hemophilia

Infused With Music: Maxwell Feinstein

By Shelby Smoak

When I get Maxwell Feinstein on the phone for our interview he is walking the streets of New Jersey on his way to Silver Horse Sound, the recording studio where Maxwell can be found tracking his own music, streaming live music posts on Facebook, or working with other artists who have booked time with him.

Today he has two rehearsals, a bass tracking session, and a mix session. “Tomorrow sees us doing two more recording sessions unrelated to the session previously mentioned and I’ll be meeting with a potential songwriting partner for some children’s music,” he adds. In a world where earning your keep with music has become an almost impossible task, Maxwell, a person with hemophilia, is able to keep things moving.

Maxwell got his first guitar at age eleven inspired by Nirvana’s “Smells Like Teen Spirit,” and the “teen spirit” to play music struck hard. “I had been participating mostly in choirs or theater before this,” he says, “with brief flirtations (weeks of interest at most) on violin, flute, clarinet and saxophone.” But once Maxwell found the guitar, he took school hours to steal away into an unused handicapped bathroom which he transformed into his band room. “People used to use that space as a make-out room,” he says, “and I would just sit there practicing.” Maxwell adds, “If you wanted to get some necking in, you’d have to put up with me practicing” because nothing was getting between him and his guitar.

Now, in addition to running a studio, Maxwell dons a guitar or bass—depending on the need—in a bevy of touring bands: Jaime Della Fave (Jaimerosey), BWQ (or Project BWQ), Terra Electric, The Love Network and Debra Devi.

“My policy is basically that I’ll perform with anyone who asks!” he enthuses. He also writes, performs and records his own music, some of which can be heard on his solo release Round of Sound. In talking about Round of Sound, Maxwell calls it a labor of love with himself and other friends who helped him complete it. “I played most of the instruments save for the drums, and we did it in our rehearsal room just stringing microphones up and grabbing the sounds 60’s style with little regard for sounds bleeding onto the tracks.”

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Stand-out track “Mad Dog’s Promenade”, released in 2012, highlights Maxwell’s whimsical style with its off-the-cuff lyrical refrain, “Smile to myself as I walk.” “It’s a song about walking around town, going about my business while musing on how good I have it if I get to go make music when I’m done walking around,” he says of the track. But not all his songs are easy-going tunes. “I’ve written about coping with those I’ve lost,” he reflects, “and I’ve written about loves current and past. I’ll often write about whatever’s interesting to me at any given time.”

And then there is Maxwell’s hemophilia, which, as he says, “visits me when it wants.”

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He has lost cartilage in his elbows; played shows with ankle bleeds, knee bleeds and elbow bleeds; dealt with nose bleeds while on tour. “I had a nosebleed from two days before we left on a tour until the last tour day two weeks later,” he says. But it hasn’t stopped him. He takes care of his hemophilia so music can take care of him.

Before ending our interview, Maxwell offers this advice, culled from his own experiences: “Try your best to figure out what makes you happy and what builds community around you and how you can make it grow into something you can be proud of toiling for.” Maxwell has done just that.

Maxwell Feinstein’s music can be found at: http://www.maxfeinstein.com

Infused With Music: Elizabeth Vansant

By Shelby Smoak

While she may be a bit too shy to take the stage with her musical talent, Elizabeth VanSant is not shy to bring music therapy to people’s doorstep.

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Along with the rigorous demands of a college degree, Elizabeth recently finished her B.M. in Music Therapy at University of Kansas with over 1,200 clinical hours completed. She pulled up her mid-western roots and struck out for the rainy marine climate of Seattle where she has already started working.

“I’ve actually gotten three music-related jobs since moving to Seattle six weeks ago,” Elizabeth explained. One of the jobs includes working with special needs children and young adults, holding weekly social groups and using music to improve their social skills. Another job includes working with infants and toddlers as a music specialist. And a final job offer is so new she is still awaiting details. Certainly, it’s an exciting time for this twenty-something college grad.

Elizabeth’s passion for music started with dance, but the perils of having hemophilia B soon took away that opportunity. “From all the ballet, tap and jazz I was doing,” she says, “I got a stress fracture in my left ankle and was unable to continue dancing.” Enter then the piano, which she has now been playing since third grade. Along the way she has learned flute, guitar and a variety of percussion instruments. She also loves to sing. All these things are made obvious when watching Elizabeth play: she can fluidly sight read music without missing a note and can match the vocal with near pitch-perfection on any song.

After high school Elizabeth sought an avenue to have a career in music and began studying music therapy. She shares, “I immediately connected with it because I realized that I had used playing piano to express my emotions when learning how to self-infuse. I thought to myself, if I can help people with music in the same way that it helped me, I would be incredibly happy.”

Music therapy however, isn’t just listening or playing music. “While listening to music when you’re having a bleed or are not feeling well is therapeutic, it is not music therapy,” Elizabeth says.

Music therapy is working with a trained professional and using music as an intervention tool to accomplish a specific goal for healing or personal development. All persons receiving degrees in Music Therapy must attend an approved university and, before they can practice, must be board certified by The American Music Therapy Association.

The American Music Therapy Association’s website details several of the therapeutic advantages that music therapy can provide: alleviating pain, enhancing memory, managing stress, promoting physical rehabilitation and others. Therapy is also proven in treating conditions such as Alzheimer’s, autism, pain management, mental health issues and PTSD. Moreover, music therapy can be covered by certain insurances: Medicare under their Partial Hospitalization Program (PHP); Medicaid in certain states; and private insurers like Blue Cross Blue Shield, Aetna and Cigna.

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Elizabeth’s own struggles with hemophilia, she says, likely pushed her into music therapy. Because of her bleeding disorder, she gravitated toward playing more guitar and piano as she was growing up. “It was a release for my anxiety,” she says, adding “and playing piano and guitar certainly helps veins grow right before infusing.”

Now, hemophilia is only sometimes limiting: “One of my target areas is my right shoulder muscle, so sometimes it can be difficult to play guitar, which is the easiest way for me to accompany myself during music therapy sessions.” But that isn’t stopping her. “Thankfully, this hasn’t happened in a while, but it’s something to always be mindful of.”

In closing, Elizabeth advocates for persons to incorporate music in their lives. “Music can help you be more self-aware,” she says, “and it can be an excellent way to express, and even redirect, your emotions.”

In addition to her work in Seattle, Elizabeth takes her passion on the road, running Music Therapy workshops at various hemophilia events and sometimes overcoming her shyness for a few cameo appearances in The Bleeders, a hemophilia-inspired cover band.

More information on Music Therapy can be found at The American Music Therapy Association’s website: https://www.musictherapy.org/

The Benefits of Kinesio Taping: Ask The HemoDoc

By Dr. Michael Zolotnitsky, PT, DPT

Ever rolled your ankle or bumped your knee forcing you to limp around a few days, use a brace, crutches or even a wheelchair? How about a jammed finger, twisted elbow or wrist bleed that made you avoid using your arm making simple things like shaving seem so challenging?

The question lies in what you do when this happens. Do you rest, or do you move?

Growing up with severe hemophilia, I woke to countless mornings not being able to walk because of insidious thigh bleeds. I cautioned myself during basketball to avoid another jammed finger that would inhibit me from closing my hand for days. At a young age, I was unsure of how to manage persistent bleeds aside from my prophylactic treatment. Upon completion of my doctorate in a physical therapy program, I made it my mission to educate the bleeding disorders community.

Dr. Michael Zolotnitsky

Dr. Michael Zolotnitsky

It began with aquatic physical therapy, alternatives to pain management, safe sports and safe exercises. Then I discovered elastic therapeutic tape, also called kinesiology tape, Kinesio tape, k-tape, or KT, an elastic cotton strip with an acrylic adhesive used to treat pain and disability caused by athletic injuries or other physical disorders. Using this helps control pain and support weak muscles. Two years ago, I delivered my first kinesiology taping presentation teaching individuals with bleeding disorders how to properly apply Kinesio tape. The results? Individuals with joint issues found pain relief and could move more quickly and comfortably.

Kinesio tape provides the support of a brace, but with flexibility to prevent limited range of motion and reduce muscle contractures.

It can also facilitate weaker muscles or inhibit tight muscles from firing. One of the most effective taping techniques helps reduce swelling by draining lymphatic fluid or draining synovial fluid.

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Without proper instruction, applying Kinesio tape can cause more harm than benefit. For those who are unable to work with me in person, a YouTube channel (hemodoc) is available as an online resource. My goal is for every individual to live life to their fullest and not allow their medical condition to define their ability!

Individuals are not created equal and it’s difficult to have a “one size fits all” solution. My advice is to first consult with your physician or hemophilia treatment center, ask about the use of Kinesio taping in your individual case and check out my YouTube videos for guidelines on how to effectively apply Kinesio tape to help alleviate painful joints.