Aphasia. No one has heard of it before they experience it.
All you know is that your life has suddenly coming crashing to a halt. Your loved one can't work, can't answer a question, may not be able to even say his name. All the intimate conversation, your plans, and a thousand other daily activities that we take for granted are gone.
You make it through the hospitalization, the neurology consultations, and the rehabilitation department. So far, you've been guided through the process—there's a plan. You may have been given hope for recovery, or you may have been brushed aside and told that 'This is it. Get used to it'.
Either way, the plan after rehabilitation is….what?
Like every other family with aphasia, you begin to search the internet frantically. What's the next step? This can't be all there is! Why is there no plan?
You learn about the benefits of intensive aphasia therapy and contact our center. You ask: Why doesn't anyone know about this? Why didn't our speech therapist mention this?
- Your speech therapist or doctor has a short exposure to people with aphasia.
- If they work in a rehab setting, they never see people with aphasia after discharge, so they don't know that you can get better.
- Unless your therapist finds an article or course about intensive aphasia treatment, they won't know about it.
- Neurologists only see your loved one every six months—they aren't going to notice a lot of changes in your fifteen-minute time slot.
- Your therapist is controlled by the insurance company, who decides when you've met your imaginary plateau. There is no evidence that a plateau actually exists.
- Aphasia education and resources are woefully inadequate. There's no funding and medical personnel aren't educated about it.
While intensive aphasia therapy has been around since WWII, with hundreds of research studies clearly showing outcomes that exceed twice-weekly therapy, few people know about it. You have to do your own research to determine what's next.
Educate your prior doctors and therapists when you go back home from our programs. Other families with aphasia are in your position, so your local hospitals and universities need to know about your progress with aphasia.
They need to hear about your success with intensive therapy or over time so we can start changing the idea that there's nothing left after rehab. There are millions of families like yours out there in the world, so let's help each other move forward.
