National Aphasia Synergy Inc

About National Aphasia Synergy*

National Aphasia Synergy (NAS) is a new nonprofit organization that promotes an aphasia community led by peers. 

 

Synergy organization was founded by and will be guided by people with aphasia (PWA). This is life participation at its core!

Aphasia is a language disorder and can affect speaking, reading, writing, and understanding. Judgement and intelligence are intact. The most common cause of aphasia is stroke or other brain injury. 

There are over 2 million people in the United States living with aphasia. That’s more than twice as many as those living with Parkinson’s disease and 60 times more than ALS, but less than 14% of the general population knows what aphasia is - until it happens to them or a loved one.

“Aphasia is a tough blow. It interferes with communication, social connection, psychological well-being.”  (Katarina Haley, PhD, CCC-SLP, UNC Chapel Hill)

Aphasia affects a large part of the population, and the incidence of depression after aphasia is estimated to be 60% over the first year. Sadly, support for aphasia has been very thin.

NAS was developed to help support people with aphasia. We can best serve those with similar needs by networking local aphasia groups and individuals with aphasia in order to share ideas, resources, and support in a central place. NAS website will be available to aphasia groups across the country as well as individuals. Our strength is sharing the stories of wins and challenges. 

 

NAS Mission Statement 

 

NAS is a peer-led community of people with aphasia driven to: 

•  educate people with aphasia (PWA) 

•  empower PWA to use technology to improve communication skills 

• promote peer-befriending with new or struggling PWA 

•  develop a national PWA community 

•  encourage optimism and a positive outlook in PWA 

 

NAS Vision Statement

Our vision is that one day, the population of the United States will have a greater understanding of aphasia, and as a result, all people with aphasia will be treated with respect and kindness.

NAS will be a national community serving people with aphasia to end the isolation.

Our website is intended to be a rich source for people with aphasia. 

Our plan is for people with aphasia to help other people with aphasia thrive. 

The Synergy organization will offer PWA:

• strategies

• tips and tools

• information and support for hobbies, volunteer opportunities, or jobs

• book and article resources, including works authored by people with aphasia

• stories about people with aphasia and an opportunity to share stories

• discussions and chats

• resources for people with aphasia

• links to newspapers and other media across the nation

We need you to help us grow. Every little bit will help us to provide a strong online presence for the aphasia community. We need your help to make our vision a reality. 

National Aphasia Synergy Inc is a 501(c)(3) tax exempt organization with a Tax ID of 87-3330394. Contributions are tax deductible to the extent allowed by law and do not represent payment for goods or services received. 

 

NAS Board of Directors

• Trish Hambridge (PWA) – President - Apple - Dunedin, Florida 

• Amy Walters (PWA) – V.P. – Regulatory & Clinical Affairs - Newport Beach, California 

• Helen Ansted – Secretary/Treasurer – Finance - San Jose, California 

• Kait Moses M.A., CCC-SLP - U of Michigan Aphasia Program – Plymouth, Michigan

• Bruce Farrell (PWA) - Director of Proposals for Plante Moran – Detroit, Michigan

* Donation - Download and mail our form: here

'How can you help" business card

I will whip out an iPhone and my "What is aphasia" PDF in the iBooks app.  But, the person is non-technology or not wearing reading glasses.  Oh well... the drawing board.     

What about writing and reading?  I think, bigger words are crucial.  

"Yikes! I had the yips for aphasia." video

I went to ARC Aphasia Boot Camp. I spoke to a group, well video... You know, I'm scared.  

The topic is "Yikes! I had the yips for aphasia."

I have much more difficulty speaking when am in stressful situations.  When it's hard to talk it is frustrating. 

You need to turn your frustration "off" and turn your hope "on."

Here it is for you... 

Tips about going to restaurants

I’m going to share some TIPS about going out to Restaurants.

1. Pick a Good Restaurant for aphasia.

a. I use Yelp website for good food, noise level and out seating.

b. I use Google maps for popular times and good food.

I may go when it is not too busy. I don’t like loud restaurants.

2. Before I go to the restaurant, I finds the menu online – and I practice before they go...confident in my ordering.

3. I should ask the hostess, "what is the quiet table?"

4. I also use earplugs.

I like musical earplugs.  I take them when I go.

If it is too loud – I use the earplugs.

Google "Musical Ear Plugs" or check for my blog - here

4. I say to the server,  "I have a speech problem with aphasia." It's helpful.  The server is patient - here

5. Cheryl had a tip from a person with aphasia. 

When he went to a fast food restaurant and could not talk, he used a laser pointer, like lecturers use.

He pointed to the giant wall to place his order.

6.  An individual is one handed.  Many people with aphasia have right hand is not working. 

A friend discreetly asks the server to have the staff cut the meat before they bring it to the table

7.  When you are dining with friends and family, show them the “How you can help?" paper or PDF smartphone - here

9.  I used a tip calculator app.  I like this because a tip percentage and split it.

Don’t let aphasia stop you from going out.

Find ways to adapt.

Get out.

Have fun.

"I have aphasia." letter

I had a stroke 9 years ago. 

I was forty-three years old and I was working for Apple as an AppleCare Project Manager.

I live in a 2 story apartment.  One day, I was getting ready for work when my right side became weak.  

My phone was downstairs and I couldn't reach it.  So, I waited for help for 5 hours.

My co-worker, Alberto was wondering what happened to me.  He decided to come to my place.

Alberto saw my car and knew that I was home and that something was wrong.  He kicked the door down found me then called 9-1-1. 

The ambulance took me to Good Samaritan Hospital. 

I was diagnosed with aphasia, apraxia and an auditory processing disorder. 

I stayed 1 week then I was transferred to Mission Oaks Hospital for rehab.

My college friend, Karen is a speech therapist.  She talks with family and friends about aphasia.  My friends are patient and help me.  My friends know my intelligence is intact. I like that!

Some of their friends don't understand aphasia. They are clueless.  

Please forward this email to family and friends to help them understand aphasia. It will give them tips and try these aphasia simulations to learn what it might be like to have aphasia. 

I'm fine with you editing, deleting or adding at "I have aphasia" letter.

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Dear Family & friends,

I have aphasia.  What is aphasia?  Good question.

Aphasia is a language disorder that can affect speaking, reading, writing and understanding.  Common causes of aphasia are a stroke, brain tumors or surgery, brain infections or neurological diseases.

No two people are ever exactly alike and there are various forms of aphasia. Aphasia is an invisible disability that affects language.  


Judgment and intellect are intact.  

Very crucial!! To help you can be patient and wait for a response.  Resist the urge to finish their sentences or offer words.  Wait.  Offer suggestions when I ask.

Include the person with aphasia in activities and conversation.

There are key things in a small or a big group:

• With big parties limit loud background noise. I understand parties are loud, but it does make it difficult to speak. 

• When it is too loud to speak either ask yes/no questions, show pictures to communicate, or play games that don't require speaking. My blog for game ideas is here. 

• When visiting me or someone with aphasia no more than 4 people.

Here are videos and handouts about aphasia:   


The purpose of these aphasia simulations is to provide some activities that can help you understand what it might be like to have aphasia:  here

"How to Speak with Someone After an Aphasia" Video: https://youtu.be/jw949zkoeYE

Children's video - The Treasure Hunt:  https://youtu.be/Gq12cMUZPg4

The Treasure Hunt image

Tips for speaking with people with aphasia PDF here

Tips for speaking with people with aphasia image

How to Join a Google Hangout and Create a New Hangout Event

• I have created instructions on how to join a Google Hangout, and how to create a new Google Hangout event.

• Links to the instructions are below. 

• I have found that it is very confusing to use Google Hangout on an iPad or tablet device, and would recommend using a laptop or desktop computer.  

• The instructions below will only work on a laptop or desktop computer using the Google Chrome browser.

For step-by-step instructions on how to join a Google Hangout, click here.

For step-by-step instructions on how to create a New Google Hangout event, click here.

Number Therapy by Tactus Therapy Solutions Ltd.

Number Therapy app is a game changer.  I'm practicing MYSELF.

I had a stroke seven years ago. I have aphasia and apraxia.
I have great difficulties comprehending numbers when they are spoken to me. However, I do understand them when they are written down.  It is hard to say numbers.

Tactus Therapy's Number Therapy App is good, really good.  Three sections - Understand, Speak, and Type.

I mostly practice the double digits. Anything goes - currency, phone number, time and more.  And you can record yourself... It's cool!

Understand - I use "listen" and guess from 4 multiple-choice.

Speak - I like cues.  You touch the cue buttons and it helps right away.

Type - I use "listen" and guess.  You ask a hint, and it gives a number word.

By the way, I like "select the text" to hear it spoken by the help/information page.  How cool!

Number Therapy Lite (free) - here

What is Aphasia? PDF

I will be going to Bunco night with my friends and some very nice strangers.

I looked for a wallet card or PDF to explain aphasia, but nothing I found was quite right.

I was looking for one that had points about:

1. Defining "aphasia" in simple English 

2. Reducing background noise 

3. Asking yes/no questions 

4. Writing down key words (names, places, numbers)

So, I created my own! I made a PDF.  If a very nice stranger at Bunco (dice game) Night introduces herself to me, I say, "I'm Trish. I have aphasia."

The very nice stranger will say, "What is aphasia?"

I will whip out an iPhone and my "What is aphasia" PDF in the iBooks app.  Ta-daaaa! 

I put a PDF file here

iPhone - What is Aphasia? PDF in iBooks app

What is Aphasia? PDF

Certain things that can help if you are talking to someone with aphasia

Many people with aphasia have difficulties with expressive language.
Expressive language is when you put thoughts into words and sentences, in a way that makes sense and is grammatically accurate.
It can be very frustrating if this is hard for you.

If expressive language is a challenge:

• You may get stuck on a word or sound and repeat this often when trying to communicate.

• You may be able to refer to places and different objects but not be able to name them. You may miss out these words when you speak.

• You may know the word that you want to say but another word may come out instead. Sometimes these words can be related to the one you wanted to say e.g carrot instead of potato and sometimes these words may be unrelated, e.g table instead of potato.

• You may say ‘yes’ and ‘no’ but mean the opposite. This can make it difficult as your answers can be unreliable.

• You may pause a lot when you talk. The word you want may be on the tip of your tongue but you can’t get it out.

• You may speak at a normal rate but your speech may not be recognisable by others . This means your speech may not mean what you wanted it to.

• You may not be able to speak at all. You may be able to produce a few sounds. You may find it hard to form certain sounds.

• You may only have a few set words that you can say. These words may be swear words or emotional words. You may say these words when you didn’t mean to.

• You may find it hard to speak in full sentences. You may get the words in the wrong order or only be able to say a few words at a time. You may miss out certain words that are important in that sentence.

by Rebecca Kipping, Speech and Language Therapist
January 16, 2014 · Facebook
The Speech Therapy Centre - North West England
http://www.speechtherapycentre.com

Aphasia Simulations

Here is a very useful tool to instruct your family and friends about aphasia and what you are going through! It is an aphasia simluator, developed at the University of South Florida. They will soon understand a bit more about your frustrations and challenges. 

Find the simlulator here.  The simulator works best on a computer. It is not reliable on an iPad.

iPhone/iPad/iPod touch Accessibility

Intuitive by design, iPhone, iPad, and iPod touch also come with assistive features that allow people with disabilities to experience the fun and function of iOS. With these innovative technologies built right in, iOS devices become powerful and affordable assistive devices.

~Apple iOS Accessibility web

Go to Settings > General > Accessibility

Accessibility web here. 

Accessibility Tips and Tricks web here.

Lists of iPad and iPhone Apps for SLPs and Stroke Survivors from Working Speech Pathologists

I'm so excited!  There are so many apps available on iPads/iPhones to help people with their speech. 

I found four great reports on iPad/iPhone apps. Below are descriptions of each.

1. Tactus Therapy Solutions presents:  200+ Apps for Adult-Focused Speech Therapy - here

The Independent Living Centre of WA has a great resource for ipad and iPhone apps. It is great for both Speech-Language Pathologists and stroke survivors. It goes over the basics if using the device and gives great reviews for many useful apps. 

Below are the links to the extensive report. I've noted the pages I found most useful for people with aphasia and apraxia.

2. ILC's Using iPads in Speech Pathology

Click here to read the report.

• iPad settings - page 7

• Aphasia Apps - pages 101 - 102

• Apraxia of Speech Apps - pages 103 - 104

3. ILC's Getting Started - useful iDevice (iPad, iPod, & iPhone) Apps

Click here to view the file.

• Lists of Apps recommended or reviewed - page 0

• Communication (like Prologuo2Go) - pages 3 - 5

• Comprehensive Literacy Support (like iWordQ) - page 19

• Math - pages 20 - 21

• eBooks (like Read2Go & iBook) - page 29

4. Jane Farrall is a speech-language pathologist and and expert in Augmentative and Alternative Communication (AAC) and Assistive Technology in Victoria, Australia. 

Here are links to her AAC apps lists and reviews:

Jane's AAC Apps in Symbol/Picture Apps is here

Jane's AAC Apps in Symbol/Text-to-Speech is here

Jane's AAC Apps in Text Based Apps is here

How to help with Aphasia

How to communicate with someone with Aphasia

• Aphasia Center of California (Dr. Roberta Elman) interview for Comcast Newsmakers video

         

• "I have aphasia" letter is here

• Top 10 tip for talking with people with people:

• Certain things that can help if you are talking to someone with aphasia by The Speech Therapy Centre - here

• Printable communication boards for adults with aphasia - here

Aphasia Simulation - here

Strategy Games - here

How to help with stroke - here

Aphasia websites:

• National Aphasia Association - here
• Voice of Hope for Aphasia - here

Aphasia videos:

• What is a stroke?

• 7 Steps to Stroke Recovery

• A short educational video for children about aphasia following stroke.

How to Communicate with Someone with Aphasia by TAP

Once I was asked to explain “in layman’s terms” how to best communicate with someone with aphasia.

I thought about it and said… ”It’s kind of like learning to dance… each person has a role and learning the steps makes for a beautiful exchange, and when one doesn’t know the steps, one or both may end up with sore toes… or feelings in this case!”

Steps in the Communication Dance!  Let's go here!  

~Triangle Aphasia Project, Unlimited

Tips for Speaking with People with Aphasia by ARC

• Speak slowly & simply.
  
  
• Stay on one topic at a time.
  
  
• Talk to me. I am not invisible.
  
  
• Write down key words & use visuals.
  
  
• Do not shout. My hearing is fine.
  
  
• Please be patient. I am trying hard.
  
  
• Don’t finish my sentences or interrupt.
  
  
• Ask if I want help. Don’t assume.
  
  
• Do not pretend you understand me if you don’t.
  
  
• Let’s talk 1-on-1 in a quiet room.
  
  
• Please show respect. Aphasia affects my speech, not my intellect.
  
  -Members of ARC with Aphasia