Kaye found a huge difference with intensive therapy for Primary Progressive Aphasia

John’s family had a hard time knowing how to communicate with him due to his Primary Progressive Aphasia. They found hope and understanding through education about PPA and very specialized training with John. John felt more confident and less embarrassed about not understanding other people.

We will have additional people come and help John and we have learned so many things that we can give other people, we can help to give them direction for what he needs and particular exercises that can help him work towards maintaining what he as in the way of communication skills and improving also. The key is communication. You’ve got to build on what you have. I really think that the stack of things you’re sending home with us will be really helpful for us as well as other people. But especially introducing other people to it, we also have friends and volunteers that have worked with him some. They don’t know how to help him.

And I think specifically some communication things I’ve realized is that when you speak to someone who has aphasia it’s hard to tease out why they don’t understand this sentence versus something that might have been more complicated. So for example, just breaking it down to say “Oh wow, he doesn’t actually understand questions that have the Wh- question words. “ That seems so basic, it’s like “Of course, we would have seen that!” But we didn’t because it’s, you know. He didn’t understand the question so we might just accidentally reword it without that question word. So now, that’s a cool thing we can take home and realize like when we ask a question if we really want him to understand, try to be creative with the way you ask it. And, you know, more yes and no answers are better, choices of answers are better, so things like that. Techniques to communicate so we don’t get frustrated and he doesn’t’ get frustrated. So it’s a win win.

It’s been encouraging for him because we know that it would be terribly frustrating to be in that position. So it’s been encouraging for him to find other ways to understand also. And to communicate with other people. And he needed that to kind of get over the hump and get back to working hard on it and feeling like he can accomplish something.

When you go once or twice a week, you form less of a connection with your therapists. And they have patients in between, and they don’t pick up the patterns as quickly as here. Especially since you are specialized in aphasia. It’s a huge difference. From the get go, I was here I guess the third and fourth week. Right when I got here I could just tell that he was more confident. And I think that’s the biggest thing he’s taking away from here. You know, confidence to try to interact with people and not get embarrassed that he can’t understand. So instead of just making him write everything, it’s good because he will try to listen now because he doesn’t just feel upset. That’s the only way you can build and he’s doing great. I definitely see a change, it’s wonderful.

One thing that I’ve appreciated here is the attention to the specific interests of the individual. And once they’re interested in topics that you’re talking about and trying to communicate it gives them more reason to learn to communicate better.