Activity Feed

Hello! Many of us are housebound due to the severe cold weather
conditions throughout the USA. Scrolling
through social media or watching the weather reports all day is not good for
us. Diversional indoor activities are therapeutic pastimes. Hopefully, there’s
something on the list below for you to enjoy.

Learn a new skill, such as knitting or painting. Cooking and
baking are great activities to do on a snowy day. You can try out new recipes or
make some of your favorite comfort foods. Search online for some winter recipes
or check out this list of winter comfort foods.

Reading -you can curl up with a good book or magazine.
Practice some relaxation techniques like meditation, yoga, or deep breathing
exercises to help you unwind and de-stress. There are many free programs on
YouTube or free apps.

Movie Marathon- grab some blankets, popcorn, and your
favorite movies for a cozy movie marathon or watch old TV shows. I have been
watching Johnnie Carson reruns that are very entertaining.

Board Games and Puzzles are classic snow day activities that
never get old. Try some arts and crafts if you are feeling creative. Check out
winter craft ideas online for some inspiration.

Treat yourself to a home spa day? A warm bath with some
Epsom salts and essential oils, homemade face masks and body scrubs.

Writing is a great way to spend this alone time because you
can express your thoughts while also having a creative outlet. There are so
many different methods that you can use to improve writing skills, such as
journaling, blogging, and writing a short story. Getting your thoughts on paper
can be therapeutic, whether you write about things that are happening in your
life or someone else's life. I hope that
you enjoy some activity to take your mind off what you cannot control. Do you
have a favorite pastime activity?

Hello! Many of us are housebound due to the severe cold
weather conditions throughout the USA.  Scrolling through social media or watching the weather reports all day
is not good for us. Diversional, cozy ,indoor activities are therapeutic pastimes. Hopefully, there’s something on the list below for you to
enjoy.

·
Learn a new skill, such as knitting or painting.


·
Cooking and baking are great activities to do on
a snowy day. You can try out new recipes or make some of your favorite comfort
foods. Search online for some winter recipes or check out this list of winter
comfort foods.

·
Reading -you can curl up with a good book or
magazine. Practice some relaxation techniques like
meditation, yoga, or deep breathing exercises to help you unwind and de-stress.
There are many free programs on YouTube or free apps.

·
Movie Marathon- grab some blankets, popcorn, and
your favorite movies for a cozy movie marathon or watch old tv shows-I have
been watching Johnnie Carson reruns that are very entertaining.

·
Board Games and Puzzles are classic snow day
activities that never get old. From Monopoly to Scrabble, there’s a game for
everyone.

·
Try some arts and crafts if you are feeling
creative. Check out winter craft ideas online for some inspiration.

·
Treat yourself to a home spa day? A warm bath with some Epsom salts and
essential oils, homemade face masks and body scrubs.

·
Writing is a great way to spend this alone time
because you can express your thoughts while also having a creative outlet.
There are so many different methods that you can use to improve writing skills,
such as journaling, blogging, and writing a short story. Getting your thoughts
on paper can be therapeutic, whether you write about things that are happening
in your life or someone else's life.  I hope you can make the best of this time indoors. Do you have a favorite diversional activity to share with the group?

Hello! Extreme cold temperatures are affecting many parts of
the USA. Below is some basic information on hypothermia and frostbite.

Hypothermia- Cold, dry air can trigger bronchospasm, coughing,
chest tightness, and shortness of breath. People with already-limited lung
function may feel sudden fatigue, dizziness, and worsening breathlessness. Cold
exposure can weaken immune defenses in the airways. Thickened mucus becomes
harder to clear → higher risk of exacerbations or infections.   Hypothermia early symptoms: Shivering that may stop as it
worsens

• Slurred speech, confusion, or brain fog

• Rapid breathing at first → slow, shallow breathing later

• Blue or pale lips/fingertips.

Frostbite most often affects an individual’s fingers, toes,
nose, and ears. Respiratory patients are at higher risk because of reduced
circulation from chronic illness or medications. Also, fatigue may delay
noticing symptoms.

Early frostbite signs: Numbness or tingling

• Skin turning pale, lighter color

• Loss of fine motor control

Cold-weather protection that actually helps: Cover your airways-wear
a scarf, gaiter, or mask over nose & mouth→ warms and humidifies inhaled
air. Protect extremities with mittens, gloves, cover your ears fully, wear
insulated socks, and layer your clothing.

Please stay warm and safe throughout this cold spell. For more
information, please see the link below: https://my.clevelandclinic.org/health/diseases/15439-frostbite

Hello! Extreme cold temperatures are affecting many parts of
the USA. Below is some basic information on hypothermia and frostbite.

Hypothermia- Cold, dry air can trigger limited lung
function may feel sudden fatigue, dizziness, and worsening breathlessness.

Cold exposure can weaken immune defenses in the airways.
Thickened

mucus becomes harder to clear → higher risk of exacerbations
or infections

Hypothermia early symptoms: Shivering that may stop as it
worsens

• Slurred speech, confusion, or brain fog

• Rapid breathing at first → slow, shallow breathing later

• Blue or pale lips/fingertips.

Frostbite most often affects an individual’s fingers, toes,
nose, and ears. Respiratory

patients are at higher risk because of reduced circulation
from chronic illness

or medications. Also, fatigue may delay noticing symptoms.

Early frostbite signs: Numbness or tingling

• Skin turning pale, lighter color

• Loss of fine motor control

Cold-weather protection that actually helps: Cover your airways-wear
a scarf, gaiter, or mask over nose & mouth→ warms and humidifies inhaled
air. Protect extremities with mittens, gloves, cover your ears fully, wear
insulated socks, and layer your clothing.

Please stay warm and safe throughout this cold spell. For more
information, please see the link below: https://my.clevelandclinic.org/health/diseases/15439-frostbite

Hello! Extreme cold temperatures are affecting many parts of
the USA. Below is some basic information on hypothermia and frostbite.

Hypothermia- Cold, dry air can trigger bronchospasm,
coughing, chest tightness, and shortness of breath. People with
already-limited lung function may feel sudden fatigue, dizziness, and worsening
breathlessness.

Cold exposure can weaken immune defenses in the airways. Thickened
mucus becomes harder to clear → higher risk of exacerbations or infections 
Hypothermia
early symptoms: Shivering that may
stop as it worsens

• Slurred speech, confusion, or
brain fog

• Rapid breathing at first → slow, shallow breathing later

• Blue or pale lips/fingertips.   
Frostbite most often affects an individual’s fingers,
toes, nose, and ears. Respiratory
patients are at higher risk because of reduced circulation from chronic illness
or medications. Also, fatigue may delay noticing symptoms. 
Early frostbite signs: Numbness or tingling

• Skin turning pale, white

• Loss of fine motor control 
Cold-weather protection that actually helps: Cover your
airways-wear a scarf, gaiter, or mask over nose & mouth→ warms and
humidifies inhaled air. Protect
extremities with mittens, gloves, cover your ears fully, wear insulated socks, and layer
your clothing.

Please stay warm and safe throughout this cold spell. For more
information, please see the link below: 
https://my.clevelandclinic.org/health/diseases/15439-frostbite

Fair, recovering (I hope) from an exacerbation. 

Hello Everyone, I'm new here from Texas. Home sick today with stomach flu and tired of coughing... hoping its not something more. Struggled with getting in to see a doctor this morning and was not successful. I'm very frustrated with that. Does anyone have suggestions on being able to reach a doctor quickly when you need them? I'm new to Bronchiectasis. 

Hello! Extreme cold temperatures are affecting many parts of
the USA. Below is some basic information on Hypothermia and Frostbite.

Hypothermia- Cold, dry air can trigger bronchospasm, coughing,
chest tightness, and shortness of breath 
 • Inflamed or damaged airways lose heat and moisture faster
 • Cold causes blood vessels to constrict, reducing oxygen
delivery 
 • People with already-limited lung function may feel sudden
fatigue, dizziness, and worsening breathlessness. 
 • Cold exposure can weaken immune defenses in the airways 
 • Thickened mucus becomes harder to clear → higher risk of
exacerbations or infections

Hypothermia early symptoms: Shivering (may stop as it
worsens)

• Slurred speech, confusion, or brain fog 
 • Rapid breathing at first → slow, shallow breathing later

• Blue or pale lips/fingertips

Frostbite most often affects an individual’s fingers, toes,
nose, and ears. Respiratory

patients are at higher risk because: 
 • Reduced circulation from chronic illness or medications 
 • Fatigue may delay noticing symptoms 
Early frostbite signs: • Numbness or tingling

• Skin turning pale, white, or waxy

• Loss of fine motor control. 
Cold-weather protection that actually helps: Cover your airways-wear
a scarf, gaiter, or mask over nose & mouth→ warms and humidifies inhaled
air. Protect extremities• Mittens, gloves, cover your ears fully, wear
insulated socks, layer your clothing. 
Stay warm and safe throughout this cold
spell. For more information, please see the link below: 
https://my.clevelandclinic.org/health/diseases/15439-frostbite

 

Hello! Extreme cold temperatures are affecting many parts of
the USA. Below is some basic information on Hypothermia and Frostbite. 
Hypothermia- Cold, dry air can trigger bronchospasm,
coughing, chest tightness, and shortness of breath 
• Inflamed or damaged airways lose heat and moisture faster 
• Cold causes blood vessels to constrict, reducing oxygen delivery 
• People with already-limited lung function may feel sudden fatigue,
dizziness, and worsening breathlessness. 
• Cold exposure can weaken immune defenses in the airways 
• Thickened mucus becomes harder to clear → higher risk of exacerbations
or infections

Hypothermia
early symptoms: Shivering (may
stop as it worsens) 
• Slurred speech, confusion, or
brain fog 
• Rapid breathing at first → slow, shallow breathing later 
• Blue or pale lips/fingertips

Frostbite most often affects an individual’s fingers,
toes, nose, and ears. Respiratory
patients are at higher risk because: 
• Reduced circulation from chronic
illness or medications 
• Fatigue may delay noticing symptoms 
Early frostbite signs: • Numbness or tingling

• Skin turning pale, white, or waxy

• Loss of fine motor control. 
Cold-weather protection that actually helps: Cover your
airways-wear a scarf, gaiter, or mask over nose & mouth→ warms and
humidifies inhaled air. Protect
extremities• Mittens, gloves, cover your ears fully, wear insulated socks, layer
your clothing. 
Stay warm and safe throughout this cold spell. For more
information, please see the link below:

https://my.clevelandclinic.org/health/diseases/15439-frostbite

Hello! Extreme cold<br>temperatures are affecting many parts of the USA. Below is some basic<br>information on Hypothermia and Frostbite. <br>Hypothermia- <br>• Cold, dry air can trigger bronchospasm, coughing, chest<br>tightness, and shortness of breath  • Inflamed or damaged airways lose heat and moisture faster <br>• Cold causes blood vessels to constrict, reducing oxygen<br>delivery <br>• People with already-limited lung function may feel sudden<br>fatigue, dizziness, and worsening breathlessness. <br>• Cold exposure can weaken immune defenses in the airways <br>• Thickened mucus becomes harder to clear → higher risk of<br>exacerbations or infections<br><br>❄ Hypothermia early symptoms: <br>• Shivering (may stop as it worsens) <br>• Slurred speech, confusion, or brain fog <br>• Rapid breathing at first → slow, shallow breathing later <br>• Blue or pale lips/fingertips <br>Frostbite most often affects:<br><br>• Fingers, toes, nose, and ears.  Respiratory patients are at<br>higher risk because: <br>• Reduced circulation from chronic illness or medications <br>• Fatigue may delay noticing symptoms <br>Early frostbite signs<br><br>• Numbness or tingling<br><br>• Skin turning pale, white, or waxy<br><br>• Loss of fine motor control. <br>Cold-weather protection that actually helps: <br>Cover your airways-wear a<br>scarf, gaiter, or mask over nose & mouth→ warms and humidifies inhaled air. <br>Protect extremities<br><br>• Mittens > gloves<br><br>• Insulated socks (change if damp)<br><br>• Cover ears fully and layer your clothing wisely.<br><br>Please keep warm and safe throughout this cold spell. For more information, please<br>review the link below- <a rel="nofollow" href="https://my.clevelandclinic.org/health/diseases/15439-frostbite ">https://my.clevelandclinic.org/health/diseases/15439-frostbite </a>

Blessed

Hello! There are many causes of anxiety. Upcoming storms can lead to greater anxiety for those who are mostly homebound. The link below, from the National Institutes of Health, offers tips on dealing with anxiety. The link will take you to other topics regarding mental health and anxiety. Please let us know if you have any questions. We are here to support you throughout the year, especially now through this cold and snowy season. Caring for Your Mental Health - National Institute of Mental Health (NIMH) Anxiety Disorders, https://www.nimh.nih.gov/health/topics/anxiety-disorders

Hello! There are many causes of anxiety. Upcoming storms can lead to greater anxiety for those who are mostly homebound. The link below, from the National Institutes of Health, offers tips on dealing with anxiety. The link will take you to other topics regarding mental health and anxiety. Please let us know if you have any questions. We are here to support you throughout the year, especially through this cold and snowy season.
Caring for Your Mental Health - National Institute of Mental Health (NIMH) Anxiety Disorders

https://www.bing.com/ck/a?!&&p=ae062f139d5859ef0f0a2b6d6d4037daa32c5a73a4e082a397bdf1ebcd97fa5dJmltdHM9MTc2OTA0MDAwMA&ptn=3&ver=2&hsh=4&fclid=0ca9b0b9-2ddf-6727-275c-a33b29df6150&psq=ways+to+deal+with+anxiety+pdf&u=a1aHR0cHM6Ly93d3cubmltaC5uaWguZ292L2hlYWx0aC90b3BpY3MvYW54aWV0eS1kaXNvcmRlcnM

Hello! There are many causes of anxiety. Upcoming storms can
lead to greater anxiety for those who are mostly homebound. The link below,
from the National Institutes of Health, offers tips on dealing with anxiety.
The link will take you to other subtopics regarding mental health and anxiety.
Please let us know if you have any questions. We are here to support you
throughout the year, especially through this cold and snowy season.

Caring for Your Mental Health - National Institute of Mental
Health (NIMH) Anxiety Disorders

https://www.bing.com/ck/a?!&&p=ae062f139d5859ef0f0a2b6d6d4037daa32c5a73a4e082a397bdf1ebcd97fa5dJmltdHM9MTc2OTA0MDAwMA&ptn=3&ver=2&hsh=4&fclid=0ca9b0b9-2ddf-6727-275c-a33b29df6150&psq=ways+to+deal+with+anxiety+pdf&u=a1aHR0cHM6Ly93d3cubmltaC5uaWguZ292L2hlYWx0aC90b3BpY3MvYW54aWV0eS1kaXNvcmRlcnM

Hello! There are many causes of anxiety. Upcoming storms can lead to greater anxiety for those who are mostly homebound. The link below, from the National Institutes of Health, offers tips on dealing with anxiety. The link will take you to other topics regarding mental health and anxiety. Please let us know if you have any questions. We are here to support you throughout the year, especially through this cold season. Caring for Your Mental Health - National Institute of Mental Health (NIMH) Anxiety Disorders - https://www.bing.com/ck/a?!&&p=ae062f139d5859ef0f0a2b6d6d4037daa32c5a73a4e082a397bdf1ebcd97fa5dJmltdHM9MTc2OTA0MDAwMA&ptn=3&ver=2&hsh=4&fclid=0ca9b0b9-2ddf-6727-275c-a33b29df6150&psq=ways+to+deal+with+anxiety+pdf&u=a1aHR0cHM6Ly93d3cubmltaC5uaWguZ292L2hlYWx0aC90b3BpY3MvYW54aWV0eS1kaXNvcmRlcnM

Coughing and tired

DPP Check-In 🌧️❄⚡ | Bronchiectasis & NTM Community

With intense storms impacting many areas right now, this is a good moment for a quick Disaster Preparedness Plan (DPP) check-in—especially for those living with bronchiectasis or NTM, where breathing needs and routines matter even more.

A few gentle reminders to help you stay ready and safe:

Medications & airway clearance 💊🧰🫁: Make sure you have extra meds, nebulizer supplies, inhalers, and anything you use for airway clearance, plus batteries 🔋 and chargers 🔌 if needed.

Power plan ⚡🏠📞: If you rely on electric equipment (nebulizers, compressors, oxygen), double-check backup power options and keep emergency numbers handy.

Air quality & breathing needs 😮‍💨🌬️🫶: Storms can bring humidity changes, mold exposure, and cold air—listen to your body, pace yourself, and adjust treatments as advised by your care team.

Stay informed 📲📻: Keep weather and emergency alerts on, and know where to get local updates if conditions shift quickly.

Reach out 🤝💬: Let a trusted person know how you’re doing, especially if you live alone or symptoms start to change.

If storms are affecting your area, know you’re not alone. Take things one step at a time, rest when needed, and put your health first. 💙

If you’d like, share how things look where you are—or any preparedness tips that have helped you manage bronchiectasis or NTM during severe weather.

Here is our Disaster Preparedness Plan (DPP) available in our Downloads Library:
https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library#DisasterPrepared

Hi everyone! Good news - the U.S. House and Senate have released a bipartisan and bicameral appropriations package that includes several good provisions for the lung health community! Now is the time to urge your lawmakers to pass this budget package. Visit our Advocacy Action Center to quickly send a message directly to your members of Congress: https://www.votervoice.net/COPD/campaigns/133001/respond

Hello everyone!😀

The Bronchiectasis and NTM Association is excited to introduce our new platform, StoryVine. This dedicated app can be downloaded to your phone and allows individuals affected by bronchiectasis and NTM and their loved ones to easily share their stories from the comfort of their own homes. Our goal is to use these stories to raise awareness for World Bronchiectasis Day and to highlight the unique journeys of individuals across various social media platforms.


Help us raise awareness and give a voice to many who remain undiagnosed! If you are interested in learning more, please email me at alyssa@bronchandNTM.org or leave a comment, and I will get back to you.👍❤

Hello! We all hear the terms fear and anxiety on an ongoing basis. Fear and anxiety are closely related, but they are not the same. Here’s a way to tell them apart:
Fear- Response to a real, immediate threat 
· Happens in the present moment
· Usually short-lived and triggers  a strong fight–or–flight reaction
Examples: A car suddenly swerves toward you, or a loud explosion nearby
Purpose: Fear is protective. It helps you react quickly to danger and stay safe.
Anxiety- Response to a perceived, future, or uncertain threat
• Focused on “what if?”
• Can be long-lasting or recurring
• Often involves worry, tension, and anticipation
Examples: Worrying about an upcoming medical test, constant concern that something bad might happen, feeling uneasy without knowing exactly why
Purpose: Anxiety helps you prepare and plan—but when excessive or chronic, it can become overwhelming, and harmful to your mind and body.
A simple way to remember the differences- 
• Fear says: “Danger is happening now.”• Anxiety says: “Danger might happen later.”

I’m doing pretty good a break from mucus noises and cough. I’m dealing with respritech for the what everyone in my hose calls the shaky vest. Have any one dealt with Respritech a Phillips company. Advice welcome. 

Hello! Anxiety is a term frequently mentioned while discussing chronic health conditions. Anxiety is a response to an unknown danger, whether real or imagined. The article below defines anxiety and reviews the types of anxiety, causes of anxiety and the treatment options. Please let us know if you have any questions.
https://www.psychologytoday.com/us/basics/anxiety

Hello! We frequently hear the word anxiety as a symptom for many individuals with long-term chronic respiratory conditions. Anxiety is a response to an unknown danger, whether it is real or imagined. The article below from Psychology Today magazine defines what anxiety is, reviews the types, causes, and treatments of anxiety. Knowledge is power- many individuals can learn how to lessen anxiety with the right tools. Please let us know if you have any questions. https://www.bing.com/ck/a?!&&p=bc49a284bab0e6187257c731dc01237172079c2990496fcfd391c5bac876380aJmltdHM9MTc2ODg2NzIwMA&ptn=3&ver=2&hsh=4&fclid=0ca9b0b9-2ddf-6727-275c-a33b29df6150&psq=psychology+today+-+what+is+anxiety%3f&u=a1aHR0cHM6Ly93d3cucHN5Y2hvbG9neXRvZGF5LmNvbS91cy9iYXNpY3MvYW54aWV0eT9tc29ja2lkPTBjYTliMGI5MmRkZjY3MjcyNzVjYTMzYjI5ZGY2MTUw

 Hi everyone! We’re graduate students working on an academic research project for our graduate program at the University of California, San Diego, and we’re hoping to learn directly from this community.
Our goal is to better understand life with non–cystic fibrosis bronchiectasis, including current treatments and what the day-to-day experience is like from the patient perspective. If you’re living with non-CF bronchiectasis, we would truly appreciate you taking a few minutes to share your experience by completing a survey. We would also love to hear from any healthcare professionals in the group who care for people with this condition and are willing to share their perspective.
This survey is for educational purposes only, completely voluntary, and anonymous. There are no right or wrong answers — we’re simply interested in your honest thoughts and experiences.
Thank you so much for considering, and we’re very grateful for your time and willingness to help us learn from you!




Link to survey: https://docs.google.com/forms/d/e/1FAIpQLSc6Fpg17wPWVHa2f9C0fdGkN7_EAmO-7gzB7GQGNMcfy1UVaA/viewform?usp=dialog

Link to survey for health care professionals: https://docs.google.com/forms/d/e/1FAIpQLSf8lqN1OScc2F9Vz-_HjF5bUDF5umxQpFoP0uaNb6J6SjKbHQ/viewform?usp=header

Am I posting in the correct section?  I don't use the "filter by activity" - should I be?
adding to what I just posted, my VO2 Max on my watch tells me I'm amazingly fit and at 67 I have the fitness age of a 27 year old!  So yes, I do push myself!

Any webinars or podcasts recommended please for muscle wasting.  I'm a good weight at present, doing less and less physical work due to breathing and waning strength, but always pushing to do more.  There are no local gyms and pulmonary rehab is not available here.
Have a great day 

Doing very well thank you. Interested in finding out more about what community members that have bronchiectasis use for a portable nebulizer. The ones I have bought in the past don’t last more than a month or so I think because of the salt water used in the therapy. Plus there are so many on the market to choose from. 

Today, we celebrate Martin Luther King Day! He is famous for his quote “ I have a dream…” and worked hard as a strong , determined man to make his dream happen. 
We all have a dream , different types of dreams. Let this man inspire you to work on living out your dream whether it is a dream about your health or otherwise.  Below is information on his autobiography: https://www.biography.com/activists/martin-luther-king-jr

After contracting influenza a which brought on cardiomyopathy for me -and a hospitalization of 5 days. I am recovering on getting my strength back.
Despite being on IV antibiotics in the hospital , on Jan. 2 a sputum sample discovered chromobacter 2 + in my sputum. Pulmo and I decided I would do 3 nebs a day to try to clear it , rather than an antibiotic .  They all nauseate me and cause me to lose weight which I can’t afford , despite zofran.
I just submitted another sputum sample and am nervous. Has anyone cleared this bacteria with increased nebs or inhaled antibiotics ? 
I am so nervous about more antibiotics ,especially with the added burden of cardiomyopathy and an upcoming heart MRI . I know I’ll be talking to my pulmo and probabaly asking him to talk to the cardiologist.  

Hello! Burrr!!! It sure is cold 🥶 outside in many parts of the USA. Below is a blog article on preventing exacerbations throughout the winter months: https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/91/Preventing-Winter-Exacerbations-in-Bronchiectasis-and-NTM-Patients
Let us know if you have any questions. 

Hello! Anxiety, grief, anger, and fear are normal with a chronic lung disease. Allow feelings without judgment. Research shows self-compassion improves coping in chronic illness. It is important to practice Self-Compassion, especially during flares or exacerbations.
A few tips to normalize emotional changes:
·Acknowledge: “This is hard” is not negativity—it’s honesty.
Emotions pass more quickly when acknowledged.
·Normalize: “Many people with lung disease feel this.”
·Support: “What would help me right now?”
Treat yourself as you would a close friend with the same condition. Be prepared with a “Bad Day Plan” - this reduces anxiety and restores a sense of control.
A few tips:
• Comfort items (heating pad, favorite show, tea, favorite meal, or snacks)
•Permission to cancel plans without feeling guilty
• Gentle routines
• One grounding practice, such as deep breathing, music, or a spiritual practice.
Resilience grows from kindness toward yourself, flexibility, and a sense of meaning—especially on the hardest days. We are here to support you. You got this!

Hello! Anxiety, grief, anger, and fear are normal with a chronic
lung disease. Allow feelings without judgment. Research shows self-compassion
improves coping in chronic illness. It is important to practice Self-Compassion, especially during
flares or exacerbations. 
A few tips to normalize emotional changes:

· 
Acknowledge: “This is hard” is not
negativity—it’s honesty. 
Emotions pass more quickly when acknowledged.

· 
Normalize: “Many people with lung disease feel
this.”

· 
Support: “What would help me right now?” 
Treat yourself as you would a close friend with the same
condition. Be prepared with a “Bad Day Plan” - this reduces anxiety and
restores a sense of control.
A few tips:

• Comfort
items (heating pad, favorite show, tea, favorite meal, or snacks) 
•
Permission to cancel plans without feeling guilty 
• Gentle
routines 
• One
grounding practice, such as deep breathing, music, or a spiritual practice. 
Resilience grows from kindness toward yourself, flexibility,
and a sense of meaning—especially on the hardest days. We are here to support you. You got this! :)

Good afternoon- Ksmiles123. -
I have been using Prednisone 10- 15 mg for almost one year ; for Bronchietasis also diagnosed with APBA- fungal infection; my Ige was high 2000, it’s now reading 560, still high but reducing,
My Respirologist will be starting me by the End of January / 2026 with Dupixent hopefully this will solve the APBA issue.
Any thoughts or suggestions?
Thanks 

Hello! How are you doing today? Some days, we must redefine our productivity & worth. Many patients struggle with guilt when energy is low.
Suggestions to reframe your thoughts:
•Rest is treatment, not failure.
•“Enough” looks different now—and that’s okay. Many individuals adapt to a " new normal" over time.
Build meaning beyond your health outcomes. Meaning and purpose, productivity can come from:
•Helping others (even small acts)
•Creativity (writing, music, crafts)
•Spirituality or nature
• Connect with People Who Get It; feeling misunderstood worsens suffering. Sharing your story on this site with other like-minded BNTM individuals, where you don’t have to explain coughing, fatigue, or treatment fatigue, can be therapeutic. A community of shared language equals shared relief and comfort. Let us know if you wish to share your story with the BNTM community.

Hello! How are you feeling
today?

Some days, we must redefine our
productivity & worth. Many patients struggle with guilt when energy is low.

Suggestions to reframe your
thoughts:

•
Rest is treatment, not failure. 
•
“Enough” looks different now—and that’s okay. Many individuals adapt to a " new normal" over time.
Build meaning beyond your health
outcomes. Meaning and purpose, productivity can come from: 
 •
Helping others (even small acts) 
 •
Creativity (writing, music, crafts) 
 •
Spirituality or nature 
 • Connect
With People Who Get It; feeling misunderstood worsens suffering. Sharing your story on this site with other like-minded BNTM individuals, where you don’t have to explain coughing, fatigue, or
treatment fatigue, can be therapeutic. A
community of shared language equals shared relief and comfort. Let us know if you wish to share your story with the BNTM community.

Hello! Were you able to join the BNTM Coffee Break yesterday for the presentation, 'COPD Begins in Childhood,' with Dr. Jean Wright, CEO of the COPD Foundation? Do you have any questions? If you missed the coffee break, the link below is a recording of this presentation at a previous event: COPD Begins in Childhood - Guidance for Health Care Providers
https://www.youtube.com/live/MXO8-NAwBN0?si=ZRJie4eM6kwhvt4-

Excellent coffee break this morning, thank you for letting me join in. A question arose about TV personalities with NTM or Bronchiectasis. I couldn't find any with NTM, but Google AI lists the following:
Are there any public figures with Bronchiectasis?
While relatively rare for public figures to disclose, several notable people have spoken about living with or being affected by bronchiectasis, a chronic condition where the lungs' airways become permanently widened and damaged. Rosemary Conley: The renowned British health and fitness expert was diagnosed with bronchiectasis in 2016 following a bout of whooping cough. She has been a vocal advocate, sharing how she manages the incurable condition through regular exercise and fitness.
Priya Gopaldas: A doctor and former Love Island contestant, she uses her platform to raise awareness about the condition and how it impacts her life as an ultramarathon runner.
Judith Durham: The lead singer of the Australian band The Seekers lived with bronchiectasis for much of her life after a childhood illness.
Jane Seymour: While she has not disclosed having the condition herself, the actress is a major spokesperson for the "Speak Up in BE" campaign to help women advocate for themselves and raise awareness for bronchiectasis.
Robert Louis Stevenson: The historical author of Treasure Island is often cited by medical historians as having suffered from chronic lung issues, including what is now believed to have been bronchiectasis.

I'll dig some more...

💛 A Friendly Gratitude & Mindfulness Check-In 💛

Katie has been sharing some really great thoughts lately around gratitude and mindfulness, so let’s keep that going -- especially for those living with bronchiectasis or NTM, and the caregivers right alongside you.

When your days are full of treatments, airway clearance, meds, and a lot of waiting, mindfulness doesn’t have to mean sitting quietly on a mountaintop. Sometimes it’s just noticing, “Hey, I got through that treatment,” or “That cough gave me a little break today.” We’ll take the wins where we can get them.

Gratitude isn’t about pretending things are easy -- it’s about spotting the little things that help you keep moving forward:
• Finishing a treatment and checking it off the list ✔
• A moment of calm, a good laugh, or a decent night of sleep
• Support from someone who truly gets it -- maybe even in this community

Instead of asking, “Why is this so hard?” maybe we try, “What helped me today?” Even tiny answers count. Extra points if snacks were involved. 😉

Gratitude and mindfulness won’t magically fix bronch or NTM -- but they can help us stay grounded and a little more steady on the long days.

💬 Want to share? What’s one small win or moment you appreciated today?

We’re really glad you’re here -- and grateful for the way this community shows up for each other, every day. 💙

A lot has been published on the field of Positive Psychology over the past decade. Positive psychology is often associated with Dr. Martin Seligman, a strong advocate of his theories on well-being and positive psychology. Positive psychology focuses on helping people build strengths, cultivate positive emotions, and enhance well-being rather than just treating problems. Iti ncludes practices like gratitude journaling, identifying character strengths,optimism training, and meaning-making. 
A few Cons & Limitations of Positive Psychology:1. Risk of “Toxic Positivity.”- Overemphasis on positivity can sometimes minimize or dismiss genuine suffering. Patients may feel pressure to “stay positive” even when they’re struggling, which can lead to feelings of guilt or avoidance of genuine concerns. 
2. Individual Variability in Response- Not all patients benefit equally. Some may not resonate with or find meaning in Positive Psychology practices, particularly if they feel overwhelmed by physical symptoms or depressive symptoms. 
3. Cultural Considerations- Most Positive Psychology research has been conducted in Western, individualistic contexts, and its principles may not translate equally across different cultural or personal backgrounds.Have you practiced positive psychology regularly? Is there a specific practice that you would like to share with members of our community?

A lot has been published on
the field of Positive Psychology over the past decade. Positive psychology is often
associated with Dr. Martin Seligman, a strong advocate of his theories on well-being
and positive psychology. Positive
psychology focuses on helping people build strengths, cultivate positive
emotions, and enhance well-being rather than just treating problems. It
includes practices like gratitude journaling, identifying character strengths,
optimism training, and meaning-making. 
A few Cons & Limitations of
Positive Psychology:

1. Risk of “Toxic Positivity.”- Overemphasis
on positivity can sometimes minimize or dismiss genuine suffering. Patients may
feel pressure to “stay positive” even when they’re struggling, which can lead
to feelings of guilt or avoidance of genuine concerns. 
2. Individual Variability in
Response- Not all patients benefit equally. Some may not resonate with or find
meaning in Positive Psychology practices, particularly if they feel overwhelmed
by physical symptoms or depressive symptoms. 
3. Cultural and Contextual
Considerations- Most Positive Psychology research has been conducted in
Western, individualistic contexts, and its principles may not translate equally
across different cultural or personal backgrounds.
Have you practiced positive psychology regularly? Is there a specific practice that you would like to share with members of our community? 

Am doing great!!!

Hi everyone! According to the COPD Action Alliance's white paper "COPD in America," nearly one-third of surveyed COPD patients said they faced barriers to getting needed medication, treatments, or medical supplies. The COPD Foundation Captain Program advocates for policies to improve treatment access for the lung health community - you can learn more about it here: https://www.copdfoundation.org/Take-Action/Get-Involved/State-Captains.aspx

What has been the biggest barrier to COPD care for you, your loved one, or your patients?

Hello! The winter months can be challenging for BNTM individuals. We may be more homebound due
to the cold weather and have concerns about getting sick during the peak of flu season.
Below are a few tips on mindset & emotional resilience:
1. Focus on “what I can control today.” Treatments, rest, good nutrition, and mindset are all wins.
2. Allow mixed emotions. You can be grateful and frustrated at the same time since both are valid. Repression or burying emotions under the rug is not recommended since our emotions can impact our physical health as
well. Individuals are advised to communicate their challenging emotions with a friend, family member, support group, here online, or with a professional counselor if needed.
3. Reframe progress. Progress isn’t just test results—it is showing up for airway clearance when we really do not want to do airway clearance. Choosing self-care is another form of progress over perfection. We don’t have to do everything perfectly; we must show up for ourselves by improving our regular self-care practices.
4. Be kind to your lungs. Your lungs are working hard for you—show your lungs compassion by working with your lungs, not against your lungs.
5. Pace without guilt. Rest is not giving up- it is strategic energy management. Prioritize what is most important for you to accomplish each day.
6. Celebrate small wins every day. A walk, a stretch, chair yoga, or an airway clearance session counts. Let us know how we can assist you on your journey.