DAILY LIVING & MOBILITY

My Story & Aphasia

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Avi Golden

My Diagnosis: Aphasia

I completed my Bachelor of Science in Biology at Towson University in Maryland. By the time I graduated in 1998, I was well on my way to pursuing a career and a life that I loved. In the years that followed, I garnered credentials as an EMT. This allowed me to work as an emergency medical technician and paramedic in many different and exciting capacities. These included that of a Critical Care Paramedic, a Certified Flight Paramedic, a Rescue Technician, and in the allied roles of firefighter, hazmat (hazardous materials) operations and weapons of mass destruction technician and a paramedic with Magen David Adom in Israel.

Life was good. In early June 2007, at 33 years of age, I was admitted to Columbia Hospital, in New York, for surgery on an mitral valve prolapse (MVP) repair that was discovered near the aortic valve in my heart. Like many people who go in the hospital for serious, but seemingly routine, surgeries, I thought I’d be out and recovering in short order. However, that was not to be. During the surgery, I experienced a stroke on the left side of my brain, leaving me with right-sided paralysis, and profound aphasia, which proceeded to wreak havoc with my life.

Expressive Aphasia frustrates and confounds me

I remained in Columbia Hospital for two months and then was moved to a rehab hospital in the North Shore - Long Island Jewish Health System - for two more months of intensive in-patient rehabilitation. By early October, I was discharged, and began outpatient therapy at home (which I still receive for my arm and leg). During my stroke rehabilitation, I received “traditional” physical, occupational and speech therapies, but I also utilized a rich mix of non-traditional therapies that included acupuncture, massage, tai chi, yoga, constraint therapy, water therapy, computer games and special speech software. I also tried using a Neuromove™ device on my right side. I still have balance problems, and weakness on the right side of my body, but it’s my Expressive Aphasia that frustrates and confounds me more than any of my other post-stroke residuals. I can understand what people are saying to me and I can still read quite well. However, I continue to have a lot of trouble speaking and writing, both of these being reflect problems with expressing myself. This can be devastating for any friendly and outgoing person, let alone a certified paramedic who needs to communicate accurately and effectively to do my job.

aphasia advocacy

I refuse to let Aphasia get in my way. I still work and volunteer as a paramedic and, more importantly, I’ve embarked on a new mission of “Aphasia Advocacy,” educating others about Aphasia and how it impacts a stroke survivor’s day-to-day life. To make this new goal a reality, I have been involved in a lot of Aphasia-related projects. Like the myriad of activities in my pre-stroke life, I’ve done so many things since my stroke that it’s impossible to list them all. Still, here are some of the things that I consider to be of my greatest achievements:

-An article published about my journey for the Aug 13, 2010, edition of the “Jewish Standard” newspaper. The article, entitled “Got _______? Aphasia: At a Loss or Words,” was the featured cover story.

-From Nov 2008 through the present I’ve been an active contributor to the “Aphasia Awareness Training for Emergency Responders Project,” for the National Aphasia Association.

-From Nov 2008 through the present I’ve been an active contributor to the “Aphasia Awareness Training for Emergency Responders Project,” for the National Aphasia Association.

-Assisted with outreach efforts to police, firefighters and EMTs in NY, NJ, PA, CT, OH, IL, CA, Israel, and more by participating in their training sessions, and working on the creation of a curriculum, and materials, used in their training programs.

-In August of 2009 and annually through the present, I have played a lead role in the Adler Aphasia Center’s drama club before an audience of 500 people at the Adler Aphasia Center in Maywood, NJ.

-Served as an Aphasia Consultant on two plays: 1) From May through June, 2009, for the production of “Night Sky,” in New York City, and 2) In September, 2010, for the production of “Wings.”

Future Aphasia Projects

I have even more projects in mind for the future. For one thing, I would like to expand on my Aphasia awareness efforts by becoming a “motivational speaker” to hospitalized patients in the North Shore – Long Island Jewish Hospital system. I tell them anything is possible. That philosophy might help explain how — after suffering a stroke during a medical procedure some 9 years ago — I was able to graduate from wheelchair to cane to unassisted walking. And if my arm is not back to normal yet, it’s not for lack of trying. Twice a week, I can be found at the Adler Aphasia Center in Maywood, going from activity to activity, distinguished both by my energy and kippah. Though I have appeared in each of the center’s theatrical productions, I seem to have cemented my reputation there with a star turn as Tevye in “Fiddler” and The Beast in “Beauty and the Beast”.

The center is also where I recruit some of my sports buddies. I don’t ask them to do anything I haven’t done myself. After my stroke I was afraid to go to Six Flags Great Adventure theme park, but knew I had to go to overcome my own fears. Otherwise, I would not be able to ask others to do the same. Now, when I invite members of the center to go, say, skydiving, I can tell my own story. So far, I have enticed dozens of local participants. I want everyone to come stretch your boundaries and expand your horizons after becoming disabled.

My outdoor program — which engages in activities from nature walks to white, water rafting — is targeted to people who live with a wide range of disabilities, including those who have had strokes, spinal cord injuries, amputation, or sensory impairments. The program partners with other organizations, and adaptive equipment is available when needed. I was raised in Lubbock, Texas, have been fluent in both English and Hebrew, and I am determined to recapture both languages. To do this, I generally spend about 15 hours a day engaged in some kind of speech therapy.

Never Give Up With aphasia

My mother was born in Jerusalem. I still understand Hebrew, but I can’t read, write, or speak it now. As for English, I can understand everything but I can’t get the words out. A review of my EMT manual shows that aphasia rates only one mention — not nearly enough. I’m also engaged in volunteer work, assisting paramedics at two New York hospitals and visiting stroke patients at North Shore Hospital and Long Island Jewish Hospital. After someone has a stroke, he or she may be tempted to retreat. I tell them not to give up. Since I’m still able to enjoy two of my favorite sports, snowboarding and horseback riding, it’s no surprise that I would also like to start a not-for-profit organization (that I’ve dubbed “NYC Outdoors Disability”). It would promote snowboarding, horseback riding, hiking, hand cycling, sailing, scuba diving and other outdoor activities for people with disabilities. Based on my “track record” so far, it’s a sure bet I’ll succeed with both goals.  

No Barrier Summit
www.NoBarriersUSA.org/summit

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