Jun 11, 2019

Stroke Survivors Like Us With Aphasia: One Son's Everlasting Love for His Mother

An aphasic brain
For someone who used to speak constantly for a living (I was a Technology Trainer, the latest being Cozen O'Connor, an international law firm where I talked incessantly), when I got aphasia as the result of the stroke, anger and disappointment were without boundaries. I was depressed and frustrated, and it took me two years just to get over that. June is National Aphasia Awareness Month, so the timing couldn't be better! I'll explain what aphasia is in a moment.

This post, however, isn't about me at all. It's about Nicholas and his mother, Nina, a stroke survivor who ended up with aphasia. 


Nicholas Orris, an independent filmmaker who is from the Philadelphia area (www.orrisproductions.com), came across my blog and he was inspired by his mother's journey to overcome aphasia.

Nick and Nina in the younger years

Nick and Nina at the high school's film festival which, by the way, he won

"As an aside and small coincidence, my filmmaking producer, Matt Deblinger, is an attorney at an international law firm in Miami, so between your ties to both Pennsylvania and international law, Matt and I felt it was serendipitous to come across your blog," Nick said. Serendipitous indeed!

Aphasia can be so severe that it makes communication with the patient almost impossible. Aphasia is the inability to find words, have a conversation, even read and write. The Mayo Clinic came up with a concise list of things for which the patient should be tested, including:

  • Name common objects
  • Engage in a conversation
  • Understand and use words correctly
  • Answer questions about something read or heard
  • Repeat words and sentences
  • Follow instructions
  • Answer yes-no questions and respond to open-ended questions about common subjects
  • Read and write
As for aphasia, speech and language therapy tries to rehabilitate the person's conscious ability to communicate by restoring language, educate how to compensate for missing language skills, and find other methods of communicating.

Some studies have found that therapy is 
most effective when it begins right after the cerebral, or brain, injury. In a group setting, people with aphasia can try out their communication skills in an accepted, safe environment. Examples include participants practicing conversations, clarifying mis-spoken words, and fixing conversations that have evaporated. Using computer-assisted therapy can be especially helpful for relearning verbs and word sounds.

The Mayo clinic's suggestions for people with aphasia: 
  • Carry a card explaining that you have aphasia and what aphasia is.
  • Carry identification and information on how to contact significant others.
  • Carry a pencil and a small pad of paper with you at all times.
  • Use drawings, diagrams or photos as shortcuts.
  • Use gestures or point to objects.
For family and friends, 
  • Simplify your sentences and slow your pace.
  • Keep conversations one-on-one initially.
  • Allow the person time to talk.
  • Don't finish sentences or correct errors.
  • Reduce distracting noise in the environment.
  • Keep paper and pencils or pens available.
  • Write a key word or a short sentence to help explain something.
  • Help the person with aphasia create a book of words, pictures and photos to assist with conversations.
  • Use drawings or gestures when you aren't understood.
  • Involve the person with aphasia in conversations as much as possible.
  • Check for comprehension or summarize what you've discussed.
  • Support groups

The aphasia diagnosis, according to Northwestern University, is based on the results of neurological, neurolinguistic, and neuropsychological assessment. People with aphasia exhibit improved language ability when provided with treatment. Aphasia therapy strives to restore language abilities by providing treatment focused on specific language disabilities. 
When language recovers, so does the brain. It is a known fact that recent research findings show that language and brain function improve for many years following the onset of aphasia. When people with aphasia are given treatment focused on the specific language processes that are damaged, neural repair improves.
Now that you know what aphasia is, I can resume the story. 

Nick, a caregiver to his mother, used his filmmaking abilities for a short film called Buried Words," about a stroke survivor recovering from aphasia and her young adult daughter who learns to serve as her caregiver during winter break," as Nick tells it. 
The film's goal is to raise stroke awareness and funds for aphasia therapy groups. 

"We have recently launched a crowdfunding campaign on Indiegogo, https://www.indiegogo.com/projects/buried-words-stroke-survivor-film-fundraiser#/ now National Aphasia Awareness Month in June, where 50% of all contributions raised in the campaign will be given to a Philadelphia-based organization that provides free support groups and therapy to patients with aphasia, the Philadelphia Aphasia Community at Temple [University] (PACT)," says Nick. 

The other 50% of the funds raised in the crowdfunding effort will go towards helping them complete the film in post production. Once completed, Nick and associates have plans for the film to tour at festivals, community centers, and schools to help further elevate stroke awareness and aphasia. 

"Buried Words is my way of giving back to the community that has supported my mother as she strives to live her life to the fullest. The film is deeply personal to me, and I hope it can transcend its medium. We hope to educate people who may not be as familiar with stroke recovery or aphasia, as well as encourage family members and caregivers who may need a reminder that they are not in this alone," says Nick. 

Your support of this project would mean the world to them -- and me, by the way, who has aphasia, too. So please donate as much as you possibly can to this worthy cause. Again, the campaign video which features Nick himself can be viewed here, which also includes a video about PACT: https://www.indiegogo.com/projects/buried-words-stroke-survivor-film-fundraiser#/ Click the campaign video link to donate and see if you tear up, too. Best sincere wishes, Nina and Nick.

This song came to mind immediately (I'm a solid country fan), Rascal Flatts and My Wish for You. The link to the song follows. And maybe, just maybe, you'll tear up like I did, every time I read what I have written, about Nina, the mother, and her thoughts about her son, Nick.   

https://www.youtube.com/watch?v=zGB7IWklW3s

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