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1 day ago

Gretchen

Gretchen

It is going to get up to almost 80 degrees today in DC. Is this unseasonable weather impacting anyones breathing? It feels unnatural to be so warm in February. Also, it killed the cherry blossoms last year. We shall see how it effects things this year.

1 day ago

Ksmiles123

Ksmiles123commented onTo Be or Not To Be Compliant-That is the Question

 Kristen, Thank you for your comments. Yes, we can not throw up our hands and give up; we have an opportunity to start over each and every day. If we fell off the “ compliance wagon”, we must attempt to get back on it tomorrow....

1 day ago

Ksmiles123

Ksmiles123Hello! Do you attend a support group?
Please see the link below if you are interested in finding a support group in your area.
https://www.ntminfo.org/patients/support/local-support-groups~

2 days ago

"She_looks_normal"asked the question: World Conference 2018

Does anyone know the where, when and how to register for the 2018 conference? I did see it was going to be in Washington, D.C. in July 2018, but have not been able to confirm dates. I also cannot find how to register? My family is really wanting to …

2 days ago

Kristen

Kristencommented onTo Be or Not To Be Compliant-That is the Question

 Thanks, Katie! I have a tendency to think the negative reflexively in some areas -- "I won't be able to do this." As you might imagine, that isn't very helpful, particularly in trying new things! I try to reframe this more positively: let me try it!...

3 days ago

Ksmiles123

Ksmiles123Hello! The link below offers some ayurvedic tips on flu prevention.
https://www.mindbodygreen.com/articles/ayurvedic-flu-remedies-and-prevention

3 days ago

    MaryLyn

    MaryLynanswered the question Has anyone had success applying for Social Security Disability?

    Yes, I won my case after pursuing it for three years. It helps to have a good attorney, the support of your pulmonologist, and enough knowledge about your disease to speak frankly about it with the judge if he/she asks you any questions. In my case, I …
    Elizabeth BenkertKeland 3 others also answered the question and 5 others also answered the question

    3 days ago

    MaryLyn

    MaryLynasked the question: Severe Long Term Bronchiectasis

    I was diagnosed in the 80's, and have been in the hospital for flare ups, more times than I can count. I almost never feel well, but continue to carry on as tho I am . I think my question might be: How do others with this disease deal with the copious …

    3 days ago

    RichW

    RichW

    trying to get registered for the phone conference seminar.

    5 days ago

    Gretchen

    Gretchenadded a new article To Be or Not To Be Compliant-That is the Question

    This blog post was written by Katie Keating, RN, MS, patient advocate

    Are you compliant with your everyday NTM/bronchiectasis routine?

    As we are still early into 2018, I read that only 8% follow through with their New Year’s resolutions. Was one of your New Years’ resolutions to work towards being as healthy as possible under the present circumstances?

    Most people (not including NTM/bronchiectasis patients) get up, maybe have their coffee, take a shower...

    5 days ago

    Ksmiles123

    Ksmiles123Hello! Have you ever experienced right sided chest discomfort?

    Most of us have heard of left sided chest discomfort related to heart conditions.
    Right sided chest discomfort may be due to GERD, esophageal spasms, pneumonia, referred pain and several more described in the link below. It is important to learn how to differentiate different symptoms one may experience .
    https://www.verywell.com/right-sided-chest-pain-symptoms-and-possible-causes-4116859

    6 days ago

      Kristen

      KristenThe COPD Foundation has teamed up with the CHEST Foundation. to dispel common myths around generic drugs.

      https://www.copdfoundation.org/COPD360social/Community/Blog/Article/1295/Generic-Drugs-What-You-Should-Know.aspx

      6 days ago

      Ksmiles123

      Ksmiles123

      Happy Heart's Day to all! I appreciate all of you are participate on this site. We are all in this together on this journey. We will live more fully by opening our hearts, and reaching out to assist one another under the present circumstances. We can give the gift of hope to one another on a regular basis.
      “The capacity for hope is the most significant fact of life. It provides human beings with a sense of destination and the energy to get started.”
      – Norman Cousins

      1 week ago

      Gretchen

      Gretchenvoted on Event Alert: Second Town Hall Teleconference: A Dive into Bronchiectasis and NTM

      Gave a thumbs up for a blog post!

      1 week ago

      Gretchen

      GretchenHappy Valentines Day. Give yourself a little break today, free from the clutter, chaos and stress of normal, busy life. This is a quick, guided meditation to help reduce stress and anxiety. Sometimes it just takes a few minutes to re-group and move forward.

      https://www.youtube.com/watch?v=MR57rug8NsM

      "You yourself, as much as anybody in the entire universe, deserve your love and affection." -Buddha

      1 week ago

      Tracie Sullivan COPDF Staff

      Tracie Sullivan COPDF Staffhttps://www.youtube.com/watch?v=ETalJn7cVHk

      Interested in learning how to email your elected officials? Check out this short introductory video on how to get started!

      1 week ago

        Ksmiles123

        Ksmiles123Hello! The tips in the link below apply to NTM/bronchiectasis patients with the exception of smoking. Many people with NTM have never smoked.
        https://www.nationaljewish.org/health-insights/living-with-copd/10-tips-to-living-better-with-copd

        1 week ago

          Ksmiles123

          Ksmiles123Hello! Omega 3s are important for our physical and emotional well being.
          Are you getting adequate omega 3s on a daily basis?
          https://www.webmd.com/cholesterol-management/rm-quiz-fish-oil-facts

          1 week ago

            Tracie Sullivan COPDF Staff

            Tracie Sullivan COPDF StaffFor those of you who are interested in advocacy, NORD (National Organization for Rare Disorders) is holding a free webinar on Tuesday, February 20th at 2:00pm EST on The Role of Government in Policy and Tips to advocate for you and your loved ones. I think it could be a great webinar to check out, I just signed up myself! Link to register is below!

            Thank you Ksmiles for passing this great webinar along! :)

            https://cc.readytalk.com/registration/#/?meeting=muzfnxb4szy&campaign=jbn4oar86zfg

            1 week ago

            Tracie Sullivan COPDF Staff

            Tracie Sullivan COPDF StaffI wanted to share out about the second town hall teleconference about Bronchiectasis & NTM, the first teleconference was such a success that we are collaborating for a second one! Click on the link below to learn more, and I hope to see you virtually!

            https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/66/Event-Alert-Second-Town-Hall-Teleconference-A-Dive-into-Bronchiectasis-and-NTM

            1 week ago

            Ksmiles123

            Ksmiles123

            Hello! There is a Question and Answers section to the left side. Currently, there are 97 questions. Please let us know if you have a new question. We are here to assist you on this journey.

            1 week ago

            • GretchenThank you for the info. We try to make the site as user friendly as we can but I know clarification always helps!1 week ago

            • Ksmiles123Yes, reminders are always good ; I posted this especially for the generations that did not grow up with technology. Often, it takes a few times to review a site to fully understand all the site offers.:)1 week ago

            • GretchenAnother great reason to utilize the question and Answer section is that you will receive a notification when another participant answers a question you asked. When you post a question in the Question & Answer section it allows for more visibility in to the community members. The Activity Feed is mainly used for status updates, interesting articles or quick check-ins with the group. These posts are only visible for a few days before they become buried by other updates.1 week ago

            Ksmiles123

            Ksmiles123Hello! I hope that you learn something new from the link below. Please share a relevant story if you have one.https://www.verywell.com/skin-signs-to-diagnose-emergency-4131101

            1 week ago

              Ksmiles123

              Ksmiles123Hello! The link below provides information from the CDC re: the flu.https://www.cdc.gov/flu/takingcare.htm

              1 week ago

                Made Pramana

                Made PramanaI did 30 minutes session of yoga exercise with seniors in Sembung Village. I never do yoga for other people. Got new experience. I realized that I need to work on many things so I can give better Yoga experience to other people, especially for the seniors. Have a nice Sunday! 😊

                1 week ago

                Kandy

                Kandy

                Checking in from very cold SD!! Hope everyone is having a nice weekend.

                1 week ago

                Cm

                Cm

                Ok I have brochiries and inflammation in my lungs.

                1 week ago

                Ksmiles123

                Ksmiles123https://www.everydayhealth.com/columns/alexander-mcmeeking-infectious-disease-watch/why-wont-my-chronic-infection-go-away/

                1 week ago

                fabiana

                fabianaWhat is the COPD Patient-Powered Research Network? Watch the animated video: https://www.youtube.com/watch?v=SNZYk7SOfMs

                1 week ago

                  Ksmiles123

                  Ksmiles123

                  Hello! How are you doing today? The weather is changing here once again - going from low temps in the teens to 45 over the weekend. Are the weather changes bothering you?

                  1 week ago

                    Ksmiles123

                    Ksmiles123Some of the listed benefits of water apply to NTM/bronchiectasis patients. The most important reasons to drink water for members is to loosen secretions and to remain hydrated.
                    https://www.healthline.com/nutrition/7-health-benefits-of-water#section7

                    2 weeks ago

                    Gretchen

                    Gretchen2018 NTM & Bronchiectasis Physician/Patient Conference is just around the corner. This year the meeting will be held in La Jolla, CA

                    Where: The Estancia La Jolla Hotel
                    When: Thursday, May 17, 2018
                    Time: 7:30am-5pm PDT
                    Who should attend: Designed for patients, caregivers and healthcare professionals who treat NTM, bronchiectasis and related comorbidities.

                    There will be an overview of epidemiology, pathogenesis, diagnosis, management and treatment of nontuberculous mycobacterial (NTM) lung disease and bronchiectasis. The hope is to increase awareness of these conditions and advances in treatment options in order to improve patient care.

                    Click here to get more information and/or to Register: http://events.r20.constantcontact.com/register/event?oeidk=a07ef3pq52v1635c8e0&llr=qd7oz5bab&showPage=true

                    2 weeks ago

                      Ksmiles123

                      Ksmiles123https://www.healthline.com/health/how-to-increase-lung-capacity#diaphragmatic-breathing

                      2 weeks ago

                        Ksmiles123

                        Ksmiles123Hello! It is super cold here in Pittsburgh. Below is a link with information on bronchospasms ; bronchospasms are frequently experienced on cold days by respiratory patients.
                        https://www.healthline.com/health/bronchospasm#when-to-see-your-doctor

                        2 weeks ago

                          LJ Walsh

                          LJ Walshvoted on Event Alert: Second Town Hall Teleconference: A Dive into Bronchiectasis and NTM

                          Gave a thumbs up for a blog post!

                          2 weeks ago

                          Made Pramana

                          Made Pramana

                          Hi guys! Sorry I've been not here! I am currently staying on a village for doing community activity. It's an university program. Staying for a month. Bad signal here. Hope I can do my best to maintain my condition. Have a day! ;) #SembungVillage

                          2 weeks ago

                          Von

                          Voncommented onEvent Alert: Second Town Hall Teleconference: A Dive into Bronchiectasis and NTM

                           Looking forward to the teletownhall. Love the subjects up for discussion! Can't wait!...

                          2 weeks ago

                          Kandy

                          Kandy

                          Sorry not been here so many stressful days with trying to get my windows 10 to work and FB. My poor daughter has been here every night after work trying to fix this problem. We even tried to go back to windows 7 which this was before windows 10 took off. Anyway back for the moment not sure what we are going to do she may get a lap top working and may not so you know what is going on.

                          2 weeks ago

                          Brandon

                          Brandon commented onEvent Alert: Second Town Hall Teleconference: A Dive into Bronchiectasis and NTM

                           This is fantastic news! The first town hall meeting was so well done with great information - I am really looking forward to our next on March 5th, thank you!...

                          2 weeks ago

                          Brandon

                          Brandon voted on Event Alert: Second Town Hall Teleconference: A Dive into Bronchiectasis and NTM

                          Gave a thumbs up for a blog post!

                          2 weeks ago

                          Cbp

                          Cbpvoted on Event Alert: Second Town Hall Teleconference: A Dive into Bronchiectasis and NTM

                          Gave a thumbs up for a blog post!

                          2 weeks ago

                          Merry

                          Merryvoted on Event Alert: Second Town Hall Teleconference: A Dive into Bronchiectasis and NTM

                          Gave a thumbs up for a blog post!

                          2 weeks ago

                          Ksmiles123

                          Ksmiles123Hello! The article below describes the many different types of depression.
                          https://www.webmd.com/depression/ss/slideshow-depression-types

                          2 weeks ago

                            Ksmiles123

                            Ksmiles123commented onEvent Alert: Second Town Hall Teleconference: A Dive into Bronchiectasis and NTM

                             Hello! I am looking forward to the 2nd town hall meeting. Dr. Askamit is a great person as well as a great NTM/Bronchiectasis expert. ...

                            2 weeks ago

                            Ksmiles123

                            Ksmiles123The link below will provide you with some suggestions if you are looking for a new hobby to keep you busy during the winter months.
                            https://takelessons.com/blog/best-hobbies-for-your-brain?utm_campaign=promo&utm_source=em_engage&utm_medium=email&utm_content=1802_8_hobbies_smarter&mkt_tok=eyJpIjoiTURJMk5HWmxOREF6TmpZeSIsInQiOiJyUUZlbGRRWDFcLzBjYjZseXZkZUlOZ2FhRjlzZ0VmSnYrRWRMeFZ6SG50SzBFUnhqa3cyN0FrdHRqaXRcLytsZEVDMlNUXC8xT3RTNHV6NlBrTFwvdmNKYU9hS2JcL0ExQmVUWU9BUmZnSEtcL2pLeW0wWktIWjhpbk5kUU85enFqK0N1RSJ9

                            2 weeks ago

                            • Click to View All Comments5 comment(s) -
                            • Ksmiles123Merry, Gretchen,
                              I agree . There are so many great on line courses, new hobbies now available to do at your own pace .Life long learning makes your life much more interesting.2 weeks ago

                            • MerryMy husband and I are always amazed at the unusual hobbies and obscure knowledge that people have posted on the Internet. My daughter has been teaching herself to whittle--old codger style--thanks to YouTube.1 week ago

                            • Ksmiles123Merry,
                              Yes, you can learn how to do almost anything online these days...lol.
                              Whittling sounds fun.1 week ago

                            Kristen

                            Kristencommented onEvent Alert: Second Town Hall Teleconference: A Dive into Bronchiectasis and NTM

                             I'm so excited for this! The agenda looks great and I have not yet heard Dr. Aksamit speak....

                            2 weeks ago

                            Gretchen

                            Gretchenadded a new article Event Alert: Second Town Hall Teleconference: A Dive into Bronchiectasis and NTM

                            We are excited to announce the second part of our two-part town hall teleconference series: A Dive into Bronchiectasis and NTM. This town hall event will take place via teleconference (no visual portion) on Monday, March 5th from 2pm to 3pm EST. Expert speaker, Dr. Tim Aksamit of the Mayo Clinic will take a dive into bronchiectasis and NTM by covering the topics listed in the agenda below. This event is free, but registration is required to...

                            2 weeks ago

                            Merry

                            Merry

                            Snow over the weekend, snow tonight and possibly snow on Tuesday. I am thankful to have a husband and daughter who take care of the snow shoveling. I just have to keep them in treats, so I baked zucchini bread on Saturday. I've got a bit of dry cough today and a dip in O2 saturation. Hope that's a temporary condition because I am SO enjoying my 6 month reprieve from medical appointments.

                            2 weeks ago

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                            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. While we encourage individuals to share their personal experiences with bronchiectasis and NTM, please consult a physician before making changes to your own disease management plan.