respiratory (fall 2009) and I                                                   (or day) and can only hear breathing...
see that Larry C. of Mansfield, Ohio,                                                      please do not hang up as it is not an
trims his nose hose with nail clippers.                                                    obscene phone caller...just me huffing and
This something new to me. How does                                                         puffing and needing them to talk to
one trim the hose and for what purpose?                                                    me...and not ask me a bunch of questions,
                                                                                           but tell me to be calm, “smell the roses
Eric Gande                                                                                 and blow out the candles” and talk about
Stuart, FL                                                                                 their day at work or whatever until I am
                                                                                           better. You have founded a “winner” I
Dear Eric,                                                                                 believe ... which will help many.
You just get new nail clippers and clip the
nose part so it fits you better.                                                           Ruth,
                                                                                           Long Island, NY
Editor




6                 www.ermag.org • Vol. 5, Issue 2 2010                                                            1-877-376-2448
                                                  Respiratory Hero - Fred Walsh
                                              finding little available information or sup -   contact even if most of it is via phone.
                                              port for this disease prompted his brother      The job suits his declining lung function,
                                              John, to dedicate his efforts to making a       allowing him to work at home and attempt
                                              difference. As a result, he helped co-          to get on a lung transplant last. “If I were
                                              found both AlphaNet and the Alpha-1                   to get my new lungs tomorrow, I
                                              Foundation.                                            would continue doing what I’m
                                                                                                     doing now but maybe travel a bit
                                              Walsh                                                   more.” Says Walsh, “My wife
                                              began                                                   would like that as well.”
                                              working
                                              for                                                     I asked Walsh if he could provide
                                              AlphaNet                                                 our readers with some words of
                                              part-time in                                             wisdom. Overall Walsh advises
             By Holly Lockwood
                                              1995. He                                                  you exercise and stay positive.

W      hen I first asked Fred Walsh to be
       this issue’s Respiratory Hero, he
                                              became one
                                              of the first                                               “Well, I have been blessed
being the humble man that he is replied,      AlphaNet                                                   being a glass half full kind of
“I am not a hero, come with me and I’ll       Coordinators                                                guy. says Walsh, “The most
introduce you to a real respiratory hero.”    in 1997.                                                    important thing is walking and
He led me to another person, explaining       Walsh has been                                               doing resistive exercise after
that this individual was the real hero. I     involved with                                                checking with your doctor of
finally convinced him he was the hero I       Alpha-1 support                                               course.”
was looking for. The problem I have           groups for ten
found with interviewing heroes is that        years. His activ-                               If you have never been through pulmonary
they’re hard to track down. Unless I was      ities still include                             or cardio rehabilitation, get your doctor to
                                                                    Fred and John Walsh
a reporter with CNN or a big network          some home                                       write a prescription for it. It’s the best
calling to raise awareness for their disease, renovations projects but he spends a lot of     thing you’ll ever do for yourself.
they’re too busy- being heroes.               time participating on Alpha-1 related
                                              activities: education days, area and region -   Though each Alpha is at a different age,
In 1989 after experiencing many lingering al support group meetings, and Team                 stage and lung function, AlphaNet has
respiratory                                                            Alpha. A diagno-       both the information and a wide variety of
infections and                                                         sis of Alpha-1         tools to assist in managing each and every
being re-diag-                                                         really impacts         Alpha’s needs.
nosed with                                                             your entire family,
asthma, Walsh                                                          and his family has
was finally                                                            joined the cause.
correctly diag-                                                        His wife Pam
nosed with                                                             designed and pro-
Alpha-1.                                                               duced the first
Since his                                                              marketing materi-
mother died of                                                         als, the AlphaNet
emphysema at                                                           newsletter and the
the age of 49,                                                         original founda-
he had become                                                          tion brochures and
suspicious that                                                        survey materials.
there might be                                                         Both Walsh’s wife
a connection to         Twins John and Fred with their father          and two daughters
his health                                                             Chase and Kailey
issues. Walsh’s twin brother John and his     have participated over time in meetings
sister Susan were subsequently diagnosed. and community education activities.
Walsh and his brother participated in a 6-
year follow up study with the National        According to Walsh he found his niche           Fred Walsh (right), and
Institute of Health (NIH) that connected      long ago working as a Coordinator for           his brother John walk the George
them with other Alphas. The frustration at AlphaNetand loves personal one on one              Washington Bridge Alpha-1 event




16                www.ermag.org • Vol. 5, Issue 2 2010                                                               1-877-376-2448

				
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