Mount Sinai-Beth Israel Cystic Fibrosis Family Education Symposium

(00:09):
We had a chest physical therapy. She joined the pulmonary wellness. I don’t want to wait exist. In 1998 as a founding member and senior physical therapist, Mary [inaudible] is the chief of the centers Airware airway clearly student. We specialize in helping patients mobilize patients through chest physical therapy and a diversity of thoracic mobilization devices. Without any further ado, I would like to welcome Mary not goals of the pulmonary

(00:56):
[Inaudible].

(00:56):
I know some of you were expecting no agreement. Then here moves our director. I sometimes play them on TV but I have not normally used them. You probably recognize some of the themes sometimes represent what people think you are, what your relative thinks they are. And personally they spend a lot of time in their life, in your life using them, cleaning them or more than them. For many of my patients, they spend a lot of time trying to avoid them. So I’m going to take this off for a minute.

(01:40):
What I really want to talk about, it was so hard to think about what I was going to say to you because be quite Frank. In our practice, we learn from our patients. Everything we know came from our patients and their relatives. You have been our teachers, your relatives have been our teachers and doctors and support teams have been our teachers. Oh. What we like to do at pulmonary wellness center is, well, it’s become our theme. We call it ultimate pulmonary wellness because we like to take everything inspired by life. Okay. Inspired by life. That’s our theme. Breath is inspired by light. Your disease is not your life, your life is your life. And then you have to deal with this other thing and how to deal with it so that you can enjoy your life and have it. And I know a lot of our patients, you know, every time they’ll say, Oh, did you try this one more thing?

(02:40):
You don’t understand. I start at this time with this. Yeah. You know what? It sucks and I really can’t understand it because I don’t have to live that way. But I can try to hear and appreciate what our patients go through and try to imagine what they go through and let them help me so that I can help them. So our theme for, or our compartments are components of ultimate pulmonary wellness are thieves and alum. If you have them already, food, a relationship with great doctors and a really good relationship where they appreciate what you say they’ve listened to you, they adapt what they do for you and make it easy for you to understand. So maybe it’s also easier for you to adapt to some of the things that they have to tell you have good team support. Team nutritionist. Nutrition is very important and we hope when our patients come that we can help them to make sure that they’re following whatever routine they’re following before and after they exercise and to keep them going.

(03:52):
The other thing which I just mentioned, exercise, exercise, exercise, exercise. Why? Because exercise is not only just keeping your body in shape. Do you know that a lot of exercises can act as a clearance method? If you exercise vigorously enough, it can help you with clearance. If you have a yoke of something, do something like yoga, it can actually help with Rick cable mobilization. Some positions are actually drainage positions so you can act. Here’s what beauty, it’s also trying to figure out how to multitask. How can you take exercise and bring it into being a drain? Something from drainage. So now you have, you’re taking two things that take up a lot of time in the day and at least for, you know, for at least one of those times that you do it, you can combine it. There’s also stress, stress, anxiety. You know when you can’t breathe, it’s like who here has had a time in your life where you couldn’t breathe at all?

(05:03):
Do you remember what it felt like doing? Remember the panic. Okay, so think of that and try to almost embody it when you’re dealing with somebody who can breathe because it helps you to understand a little more. The type of thing it that someone goes through all the time. And as a parent of someone who has a chronic disease themselves, my son does. I also understand the type of anxiety that a parent can have when you cannot help your child or you cannot help them help themselves. It’s hard. And that also causes anxiety and it causes anxiety in the relative, in your, in the prison who is ill. So it just keeps feeding on itself. So one of the things that is great is, you know, if everybody could partake in some sort of activity, helps with that anxiety. Meditation exercise, again, helps with anxiety. You can do certain types of meditation that actually help with your clearance. I mean, it’s kind of funny to think about going into a room and going,

(06:15):
Mmm,

(06:15):
But everybody who’s here, believe me, nobody will make you pick a fool of themselves in I world. So just take a breath in, but I want you to take it enough to get in through your personal to the math. Just nice smile right there. Now tighten your legs and just give me your

(06:45):
[Inaudible].

(06:45):
No, take even a bigger Brendan. And this time I feel all the owners around

(06:57):
[Inaudible].

(06:57):
Now take a deeper, do a deeper take me to take a different tone, a desktop ready that didn’t

(07:10):
[Inaudible]

(07:11):
Do you feel the vibration in your chest? Feel the vibration of someone else around you. Kind of like, wow, do I really need this patch? So this is something that you can do. Meditation. I love meditation. I have something that I do with some patients because not every patient likes to use these every morning. Oh, I don’t have time, you know, blah, blah, blah, blah, blah, blah. These are all the various different positive excretory pressure. Devices that have been used over the years and are still used and I love them, but they don’t also have to be used the way that the, the manufacturers tell you they can be used with things while you’re meditating, while you’re exercising, you know, but you have to work with work with the person who is using it, work with a therapist who really knows this stuff.

(08:14):
And I also a lot of times will say to patients, to doctors, have you used this three times a day, the way that it’s suggested, I suggest you do it and see what it feels like to actually have to do this. Sit down and do this the way that, the way that manufacturer suggest that you do it. And there are lots of tubes. I always take what the manufacturer does and devise it helped me devise it to work with that patient. So it may not look the same way. I love to do use it with meditation, with something called active cycle of breathing, which is a breathing technique. There are a lot of things I cannot cover in like 15 minutes. I would love to share them with you because I could talk about this all day long. And just, you know, definitely exhaust you.

(09:02):
But I’m not going to do that. So one of the things I do want to do, I’m going to take off this persona and striptease you’re going to get tonight and what I want you to do, these two [inaudible], what I want you to do is now they use your hands. How many of you do any percussion? How many people do compassion on somebody? Okay, so you know your cup tans. Again, when everybody cut their hands, this is some of the start of what I call a morning wake up. For those people who want to use one of these instruments, especially in the morning or it’s something that they’d rather meditate first. So here’s a way to do both. Okay? So you just start with nice tasks.

(09:58):
What I want you to focus on is do you feel air going from one camp to the other? Because you should not be focusing on the tap, which you should be focusing on as all those little those models to help clear, let’s move it around. Have some good pops. Okay? Yeah, I like that. It’s kind of fun when you get a really popping air pockets, getting excited. What I want you to do. Do you feel those vibrations? Take a breath in. Now we’re going to take that kind of own that we do, but we’re just going to hum. I want you to picture a tube going through your head because so many times people focus on getting the air into their chest. So they do where they do the belly breathing, which I hate because you’re not breathing in your belly, breathing into your belly and you’re doing CPI.

(11:34):
That would be like really dangerous. You’re getting the air in the wrong place, not breathing. So this is a good way of getting the air into your lungs without focusing on where it’s going. I happen to do all my exercises with her, slips through her slips instead of my notes because I have a terrible nasal drip. And what I’ve discovered with 14 from all such love, a lot of wonderful patients is so did they. So all of a sudden we not only have, you know, so what I like to do is sort of cut this out and just focus on to and through them out just for these exercise snack. How we teach people to breathe. So I want you to see, it’s what this little pole come through your heads around here. You’re going to take air in through it and let it pass out the back. Just picture it. Okay. And now what you’re going to do is just [inaudible] [inaudible] no, don’t apologize. That’s fabulous. Open it up. Okay, one more [inaudible] no, let’s try a higher tone. [inaudible]

(13:17):
Again. [inaudible] now a lower tone. [inaudible] Feeling vibration making. You’re thinking this is crap. [inaudible] So try to sense the feeling in your whole body. After that, we’re going to do a run of what I call run a pus. And I came across this because one day one of my patients was trying to fold in a while and when she finally let it out, the service town, I got hit by a nice water. A lot of what I do, even when I use these devices, I like to do it because I feel like it’s a good warmup for a cough or Huff, whichever one people do because some people call us about stuff. Okay, so this is what I call a runoff. It also, if you ever do this, you may be able to petition for a role in a Shakespeare play. Maybe you could take over the parking lot here. So the first thing you’re going to do is take a breath in again and you gotta to just say before puff, but without verbalizing it. So it and just, and then you’re going to do it a little faster.

(15:12):
[Inaudible]

(15:12):
Have any of you ever tried to use one of these is modes? Does anybody in your family use them? Okay. It sounds like the sensation that you get when you’re using one of those not quite as intense again, then

(15:37):
[Inaudible]

(15:37):
And you can take one deep breath in. And this is, this is what, this is like the game winner and take a breath in. You got to hold it. You might not want to have face to mirror somebody else’s head. Okay. And you weren’t going to say a pug. Roll it across the room too. It looks like this. Ooh. Yes, I’ve heard that. Did that over here. Out of the ballpark. Okay. I can look. I’ll hook you up with somebody with your meds or Yankees. That was great. Try it again. Ready, ready, throw it across.

(16:18):
And then I like to follow that because now what we’ve done is we’ve done a little tapping rating. You’ve done a little bit of something that will help open the airways up, get a little pressure going to help, start bringing things up. Then I like to do some rib movements because even when we’re doing, at least when somebody gets a professional drainage sometimes, and I mean relatives can do this if they’re taught probably there’s also not just the tapping, but there’s a lot of rig mobilization, blood bouncing movement of the ribs move into the arms to help again mobilize this fridge because it’s also important that those rib cage moves. Okay. That is part of the breathing mechanism that helps one clear and helps get breath in and out this motion. Right? So if those, if that starts to get stiff from, because Paulson things that scar and get inside so that they don’t get as much movement and the less they move, like everything else, the less they move or from lots of surgeries, all that scar tissue from various surgeries from tubes.

(17:33):
Okay. There’s things that you can do to help the scars, but also you want to move away from the campsite app. So what I like to do is do some breathing exercises that mimic the natural movement of a child’s bird cage. Okay. But breaking it down, because to tell you the truth, everybody’s retake starts to step in and starting at the age of 32 so it’s just to what degree. Okay, so here we go. The first one is called the sword. It’s very simple. Again, you got to cross your hands over as far as you can. You’re going to stare at it for if anyone here has ever worked with a therapist. So it was developed from what called from PNF movements, which came from a lion by the room. Okay. This is where you get to be a swashbuckler. In my error. Correct. You’re going to follow that hand wherever it goes with your head and your eyes. You’re going to bring it up on a diagonal and read it Roman and then open and close and close. Other side [inaudible].

(19:04):
The next one that you’ll do, I help with this one most about each other. It’s called the YMC, but we’re just doing the Y. Okay. We’re going to open up a repeat I guess looking up and then add one more. The last one I call the water pump here. The handle of the water pump. Okay, so you’re going to take your hands with down. Okay. I like things to be done sitting. You don’t bring, it tends to be more body. When you sit you can really just make sure the Ritz of email of the life. That’s one.

(20:01):
And then just, I just want to do a four, so I’ll take one breath in. I’m going to hold my breath for a second while I get my hand in physicians here and I am going to do a controlled clock, which is three small cops on a breath. Just break some stuff up. I never really worry about if like I do have some, there are some people that just get in the cup, just get it, the cup, just get in the cup, cup, cup, cup, cup is that I tend to have a little more trust in the body and I have success this way because a lot of times it may not be ready. It’s thick. It’s hard to get out. And it might be depending where it’s traveling from and how much silly action you have. And a lot of things play, take, you know, play play a role in how fast it comes up.

(20:59):
Sometimes it just hangs out for a while and then all of a sudden you can feel something rumbling and use any kind of equipment or do another set of PPAs and it will come out. So sometimes you have to let nature do its thing for awhile and then we turn okay. But it can be while you’re doing something else. Okay. Do you like the harmonica? There are a lot of people playing the harmonic and happy because it does help with clearance. So you can be sitting at your computer and you know, get out. If you can’t do it with your hands, get a harmonica holder. So many different ways to do it. Now that’s not to say that I don’t tell my patients you need to get chest therapy or you need to have somebody learn to do it and you should be having it done once to twice a day.

(21:51):
If you can’t get a best, not that, Hey, why don’t you nebulize while you’re wearing the vest and finish off with a few blows on this. And then sometime later on in the day like everyone else, go to the gym. Well, if you can’t go to the gym, work out at home or wherever. Some of our patients do come to places like us or with certain types of protection can go to a gym or home gyms, whatever, but, and then get a vigorous, vigorous workout on a treadmill or wherever you can. So Barry, I’m at seminar [inaudible] because I really wanted it. And with one thing, which is, can I have like three more minutes? Yep. Okay. So kid. So I want to just get it because I didn’t consent. Okay. This is called [inaudible].

(22:58):
This is a good way. It’s a great exercise. This was developed at the university of Southern California and you’ve added a few moves of our own to it because there was so many good life. I’m sure other people have done that too. Honestly, this is a group of movements there are we, with the ones that we’ve added, there are 16 it varies from whatever. The great thing about homicides is it’s not timed. I mean it’s not counted it’s time. So if someone needs to do it slowly, they can do it slowly. And a lot of times on the videos on YouTube you’ll see or, but if you can do it vigorously, which we try to get our patients to do as soon as possible. It’s a great way again to get things moving and then use something to, you know, do something else to help work it out.

(23:50):
Hang over your bed, you know, get a Swiss ball, hangover, Swiss ball and connection you want there just, I mean, I think from the ceiling of the shed until we just it ever, you know? But there are lots of different ways that you can do this creatively and put it in programs so that it’s not taking up every hour of your life. Okay, so this is called [inaudible]. I also like to have people on my family members do this to sit in front of the computer just for those computer breaks because you can start with 30 seconds and work up to a minute. But if you only have 30 seconds, you can do 30 seconds and boom, you have maybe eight minutes you’ve done something. Okay, so I’m not going to do it all with the emphasize, but this is how it goes. We’re just tight counting, we’re timing, we’re not counting.

(24:37):
So again, it’s at your own pace. You can use breathing in through the nose. Now this is paced breathing. You’re going to blow out twice as much as you breathe in. If you can’t do it in for two out of four, in for three, out for six, then you can just think about blowing out more than you’re breathing in. That’s going to be your focus. However, you can also, which I also love vocalization. Singing is great. Okay. So if you want, you can sing while you do this. Okay. So recently we actually had a guest musical musical therapists come to our place, and this worked really well with our size. So we’re going to do this, you know, Hey, Hey, Hey, Hey. I’m not tiny, but just to get [inaudible] [inaudible] take a deep breath in. Let it out this time. Sign it out. Ready? And one more. Good luck. Okay. So here’s your take home message. Go home.

(27:07):
[Inaudible].

(27:07):
Do the stuff with joy. If you’re doing percussion on a family member, do it with joy. Learn what’s the experiences of percussion. Don’t worry about them at the moment. Just sense how it feels in you. When it feels right in you. You’re going to be doing it right on them. I thank you.

(27:36):
[Inaudible].