Updates // Through His Lens

This blog has always been written through the lens of the daughter of a patient with Posterior Cortical Atrophy. For a while now, it's been my intention to share something written through the lens of the patient himself, my father. Because of his condition, he no longer can write. So, over the past month I've compiled some of the things he comments about his disease. Often, his speech doesn't make much sense to those who don't know him well. But after years of dealing with this, I've become a pretty good translator of the messages he's attempting to convey. I have no intentions of mocking the disease, or his speech—only to be true to what he wants people to hear. So here are some of his own thoughts regarding his disability. 

About a month ago, my dad and I sat down for breakfast together. We began to discuss his upcoming visit to a special lab in Massachusetts. He's always very hopeful—in most cases, too hopeful—about the fate of his disease. With difficulty, he rambles about his hope to drive again, read again, and speak easily again. It's really hard to hear, and it almost seems like the world is against his positivity Because, in all reality, the disease isn't going to go backwards. It's just not. In the nicest way possible, I reminded him that it's a lot more realistic to hope that things just don't progress any further. 

"If everything stops here, it'd be love."

That's his way of saying that if nothing progressed further, if he continued the way he is now, he'd be more than content. Not reading, driving, speaking easily, or writing is far better than the alternative: the unknown. This unknown could scares us all. He could stop recognizing my face. He could forget my name. He could stop speaking at all. Everything we deal with now seems perfectly okay compared to all of that. 

"No one really knows what to do."

Although we hope there's no further progression, no one really knows how to stop it. My dad always stresses this point, it's really un-researched. It's really rare. And as of now, the best he can do is take 2 pills a day, that, to the best of my knowledge, aren't PCA specific. After his visit to a lab in Massachusetts, he reflected on his trip. 

"Nothing." 

After the whole hype surrounding this trip to a lab, he came home with exactly what everyone didn't want to here. The doctors told him that they had seen a few other patients with the same disease. They also told him that there's nothing they could do. Nothing at all. So we just wait. Wait for the next opportunity to hope for good news. It's a frustrating cycle of events. Hope, get news of an opportunity, get let down. 

"I wanna see you as long as I'm alive."

This doesn't need much explanation. I also wanna see him as long as he's alive. And I will see him, as long as he's alive—no matter the condition of functionality of him. I'll be there, also hoping.

For the first time, an acquaintance of my dad's walked over to me after Synagogue on Wednesday, and asked if he has a safe way of getting home. I never realized that other people really notice his disability to that extent—worrying about how he'll get home alright. But I assured the man, yes, he'd be alright. And yes, I made sure he was. I'm glad to take care of him. And at the point of progression we're at, I'm glad that others are now realizing that he is the way he is not because he's "stupid," but because he has a disability. I'm glad people care. I'll always care.