I’m still in here…

You will be able to see how the challenges have changed for Cory in the seven years since the post I shared from yesterday.

from a blog by Cory King The Crooked Path posted Nov 2019

“As time passes, I’ve learned to expect the unexpected from Parkinson’s. It’s surprised me with several unpredicted outcomes, some positive and some not so positive. Sometimes, it’s the physical and mental impact of the disease that’s surprising; sometimes it’s the unforeseen result on my relationships and social interactions. Sometimes I rise to the challenge; sometimes, not so much.”

“Parkinson’s is a thief, and a sneaky one at that. It’s never honest about what it steals; it gets you while you’re not looking, and takes things you never had the good sense to value, but turn out to be central to a good life.”

“Parkinson’s is stealing my ability to communicate. I always took my ability to explain, to comment, to describe for granted, and I didn’t realize how fragile it is. Not being able to communicate my thoughts and feelings without extreme effort is devastating, and it affects every other part of my life. It seems like such a simple thing, but Parkinson’s gets in the way at every turn.”

“I’m typing this blog post, because my voice recognition systems no longer recognize my voice. Siri and Alexa don’t know what I’m trying to say. Dragon Dictate tries harder, but they all three come up with novel (and sometimes amusing) interpretations of my faint, garbled, slurred statements, and it takes more effort to correct them than it’s worth.”

“Typing is a little easier, but only a little. I don’t coordinate movement between my two hands very well any more, so I have to type one-fingered. I occasionally can still think with some alacrity, but I type so slowly that the thoughts often get lost. My writing is less nuanced, and I often find myself taking shortcuts in my writing, opting for the simple and short rather than the complete and expressive. That may be a good thing.- I don’t know. I do tend to run on, but this externally imposed brevity is frustrating and irritating.”

“Although I sometimes can still think with near “normality,” I often think as slowly and incompletely as I write. This is the most disturbing of my recent communication deficits, because it not only impacts the transmission of information, it limits my ability to have anything worthwhile to say. My interpersonal communication as well as my written communication are altered by this impact; even with people that know me well, I perceive that there’s a “pulling away” when I’m struggling with a simple conversation or fighting to respond to a question. It’s a negative feedback loop, too – the harder it is for me to talk and have simple conversations, the more I shy away from them. I’m becoming more socially isolated, because it’s just exhausting to try and have a simple verbal interaction with someone.”

the feeling of horror I occasionally have about what’s happening to my mind and body, and my feelings of claustrophobia, of being imprisoned in my own body. On my worst days, it gets close to the feeling I have about being unable to express my most basic feelings, of being unable to defend myself in the most elementary disagreement, of being unable to correct a simple misapprehension or inject my belief and views into a conversation. My inability to be the “me” that’s still in here, but is trapped and voiceless.

I can’t even i,\magine how many hours it took Cory to get this piece typed, and expresss himselg so well. (He would have errors just like what O just typrd… to go back and correct) (He would have to re order his thoughts to mske the piece flow.. by cutting and pasting.) Wat a example of fedterination… determination!

…………………………………………….. an update typed 1/1/2021

I haven’t written for almost a year and I’ve been thinking that my contributions to this blog were at an end. I’ve progressed significantly in the last year. My voice is usually not understandable, and I am using a wheelchair most of the time to manage my risk of falling. The disease remains variable, so things are not always bad, but I have a view now of what the end looks like, and it’s not pretty. I knew this was coming, but I honestly wasn’t ready for it. I’m not there yet, but it’s more real to me now than ever before.

Typing with Parkinson’s

What follows was written by Omotola Thomas. Funny and sad at the same time. She has had PD longer than I, and her frustrations are showing.

Typing under the influence of Parkinson’s: 3 things your doctor didn’t tell you.

1. Typing will suck! Don’t try to fight it…. it will progressively suck! Did I just hear you say “Well, I can just use voice-to-text“? Sorry to burst your bubble, but as your voice gets weaker with PD, so will the ability of the V2Txt to decipher what the heck it is you are trying to say. If, like me, you are prone to ending your messages with “xx” to indicate the 😘 emoji, your precious dirty-mind of a V2Text-er will instead type “sex sex“… And when, in horror, you hurriedly try to delete it, your tremoring fingers will accidentally hit “send“. Imagine meaning to type “Cool… Let me know if you want to do it xx” 🥺🥺🥺

2. When you see your friend’s distraught Facebook post about her dog that just died, you will try to show your sympathy by clicking the “😢” emoji, but instead, you will click the “😂” emoji , and each time you frantically try to change it, you will re-select “😂”. If you are wise, you will accept your fate and stop trying because if you continue, somehow… (and I cannot explain how) the next thing that will happen is that you will end up “activating” and inadvertently sending a highly inappropriate GIF. The frustrating thing is that when you do actually want to send a GIF, you will not know how to. 🤦🏾‍♀️🤦🏽‍♀️🤦🏽‍♀️

3. When someone sends you a WhatsApp message, and you proceed to respond … They will see (on their end) that you are “…..typing”. They will see this “ …..<insert your name> typing” for a very long time, which will indicate to them that they are about to receive a long message from you. imagine their irritation when, after staring at “…is typing” for 6 1/2 minutes, your reply comes in and all you have managed to type is “Ok. Got it 👍🏾. “ 😐😐😐