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Breathing and Sleep Symposium

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					                                                                        Breathing and Sleep Symposium
                                                                        Joan L. Headley, Executive Director, Post-Polio Health
                                                                        International, Saint Louis, Missouri, director@post-polio.org




                                                                        T
                                                                              he setting was the Salk Institute for
                                                                              Biological Studies designed by architect
                                                                              Louis Kahn. The topics of the November 1
                                                                        half-day symposium were breathing problems and
                                                                        sleep problems of individuals with neuromuscular
                                                                        conditions and solution options for them.
Salk Institute for Biological
Studies, La Jolla, California                First to present was Geoffrey Sheean,              University of Washington Medical
                                                            ,
                                             MBBS, FRACP Director, Neuromus-                    Center, Seattle, Washington, to pro-
                                             cular Division, Clinical Professor of              vide solutions to breathing problems,
                                             Neurosciences, University of California,           citing several case studies. Both
                                             San Diego. His task was to explain                 presentations are available at
                                             the breathing mechanism and how it                 www.poliotoday.org.
                                             is affected by neuromuscular diseases.             Lechtzin was challenged to explain
                                             People with ALS, muscular dystrophy                in one sentence why using oxygen
                                             and post-polio can have new weak-                  only is not recommended for people
                                             ness of the diaphragm, the major                   with neuromuscular conditions. It
                                             breathing muscle. For some, throat                 took more than one sentence and
                                             and tongue weakness can cause                      bears repeating:
                                             obstructive sleep apnea (OSA). For                 “We all rely on the concentration of
                                             others, the brain fails to send the                CO2 levels in the blood to stimulate
                                             message to breathe, and central                    breathing. If someone has weak
                                             sleep apnea is diagnosed. Sheean’s                 breathing muscles, he or she may
                                             presentation can be viewed at                      chronically underventilate, which
                                             www.poliotoday.org, a new site                     results in a chronically high CO2.
                                             created by the Salk Institute.                     Over time the ability to sense elevat-
                                                        Noah Lechtzin, MD, MHS,                 ed CO2 diminishes.
                                                             ,
                                                        FCCP Pulmonary &                        “We all rely to a lesser degree on low
                                                        Critical Care Medicine,                 oxygen levels to stimulate breathing.
                                                        Assistant Professor of                  However, someone with weak breath-
                                                        Medicine, Johns Hopkins                 ing muscles and chronically elevated
                                                        University School of                    CO2 may rely on low oxygen levels to
                                                        Medicine, Baltimore,                    stimulate breathing. If oxygen is given
                                                        Maryland, focused on                    without close monitoring and ventila-
                                                        how pulmonologists                      tory support, the breathing rate may
                                                        determine the cause of                  slow, or even stop.
                                                        breathing problems, i.e.,
                                                        what tests are used, and                “Most patients with neuromuscular
(L to R) Presenters Noah                                                                        conditions, in the absence of underly-
Lechtzin, MD, MHS, FCCP;
                                             on the importance of coughing and
                                             other ways to get rid of secretions in             ing lung disease, don’t need supple-
Geoffrey Sheean, MBBS, FRACP;
participant, Raouf E. Yuja, MD.              the lungs.                                         mental oxygen. If someone has under-
Photo credit: Sue Lau, Polio Survivors                                                          lying lung disease, oxygen absorption
Plus, Orange County, California
                                             Later in the day he teamed up with                 may be hampered and oxygen may be
                                             Louis J. Boitano, MS, RRT, RPFT,                   needed but should be added to the
                                             Northwest Assisted Breathing Center,               bilevel device or ventilator.”

4      VENTILATOR-ASSISTED LIVING        Winter 2009   Vol. 23, No. 4                                                       www.ventusers.org
                                                        Louis J. Boitano, MS, RRT, RPFT,
                                                        addressing the crowd




                                                     The Northwest Assisted
                                                     Breathing Center encour-
                                                     ages its patients to partner
                                                     with them in supporting
                                                     their own respiratory care
                                                     plan by using both the
Boitano’s take-away message was the
                                           home oximetry monitoring protocol
explanation of a protocol developed
                                           and IVUN’s “Take Charge, Not
by John Bach, MD, and Yuka Ishikawa,
                                           Chances” (www.ventusers.org/
MD, to reduce the potential for hospi-
                                           vume/).
talization due to respiratory infection.
He and Josh Benditt, MD, Northwest         Helen Kent, BS, RRT, Progressive
Assisted Breathing Center, University      Medical, Carlsbad, California, and
of Washington Medical Center, use          Diana Guth, BA, RRT, Home Respira-
this protocol with all of their neuro-     tory Care, Los Angeles, California,
muscular patients who have respira-        displayed numerous nasal and face
tory limitations.                          masks, which attendees could try.
                                           Several ventilator equipment exhibitors
Under this protocol, individuals are en-
                                           offered a close-up look at a range of
couraged to buy a finger oximeter to
                                           assisted breathing devices.
monitor their oxygen saturation level.
                                                                                                 Masks, masks and more masks.
                                           For the meeting, Guth updated her
Oximeters are available through                                                                  Guth describing an interface to
                                           article, “Masks, Part II: Noninvasive                 Leslie Smith, Sacramento Post-
Internet medical supply companies
                                           Interfaces,” first published in 2005.                 Polio Support Group.
for about $60-100. Be sure to pur-
                                           It is available at www.ventusers.org/
chase one that is FDA approved for
                                           edu/valnews/val19-3b.html.
human use.
                                           More than 150 individuals attended
To assure a good reading if circula-
                                           the symposium, co-sponsored by
tion is poor, either place hand in
                                           ResMed Corp. and the Salk Institute
warm water or wrap hand in a towel
                                           for Biological Studies. s
soaked in warm water before attach-
ing the device.
A normal oxygen saturation level is
96-98%. If symptoms of a respiratory
infection develop and oxygen satura-          (L to R) Gladys Swensrud, Co-
tion falls below 95%, pulmonary               Facilitator of the San Diego Polio
congestion may be developing. Indi-           Survivors, who had struggled to
                                              receive the appropriate diagnosis
viduals should do the following:
                                              and treatment for her breathing
1. Use either a manual hyper-inflator         problems, was the force behind the
   or CoughAssist® device to hyper-           symposium. She was assisted by
   inflate the lungs and to increase          Rick Van Der Linden, PPS Manager.
                                              Judith R. Fischer, IVUN Information
   cough support.
                                              Specialist, helped develop the pro-
2. Increase the use of mechanical             gram and served as moderator.
   ventilation as needed.                     Photo credit: Nancy Yates
3. Contact a physician and request
   a broad spectrum antibiotic for
   respiratory infections.

www.ventusers.org                                                         VENTILATOR-ASSISTED LIVING   Winter 2009   Vol. 23, No. 4   5