Music in my life. Adjusting to changing abilities with my bari sax. An experiment in multimedia sharing. Listen, watch, read. Best to watch the YouTube video.

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Episode Notes
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Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headings

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Danny on Bari sax music playing in the background, sitting, using a strap to hold the horn

Proem

Playing and not playing with Multiple Sclerosis 03:53

Eureka, a Sax Stand 06:06

Reading sheet music with double vision 10:10

Need help, ask for help, get help 14:12

Looking ahead 15:13

Lechuga Fresca 16:24

Prequel 18:11

Cold Sweat 21:20

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Credits

Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger

Web and Social Media Coach Kayla Nelson @lifeoflesion

The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Danny van Leeuwen (Health Hats)

Sponsored by Abridge

Inspired by and grateful to Jeff Harrington, Joey van Leeuwen, Kayla Nelson, Kristina Johnson, Larry Mazza, Peter Cicco, Dan Fox, Glen Alto, Josh Rosenstock, Betsy Neptune, Andrea Condit, Cornell Coley, Stephen Debenectis, Jon Fraser, Bruce Hoppe, Gabrielle Pitman, Eric Solomon, Ryan Vasios, Karen Welling, Harry Wolfson, Cynthia Meyer, Cherie Binns, Carol Band, David Bourne.  OMG, what a list!

Links

Enabled Disabled Project

Lechuga Fresca – Cool as a Cucumber

Morningside Studios

Second Wind Movement

Al Gallodoro

Related podcasts

https://health-hats.com/listen-to-the-music/

https://health-hats.com/pod134/

https://health-hats.com/pod146/

About the Show

Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare.  Let’s make some sense of all this.

To subscribe go to https://health-hats.com/

Creative Commons Licensing

The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines.

The Show
Danny on Bari sax music playing in the background, sitting, using a strap to hold the horn
Proem

I recently joined the Enabled Disabled Community, hosted by Gustavo Serafini. They asked me to tell them more about my sax playing as a person with disabilities. Aha, a podcast episode! What a challenge – audio, video, and print media all in one for people who follow me and those who don’t know me. Here goes. For those who don’t know me, I’m a bald, hat-wearing, two-legged, cisgender, old white man of privilege with secondary progressive Multiple Sclerosis.  I’m a two-forearm crutch / electric wheelchair kind of guy, although I can walk without in our two-bedroom 950-square-foot flat if I can spot touch or hold on. I try to walk 3,500 steps a day with my forearm crutches. When diagnosed with MS, my neurologist said he had nothing for me better than playing the bari sax. Playing bari kept my lungs solid since I have intercostal muscle involvement (breathing). With the big heavy keys on my bari, my dexterity maintains, and music creates new brain pathways in my Swiss cheese brain.  Cool, eh? In this audio/video/print mashup, I’ll play more for you than I’ve ever done on my podcast—a sign of my growing self-confidence.  I will play, share some history, and show you my setup, including some clips of Lechuga Fresca, the Latin Band I currently play in, and the Saturday Morning Funk Band from 2015. Please note that the music for my intro and outro are done by my cousin, Joey van Leeuwen and his New Orleans band. I recommend you check out the linked show notes and watch the YouTube video for the full effect, but the audio or print may suffice.  You tell me. For those not accessing the visuals, I use the 8×10 entryway to our flat as my office, studio, and practice room. You would see a wall of about 20 hats – my summer hats. OK.  Let’s jump in.

Playing and not playing with Multiple Sclerosis 

I’ve been playing the baritone saxophone for about 40 years. One of the ways that I learned I had multiple sclerosis. was that I was having trouble with my balance, my strength, and my vision. So that manifested itself in that I was seeing double. It’s hard to read music when you see double, I would stand to solo and I would knock my stand over, standing up. It was frustrating. But I played, I played quite a bit and I played sitting down and I played sitting down with a strap like this. And then about, I don’t know, eight, ten months ago I just started having really a lot of back pain. I couldn’t really hold the saxophone. It’s a heavy instrument. It weighs about 12, 15 pounds and it was just bothering my neck and my shoulders, and I just couldn’t play. And I just had back pain and I couldn’t sit. You know, I certainly couldn’t stand and play, but I couldn’t sit and play. I was spending a lot of time on the computer sitting and then playing music sitting, and it was just all too much.

And I had to go about, I don’t know, six months without playing. It was crazy. It was awful. I was like, okay, this is the end of my playing. What am I gonna do now? Play a different instrument, but I love the bari. So, my teacher, Jeff Harrington, I’ve been studying with him for long time, really, since I was diagnosed.

 I was telling him; I just couldn’t do it. And I was canceling lessons. And he found this company in Germany that made this stand that I’m gonna show you where I don’t have to carry the horn anymore. I can do it sitting and standing? Let me show you how it works.

Demonstration of putting together the bari sax stand
Eureka, a Sax Stand

So here, let me show you here’s the device. The base it’s like, kind of material used in percussion. Got my fingers caught. See, so this’ll go on the ground, okay. See here’s dropping stuff. All right. Here’s the base. Just opens. See, here it is. Here’s the base. Then I attach another piece to it. We show it to you sitting down first. And then here’s the part that the horn goes into. See? And there’s a swivel, so this just swivels. Okay. So, I’ll see the horn just fits in here. I can see now I can just roll away from it or I can put it up to it and play and then roll away from it. I could stand up to it. Right. pretty cool. Huh?

So that solved one problem. I can get rid of this.

 Taking off the bari shoulder strap

I can’t use this anymore. So, let’s just pitch that.

Danny playing bari sax, standing, using stand play

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Reading sheet music with double vision

Okay, so then I’ve got another problem. I have sheet music. See, can you, I have sheet music and I’ve got wicked double vision. It’s sometimes corrected, but mostly not. And so it’s really hard for me to have the music on a stand, and read it. I just double vision. So, one of the things I did is I got this a mic stand. Okay. I have to move it down so you can see it. So now I, I bought a super large iPad. See, there’s my super large iPad, and I got an app, which I can show you. I don’t know if you’d be able to see, let’s see where I have the music on the iPad. So, it’s there. You can see, you can sort of see the music. See it’s on the iPad. Well, I can adjust the brightness. I can, it’s pretty large. I have a stylus I can, write on it. So, I have an app and I use the iPad. So that makes it much more possible. Then I have a foot pedal, which I. See, if you can, I can figure out to show you so you can sort of here now. You can see, my iPad. And you can see, I have the music on the iPad. And then I have this device where I can press the Bluetooth device and I can change the pages with my feet. It’s a little bit of a challenge because left leg is pretty weak. I need my right leg to stand on, but I can use my left foot, which is, you know, again, weaker to press on the pedals. That helps me turn the pages. So that’s my setup.

Need help, ask for help, get help

Where there’s a will, there’s a way. I’m grateful to, the people who helped me out because I need quite a bit of help. My teacher, as I introduced already, Jeff Harrington, he’s the one who found some of this and, helped me, you know, figure out how to stay set up, how to get set up. And then I have my roadies. I play in a band, Lechuga Fresca we’re a Latin band. I have my case, which is pretty big because it’s a big horn, but it’s on wheels. And then I have a bag to carry all my equipment and, they help schlep stuff. And my wife helps me, and different people help me. You gotta get help. What can I say?

Looking ahead

I have thought about, what if I can’t do this anymore? And one of the things I’m looking at is sort of the next stage is there’s like a virtual horn, a MIDI horn. So instead of a MIDI piano that has a lot of sounds, it’s a horn that actually has a mouthpiece and you can load all sorts of different sounds, whether it’s the bari sax or Alto sax or flute or trumpet or guitar. It weighs about two pounds. I guess if things deteriorate, I have another direction to go. I’m always thinking about what am I gonna do when I deteriorate further, but so far so good. I’m playing like an hour a day. And I rehearse with the group couple times a month, take lessons once a week or so. And I love it. I just love to play. And I’m glad I’m still able to.

Lechuga Fresca 16:24
Lechuga Fresca playing Midnight MAMBO WITH Danny soloing
Lechuga Fresca playing Viva Cepeda
Prequel

Usually, I write a reflection at the end of an episode instead, here’s a prequel. How did I ever get to playing the bari sax? Well, I played the clarinet in the fourth and fifth grades. I was good and I enjoyed it, but I needed to rebel against my mother who insisted I practiced for an hour a day. So, I quit. One of my few regrets in life. In my thirties, I wanted to get a master’s degree. I had an associate’s degree in nursing and 190 credits with no bachelor’s. I needed a bachelor’s to get a master’s. West Virginia, where we lived offered a Regent’s degree. I had enough credits in all the correct categories but needed eleven credits in the state of West Virginia. I went to the music department in a local community college in Glenville and asked to take clarinet lessons for two credits. Nope. I had to be a matriculating music student. While being told this disappointing news, someone walked through the office and said they needed a sax player for the jazz band. Could I play? No, but give me sax and clarinet lessons and I’ll play in the band. Five credits. Deal sign. The next semester, the jazz band needed a bari sax player. So, they gave me a bari sax to play and I fell in love. I got the Regents degree and quit playing to get my master’s in public health and healthcare administration at the University of Minnesota.

Several years later, we moved upstate New York and I met someone at a church picnic who played in a community concert band. I joined, bought a bari sax and started playing. Since then, I’ve played in a college jazz band where I knocked over my stand while standing up to solo; in a big band; jazz and funk blues ensembles and now a Latin band.

One of my teachers was a virtuoso clarinet and Alto sax player, Al Gallodoro. Al was 90. Had played with Bix Beiderbecke, the NBC Orchestra and had a solo concert at Carnegie Hall. He was often frustrated with me, yelled at me, and called me boy, but he said, your sound is excellent. I got nothing to teach you there. I loved hearing him play. It was magic.

I played the clarinet at my son’s wedding with When You’re 64. that was a highlight of my music career. So that’s my story of hutzpah, timing and persistence. I hope you enjoyed the show. I had fun putting it together.

 The Saturday Blues Funk Band playing In a Cold Sweat at Ryer’s Jazz Club in 2015. About 5 more minutes with the outro
Cold Sweat