[Lorraine]

I too am struggling. My disease is progressing, slowly but none the less, progressing.

I can’t get this disease out of my heart and head. I was in a terrible funk for most of the summer and started to withdraw, putting myself in Social Isolation. At times I called a free mental health counseling service. Sometimes several times in a day. It helps.

According to a recent PFT, my diffusion breathing has worsened, and I have noticed the difference when I resumed my walk.  Also, the walk took a half hour longer than my previous normal. Of course the humidity does not help.

Recently, I was able to remove myself Social Isolation, and have been doing fun things. Reaching out to friends. Filling up the calendar.

When I saw my pulmonologist the other day, she asked me how I was feeling. I said depressed and sad and she said, I should. (That made me feel worse!) She said she wanted me to start counseling within a month.

I found someone who works with 9/11 First Responders, I am a 9/11 Vicitm. She takes medicare and ironically my first appointment is on 9/11.

I am hoping and trying to resume all facets of my life.

[Lorraine]

Thank you Linda. I appreciate the motivation and support. I will give you a shout out and a early or belated Happy Birthday wish, when I play the harmonica next. 🙂

[Lorraine]

Hi Linda:

I enjoyed reading your post … good info! Good plan. Forum members are resourceful and helpful.

I am a harmonica school drop-out. My classmates have musical talent and experience. They are now reading music. I still pick up the harmonica, but not as much. I will see my pulmonologist this week and will ask about the harmonica, pulmonica, breathing device. I think you are on the right track with the breathing device and may go that route.

Keep doing what your are doing.

Best wishes,

Lorraine

[Lorraine]

Hi Linda:

Yes, given the circumstances returning the harmonica and books makes sense. And yes, revisit the need for Pulmonary Rehab, sometimes they cave when we are persistent and adamant. Good luck with this important cause. I hate the bureaucratic referral drama, and wish they would just step-up and provide it, leaving the drama aside. Grrr. I am glad you do not have Pulmonary Hypertension and sorry to learn the right ventricle somewhat enlarged. I hope it does not progress! I wonder about the pulmonica too. Odd that in our circles no one has ever heard of it .. and instead I stumbled upon the web site, while researching harmonica lung therapy. So if I do try the pulmonica, I will need to make up my mind about it within the money back guarantee period. (“If purchased from Amazon, the Pulmonica is also covered by Amazon’s 30-day money-back guarantee.”)

Best wishes,

Lorraine

[Lorraine]

Hey Linda!

Glad to hear from you.

I was wondering if you found out if your local BBC had a harmonica class. I hope your BBC contact has not given up on finding a harmonica instructor.

Now that you have the harmonica and books, have you tried to play?

Let me know if they hold a fall BBC and you attend.

I have not ordered the pulmonica yet, but have not ruled it out. I wanted to see if I make progress with the harmonica.

Thank you for your encouragement.

Best wishes,

Lorraine

[Lorraine]

I agree, Linda @swanlw45 … and as the night progresses and we continue to discuss the pulmonica, I am leaning toward getting it. “The Pulmonica also has lower notes than most commercially available harmonicas, and it is specially tuned to set up harmonics that vibrate your lungs and sinuses.”

[Lorraine]

Hi Linda @swanlw45:

Regarding the pulmonica I found the info under the Research tab interesting and optimistic. Specifically the COPD Study Quantitative Results. But given that they did not have another group using regular harmonicas, I wonder if the results would have been the same for those unsing both instruments. This is why even if I cannot master the harmonica, I plan to play it everyday. And after reading all of the pulmonica Amazon reviews, a couple of comments seemed to indicate that a regular harmonica or Incentive Spirometer would be just as beneficial. That said the instructor told us today, those who advance in the class, will be required to ultimately buy four more harmonicas — so I may end up purchasing the pulmonica at some point. If I do, I will let you know.

The crazy thing about NYC traffic, as you probably know, 1o miles can take 1.5 to 2 hours.  I live on Staten Island and the closest Breathers Clubs are in Manhattan. One club is at the hospital where I see my pulmonologist.  I was surprised none were here, given Staten Island has a high rate of asthma and COPD.

Lorraine

 

 

[Lorraine]

Hi Linda @swanlw45, Carol mom@49 and @cynthia-comery-ferguson:

So I had my first harmonica class today and I found it to be more of a practice session than a lesson.

For the time being we are not required to read music. The book we are currently using provides a simple get around. However, I am too slow … but the practice will be good for my lungs.

If I cannot get the hang of it, I may purchase a pulmonica from Amazon. To learn about the pulmonica … Google: Pulmonica Harmonica Respiratory Therapy or Pulmonica DOT COM. A pulmonica is costly, $100. but does not require any real talent (no background needed). Check out the web page and let me know your thoughts.

Thanks,

Lorraine

 

[Lorraine]

Harmonica Therapy in Pulmonary Rehab

February 27, 2018 By Dr. Jeremy Feldman

“Pulmonary rehabilitation classes can be beneficial for people with lung disease including pulmonary fibrosis. In addition to exercise, pulmonary rehab provides education and support. But some rehab programs are also adding music to the mix.

It might be surprising to learn that harmonica therapy is being implemented in some pulmonary rehabilitation classes around the country. Playing the harmonica may be helpful for people with various types of lung disease including idiopathic pulmonary fibrosis and lung transplant recipients.

Benefits of Harmonica Therapy for Pulmonary Fibrosis

Using the harmonica is a fun way to encourage the breathing exercises taught in pulmonary rehab classes. Blowing into the harmonica and inhaling through the small holes creates musical notes. But it also mimics breathing exercises, such as pursed-lip breathing. While you are generating notes blowing into the harmonica, you are also creating back pressure similar to pursed-lip breathing.

Although pursed-lip breathing is often taught to patients with COPD, it can also be beneficial for people with pulmonary fibrosis to decrease shortness of breath.

Playing the harmonica may also improve diaphragmatic tone. The diaphragm plays a critical role in breathing. The problem is many people don’t use their diaphragm efficiently, especially if they become short of breath.

What often happens when someone becomes breathless is they take short, quick breaths from their upper chest often called panting. But when you belly breathe, you use your diaphragm more effectively, which promotes deeper breaths and better gas exchange. As you play the harmonica, it facilitates belly breathing and may improve the strength of the diaphragm.

Playing the harmonica is also about learning better breath control. Certain songs may involve blowing to the harmonica in quick succession. Other songs may require alternating inhaling and exhaling at varying speeds. When you play, you learn to become more aware and in control of your breathing.

Learning to play the harmonica helps physically because it strengthens the muscles involved in breathing. But it can also provide an emotional boost. Music can improve mood and make breathing exercises a little more fun. Playing the instrument together in pulmonary rehab classes also provides a chance to socialize and laugh a little.

Getting Started with the Harmonica

Pulmonary rehab programs that have implemented harmonic therapy usually use a 10-hole diatonic harmonica. There are several types of harmonicas, but the diatonic is considered one of the best for beginners.

One of the great things about the harmonica is it’s not that difficult to learn. Even beginners with no musical background can learn to play easily recognizable songs.

To get the most out of harmonic therapy, it’s helpful to practice for at least ten minutes a day. If you get too breathless or dizzy, take a break and start back up when you catch your breath.

Whether you’re trying to play a little blues or a country tune, learning to play a musical instrument takes some time. But with harmonica therapy, every time you practice, you’re also getting a little workout for your lungs.””

Content written by Dr. Jeremy Feldman, an expert in Idiopathic Pulmonary Fibrosis, with contributions by MaryAnn DePietro, B.S. CRT, a licensed respiratory therapist.

 

[Lorraine]

Hi Linda! Good news your numbers went back up. Do you attribute it to anything that you have been doing differently during this period? Wishing you the best, Lorraine

[Lorraine]

@deliassen

Hi Denny: That is good news about your test results. Can you tell me the names of your supplements? Thank you, Lorraine

[Lorraine]

Thank you Charlene for tagging me. Wishing you the best.

[Lorraine]

Hi Christine: And yes this forum and its members are very helpful and supportive, bar none. And the level of information-sharing is outstanding and greatly appreciated.

Thank you for your kind and supportive response. Unfortunately, I do not have anyone else that can step-up. So far we are doing well … and I hope and pray that I can continue to help my parents and aunt. What weighs on my mind and heart of course, is if I cannot.

I will meet my counselor next Friday, for intake and then start my regular session in mid-September. I hope it is a good fit and helpful — I am ready!

On an average, The Guided Self-Compassion Meditations (MP3) recordings are about 20 minutes long. I practiced several times over several days and it did help.

I like your advice, “I am learning that at this very early stage that coping with this on a daily basis is like eating a large elephant, one small bite at time, one day at a time.,” I will try that philosophy.

Best wishes and with appreciation,

Lorraine

[Lorraine]

Oh Wendy, I did check out your amazing miniature world and the adventures showcased in the soap opera blog, I was hooked. Outstanding detail. You are very talented on many levels. Your city and the citizenry must be therapeutic and joyful — and certainly enjoyed by fans.

[Lorraine]

Hi Wendy:

Yes, I easily see how the self compassion meditation exercises are a life saver.

After a few hours of sleep last night, I woke-up startled, from a deep sleep, haunted by the disease. I reached for my laptop and played, then practiced one of the self compassion meditation exercises. That did the trick, I relaxed, and a peaceful sleep followed. Before calling it a night, I will practice another.

I hope the immunosuppressant medication keeps you stable and that you do not experience any side effects!!!

The only one’s in my camp, that I have told, do not to get it … because of the issues you mentioned, that they say I look good etc. That said I no longer feel comfortable in discussing the disease with my friends, unless they ask me.

And yes, in sum our new normal must come with a lot of self compassion and TLC.

With appreciation and admiration,

Lorraine

 

[Lorraine]

@patience21

Hi Pearl: While pouring my heart out on the ‘Living Our Lives’ forum, @wendy-dirks, was kind enough to turn me on to www DOT self-compassion DOT org — specifically the Self-Compassion Guided Meditations and Exercises. That night I listened to two Guided Meditation recordings and then another two the next day. Very helpful. You may want to check out the website.

I am scared and apprehensive about the future too. When my pulmonolgist asked how are you feeling. I said, depressed and scared. She said you should, which frankly made me feel worse, but then she said I must see a therapist as depression can have a negative impact on the disease, paraphrasing.

I live by myself and only have my elderly parents … who depend on me. I am there several hours everyday. There is no support group nearby, but I did find a counsel, who I will be meeting with one-on-one.

Wishing you the best.

 

 

[Lorraine]

Would love to see a photo of your collection, if you would consider posting.

Have you heard of Gulliver’s Gate? It is the Largest Interactive Miniature World On The Earth. 50,000 Sq. Ft. To Explore! And experience a massive, mesmerizing World of Miniatures. Explore 5 Continents. You may have the web site interesting. www DOT gulliversgate DOT com.

Wishing you the best.

Thank you,

Lorraine

 

 

[Lorraine]

Thanks Mark

 

[Lorraine]

Thank you so much Wendy. I really appreciated your input and information-sharing. I have looked to the link and like what I read. And when I practice and follow the mindfulness techniques of Dr. Neff, I will follow your lead and put my hand over my heart.

[Lorraine]

Hi Tony @anthonydegidio

Thanks for your post.

Your efforts to play the guitar and sing-a-long, shows real determination and passion, while still sharing your talent!! That is admirable.

I am determined to play Happy Birthday on the harmonica when we celebrate my dad’s 89th birthday next month. It will certainly add some laughs to the celebration.

I attended the second harmonica class and did practice a few times during the week. And yes I will let you know if playing the harmonica improves my lungs.

Best wishes,

Lorraine

 

[Lorraine]

Hi Steve @steve-dragoo:

Ha, about a year ago I looked at the How to Strengthen The Breath and Expand Lung Capacity for Wind Instruments via didgeproject DOT COM website (free-didgeridoo-lessons to strengthen, breath, expand lung capacity wind instruments.

Thank you for your encouragement, I hope it helps too.

Lorraine

 

[Lorraine]

Hi Steve @steve-dragoo:

Thanks for sharing!  Buddy Greene was amazing. I really enjoyed watching and listening to that performance. WOW.

As it turns out I am going to switch from the harmonica to the pulmonica. “The Pulmonica is a special Pulmonary Harmonica that produces deep, resonant sounds felt vibrating in the lungs and sinuses. No musical talent is needed – just breathing deeply through the Pulmonica is therapeutic and always sounds great.”

You might be interested in checking out the website pulmonica DOT COM and specifically the research tab. Would like to hear your thoughts on this breathing device.

I hope you are doing well considering.

Good to hear from you.

Best wishes,

Lorraine

 

 

[Lorraine]

Hi Linda @swanlw45:

What a great update! I hope the Breathers Club has a harmonica class.

I do not have a club in close proximity, so I will continue with my class for now, until they read music. I may consider taking an online class … because  like you “I am a better show me and let me learn by doing” person too. I saw on line how to hold the harmonica, and with two hands. And a classmate told me not to move my head, move the harmonica.

At this point, Happy Birthday is about the only song that is recognizable so far. But I think it is helping get the gunk up. I also read on the Pulmonica DOT COM web site, that exhaling and drawing off the first three reeds is great exercise for those of us with lung diseases.

Looking forward to hearing more about your harmonica adventure.

Enjoy,

Lorraine

 

[Lorraine]

Hi Linda @swanlw45:

We were told to buy a key of C harmonica. I bought the Fender Blues Deluxe Harmonica, Key of C from Amazon for $10. At the same time, I purchased the required song book, First 50 Songs You Should Play on Harmonica for $10.

That said I will attend my first class tomorrow. I hope I can learn to play …  it would be fun and an excellent pulmonary pre-hab for me. This class is offered by the Center for Lifelong Learning and Development at a local community center, available to anyone 60 years old or above.  So altho I am not pre- or post- lung transplant, I just thought it would be good lung therapy. By the way I was also told I did not need official pulmonary rehab classes either, instead to continue to walk and go to they gym on my own.

I hope you can find a harmonica class too, if you do please let me know.

It was nice to hear from you.

Best wishes,

Lorraine