Imagine not being able to remember what you did just a few hours ago. That’s what life is like for Rob Rappel. He had a stroke in 2004. It’s his short term memory loss that’s the real challenge. He’s almost recovered most of the mobility on the right side of his body. Now his life is about his PDA and sticky notes. And researcher Teri Green wants to document this, so doctors who are talking to families of stroke survivors, know what to tell them about what life could be like down the road.
Here’s the story.
Rob Rappel and Teri Green have talked a few times. That’s because Green is researching what life is like for stroke survivors. And for Rappel – even though it’s been five years since a blood vessel burst in his brain – he still has no short term memory.
He says, “I’ve done a lot of recovery in this time frame, I’m still recovering. I still don’t know what I did yesterday.”
At first he was paralyzed on the right side of his body, but after intense rehabilitation, physically he’s doing much better. Now, his focus is on how to live without remembering what he did just a few hours ago.
“I’m very explicit in what I enter into my PDA,” he explains, “because this is my memory.”
So for many stroke survivors the physical disability is relatively easy to deal with – it’s the cognitive impairment – the memory loss, the personality change, that is really a struggle.
Rob says, “the physical disabilities, that’s just minor right now, the biggest thing is the short term memory and lack thereof.”
This is the kind of information Green is collecting in her research. She’ll take the information back to the doctors who are talking to the families of stroke survivors.
Green says doctors “really didn’t know what to tell families, these are the people making decisions at the time, because the patient is unconscious, what to tell families about what the recovery process might look like over time.”
Rappel used to be an electrical engineer. He’s now unable to do that. Green has found that’s not uncommon.
She says, “very few of them have been unable to return to the work they did previously, simply because they couldn’t manage the need for the memory and the cognitive processes that you need.” And these changes are what can be very stressful for caregivers, Green discovered.
But Rappel doesn’t let this get him down. At least he lives independently and can drive a car.
“I keep focusing on what I can do, not what did I lose and that is what has allowed me to survive.”
Because that’s what he did.
“Everytime I get down on myself I say, Rob, you’re still around. You’re still here.”