I met with a couple yesterday who had just been discharged from speech therapy. The wife, who has aphasia, wasn’t given any real follow-up or homework to keep making progress. This couple lives locally and had been looking into coming to the intensive aphasia program. They had visited their neurologist for advice, and I’m still amazed at what our medical professionals are telling their patients.
Their neurologist told them not to bother with any more therapy (this patient is less than one year since her stroke). Don’t waste their money, no amount of therapy was going to make a difference. Since those of us in the aphasia world know that this is as untrue as untrue can be, I wondered what perpetuates this idea with our doctors.
My first idea is that most doctors see your family during and after the stroke for brief time periods. Based on that few minute visit, your doctor forms an opinion about you and your recovery potential. You may never see this neurologist or doctor again. If you do, he/she isn’t likely to notice if you’ve made improvements when they meet you once a year. They may never have met someone with aphasia who has made significant improvements.
The second possibility is that the medical professionals’ idea of “progress” and quality of life is different from ours. The doctor may be thinking that you’re never going to get back to “before stroke” level, so anything less than that is nothing at all. I don’t know about you, but each step up to me is a cause for celebration. If you have a goal to order your own coffee and you find a way to do it, doesn’t that mean you’ve made progress? Is that to be considered useless? I believe that there is always something that can be done given time, effort and thought, although that “something” may not be as much as we’d like it to be. Always preserve hope.
Another possibility is that practitioners don’t spend time reading research. I know it’s hard to find time, especially when medicine is such a huge field. The doctor may not have enough patients with aphasia to make it a priority to them. Intensive aphasia rehabilitation and its positive effects have been around for at least 20 years, but perhaps the doctor has never met anyone who’s been through it. Even typical aphasia therapy schedules (1-3x a week) have research and results behind them. If aphasia therapy is not helpful, then why prescribe it in the first place? Somewhere there is a disconnect.
Lastly, I think that there is still this myth that if your stroke/aphasia is more than a few months old, you’re stuck with what you have. Since neuroimaging research shows that the brain can still make big changes up to two years after a stroke, there’s still lots of potential being wasted when the doctor and insurance decide it’s over. Even after this two year spontaneous recovery period, you can make changes. If people without aphasia can learn, then so can people with aphasia. Learning means that you are creating new neural pathways, which is what we’re achieving with aphasia therapy.
Thankfully, not all medical professionals think this way. I’ve encountered far more practitioners who encourage and prescribe hope and hard-work than I have nay-sayers. I’m grateful that the couple who stopped by yesterday decided to find out the possibilities for themselves instead of dashing all hope. But for every couple who know that aphasia can better, how many are listening to the language of discouragement and plateaus?