When my husband survived a serious stroke sixteen years ago, he was left without language or comprehension, and he was only 46. I came across National Aphasia through a reference in a stroke info book and called. (I had already called American Heart and National Stroke, and their help was more general to stroke.) I was so comforted by the woman on the phone, who's husband had suffered the same loss, and the materials they sent. As a result of their good work, I became active in the Aphasia Community, and started the only support group in Indianapolis, IN for aphasia. Because of them, I was led to more specific therapies for my husband's recovery, and though very different, he has a high quality of life. They regularly have small conventions around the country to help people with aphasia adjust and learn more about their disorder. Being able to communicate is like breathing. They are the only association I am aware of devoted solely to Aphasia.
When my 46 year old husband suffered a stroke, National Aphasia was the one agency that provided pertinent information and consolation.
I found this resource in the back of a book about stroke. The personal, caring way they reach out with every phone call speaks volumes about this wonderful organization. Aphasia affects more people than Parkinson's Disease, but few people have every heard of it. National Aphasia works to bring knowledge, acceptance and support to our communities. The work they do is so important, and so unrecognized. I have been in the Aphasia Community since 1996, and since started a support group. Without them, we could not enjoy the success we have.
As a volunteer in the Aphasia community, and as a registered nurse, I sincerely support the work this organizations does.
The National Aphasia Association was created in direct response to a great need to speak for a group of individuals who, literally, cannot speak at all for themselves or cannot effectively get their message out or access others in regard to a critical need for support. Persons with aphasia have experienced throughout their "pre-Aphasia" life the ability to communicate normally - to sit around the family table and tell stories, to read to their children, to give speeches or lectures, to order at a drive-through, to verbally express their affection for someone, to read a book or write a letter. Then, usually with a swift "brain attack" those taken-for-granted abilities are taken away or decreased significantly. The NAA was organized to provide advocacy with governmental agencies, healthcare providers, and other influential entities. We wanted to educate the public in general about aphasia and to let persons with aphasia and their families and friends have easy access to educational materials, provider lists, recommendations for improving communication, and ways they could also help each other. Though a small organization, it has touched the lives of thousands of people with aphasia, their families and healthcare professionals. With a meager budget and a lot of determination, a small group of dedicated advocates started an organization which has been amazingly effective in getting "the words" out about the dilemma and the needs of those lacking words to express it themselves. Funds have been raised, educational materials have been developed, easily accessed volunteer professionals have been made available for contact, and community groups have been organized for enhancing communication skills and supporting families. There is much work to be done but the story of NAA is a true wonder and deserves to be told.
I don't know where I would be without the NAA. My father has global aphasia from a stroke 6 years ago and has been living with this condition ever since. THere are not many resources out there for individuals with aphasia and their caregivers, and even fewer support networks. This is what makes the NAA so vital to all of us.
The National Aphasia Association is a direct link to communication advocacy. I volunteer for this association because it has all the right resources at all the right times. The web resources are fantastic. When people lose their communication, the NAA and it's many volunteers are the key to unlocking doors to independence in meeting necessary and social needs and helping those individuals maintain dignity.