This post was submitted by a TIPPS visitor in the hopes of reminding other stroke survivors that with determination and perseverance, life post-stroke can be extremely fulfilling and meaningful. It’s a long story, but definitely worth the read!
Avi Golden completed his Bachelor of Science in Biology at Towson University, in Maryland and in the years that followed, he garnered credentials as an EMT. This allowed him to work as an emergency medical technician and paramedic in many different and exciting capacities. Life was good.
In early June 2007, at 33 years of age, Avi was admitted to Columbia Hospital, in New York, for surgery on an mitral valve prolapse (MVP) repair. Like many people who go in the hospital for serious, but seemingly routine, surgery, Avi thought he’d be out and recovering shortly. However, during the surgery, Avi experienced a stroke on the left side of his brain, leaving him with right-sided paralysis, and profound aphasia.
By early October, he was discharged from inpatient rehabilitation, and began outpatient therapy at home (which he still receives for his arm and leg). Avi received “traditional” physical, occupational and speech therapies, but he also utilized a rich mix of non-traditional therapies that included acupuncture, massage, tai chi, yoga, constraint therapy, water therapy, computer games, special speech software and a Neuromove™ device for his right side.
Avi still has balance problems, and weakness on the right side of his body, but it’s his Expressive Aphasia that frustrates and confounds him more than any of his other post-stroke residuals. He refuses to let aphasia get in his way. He still works (and volunteers his time) as a paramedic and, more importantly, he’s 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, Avi has been involved in a lot of aphasia-related projects. These are some of the things that Avi considers to be his greatest achievements:
- An article published about him 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 he’s 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, Avi has 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.”
- Since 2009, has volunteered his time at the Adler Aphasia Center, where he participates in the educational training of medical residents, medical students and other health care professionals who are preparing for a career in a medical field.
Avi says that his stroke hasn’t fundamentally changed him. He’s still the same sociable, affable, and compassionate person that he was before his stroke. He is eager to help others in need and devoted to his job as a paramedic. In the future he would like to expand on his 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,” he said. That philosophy might help explain how — after suffering a stroke during a medical procedure some 9 years ago — he was able to graduate from wheelchair to cane to unassisted walking. And if his arm is not back to normal yet, it’s not for lack of trying.
Twice a week, Mr. Golden can be found at the Adler Aphasia Center in Maywood, going from activity to activity, and recruiting some of his sports buddies. He seems to have cemented his reputation there with a star turn as Tevye in “Fiddler” and The Beast in “Beauty and the Beast”.
He never asks people to do anything he hasn’t done himself and says, “After my stroke I was afraid to go to Six Flags” Great Adventure theme park, “but I knew I had to go to overcome my own fears”. Otherwise, he would not be able to ask others to do the same. Now, when he invites members of the center to go, say, skydiving — he has gone twice — he can tell them his own story. So far, he has enticed dozens of local participants.
“Come stretch your boundaries,” Mr. Golden tells them, urging them to “expand your horizons after becoming disabled.”
His outdoors 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.
Mr. Golden, who was raised in Lubbock, Texas, had been fluent in both English and Hebrew. He is determined to recapture both languages. To do this, he generally spends about 15 hours a day engaged in some kind of speech therapy. “My mother was born in Jerusalem,” he said. “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,” he wrote in the PowerPoint presentation he has prepared to help him explain aphasia.
Mr. Golden also is engaged in volunteer work, assisting paramedics at two New York hospitals and visiting stroke patients at North Shore Hospital and Long Island Jewish Hospital. He said that after someone has a stroke, he or she may be tempted to retreat. “I tell them not to give up,” he said.
Since Avi is still able to enjoy two of his favorite sports, snowboarding and horseback riding, it’s no surprise that he would also like to start a not-for-profit organization (that he’s dubbed “NYC Outdoors Disability”). It would promote snowboarding, horseback riding, hiking, hand cycling, sailing, scuba diving and other outdoor activities for people with disabilities.
Have you ever wished that there was a Facebook tailored to stroke survivors and their caregivers? Well, wish no more! Strokefocus, the new name for Wohaula.net is an online stroke support community that is connecting users to all things stroke related. The membership based site follows the familiar design of Facebook, but creates a community with so much more meaning. You can read blog posts about topics ranging from the US healthcare system and how that might affect you as a stroke survivor, to research facilities in your area looking for study participants. The site contains a chat option, group options, links to other resources and even a favorites tab where you can save any pages you found particularly useful. This is a wonderful online community connecting stroke survivors and their caregivers with the resources and support they need. Type Wohaula.net into your internet browser to check it out!
If you haven’t already, you should check out the American Stroke Association’s website for more information on everything from stroke prevention to healthy living post-stroke. There is a section titled “life after stroke” that contains additional video and written tips from other stroke survivors across the country. You can also subscribe to the Stroke Connections magazine, a free quarterly magazine with “information and inspiration for a vast community of stroke survivors and their families”. The website link is below!
Youtube provides yet another great stroke resource in the form of a vlog (video blog) created by a young stroke survivor. His videos include everything from removing snow post-stroke to how to respond to the negative stereotypes of suffering from a disability. He chronicles his journey from his initial recovery in the hospital up to what he’s doing now and how he’s coped with the results of having a stroke at a young age. His positive outlook on life is inspiring and encouraging. Check out his videos!
This youtube link will take you to a list of videos created by a below the knee amputee. While stroke and amputation are fundamentally different medical concepts, some of the consequences can be similar. In each situation, one must learn to adapt to life without the full use of one or more limbs. While this youtube channel is very much directed toward life after amputation the message of positivity might be helpful for those looking for support. Some of the videos also contain tricks and devices that could used post-stroke as well!