Patient Spotlight: Greg Moomjy

man in wheelchair smiling

Meet Greg Moomjy:

I am 29 years old and in recent years, as a man living with Cerebral Palsy, I’ve been trying to live as independent an adult life as possible – while still living with my parents.

How did you find the Weinberg Family Cerebral Palsy Center (WFCPC):

I have been a patient of Dr. David Roye’s since I was 8 years old, before the Weinberg CP Center was founded. As the Center developed, Dr. Roye introduced me to the WFCPC community, and I have been involved ever since.

How has the Weinberg Family Cerebral Palsy Center impacted your care:  

I really felt the need to meet other people with cerebral palsy who are also strong, smart, and independently minded. Dr. Roye told me about the Weinberg Center and the possibility of there being a support group. I knew about the Weinberg Center before the support group was even set up, and I have to tell you I’m so grateful for this support group. We meet once a month but even I didn’t realize how much I needed it, even if it’s only once a month. 

What is one thing you would like people to know about the Weinberg Family Cerebral Palsy Center?

After joining the Weinberg Family Cerebral Palsy support group, I have formed lasting friendships because of it: I’ve been to several Broadway shows with someone I met through the group. I also met a friend that ended up being my date to my best friend’s wedding. I know it sounds cheesy but I would tell other people with CP to join the support group because you’re not alone, there are other people out there dealing with similar struggles. There are other ways to meet people with cerebral palsy, Facebook groups, message boards,etc., but all those can degenerate into pity parties… and something like a support group can give you so much more.

A Lifetime of Care; David’s Story

It was May of 2004 when David Justo-Cruz was born 9 weeks early and immediately incubated at the hospital. His mother Lorena was told soon after by the neurologist that David was showing signs and could be diagnosed with cerebral palsy. Lorena didn’t notice much of a difference with David compared to other kids because he was mentally well and active. It was when he started to fall behind physically and around the time David should be learning how to walk that Lorena knew she needed to see a professional.

Lorena took David to a neurologist who ended up telling her that David will never walk. After getting that devastating news, Lorena did what was best for David and began getting second opinions all over the country and even back in her home country. Along that journey she was recommended to a neurologist Dr. Cigdem Akman at Columbia Medical and NYP, who saw David and referred her to orthopedic surgeon, Dr. Joshua Hyman. David was just a little over 1.5 years old when he saw Dr. Hyman for the first time. From that point on, Lorena and David knew they were not going anywhere else. “Dr. Hyman was very sweet and patient with us and actually explained everything to me, ” said Lorena.

Dr. Hyman took care of David and monitored him in different braces over the years. He also had David continue with PT and OT until he was ready for surgery at age 7 in 2011. “Dr. Hyman prepped us years in advance for what the best plan would be for our family in the future, I am so thankful for his care and outlook for David long term.”

David ended up having a bilateral medial hamstring lengthening, bilateral achilles tendon lengthening and bilateral distal tibial derotational osteotomies in 2011. Five years later in 2016, he than had a bilateral proximal femoral osteotomies and in 2017, when he was 12 years old, had a right distal tibial derotational osteotomy and Dr. Hyman also removed the plates in his leg. David was also one of the first patients to be a part of the Weinberg Family CP Center at Columbia University Irving Medical Center when it opened in 2013 and stayed under the care of Dr. Hyman.

“I have faith in God and it has been hard journey, but David is my champion, his attitude through this process along with the greatest doctor he could have, Dr. Hyman, has made it easier. I am so happy with the results and it is hard to put into words how we feel about Dr. Hyman, we just love him.”

In 2016 , when David was in 6th grade, he applied for the Lang Youth Medical Program at NYP and was accepted for the six year long program. Now almost 5 years later, he is close to finishing up the amazing program, and has even participated in a white coat ceremony that Dr. Hyman attended. The Lang Youth Medical Program was started in 2003 by NYP with a mission to inspire youth to achieve their college and career aspirations through hands-on learning and mentorship at a world class academic medical center.

In his free time, David, who was told he would never walk in his life, is thriving in basketball and has a passion for anything to do with music and singing. He is doing everything he wants now, whether it is working out or dancing he doesn’t complain about the braces he has to wear it’s a part of his normal. “You can tell him you can’t do this and he will figure out a way to do it,” said mom Lorena.

Now in 2020, David has hit a milestone that both him and mom could never imagine, he is now at the point where only a yearly appointment and check up is required. For someone who has practically grown up in the hospital and doctors office waiting rooms and has multiple surgeries and appointments, this is a milestone to be proud of. “We look forward to seeing Dr. Hyman every year and are both excited for David’s future successes in life.”

Tips to Help Your Child with CP Thrive, From an Adult with CP

Guest Blog By: Kathleen Downes, LMSW

Note that the author prefers identity-first language (e.g. referring to oneself as a “disabled person” rather than a “person with a disability.” However, both terms are used in the following piece.

More elusive than the Loch Ness Monster! Less media coverage than squirrels eating cheeseburgers! Harder to spot in the wild than Bigfoot! Who are we? Disabled adults! If you went based on the media and most existing social service systems, it would be easy to think that folks with cerebral palsy (CP) vanish into thin air when they turn 18 in a triumphant blaze of paperwork. But don’t believe the stories. We’re here, lurking in your very neighborhood! Jokes aside, we’re actually everywhere…doing mundane things like working, going to school, and complaining about the lack of walker color options once one grows out of the pediatric size. 

Do you have a kid with CP? Are you confused by all the acronyms in disability land? Are you wondering what life will be like for your child? Putting on some AFOs (leg braces) and wondering how people survived before Velcro?

Kathleen standing in a purple walker around age 3, wearing sunglasses, a brightly colored hat, a blue striped shirt, aqua shorts and what looks like a bowtie. Her clothes are gloriously mismatched and she is smiling. She is also wearing leg braces.

It can be overwhelming looking for information and finding the best resources for (and with) your loved one with CP. But as you embark on this adventure, don’t forget disabled adults. We are a unique and tremendous resource. I am 27 years old and I love meeting kids with CP. Besides enjoying the nostalgia rush when I see tiny AFOs with pink straps, I truly enjoy showing younger people with CP the way. It is the honor of my life to play some role in helping the next generation of “my people” thrive. And when we work together, there is less fear, more joy, and more rousing discussions about cute sneakers that fit over AFOs. 

I cannot speak for all adults with CP, but as one member of this fabled, fabulous group, here is some of what I’ve learned and would like to tell parents and guardians without CP raising kiddos with CP:

We are the real experts and carry with us a trove of real-life experience. 

Adults with CP have a perspective that no non-disabled parent, sibling, therapist, or doctor can offer. We have the scoop on cool camps, recreational programs, and equipment. Most importantly, we know exactly how it feels to have CP. Want to know what life is like with CP? Listen to those living this story. Our perspectives are often ignored and drowned out by the opinions of parents and professionals without disabilities. But if you want real (probably overpriced, adapted, AFO friendly) boots- on- the- ground experience, adults with CP are your best source… because we’ve been there. 

Help your child connect with other people who have CP and other disabilities early in life. 

Community is so important. Peers who are living with CP and other disabilities can offer support and camaraderie that no one else can. The disability community has its own history, humor, and rituals. Our shared experiences are vital. In fact, a 2017 research study[1] by Silverman et al. concluded that young people who have friends with similar disabilities report a higher quality of life. The sense of belonging among my disabled friends has sustained me throughout my life and given me pals to turn to for those “found a fry on my footrest before giving a speech” moments that…well, only make sense if you’ve been there. 

Ditch the “overcomer” narrative. 

Society puts a lot of pressure on kids and adults with disabilities to “overcome” the disability. Mainstream culture has told us that we are victorious, successful, and courageous if we minimize our disabilities or encourage others “not to see the disability.” However, many of us feel that CP is a part of who we are and should not be treated as something to overcome– because it’s not a negative trait. Having CP comes with many struggles, but also with many joys, like the people and places I’ve come to know because of my disability. The expectation that I should overcome an essential part of myself is deeply upsetting. Instead of focusing on overcoming my CP, I prefer to focus on living well in a disabled body. If you can’t see my disability, you can’t see a full picture of me.

Don’t be afraid of mobility aids. 

Unfortunately, many people have been taught that wheelchairs, walkers, and crutches are symbols of “giving up.” But assistive devices do not have to be constraints—think of them as tools. My wheelchair has allowed me to keep up with non-disabled people, go out without an assistant, and navigate without fear of falling. If anything, my wheelchair has made me more independent, safe, and comfortable. What if we reframed assistive devices as symbols of freedom? There’s still time!

Be prepared to talk about ableism. 

Kathleen at age 25 seated in a power wheelchair wearing blue and orange graduation regalia. Her arms are outstretched, mimicking the statue behind her, which is a woman standing on a platform with arms outstretched. The statue is also wearing a cap and gown.

Ableism is discrimination and prejudice based on disability. Sadly, every adult with CP can share multiple instances of ableism. It doesn’t always look like overt bullying. Sometimes, it looks like an event not made accessible for wheelchair users. It can look like the exclusion of disabled folks in the media. It can look like being passed up for a job interview when the employer gleans that you have CP. Conversations about ableism are difficult and often uncomfortable but always necessary. Naming these occurrences will help your children to feel that their experiences are valid and fully acknowledged. Helping young people with CP to cope with ableism is essential to supporting their mental health. Helping them to cope also means knowing that many experiences with ableism can’t be fully understood by someone without a disability. The best way to be an ally in these cases is to listen.

Know that independence looks different for everyone. 

The stereotypical idea of independence for people with CP is walking unassisted and performing all activities of daily living on one’s own. But independence is not one-size-fits-all and it doesn’t have to mean doing everything on your own. For me, independence means hiring and supervising my own personal care assistants—I will always need help but I want choices about who helps me and how they complete their tasks.

And finally…Don’t let therapy rule your life… the occasional “day off” won’t halt the universe. 

My mother and I were recently reminiscing about when I was a little girl and she felt like I would shrivel up and disappear if I missed one session of physical therapy (PT). I am fortunate to have had great PTs, but sometimes a skip day can be a good thing. Don’t get so bogged down with appointments that you forget to live. In retrospect, we wish we had realized sooner that the world doesn’t stop turning if one day Dollar Day at Carvel sounds better than physical therapy. It tastes better too!

So, if you have a child with CP and they see me on the street, please stop and say hello! I am eager to compare wheelchair colors, blabber on about how your kid should go to summer camp, and compliment them on their cute AFOs. 

Most of all, I want to show kids with CP that adults with CP exist…and we are rooting for them in everything they do.

So, if you have a child with CP and they see me on the street, please stop and say hello! I am eager to compare wheelchair colors, blabber on about how your kid should go to summer camp, and compliment them on their cute AFOs. Most of all, I want to show kids with CP that adults with CP exist…and we are rooting for them in everything they do.

Kathleen is a 27 year old from Floral Park NY and one of the Weinberg Family Cerebral Palsy Center’s first patients. To learn more about Kathleen check out her patient spotlight here.

References:

[1] Silverman, A.M., Molton, I.R., Smith, A.E., Jensen, M.P., & Cohen, G.L. (2017).  Solace in solidarity: Disability friendship networks buffer well-being.  Rehabilitation Psychology, 62, 525-533.  


5 Reasons Why Being an Advocate in the Disabled Community Matters

Guest blog by: Tucker Salovaara

My name is Tucker Salovaara and I was born and raised in New York City. I’m 27 years old and I have been a patient at the Weinberg Family CP Center since it opened in 2013. I work for a great organization called Theater Breaking Through Barriers (TBTB) as a social media manager.  They put on really interesting plays and it is a great group of people dedicated to making sure that we in the disabled community are included in the theatre. Throughout my life I have learned to advocate for myself. Because of my disabilities, I have had to work extra hard to prove to people that I can do anything that I put my mind to.

I was fortunate to be an intern at the Mayor’s Office for People with Disabilities after I graduated from college. That was a great introduction to people and organizations that can make a difference. I have greatly enjoyed getting to know more of the disabled community through my work with the MTA Access-A-Ride Committee, which works on improving services in public transportation. We have made some good progress but obviously have a lot more room for improvement before those of us in wheelchairs can get around as easily as our able-bodied peers. I also volunteer my time to work for an organization called AXS Lab/Map as a web accessibility consultant. They provide information to help people get around town by rating accessibility of businesses and public places. I try to stay “plugged in” with the greater disability community through Google groups, listservs, and participate in protests and attend hearings on important topics relevant to our community. I also participate in the Weinberg Center’s support group for young adults with CP, which has been a nice way to meet new friends who face similar challenges. 

Why Being Active in the Disability Community Matters:

Tucker at a community event smiling at the camera
  1. You Are Not Alone. We are all in this together! One of the most important lessons about advocacy is that together we are stronger than if we go it alone. Even if you don’t think you initially have a lot in common with others, you will share similar experiences and find common goals.
  2. Your Voice Matters. What you have to say is important. Your experiences may shed light on additional issues that others have not thought about.  Change only happens when people make the effort to speak up about their concerns! 
  3. You Can Make a Difference. In order to promote change, you need to want to change something. What is it that would improve your life? 
  4. Put Your Ideas Into Action. The other critical piece is acting on your beliefs—As Gandhi said, “Be the change that you want to see in the world.” 
  5. Be Open to Trying New Things. Always have an open mind and an open heart. You might just be surprised by your own ABILITIES! 

I think that many people in the disabled community are afraid to get involved because they are afraid of being adversely judged or being rejected. It’s corny but never forget—nothing ventured, nothing gained!   

My advice to those who feel afraid/judged or don’t know how to get involved would be:

  • Don’t be afraid to share your opinion, because your voice matters
  • Think outside of the box, try different things and find something with a group atmosphere, like a support group to get started, so that you can feel more comfortable getting involved
  • Be confident. Every story matters and no one can argue with your experience!
  • Don’t be passive. Be bold in spite of what you think people expect of you or how they may judge you
  • Push yourself to try something new--even if you feel vulnerable, try it–you might like it! That is what happened to me with the WFCPC support group, which I really enjoy.    

For me, getting involved with the MTA Access a Ride Committee helped me put my frustrations with transportation in NYC into action. I was fed up with the system and wanted to do something about it. People had to listen and I was no longer being passive. Now, I help the MTA by testing and reviewing new products and initiatives like the Access A Ride app which helps riders track their rides.  We also have a pilot program through Curb for wheelchairs which is much quicker than AAR vans.  

Having grown up on the Upper East Side, I was constantly aware of visitors’ challenges with accessibility issues in Central Park. I had an idea to create a map of accessible pathways and worked with the NYC Parks Department and the Mayor’s Office for People with Disabilities on such a project. I tried to come up with a solution to a problem that I saw shared by many others.

If I could empower anyone by saying something, it would be “Don’t be afraid to share your ideas and fight for your rights.” We need more people advocating for and in the disability community because improvements are needed and our lives matter.

Tucker is a patient of the Weinberg Family CP Center and an active member of the adult support group. To learn more about Tucker, check out his patient spotlight here.

Patient Spotlight: Tucker Salovaara

Headshot of Tucker smiling at camera

Meet Tucker Salovaara:

I was born and raised in New York City. I’m 27 years old and work part-time for a theater company called Breaking Through Barriers. My job duties are updating the website and social media platforms. In addition, I strive to make the content more accessible for everyone. An example of this is adding alt-text to each image for blind users to listen to the description with their screen readers. Besides working, I am a very outgoing guy who always tries to be more involved in the disabled community and other communities. 

How did you find the Weinberg Family Cerebral Palsy Center (WFCPC):

I found this center when they were first starting this program. My beloved Dr. Roye, who saw me through my childhood wanted to start this program to enhance medicine for people with Cerebral Palsy. Even though I don’t have Cerebral Palsy, I fell in the category and Dr. Roye encouraged me to join the program because when I was 18 years old, he had to surgically rebuild my feet and he thought I would benefit from joining.

How has the Weinberg Family Cerebral Palsy Center impacted your care:  

The center has impacted my care by helping me feel like I’m not alone and if I have a complicated health issue, I can trust that the team can solve it. Before this center, when you turned 21 years old, you are lost in the system. I feel like this support system is so crucial for people who have a lot of pain and other life-threatening health problems. Thankfully, knock on wood, I haven’t had any major health issues in regards to my orthopedic condition. However, I will always have this incredible system if I ever need it in the future. 

What is one thing you would like people to know about the Weinberg Family Cerebral Palsy Center?

One thing that people should know about is that we are all in this together. This past year, I joined the Weinberg Family Cerebral Palsy support group and it has changed me to be more social in my community and it showed me that I’m not alone. Back when I was in high school, I thought I was in the best social bubble of my life, but when I graduated I had trouble finding a similar support system. When I first joined this support group, I was skeptical because I didn’t feel like it was helping me within the first couple months, but when I gave it a chance and fully opened up, something clicked and it felt like I was back in a supportive social bubble. That being said, I highly recommend anyone who has a similar disability to check out the Weinberg Family Cerebral Palsy Center. You never know unless you give it a shot!

Patient Spotlight: Kathleen Downes

Kathleen Downes with Dr. David Roye

Meet Kathleen Downes:

I am 26 years old and from Floral Park, NY. I am a licensed social worker and a two time graduate of the University of Illinois at Urbana-Champaign, where I earned degrees in Community Health/Rehab Studies and Social Work.  While at the university, I lived in a supported residential setting for people with significant physical disabilities called Beckwith Residential Support Services. I have quadriplegic cerebral palsy and enjoy advocating for disability rights. I currently coordinate workshops for the families at an adaptive dance program called Dancing Dreams and write my own blog, The Squeaky Wheelchair. My work has also been featured in Huff Post and Women’s Media Center.

How did you find the Weinberg Family Cerebral Palsy Center (WFCPC):

I was already a patient of Dr. Michael Vitale’s at the Morgan Stanley Children’s Hospital as a teenager and I knew of Dr. David Roye because he operated on many of my friends as children. Luckily, the WFCPC was opening just as I was due to age out of the pediatric system and my mom found out about the initiative at a conference in 2012. We were and are so grateful that I am able to continue receiving care as an adult because there is such a paucity of knowledgeable providers when it comes to cerebral palsy–without WFCPC I wouldn’t really have any options. 

My first interaction with the Weinberg Family CP Center was working with Dr. Heakyung Kim, who is an incredible doctor and a great person. I recently had a hip osteotomy with Dr. Roye after dealing with persistent hip pain and he has been so kind and I am very appreciative of all he has done to help me.

How has the Weinberg Family Cerebral Palsy Center impacted your care:  

CP is traditionally classified as a “children’s condition” when it is actually a lifetime condition. We don’t disappear into thin air at age 18 and our healthcare system must reflect that. One of the goals of medicine has historically been to give people with disabilities and medical conditions long lives–but to ensure long lives is not enough. We need comprehensive care that ensures not just length, but quality of life through the years. Generally, turning 18 with a disability is like falling off a service cliff in every aspect of life. Even though adults with disabilities have always been and always will be here, the larger medical community (and society in general) tends to treat us like unicorns…and often greets us with a sort of, “what do we do with you?” attitude. It’s super frustrating to essentially remind doctors on a regular basis that you do, in fact, exist.

The existence of WFCPC means that I have a place where people are well-versed about my disability and a place where I don’t have to deal with the too-familiar feeling of abandonment by the healthcare system. It would be the easy choice to turn away from the daunting task of bridging the pediatric-adult care gap, but these providers have instead made the choice to turn towards us, to support us, and to play a part in changing the culture of care. That means a lot to me!

What is one thing you would like people to know about the Weinberg Family Cerebral Palsy Center?

The work that the Weinberg Family CP Center is doing is crucial. There is no age limit on the need for quality medical care. I’m so glad WFCPC recognizes that we adults with CP are here and we’re not going anywhere.

Patient Spotlight: Jason Lieberman

Before he became a patient at the Weinberg Family Cerebral Palsy Center, Jason Lieberman had to be patient with the healthcare professionals who treated him. By the time he got to college, Jason would often have to walk his physical therapist through his treatment plan. His longtime neurologist and unofficial primary care physician Dr. Arnold Gold, the former Chair of Columbia’s Pediatric Neurology Department, was the only healthcare professional who understood how to treat him effectively.

Continue reading “Patient Spotlight: Jason Lieberman”