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

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

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

Sarah Scott - Teenage Stroke Survivor & Aphasia

Sarah had an unexpected ischemic stroke in May 2009 when she was 18. She now suffers from aphasia, a communication disorder.  She still has problems with numbers, reading and writing, as well as speech.

She is an Ambassador for The Stroke Association in the UK and works to raise awareness of aphasia, which affects millions of people worldwide, about 1/3 of this who suffer a stroke will have aphasia, a communication disorder.


Sarah's video - February 2010

Sarah's video - May 2012

 

Sarah's video - May 2015

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

Arm and Hand Exercises for Stroke Rehab

Like me, many stroke survivors have weakness in their arm or hand. It is important to exercise the muscles so they don't get tight. This can be painful and can impede recovery.

Here is an article about Arm and Hand Exercises for Stroke Rehab:  here

Here are some videos of arm and hand exercises. Please check with your doctor or Occupational Therapist and ask if these are the right exercises for you. Some of the videos show caregivers helping with the exercises.

Some of the exercises can be done either sitting or lying down on your back.

Post-Stroke Exercises (Part 1: Upper Limb)

• by SingaporeHealth

Arm Range Of Motion (Shoulder, Elbow, Wrist, Hand)

• by physicaltherapyvideo

Top 3 Stretches for a Tight Shoulder.

• by physicaltherapyvideo

Exercise For Stroke Patients, (For The Arms)

by physicaltherapyvideo

Shoulder Passive Range of Motion Exercises - Ask Doctor Jo

• by AskDoctorJo

Act FAST - Call 911 immediately

Think someone might be having a stroke?  Call 911 immediately!!

Act FAST to recognize someone suffering stroke symptoms.

Paramedics came recently to our Young Adults Stroke Survivors meeting. They gave these important tips.  If you think you or someone you know is having a stroke:

Don't drive yourself to the hospital! You could have an accident! Call 9-1-1 immediately. The paramedics will call the hospital to let them know that a storke patient is coming, and it is easier and more efficient for hospital personnel to receive a patient from an ambulance rather than a car.  You'll get your care quicker when you are transported in an ambulance.

Most hospitals in the Silicon Valley are Certified Stroke Centers. You'll be in in good hands.

The paramedics also reminded us to have an emergency contact on your phone. Label it "ICE", which stands for "In Case of Emergency." Emergency personnel know to look for that on cell phones.

It's also a good idea to get an app that can store your medical information.  The newest iPhone operating system has a new "Health" app which has a place for medical information, called Medical ID. The Medical ID can be accessed from the emergency dialer without unlocking your phone.  Below is a screenshot of my Medical ID information.

It is also a good idea for everyone to have emergency contact information that emergency personnel can find:

• Post Contacts and medical condition  on the refrigerator. Paramedics know to look there for emergency information.
• Get a emergency call system, such as Alert One.  Find it  here.
• Wear a medical I.D. necklace with important information.