Thursday, October 29th is World Stroke Day. Below is the personalized portion of the letter I wrote to my legislators, asking them to recognize it on the floor. Obviously, I edited Sis’ real name out for privacy reasons for this post, but I wanted to share. There is still time to write to your legislators, asking them to recognize World Stroke Day…and if you don’t want to add a personal story, that’s ok! You just fill out the electronic form with your name and address and you’re done! Click here to send your letter!–ML
It is important to me because 16 months ago, my world was turned upside down by stroke. My youngest sister, at the age of 28, nearly died from a massive stroke. Miraculously, she is still with us, and because of amazing hard work and dedication from her, my mother (who has put her life on hold to move in with my sister as her caretaker), and her team of doctors and therapists, Sis continues to recover.
The stroke left Sis with paralysis on her right side, as well as aphasia, a language disorder that initially left her unable to speak at all. After 16 months of intensive therapy, she can walk on her own, with only a slight hitch in her step. She can also move her right shoulder, elbow, and arm fairly normally. She is still working on her wrist and fingers, and while there is some movement, she still does not have the control or ease of movement that she once did. She spends much of her day doing exercises that focus on the wrist and finger movements, but she still likely has months of work to do before those movements will begin to happen normally or on their own.
In regards to her speech, that has been the slowest and most frustrating part of Sis’ recovery. After 16 months, she is able to speak in 3-5 word sentences on her own, although often haltingly. She can speak in longer phrases if she repeats after someone. When Sis struggles while speaking, it is very evident that she knows what she wants to say, but the words are just ever so slightly beyond her grasp. As we’ve learned, having aphasia doesn’t mean that she has lost any intellect, just some of the pathways to get the words out. It is heartbreaking to watch her struggle.
Looking back, I am ashamed to admit that I knew next to nothing about stroke or stroke recovery before nearly losing Sis. I had little interaction with stroke survivors, and did not realize the full scope of it all. I have learned that every single stroke is different, as well as every single person’s recovery. I have learned that while those in the medical field know so much about the brain, there is still so much they do not know, so much they cannot predict. Sis is case in point; her doctors and therapists cannot tell us how far she will come in her recovery, she has exceeded all expectations up to this point, so much so that there are no statistics her doctors can reference to even make an educated guess.
That is why World Stroke Day is so important. There is so much more research and education that needs to occur, with the health professionals as well as the common person. Adjustments need made to health insurance in regards to physical therapy, occupational therapy, and speech therapy. It is becoming more and more clear that extensive and intensive therapy is vital in the months following a stroke, and therapy coverage should be expanded for stroke patients. Stroke is one of the leading causes of disability in the world; just imagine the return if we focused more resources into stroke recovery, and got those stroke survivors the therapy they need!