Tuesday, March 22, 2016

Aphasia what?

I find it interesting that there is an overwhelmingly large number of people in this world who have never heard of aphasia.  However, I admit, if I wasn't a speech-therapist I undoubtedly would not have known about aphasia.  If you were to walk down the street and ask a variety of people what aphasia is, you would find that the following responses are the most common.  Aphasia is a:
                   a) rare fruit
                   b) place
                   c) disease resulting in an encounter with poisonous insects

According to the National Aphasia Association, the incidence of people in America who suffer from aphasia is approximately 1,000,000 (approximately the same number of individuals with the HIV or AIDS virus).  I will not continue to spew out numbers and statistics from other countries, but needless to say, it is a growing disability worldwide because more people are surviving strokes and other brain trauma related events.  It is very unfortunate, however, that the general population views people with aphasia as psychologically ill or mentally challenged.  In addition, individuals with aphasia have reported encounters with people who assumed they were drunk.

The clinical definition of aphasia:  A communication disorder most commonly acquired due to brain damage of the language center in the brain.  It affects one's ability to process language (occasionally both receptively and expressively), and often their ability to read and write, BUT their overall intelligence is left intact.

I offer a definition from individuals who suffer from it:  Aphasia is a communication disorder, that due to brain damage, affects an individual’s inability to work, provide for their families, isolates them from friends, family and the community at large, which ultimately leaves the individual frustrated, helpless, angry and alone.

Before Ayal's stroke, he was business manager for a high-tech company in Cambridge, Massachusetts. Speech was an essential requirement for his profession.  He was good at it.  Ayal had the 'gift of the gab'.  In July of 2009, this was taken from him.

He religiously attended cognitively draining speech therapy sessions for 15+ months.  Initially, our health care provider allowed for 5 sessions a week, after 3 months they decreased to 3 days a week, then to twice a week after 12 months, and finally once a week.  

Most of our friends and family did not fully understand and grasp the severity of his communication difficulties. His aphasia did not solely affect his speech output.  Ayal had significant deficits in his ability to read and write.  For the first two years, he did not express great interest in working on the computer.  Ayal depended on someone to read his emails to him, write his emails, and make phone calls for him.  Many people suggested that he type his wants and needs.  This was not possible.  He could not formulate simple sentences structures, let alone spell basic words.  

His TRUE disability was his inability to effectively communicate and express himself, and not his difficulty walking or using one arm.

For the first year and a half, Ayal kept a 'communication notebook' shoved into the pocket of his pants.  He required this notebook (as do many individuals with aphasia who are more independent), to converse with family, friends, and his community.  It included his ID number, our names, address, medications, phone number and all of our pictures.  It was a truly inviting opportunity for anyone to access his personal information.  

It might as well have read:

Hi, my name is Ayal Shulman, I have suffered a stroke and I have aphasia.  I have trouble speaking but I am not an idiot nor am I wasted from drinking all morning.  Take a look at by notebook, you can learn everything about me and my private life.  My wife and my kids names are all listed.  Would you like my credit card number and bank details as well? 

Aphasia or no aphasia, many people already have easy access to our personal information.  We post it all throughout our social media networks.




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