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.

Synergy 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. The Synergy website will be available to aphasia groups across the country as well as individuals. Our strength is sharing the stories of successes 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.

Synergy 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 

• Angie Cauthorn (PWA) – Finance - Philadelphia, Pennsylvania 

• Denise Lowell (PWA) – Just ASK, President - Providence, RI 

• 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

Aphasia Center of California at Oakland

The mission of the Aphasia Center is to enhance communication skills, quality of life, and overall well-being for all those affected by aphasia. 

We pioneer innovative communication therapies using a life participation model, and are an international resource of expertise in the field through our community-based center, cutting-edge research, quality staffing, personalized service, deep understanding, and compassion for those whose lives have been impacted by aphasia.

Aphasia Center of California: here

CSU East Bay Aphasia Treatment Program at Hayward

The Department of Communicative Sciences and Disorders and the Norma S. and Ray R. Rees Speech, Language and Hearing Clinic offers an innovative and cutting-edge group treatment program for persons with aphasia.

 The program is proudly founded on the principles of the Life Participation Approach for Aphasia, championed worldwide by leading aphasiologists. This approach places the life concerns of persons with aphasia at the heart of clinical decision-making. 

Further, this approach prioritizes the meaningful participation of persons with aphasia in society. ATP provides a rich social environment for persons with aphasia to interact with peers who have aphasia, graduate student clinicians, trained volunteers, and program faculty who are all nationally certified and state-licensed speech-language pathologists.

CSU East Bay Aphasia Treatment Program: here