Photo provided by Avi Golden
Avi Golden is an EMT who can no longer talk after suffering a stroke. He now makes it his mission to educate others about those dealing with aphasia.
Editor’s Introduction
It was a chance encounter one day as I scanned Facebook posts from “friends” and acquaintances. I have countless “friends”, many of which I have never met in person, but find, through their content or other “friends” to be in my world of interest and specialization.
Several postings were from paramedic Avi Golden, one such “friend” I followed frequently on Facebook and found to be sharp, inquisitive and ever-present on the Web.
Avi seemed like someone I could utilize to alert me to interesting articles, studies and innovations he found on the Web. So, I reached out to him that day and asked him to call me. He responded back in a rather cryptic note — replying that we should continue the discussion on Messenger.
Thinking Messenger was too impersonal, I replied that I really wanted to speak to Avi via the phone to personally communicate my thinking to him. He said “OK” and my phone soon rang.
I answered the phone and heard a synthesized voice on the other end. I inquired about what was an unusual voice coming across and that is when Avi relayed to be his background as an emergency responder and educator and the stroke he had suffered that left him aphasic.
Realizing his condition and understanding that the keyboard was friendlier to him than our efforts to communicate verbally, Avi and I continued our discussions online.
I told him I was not only impressed with his courage and determination to overcome what to me was an unimaginable handicap, but also his depth of EMS, fire and rescue experience and his sincere desire to continue to contribute to the advancement of each and to educate others about aphasia. I asked him if he would be interested in contributing to JEMS as a news and information provider and he agreed to do so. I also told him that I would like him to contribute to an article about aphasia.
The result is this article, co-authored by Avi and Ellayne Ganzfried, a speech-language pathologist and the former Executive Director of the National Aphasia Association. It is an educational and compelling article that represents the sincere efforts by two passionate individuals dedicated to a common mission to educate emergency responders and others about aphasia and the way those suffering aphasia continue to overcome its many obstacles and contribute to society.
Avi is truly an inspiration and a testament to the belief that there is life after a stroke and aphasia.
A.J. Heightman, MPA, EMT-P
JEMS Editor Emeritus
Avi’s Story
Avi worked as an emergency medical technician and paramedic in many different and exciting capacities. These included that of a critical care paramedic, certified flight paramedic, Rescue Technician, and in the allied roles of firefighter, hazmat (hazardous materials) operations and weapons of mass destruction technician as well as a paramedic with Magen David Adom in Israel.
Avi planned to enter medical school, but, in June of 2007, at the age of 33, tragically suffered a stroke during open heart surgery to repair a mitral valve prolapse (MVP).
He suffered a stroke on the left side of his brain, leaving him with right-sided paralysis, and profound aphasia, which proceeded to wreak havoc with his life.
Avi remained in acute care 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. Once discharged, he began outpatient therapy which continues to date.
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 deficits.
Avi can understand what people are saying to him, however, he continues to have trouble speaking, reading and writing. This can be devastating for any outgoing person, let alone a paramedic who needs to communicate accurately and effectively to do his job.
Avi 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.
Behind the Wall of Aphasia
Ask ten people on the street if they know what aphasia is and it is likely that at least half will say that they have never heard of it. It is also likely that those who have heard of it cannot give an accurate definition of aphasia.
Aphasia is an acquired communication disorder that impairs a person’s ability to speak and understand others but does not affect their intelligence.1
Most people with aphasia also experience difficulty reading and writing. Because people with aphasia can think as they always have but have lost the ability to use language to convey their thoughts and/or understand others, they often use the word “prison” to describe their condition.
Imagine the frustration of consciously knowing what you want to say but not being able to say it and/or saying things that others can’t understand.
Aphasia is experienced by one to 38% of all individuals with acute strokes and about 795,000 Americans each year suffer a new or recurrent stroke making stroke the most common cause of aphasia.2 Other causes include head injuries, brain tumors, migraines or other neurological conditions.
Aphasia can also result from frontotemporal degeneration (FTD), corticobasal degeneration (CBD), and other neurodegenerative disorders referred to as primary progressive aphasia (PPA), which is a clinical dementia syndrome.
Aphasia knows no boundaries and can be acquired by all ages, races, genders, and cultures.
It is difficult to get an accurate statistic of incidence, but most agree that there are almost two million Americans with aphasia. Despite these numbers, aphasia typically is not recognized or understood–even by some health professionals–compounding its devastating consequences.
Too often people with aphasia are discharged from a hospital without knowing their condition has a name or that they can improve with time, speech-language treatment and community support.
Difficulties and Disadvantages Navigating in Today’s Healthcare System
People with aphasia are at a tremendous disadvantage in today’s health care system, where the ability to access resources is often closely tied to the patient’s ability to advocate for oneself.
Because it involves communication, aphasia affects almost every aspect of a person’s life. It is often difficult to understand the day-to-day difficulties and frustrations experienced by a person with aphasia.5
One can get caught up in the technical jargon and forget the practical implications a communication impairment has on the person, friends, and family. According to G.A.Davis, ” an individual’s aphasia is a family problem.”3
There are many myths and misconceptions about aphasia, including the belief that people with aphasia are
· psychologically ill,
· under the influence of drugs/alcohol,
· hard of hearing/deaf,
· confused,
· unwilling to try, and/or
· elderly.
The goal of this article is to dispel these myths and provide accurate information about aphasia.
There are several different types of aphasia and categorizing different subtypes can be complicated. Below are some of the most common classifications.4
Global Aphasia — This is the most severe form of aphasia and is applied to those who can produce few recognizable words and understand little or no spoken language. Persons with Global aphasia can neither read nor write.
Global aphasia may often be seen immediately after the patient has suffered a stroke, and it may rapidly improve if the damage has not been too extensive. However, with greater brain damage, severe and lasting disability may result.
Broca’s Aphasia — This is also referred to as expressive aphasia or non-fluent aphasia. In this form of aphasia, damage is typically in the anterior portion of the left hemisphere. Speech output is severely reduced and is limited mainly to short utterances. Content words (nouns and verbs) may be preserved but sentences are difficult to produce due to the problems with grammar, resulting in “telegraphic speech.”
In its more severe form, spoken utterances may be reduced to single words. The person may understand speech relatively well and be able to read but be limited in writing.
Broca’s aphasia is often referred to as a “nonfluent aphasia” because of the halting and effortful quality of speech.
Wernicke’s Aphasia — Here, the damage is typically in the posterior portion of the left hemisphere. The ability to grasp the meaning of spoken words is chiefly impaired, while the ease of producing connected speech is not much affected. Reading and writing are also often severely impaired. (This is also referred to as Receptive Aphasia or Fluent Aphasia.)
Comprehension is poor and in many cases the person produces jargon, or nonsensical words and phrases, when attempting to speak.
These utterances typically retain sentence structure but lack meaning. The person is usually unaware of how they are speaking and may continue to talk even when they should pause to allow others to speak; this is often referred to as “press of speech.”
Anomic Aphasia — The most prominent difficulty in Anomic Aphasia is in word-finding, with the person using generic fillers in utterances, such as nonspecific nouns and pronouns (e.g., “thing”), or circumlocution, where the person describes the intended word.
It is like having the word on the “tip of your tongue.” Comprehension and repetition of words and sentences is typically good; however, the person may not always recognize that a word they have successfully retrieved is the correct word, indicating some difficulty with word recognition. Difficulty finding words is as evident in writing as in speech.
Primary Progressive Aphasia — A clinical dementia syndrome in which language function slowly declines, due to progressive, neurodegenerative brain disease, eventually effecting additional cognitive, behavioral, and functional domains. This is in contrast to aphasia acquired as a result of a stroke or brain injury.
Mesulam first used this term in 1982; he defined as a “focal dementia characterized by an isolated and gradual dissolution of language function” (2001).7
With this type of aphasia language deficits emerge and progress slowly. It is most prominently manifested in word-finding pauses, paraphasia, agrammatism, and difficulties with reading and comprehension. Other types of mental processes are relatively intact initially but begin to decline with time.
All people with aphasia have difficulty communicating. Aphasia can range from mild, in which a person is unable to name an object or retrieve a word, to severe, in which any type of communication is virtually impossible.
As individuals with aphasia recover, their symptoms may change, which will also change the classification of the type of aphasia. Speech-language pathologists can evaluate and recommend the type of speech therapy that would be most beneficial.
People with aphasia can continue to improve over the years due to neuroplasticity, the brain’s ability to reorganize itself by forming new neural connections.6 Improvement is a process that involves helping the individual, family and community understand the nature of aphasia and learn new strategies to communicate.
We understand that communication is crucial in emergency situations, but aphasia can affect an individual’s ability to state his/her name or understand a firefighter saying, “Follow me.”
Stressful situations can often exacerbate the effects of aphasia, with some people having even greater difficulties expressing themselves or understanding what others are saying. Many stroke and brain injury survivors are already at risk in crisis situations because of their physical impairments, but those with aphasia as well can be rendered almost completely vulnerable.
While emergency service personnel, such as EMTs and firefighters, rarely receive training on aphasia, they are, in fact, more likely to encounter a person with aphasia than someone with multiple sclerosis, cerebral palsy, or muscular dystrophy (Will & Peters, 2004).9
However, many first responders do not know what aphasia is, much less how to communicate with a person with the disorder. Unfortunately, because few emergency responders are specifically trained to deal with people with aphasia, they may mistake the disorder for mental illness or other conditions. Misunderstandings may therefore arise and efforts to help people with aphasia may be useless–or dangerous.
With seed funding from the Christopher and Dana Reeve Foundation in 2008, the National Aphasia Association (NAA) created a pilot project to train first responders in the New York metropolitan area. The project objectives were to educate police, firefighters, and EMTs in NJ, NY, and CT about aphasia, so that they could recognize, communicate with, and respond more effectively to, people with aphasia in routine encounters or in emergency situations.
Beyond education about aphasia, the training focused upon strategies to better communicate with persons with aphasia. Some very simple communication techniques were explained and demonstrated.
1. A person with aphasia can usually answer questions with a simple yes or no, a thumbs-up or thumbs-down, pointing to the words “yes or no,” or even a nod of the head up or down. Trainees were asked to think about the way in which they asked questions: Were their questions open-ended or closed? Obviously, open-ended questions are much more difficult for a person with aphasia to answer because these questions require the respondent to search for words.
2. Using closed questions allows the respondent to answer affirmatively or negatively. Thus, instead of asking, “Where do you live?” or “What hurts you?” he or she could ask, “Do you live at the address on your driver’s license?” or “Do you have pain in your chest, head abdomen, etc.?” No doubt, there are emergency situations in which it is not possible to wait for a response, however, it’s imperative that the person with aphasia is given time to speak or answer as best as they can when possible.
3. Other recommended communication strategies include the following (www.aphasia.org):
· Ensure you have the person’s attention before you speak.
· Minimize or eliminate background noise if possible (sirens, TV, radio, and other people).
· Keep your own voice at a normal level.
· Keep communication simple but adult.
· Confirm that you are communicating successfully with “yes” and “no” questions.
· Repeat statements or directions when necessary.
· Give the person time to speak; resist the urge to finish sentences or offer words.
· Communicate with drawings, gestures, writing, and facial expressions.
The NAA enlisted co-author Avi Golden, a paramedic affected by aphasia, to assist with training emergency personnel. Avi was the perfect choice and has become an unstoppable advocate for educating the public about aphasia.
More About Avi Golden
After suffering his stroke and becoming aphasic, Avi was surprised to see that a review of his EMT manual showed that aphasia rates only one mention – not nearly enough, he noted.
To make this new goal a reality, Avi has been involved in many aphasia-related projects. (See Figure 1 for some of the things Avi considers to be his greatest achievements since suffering aphasia.) 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.
Avi 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,” Avi says.
Twice a week, Avi can be found at the Adler Aphasia Center in Maywood, New Jersey, going from activity to activity. He also attends Metropolitan Communication Associates in New York City twice a week where he receives individual and group speech-language treatment.
He is involved with a group called NYC Outdoors Disability. Prior to his stroke, he loved many different outdoor sports like horseback riding, kayaking, sailing, bicycle riding, snowboarding, etc.
Now, post-stroke, Avi still enjoys many of the same thrilling activities and helps people with a wide range of disabilities including strokes, spinal cord injuries, amputation and sensory impairments also experience exhilarating outdoor activities. “Come stretch your boundaries,” Avi tells them. The program partners with other organizations, and adaptive equipment is available when needed.
References
1. American Stroke Association. (2014) Impact of stroke (Stroke statistics). Retrieved from http://www.strokeassociation.org/STROKEORG/AboutStroke/Impact-of-Stroke-Stroke-statistics_UCM_310728_Article.jsp
2. Berthier, M. L. (2005). Poststroke aphasia: Epidemiology, pathophysiology and treatment. Drugs and Aging, 22, 163—182.
3. Davis, G.A. (1983). A survey of adult aphasia. Englewood Cliffs: Prentice Hall.
4. Davis, G. A. (2007). Aphasiology: Disorders and Clinical Practice (pp. 33-39). Boston, MA: Allyn & Bacon. Adapted with permission. Retrieved from http://www.aphasia.org/aphasia-definitions/
5. Greenfield, M. & Ganzfried, E. (2016). The Word Escapes Me: Voices of Aphasia. Indianapolis: Balboa Press
6. Kleim, J.E., & Jones, T.A., (2008) Principles of experience-dependent neural plasticity: implications for rehabilitation after brain damage. Journal of Speech, Language, and Hearing Research, 51 (1), S225-S339.
7. Mesulam, M.M. (2001). Primary Progressive Aphasia. Annals of Neurology, 49:425-432.
8. American Aphasia Association. (2016) Retrieved from https://www.aphasia.org/aphasia-resources/aphasia-statistics/
9. Will, M. & Peters, J. (2004). Law enforcement response to persons with aphasia. The Police Chief, December 2004, 20-24.
Figure 1: What Avi Considers to be His Greatest Achievements Since Suffering Aphasia
à˜ 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.
à˜ 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.
à˜ Assisted with outreach efforts to police, firefighters and EMTs in NY, NJ, PA, CT, OH, IL, CA, MI, Israel, and more by participating in their training sessions, and working on the creation of a curriculum, and materials, used in their training programs.
à˜ 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.
à˜ 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.”
à˜ 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.
à˜ Contributed his story to the book “The Word Escapes Me- Voices of Aphasia” by Mona Greenfield and Ellayne Ganzfried.
à˜ Contributed content and innovations to JEMS in areas his EMS experience had indicated are important of futuristic via his Web searches.
