COPD360social welcomes new member Dan Leonard who joins 65,057 current members of our community. Weโ€™re glad you're here!

Coach Brandon - Community Manager

Coach Brandon - Community ManagerPrescription costs can be one of the most stressful parts of managing careโ€ฆ and for those using Medicareโ€™s Extra Help (LIS), the experience can look very different.

For some, it means real reliefโ€”lower copays, reduced costs, or even no deductible at all.

Weโ€™d really love to hear from you ๐Ÿ‘‡

๐Ÿ’ฌ If youโ€™re part of Medicareโ€™s Extra Help (LIS) program, how has it impacted what you pay for your prescriptions?

Whether youโ€™ve been using the program for a while, just recently learned about it, or this is the first time youโ€™re hearing of itโ€”your perspective matters.

Your experience could help someone else better understand what to expectโ€ฆ and maybe even point them toward support they didnโ€™t know was out there. ๐Ÿ’™

๐Ÿ‘‰ https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/Are-you-part-of-Medicares-Extra-Help-or-Low-Income-Subsidy-LIS-program.aspx

Are you part of Medicareโ€™s Extra Help or Low-Income Subsidy (LIS) program?

If you are part of Medicareโ€™s Extra Help or Low-Income Subsidy (LIS) program, how does that impact what you pay for your prescriptions?

4 hours ago

Coach Brandon - Community Manager

Coach Brandon - Community ManagerJean Rommes Memorial - live stream her celebration of her incredible life โ™ฅ



https://www.youtube.com/watch?v=ghiIoOUsN6k

23 hours ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager

Sometimes depression doesnโ€™t look like what we expect.

Itโ€™s not always tears.
Itโ€™s not always obvious.

Sometimes itโ€™s just feelingโ€ฆ off.
Like youโ€™re there, but not really there.
Like everything takes more effort than it should.
Like youโ€™re tired in a way that rest doesnโ€™t fix.

And when youโ€™re living with COPD, bronchiectasis, NTM, or caring for someone who is โ€” that weight can quietly build over time.

The physical side is already a lot.
The mental side can be just as heavy.

It might look like:
โ€ข Losing interest in things you used to enjoy
โ€ข Pulling back from people or conversations
โ€ข Feeling overwhelmed by small things
โ€ข Changes in sleep or appetite
โ€ข Low energy, low motivation, or trouble focusing
โ€ข Being harder on yourself than youโ€™d ever be on anyone else

And sometimesโ€ฆ you canโ€™t quite explain it at all.

If this sounds familiar, please donโ€™t brush it off.

Donโ€™t ignore how youโ€™re feeling. It matters.

You donโ€™t have to โ€œpush throughโ€ everything on your own.
You donโ€™t have to wait until it gets worse to say something.

We are a community here โ€” and you matter here.

On the hard days, even something small can help:
a message, a check-in, a few minutes outside, a familiar song, a quiet moment to breathe.

And if all you can do today is get through the day โ€” that counts.

You are not a burden.
You are not alone.
And you donโ€™t have to carry this quietly.

If you feel up to it, whatโ€™s something that helps you when the days feel heavier? ๐Ÿ’™

4 days ago

  • NewestOldestClick to View All Comments16 comment(s)
  • JazzybeanJean053 "When the world seems chaotic it's nature that sustains me". So true. 
     The older I get the more I am in awe of the healing that time spent in nature can give me. I just came home from a couple of weeks spent on the New Jersey Shore where I visited family. It's out of season so the the board walk and beach were deserted. I can't walk the beach as I once used to, but, I bundled up. walked slowly to the edge of the ocean early one morning and it was breathtakingly beautiful. Just standing there, listening to the waves, the longer I stood there, the more I felt a happiness creep up inside me. That feeling is still with me.2 days ago
  • JeanO53Jazzybeanโ€‹ - You are a kindred spirit.  โ€œBreathtakingly beautifulโ€
    I use a hiking pole when I walk on sand,  otherwise I probably wouldnโ€™t get very far.  ๐Ÿ˜Š1 day ago
  • JazzybeanJean053 never thought of a hiking pole, what a great idea. Definitely will keep it in mind next time I'm contemplating walking on sand. 1 day ago
Dan Leonard

Dan Leonardcommented onTom the Truck Driver Drives COPD Awareness

Thank you Tom!I am a voice for those who like me have COPD. My #1 most important goal is to get word out to as many fellow patients as possible. So much is not being openly told to patients forcing many to do research on their own. I took immediate...

22 minutes ago

Ms.PoohBear3040

Ms.PoohBear3040

I have upper resportary and been dealing with it for some yrs now. I am concerned due to my dad passing away to lung cancer when I was 14yrs old. So I am doing everything I can do

59 minutes ago

Bob puff dragon

Bob puff dragonAnother wet dreary day on the coast like we need it.
Trying to get through another day bird watching and observing the world from the front window,no plans except have a video conference with local school board to try and establish an expanded music course,Have been offering guitar classes for years where  l tape them and experiment at the mixing board to show them a
Better view of the behind the scenes business aspects.The students have been asking for me to do more as nothing is offered in our area to help them and Lord knows l need a cause these days.Afraid dealing with school boards is like copd, frustrating and endless.
Anyway keep them breaths large and repeat.

4 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

โšก๏ธEDAMAME ZIPPY CRUNCH SALADโšก๏ธSALAD:One 12-ounce package frozen shelled edamame, cooked and cooled2 cups packaged coleslaw mix2 cups shredded red cabbage1 large red bell pepper, diced1 cup shredded carrots3 scallions, chopped 1/3 cup chopped...

5 hours ago

MatthewH

MatthewH

Having a really bad time trying to 

8 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainToday is Monday. Time to turn over a new leaf! ๐Ÿƒ Start the week with a positive outlook. Plan your days according to the weather forecast. Spend time outdoors on sunny days. Accomplish projects indoors on rainy days. Balance out your week so you can get things done, plus have time to relax. Leave the negativity behind, friends! From here on in, we are moving forward! โžก

10 hours ago

Pennyles

Pennyles

Great, Thanks

11 hours ago

Phyliss DiLorenzo NJ State Captain

Phyliss DiLorenzo NJ State Captainanswered the question Ohtuvayre residue in Neb cup.

I have not had this issue. I use the Pari only with Ohtuvayre, as I was instructed by the pharmacyโ€™s pharmacy counselor and or nurse, I donโ€™t believe the Pari I received from my specialty pharmacy is a LC Sirint, I am currently away from my Pari, in a …
David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question

17 hours ago

ZaydeBob

ZaydeBob

I was diagnosed with COPD paraseptal emphysema in 2023. Outside of exacerbations, I was stable and showed no signs of progression until 10 months ago. My shortness of breath and energy levels have been slowly getting worse. Walking to the mailbox and back (about 110 yards roundtrip) now leaves me breathless and exhausted. Two months ago, I learned that I have diastolic dysfunction. Fortunately, it is Stage I.

I have also had very high Rheumatoid Arthritis (RA) factor levels that have been increasing in the past year. The normal range for RA is 0 - 20. My RA factor is 850. My Pulmonologist sent me to see a Rheumatologist on Monday. She ran a bunch of blood tests. She told me that I now have Rheumatoid Arthritis in my lungs. This is classified as Interstitial Lung Disease (RA-ILD). I go back to see her next week to discuss treatment options. I was shocked when I did a look up on RA-ILD and saw that the median survival from diagnosis is 3-5 years. I'm nervously awaiting my follow up visit with her.

Is there anyone else here that has both COPD and ILD?

21 hours ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Caroline West Virginia State CaptainI do not have both conditions, I hope that someone with knowledge will respond.  Welcome to the group and I wish you all the best.19 hours ago
  • Bob puff dragonHi Bob,,
     l also have exactly what you have and also share the same name totally medically irrelevant..
    My ra count at 800-900 has remained consistent over time.Been on weekly methotrexate injections for over ten years as well,Prednisone burst treatments,but little good is coming from it.
    I get these chest pains that feel like l have been kicked by a giraffe and also the extreme shortness of breath on exertion as you have.
    I do believe our cases are fairly rare however as I have raised that question in here before to basically  silence.
    I am afraid I have no great revaluation for you to help you,a rheumatologist was not really the be all to anything in my case.Pills more pills,, more tests about all.
    Most health care workers look at you with dear in the headlight look when you mention it,like you are inventing a new disease l have found,very frustrating for sure.
    Do you also have co2 retention issues as well ,would be nice to know?Last arterial test came back at 82 for me,about triple recommend average.Get yourself tested for this if you haven't already maybe would a suggestion.
    My o2 levels are also usually high above 90 most days,are yours? Many health care and ambulance attendants give you a puzzled look as to why you are so sob when 02 stats so high.
    Anyhow l digress and know exactly the struggles you live with daily ,sucks to be us.Hope you find some help that works for you and please stay in touch so maybe w can help each other.......4 hours ago
  • Caroline West Virginia State CaptainTo both Bobs, I am very sorry that we were unable to help.3 hours ago
GAnne

GAnneanswered the question Is any else dealing with the pollen, are you wearing a mask?

!!I have plenty of allergy meds. For rag weed all winter. I normally have a good spring, guess I think about it because my dr told me to be careful in the pollen. Iโ€™m glad he is go. Er Ed about me and I see him Wednesday for another didnโ€™t shot and go …
Caroline West Virginia State CaptainKaren Deitemeyer - Florida State Captaindas23 also answered the question Caroline West Virginia State Captainand 2 others also answered the question

22 hours ago

Coach Brandon - Community Manager

Coach Brandon - Community ManagerAsk me how Jasmine and Jagger always stay calm and never take off after a rabbitโ€ฆ and definitely never take me for a ride while Iโ€™m holding both leashesโ€ฆ yikes! ๐Ÿพ


Wishing you a lovely afternoon, with some Spring colors mixed in!

1 day ago

norin

norin

Not brilliant 

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappiest of Sundays to everyone here on 360Social! May every moment bring you much deserved joy! ๐Ÿ˜Š

1 day ago

ZaydeBob

ZaydeBobanswered the question Check-In: Commonly Asked Questions About Pulmonary Rehab

I just completed my second pulmonary rehab program last week. The exercises and camaraderie were very helpful. My first time was 2 years ago. I highly recommend it to anyone with COPD, emphysema, bronchiectasis, or any other lung disease or disorder.
Caroline West Virginia State Captain also answered the question Caroline West Virginia State Captain also answered the question

1 day ago

ktm390

ktm390

I can really identify not being able.to sleep since i was diagnosed with emphysema had really bad nightmares but thanks to the positive posts about living with it and controlling what i can control helps sometimes though i quit smoking 16 years ago thought i probably i would not get lung cancer or emphysema guess i was wrong but that can't be changed now live day by day be grateful for today and try to be happy live my best life good luck

1 day ago

GAnne

GAnneasked the question: Is any else dealing with the pollen, are you wearing a mask?

I feel like I have been in all winter, and now that spring is here the pollen is high. What kind of k are you wearing, I just want to go out and sit in this beautiful sunlight, and not see it from just the inside. Itโ€™s hard to breathe with a mask on, but …

1 day ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State CaptainFor those of us who knew her, Jean IA State Captainโ€‹'s Celebration of Life will be live streamed tomorrow (Sunday the 12th) at 2 PM Eastern.   Or even if you didn't know her - she was a COPD Foundation Board member, a wonderful friend  and a fierce advocate for both the Foundation and the American Lung Association.  

https://www.youtube.com/live/0Hd2xuDAbGY

Memorial for Jean Rommes

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

1 day ago

Mr.CL

Mr.CLasked the question: Ohtuvayre residue in Neb cup.

I use two different Nebulizer cups for Ohtuvayre. One, the Aeroeclipse XL and the other, the Parí LC Sprint. I donโ€™t notice anything unusual with the Aero, but the Sprint ends up with a gelatinous residue on the inside and outside of the insert. Is this …

1 day ago

Mr.CL

Mr.CLasked the question: Mesh Neb condensation

Is there a mesh Nebulizer that produces a good aerosol that doesnโ€™t condense half the volume in he mouthpiece (and not slow.)

1 day ago

Judy07

Judy07

Hello,


 New to the sight. I wanted to ask a question about inhalers. I have Emphysema stag 2-3. Recently had a ER hospital visit in Nov oxygen 80 Percent. In Physical Rehab now. I am on Brestri inhaler has 3 meds in it. I have lost my voice and throat is swelled up and sore. I rinse and gargle  always. hot tea with honey lemon, lozenges, and Biotene rinse. Not much else you can do except change the inhaler. That is my question. What COPD inhaler will not cause this and last all day or done 2x a day. Thank you. I hope I'm asking the right questions on this group.  

2 days ago

Liza M

Liza Manswered the question Age 33 Diagnosed with COPD

Oh my gosh, I am not having luck today with writing these posts. Anyway, after the initial shock of the diagnosis,
David Mannino, MD (Chief Medical Officer, COPD Foundation )DebbieB.-Connecticut State CaptainCaroline West Virginia State Captainand 5 others also answered the question David Mannino, MD (Chief Medical Officer, COPD Foundation )and 7 others also answered the question

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainWishing everyone a pleasant Saturday! Enjoy your day, friends! ๐Ÿ˜€

2 days ago

Emma60

Emma60

Iโ€™m a new member here. My dad recently passed away in November due to copd. I was his caregiver too. 

2 days ago

Coach Brandon - Community Manager

Coach Brandon - Community ManagerMidsummer Nut Party with Cutest Red Squirrels and Adorable Little Birds - live stream
Something fun for a Fluffy Friday!

https://www.youtube.com/watch?v=dJVVcv9-ndg

Live view:

2 days ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager

Happy Siblings Day! ๐Ÿ’›

You knowโ€ฆ the ones who can push your buttons like no one elseโ€ฆ mostly because they helped install them. ๐Ÿ˜‰

Whether theyโ€™ve been your partner in crime, your lifelong rival, or your biggest cheerleader, siblings have a way of staying woven into our stories through every stage of life.

And sometimes, life brings someone into our world who becomes that sibling connectionโ€ฆ even if we didnโ€™t grow up together.
A bond that feels like family, and a friendship that just fitsโ€”like a sibling and best friend all in one.

For those living with COPD, bronchiectasis, or other lung conditions, these connections can take on even deeper meaning. A sibling might be the one checking in, sitting beside you on the tougher days, or sharing a laugh right when you need it most.

And sometimes, itโ€™s those shared memories, inside jokes, and moments of laughter that help carry us through.

๐Ÿ’ฌ If youโ€™re up for sharing:
Who is someone in your life who feels like a sibling to you?
Or whatโ€™s a memory that always makes you smile?

Letโ€™s celebrate those connections todayโ€”near, far, or held close in our hearts. ๐Ÿ’™

3 days ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Karen Deitemeyer - Florida State CaptainI had 2 siblings - my brother Pete, who passed away last summer, and my sister Claire, with whom I"ve become very close over the past few years.  I'm 4 years older than she, and we weren't very close growing up ๐Ÿ˜ข.  Unfortunately we live on opposite sides of the country, so don't see each other in person enough, but we do email. text and zoom regularly.  And then there's my best friend Mary, who is like another sister.   I can count  on both of them to be there for me, no matter what.2 days ago
  • JeanO53I had 3 siblings, 2 older brothers and a much younger sister.  Us three older kids were very close in age and spent a lot of time together, usually me as the younger sister trailing behind them, still I always felt like my brothers had my back.   We drifted apart as we grew older and our world views are very very different. 
    ... My oldest brother passed away in 2016, much too soon.  He definitely knew how to push my buttons.  My other brother lives on the east coast in South Carolina and my sister on the west coast in Portland, OR.   We don't see each other very often, but my sister and I are closer these days, texting each other throughout the week - just ordinary, day to day stuff.
    ... The photo is from 1975 on the occasion of my oldest brother's wedding.2 days ago
  • Coach Brandon - Community ManagerLovely memories โ€” thank you for sharing! My sister and I can still get my mom laughing to this day. We play off each other so well and always seem to know just what to say - whether itโ€™s to embarrass one another, make one want to run away, or come chasing after me (usually me!). That same humor definitely comes with us when weโ€™re out and about, and it turns even a simple shopping trip into an adventure! It's fun to share, thanks for joining in!2 days ago
Fester

Fester

I have stage four COPD and I still donโ€™t seem to be able to put the smokes down. My family is about convinced that I either am suicidal or I just donโ€™t care

3 days ago

  • NewestOldestClick to View All Comments7 comment(s)
  • Caroline West Virginia State CaptainI have to side with Dave.  I ended up in ICU for 14 days and in a step down for 2 because I did not quit.  You don't want that to happen to you.2 days ago
  • David Mannino, MD (Chief Medical Officer, COPD Foundation )Welcome!  Cigarettes are not addicting by accident- they have been designed by tobacco companies to be as addicting as possible.  Most smokers need multiple attempts to finally quit for good.  I have had patients quit using many different means ( medication like patches or chantix, hypnosis, acupuncture, cold turkey, staples in ear, etc).  I say whatever works!2 days ago
  • Karen Deitemeyer - Florida State CaptainHi Festerโ€‹ - I was able to quit using one-on-one hypnosis by a psychologist.  I was diagnosed in 2001 with severe COPD and am here, some 25 years later because I decided I wanted to stick around for my grandchild.  I now have 3 grandchildren and two great-grands, and am so glad I made that decision.  Is there something in your life that you want to be around for?  That is worth another try at giving up the cigarettes?  Please keep on trying.2 days ago

Medical Advice

It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.