Aphasia Nation – The Mission
The purpose of Aphasia Nation is to educate the wider public about aphasia and particularly the healthcare and hospital communities. About 25-40% of people with stroke acquire aphasia yet few in the public are aware about aphasia and the link to stroke.
Beyond aphasia awareness, educating the public about neuroplasticity, the foundation of all learning, is the next step. Stroke survivors and people with aphasia have learned about plasticity the hard way. The rest of the population need to learn about it too. Learning a new skill, mastering algebra or relearning one’s language after a stroke all possess the same experience-dependent neuroplasticity.
People with aphasia (PWA) are taking the lead! Why not? No one can do what millions of PWAs have done! We have learned that an injured brain is still powerful enough to rewire our brain and regain our language, severity notwithstanding.
Please join us!
Aphasia Nation – The Membership
Aphasia Nation is looking for people with aphasia (PWA) as well as other aphasia advocates who are hard at work raising aphasia awareness (and neuroplasticity) and telling their stories worldwide. This will also include partners around the world with similar interests and passions, while developing a sense of community.
Aphasia Nation – The Metaphor of Photosynthesis and Plasticity
Photosynthesis is a process that converts sunlight into green leaves, and is a wonderful metaphor for plasticity and aphasia recovery. The plants and leaves contain light-dependent reactions that provide the energy required to sustain life on earth. The leaves change sunlight into chemical energy and give off oxygen as a waste product.
We have learned about photosynthesis when we were in elementary school. Learning about plasticity at a young age should be part of early education too. Plasticity converts thought (it might as well be sunlight) and cognitive activities (reading, writing, and speaking among other things) into neural (brain) matter. Plasticity is the foundation of all learning and creates dendrites and synapses, the metaphorical branches and leaves of photosynthesis.
Aphasia Nation – The Work
Aphasia awareness is so much more than just stating our case and then hoping that people will learn about how the brain works in just one class or one presentation. The Rosetta Stone of aphasia recovery needs persistent, repetitive and intensive language activities to induce plasticity for the long term. It is also the case for educating the wider public about aphasia.
It requires persistent, repetitive and intensive training activities that induce plasticity (and the resultant learning) to educate the wider public. In the most interesting of ways, members of Aphasia Nation (PWA or not) will be learning about their own learning too and share their progress in plasticity. Lifelong learning and lifelong therapy use exactly the same brand of plasticity!
Preaching to the choir helps, but only up to a point. The public will remain unaware until the Aphasia Nation “doers” take on the work that is needed to educate the hundreds of millions of people around the world about aphasia and plasticity.
Aphasia Nation – The Activities
Educating the wider public about aphasia and plasticity requires a massive effort across every domain: government, business, schools, lawyers, law enforcement, hospitals, healthcare providers, churches, and non-profits just to name a few. Please see the Activities and Services page for more info.
Aphasia Nation – The Goal
This is where the work starts! Aphasia Nation needs what every non-profit organization needs…more of everything! More members (in every state and countries around the world), more resources (money, time, and political will) more committees (finance, IT/Web, development, communications, and governance) more staff & volunteers, more donors, and more contributors. But one step at a time!
Aphasia Nation – The Missing Link
Aphasia is a communication disorder, typically from a stroke, with language problems including reading, writing, and speaking. There are about 2.6 million people with aphasia in North America more than many other common conditions including cerebral palsy, multiple sclerosis, Parkinson’s disease, or muscular dystrophy.
Yet, it is a serious language disorder that most people have never heard of!
It has taken years to develop the social consciousness of HIV/AIDS that was needed to educate the population about the issues and linkage between HIV and AIDS. In an analogous way, most of the public are well aware about stroke today and have been educated about the cause and effects of stroke, yet few know much about aphasia and the parent-child relationship between stroke and aphasia.
Public education is the key to the missing link that ties stroke to aphasia. People who have never heard of it before, what it is connected to, or how to pronounce it (uh-Fay’-zhuh) have no idea what aphasia really is.
Why is it that hospitals don’t use the word ‘aphasia’ in their website and literature?
It is an interesting conundrum and difficult to describe. Everyone is the medical community know about stroke and aphasia. Every employee at every hospital knows exactly what aphasia is. The problem is that those staff at those hospitals (unless you are a speech therapist) with not use the word ‘aphasia’ when talking with a person with aphasia (PWA).
I talked with my PCP (primary care physician) recently on a TeleMed call. He asked me what I have been doing. I told him that I donated a half dozen copies of my fourth book, The ABCs of Aphasia: A Stroke Primer to his hospital and explained the problem about the lack of aphasia awareness in the country and especially in the healthcare and hospital communities.
I told him about our local hospital (of which he is a board member) that there is no information in the hospital’s website about aphasia. If you insert “aphasia” in the search box, you get, “There are no results”. Working with patients with stroke and aphasia, doctors and nurses will often refer to them and their family as having “problems talking” with no mention about aphasia. The language (and lexicon) of aphasia included a lot more than just problems communicating.
My doctor was somewhat appalled and wanted to know why. I told him it is a public and healthcare education issue, among other things. It took years for the healthcare community to develop the HIV/AIDS lexicon that was needed to educate the population about the issues and linkage between HIV and AIDS.
In an analogous way, most of the public know a lot about stroke today. They have been educated about the causes and risks of stroke. Yet few know much about aphasia. Sadly, many healthcare providers including large, well informed hospitals do not provide any information about aphasia even at certified comprehensive stroke centers!
The leadership, staff, nurses and doctors at every healthcare provider and hospital needs to be educating about aphasia, and the missing links, from the perspective of a person with aphasia.
Why is it that there are no stroke/aphasia linkages between traditional hospitals and rehab hospitals/facilities?
The problem is that the link between stroke and aphasia isn’t broken, the link was never built in the first case. The problem is that healthcare in the US is highly specialized and therefore fractured, sometimes in a good ways and sometimes not. The reason why traditionally hospitals do not use the lexicon (or language) of aphasia isn’t because it doesn’t want to. It doesn’t need to.
Their job (and they are very good at it!) is to stabilize their stroke patients and as appropriate (and as quickly as possible) to move people with stroke and aphasia to their next rehab destination (in-patient or out-patient facilities) or at home. At that point, the staff, therapists, doctors and nurses fully endorse the language of aphasia and start the process of educating the loved one and their family and friends about this thing called aphasia and the marathon they are about to start.
But there are two big problems: one is that many people with aphasia who are discharged in anticipation of moving to a rehab facility, will wait at home for weeks if not longer waiting until the rehab facility is ready for them. Waiting for a month or two without any information about aphasia from the discharged hospital, especially at the start of the recovery race, is losing the race. The sooner the better is always the best when it comes to aphasia recovery.
The second issue is that upwards of a half of all people with stroke and aphasia who are discharged, go directly home without any rehab opportunities. There could be any numbers of reasons why; lack of insurance, social isolation, distance to healthcare, depression, lack of finances, no transportation, lack of caregivers and so on.
Again, the discharged hospital should provide at least some amount of information about aphasia on their website and with materials (pamphlets, booklets, books) to be provided at discharge.