What Works for Me

 (continued)

ITEM WW302
Ventilator Backup:  Are Your Prepared?

Margaret E. Davis (med43@earthlink.net) is a respiratory polio survivor who uses noninvasive nasal ventilation at night and mouth intermittent positive pressure ventilation during the day.

"We live in central Arkansas where tornadoes are common; being without power is a given. We have a large gasoline generator at home. It will power my ventilator and my husbandxs bilevel unit and a few other appliances for eight hours before we need to refill it. I can easily start it myself by turning a key. Our van has an inverter hardwired to an auxiliary battery with two outlets. I can charge my wheelchair battery and my HT50® (Newport Medical Instruments) at the same time without any problems. At night, I use a Gold Seal® nasal mask (Respironics, Inc.), with the HT50. During the day, I use a mouthpiece with the HT50. My husband, diagnosed with central sleep apnea, uses the KnightStar®335 bilevel (Puritan Bennett) with a Profile® Lite nasal mask from Respironics, Inc..

Paul Kahn (cairokahn@aol.com) is editor of Disability Issues, a quarterly publication of the Community Information Network for Individuals with Disabilities, Boston, Massachusetts. Paul is a ventilator user due to centronuclear myopathy. 

"I have two PLV-100 ventilators that my home care company provides. I keep one by my bed. It is plugged into the house current. The other sits on a tray on the back of my wheelchair. It is powered by an external battery underneath the chair. My apartment building has an emergency generator that kicks in when the electricity goes out. It supplies current to certain public areas of the building. There is an outlet for the generator down the hall from my apartment. When the electricity goes out, I plug a long extension cord into that outlet and connect it to a power strip. Then I plug my bedside ventilator into the power strip.

"For my wheelchair ventilator, I rely on its internal battery to take over if the external battery fails. The internal battery will power the ventilator for close to two hours. I also have an Ambu® bag that I take with me whenever I'm away from home. I also have two suction machines. One is stationary and like my bedside ventilator, can be connected to the house current or the emergency generator. The other is portable and has a battery that I recharge regularly."


ITEM WW301
Bipap mouth dryness ...

Another solution from Dot P. ... "A gel-like substance called Oral-Balance is available without subscription. It comes in a toothpaste-type tube and, when mouth dryness occurs, a small amount squeezed on the tongue works well."

Another solution from Larry B. .... "What takes care of the dryness problem for me is a simple swig of water AFTER my BiPAP is put on at night, and just before I drift off to sleep."


ITEM WW300
The American Sleep Apnea Association (www.sleepapnea.org) publishes many education bulletins about sleep apnea. Two of them are also useful for people with neuromuscular disease who use assisted ventilation via a facial or nasal mask to help them breathe. The information on "Choosing a Mask and Headgear" is helpful (www.sleepapnea.org/resources/pubs/mask.htm). In general people with neuromuscular disease use bilevel units rather than CPAP units, but some people with neuromuscular disease may also have sleep apnea and the bulletin "Choosing a CPAP Machine" is helpful. (www.sleepapnea.org/resources/pubs/cpap.htm).

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