YouTube Channel Launches New option to learn about breathing muscle weakness This Spring, Breathe with MD, Inc. Founder and President Andrea Klein published a video summarizing her journey to begin use of noninvasive ventilation. What followed was a library of nearly 20 items, a combination of animated graphics on

key terms and concepts, and other videos about topics related to breathing muscle weakness in Neuromuscular Disease (NMD).

“We are just getting started with this resource, so stay tuned for more helpful video content,” said Klein. “Obviously we are not trying to offer medical advice, but rather educational videos and graphics that will help individuals understand this part of their NMD progression. We want to equip them to be advocates for their own appropriate care, reduce their anxiety, and help them know they are not alone.” she continued.

Log onto YouTube, and subscribe to the channel at https://www.youtube.com/channel/UCD4Bz8ZIFUojIG4iDe8Syyg, so you don’t miss a single upload.

Do you have an idea for a video or a topic related to breathing muscle weakness you would like to see addressed in video format? Tell us at BreathewithMD@Charter.net, or send us a Private Message on our Public page at facebook.com/BreathewithMD.

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Have MPV Will Travel Mouthpiece ventilation can get you on the go pg. 2

Community Feedback What ventilation means pg. 4

Join the Movement Ways you can get involved pg. 4

Featured Resource ventusers.org pg. 5

2018 Q4 / ISSUE 1 OCTOBER, 2018

One Breath at A Time Breathe with MD, Inc. Quarterly Newsletter

Have MPV Will Travel A portable option for daytime ventilation

If you’re dependent upon up to 24/7, non-invasive nasal ventilation, you may feel like you are trapped or spinning your wheels. Or maybe you find that soon after you turn off your nasal ventilation in the morning, you are short of breath and/or exhausted. Without your bi-level ventilation, you eventually feel increasingly fatigued and may experience daytime sleepiness, headaches, or difficulty concentrating.

With the option of mouthpiece ventilation (MPV), you may find you’re no longer a “hostage in your own home” and can be freed from the exhaustion caused by being away from mechanical ventilation. It’s no exaggeration to say that MPV can be life-changing for many who live with NMD.

If you have no or limited mouth (bulbar) muscle weakness and can form a lipseal (close your lips) over an angled mouthpiece or straw, MPV may be your ticket to get out and about and feel energized again. MPV has been a blessing for many members of the Breathe with MD Support Group and has led to an enhanced quality of life. Some report that MPV allows them to continue working a full time job outside the home. Others are able to enjoy family outings, travel, and attend college courses outside the home. One member is able to be an

activist with a DC disability advocacy group. She participates in sometimes lengthy demonstrations at Capitol Hill. All of these support group members’ activities would be hindered without access to daytime assisted ventilation. Imagine the possibilities if mechanical ventilation with an electrical outlet was no longer limiting your daytime activities outside the home! Imagine if your ventilation empowered you to do what you love!

How does it work?

MPV allows you to take a series of small breaths from an angled mouthpiece or straw. When these small “sips” of air are combined in succession, they can fill the lungs with air. This process is sometimes referred to as “air stacking” or “stacking breaths.”  When the

lungs are full, the user exhales the air outside the mouthpiece either with their nose or their mouth.

Starting MPV does require some training. You must learn to sip air from the mouthpiece and at the same time prevent air from leaving your nose. This is done by using your soft palate to block off the back of the throat, keeping the air from going out of your nose. This is typically learned in a matter of minutes.  

What are the advantages?

MPV allows you to talk, eat, and with a battery operated device go anywhere outside the home. It also relieves any pressure sores and discomfort that lengthy use of ventilation masks may cause. It addresses daytime shortness of breath, fatigue, excessive sleepiness, mental fog, and can normalize blood gases.

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What are the disadvantages?

Some who use MPV may find they need to take multiple sips within a minute, every minute. This requires a conscious effort, and when one is concentrating on another task, it can become burdensome. Use of glossopharyngeal breathing (also known as “frog breathing”) can counter this disadvantage and allow the individual to supplement MPV breathing with gulps of air taken outside the mouthpiece. This results in fewer sips needed from MPV. To “frog breathe” you use your mouth and throat muscles as a pump to push air into the lungs. Learn more on glossopharyngeal breathing in the video “Glossopharyngeal Breathing” by CANVent Ottawa at youtu.be/9OswSaTG71I.

What’s required?

• A portable ventilator with batteries to support the length of time the individual intends to use the device away from an electrical outlet  

• A volume support mode on the ventilator, if the user intends to air stack (sip small breaths in succession to fill the lungs) 

• An interface (15mm or 22mm angled mouthpiece or straw)

• A disposable ventilation circuit with at least a bacteria filter, tubing, and the interface (mouthpiece or straw) with any necessary couplers and adapters

Possibly needed:

• Miniature flex tube to make an angled mouthpiece more easily bend toward the lips

• Gooseneck tubing assembly arm for hands-free breathing  

• Carrying case for ventilator

• Hooks or a mounted rack or shelving unit on the back of the power chair to hang the ventilator

Unfortunately, in the US, the number of individuals with NMD who are using MPV is surprisingly low. This is in part due to the lack of information about it among patients, caregivers, and physicians. The individual who may benefit from MPV may have to ask for it or advocate to get a physician to order it. This was the case for Breathe with MD, Inc.’s Founder and President. Klein had to ask her NMD specializing pulmonologist if she might be a candidate for MPV and if she could give it a try.

An additional barrier to use of MPV is the lack of knowledge about it within some respiratory home care companies. However, if the company supplies Philips Respironics products, they should be able to contact their regional Philips Respironics representative for documentation and possibly training on the Trilogy 100 MPV mode. It is in the respiratory home care company’s best interest to learn MPV, as it can become another source of revenue for them.

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More information on MPV is available in the scholarly article, “Mouthpiece ventilation and complementary techniques in patients with neuromuscular disease: A brief clinical review and update” by Tiago Pinto, Michelle Chatwin, Paolo Banfi, Joao Carlos Winck, and Antonello Nicolini and is available at http://breas.com/wp-content/uploads/2014/10/MPV-for-NMD-A-brief-clinical-review-and-update-Chron-Respr-Dis-2016.pdf.

Thank you to Beth Fox, Laura Halvorson, Annah Mobus, and Andrea Klein who shared photos for this article.

Community Feedback We asked our community what assisted/mechanical ventilation means to them. Here is what they had to say.

“Life”

“Freedom! The years I spent in the hospital with chronic respiratory failure. It was awful.”

“The confidence with which I can move in the world even with all the "scary" (lol) equipment. It's hard to describe how that feels. Except that it's been freeing.”

“My mind is free of the fog of carbon dioxide poisoning. I can think again.”

“It saved my life. I wouldn’t be here today without it, and I have so much life left to live.”

“My trach means I have a distinct lack of worries.”

“It’s not an invasive tube with massive circuits, it never was to me. It gives an infinite amount of possibilities I'd never have. It gives me a life I wouldn't be able to live otherwise. It lets me touch lives I wouldn't have otherwise.”

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JOIN THE MOVEMENT: WAYS TO GET INVOLVED Breathe with MD, Inc. is a nonprofit corporation in Tennessee, USA that has applied for federal income tax exemption. One hundred percent of our budget comes from donor contributions, and all of our staff and board is volunteer-based. Most work full time outside the home.

That being said, Breathe with MD, Inc. is a part time endeavor with opportunities for volunteers!

We need:

• Individuals to seek applicable published scholarly article PDFs we can quote and link to on social media

• Individuals to share their story as it relates to breathing muscle weakness, assisted ventilation, and/or mechanically assisted cough for use in our publications

• Individuals to engage, share, and retweet our social media content to further our reach to others

• Individuals to moderate our support group and contact pending members who don’t respond to pending members questions

There are plenty of ways you can get involved with Breathe with MD, Inc.! Message us at BreathewithMD@charter.net to inquire about volunteer opportunities.

Featured Resource Ventusers.org

When the idea for Breathe with MD was conceived, information on the Internet about breathing muscle weakness in NMD was limited. At the time, web resources focused on one of the two conditions most commonly known to cause respiratory muscle weakness: ALS and Duchenne MD. Today we are thrilled to see many organizations sharing reliable information online, some that is not focused on any one form of NMD.

The website ventusers.org is the online resource of International Ventilator Users Network, an affiliate of Post-Polio Health International, a 501(c)3. Their mission is to enhance the lives and independence of home ventilator users and polio survivors through education, advocacy, research, and networking. We believe what their website offers can help our Breathe with MD community.

They produce the Ventilator-Assisted Living newsletter, a Home Ventilator Guide, and an informative page on their website, called “Home Mechanical Ventilation: The Basics.” They have hosted educational conference calls

and completed a project called “Take Charge, Not Chances” that resulted in a portfolio of printable forms (in English and Spanish) that can help adult ventilator users be prepared for an emergency or planned hospital stay.

Take a look at their site; we think you will learn a lot!

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