This has been a very long week + 2 days. That’s how long it’s been since I’ve lost the ability to speak.
At first, it was scary. I didn’t know how I was going to get through this. Then, my support system, comprised of Bradley (16), Asheton(22) and Shannon (I’m not telling her age!) stepped in, telling me I’m not alone in this, and that “WE” will get through this. They have kept true to their word.
So far, I haven’t received any encouraging news as to what caused this. One Dr. said it could have been the brain hemorrhage that showed on my MRI.
Another said it was the growth and spreading of plaques and tangles in the frontal lobe of my brain.
Another said it wasn’t any of those things.
So, I’m feeling very good about myself . . . NOT!!!
The one positive thing about all of this is the unbelievable support, encouragement, and love that pours in each and every day. It comes through texts, both facebook messenger and posts, twitter, Instagram, and e-mail. The organizations I volunteer for, Alzheimer’s Association (national and local) Dementia Action Alliance, Covenant Care, and Dementia Alliance International) have all sent messages of encouragement and concern. Covenant Care even went as far as sending (and hand delivering) a card full of encouragement along with a praline and pecan King Cake. (Don’t worry, I took an extra dose of insulin. I wasn’t about to miss out on that deliciousness of sugary confection. And besides, it would’ve been rude of me if they asked if I enjoyed it and I answered with, “I don’t know, I didn’t eat any of it because I’m diabetic!” My Momma taught me NOT to be rude.)
Anyway, back to the no-speaking thing.
Being I can’t communicate, except for very few words, (Love You, Yes, No, and Pee-Pee. Just to clarify, Pee-Pee is for my dog Dallas . . . not for me!) I use a whiteboard and an app named “TextToSpeech”. You pick the type of voice you want, you type in whatever you want to say, and then hit speak. It’s very easy to use. Since I’m still able to form words in my head, I’m still able to type and write. I don’t know how, but neither does anyone else so far. I’m hoping someone, someday with be able to tell me exactly what’s going on.
On the negative side, I’ve had to cancel a number of my speaking engagements and I literally hate that. Since being diagnosed with Alzheimer’s, I’ve never had to cancel any speaking engagements. Having to do so makes me feel as if I let a host of people down especially when it comes to Law Enforcement. I always enjoyed teaching them the Crisis Intervention Team Training, where I taught them how to recognize someone with Dementia. It’s important since more and more individuals, especially baby-boomers like me, are being diagnosed with a Dementia-Related Illness. I know it is being left in good hands but . . .
I’m also getting used to not driving anywhere. It’s not the “not driving” part, it’s being isolated and dependent upon others. I’ve burdened my family enough already. Now I’m asking them to drive me places or to get me things. I hate having to ask but they never say no. They always find a way. I’ve come to the realization that I’ll never drive again and, like everything else, that will have to be OK. There’s always UBER, if I need to get out. I can use my Text to Speech App to tell them where I need to go. We’ll see.
I’m just going to continue to do what I do as best as I can. I will advocate through the written word instead of the spoken.
I will keep a positive attitude, especially when it comes to my family. They don’t deserve to have to take care of me especially with a “piss-poor” or a “poor poor me” attitude. They deserve the best me I can be and that is what I strive to do.
Some days are rougher than others. Yesterday I was in bed the majority of the day for I kept falling. My dizziness was at an all-time high. I figured the best way to deal with that and not worry my family was to eliminate my walking. So I stayed in bed.
Before I go, I just want to drive home one more thing.
Yes . . . I have Alzheimer’s!
Yes . . . I can no longer speak!
Yes . . . It’s a pain in the ass to deal with!
However . . . I’m Still Here, Living the Best Life I Can!
There are many others in the world who are just like me.
DON’T COUNT US OUT!
We still have a lot of life within us.
We still have a lot to say and we’ll say it through any form of communication we are able.
We will continue our Advocacy, raising Awareness and Educating about all things Dementia-Related.
Even when we are no longer of this earth, our words will still live on.
“I Have Alzheimer’s BUT, It Doesn’t Have Me
for I Don’t Allow it to Define Who I AM!!!”
Until Next Time,
4 thoughts on “And So IT Continues . . .”
Your posts are courageous, insightful and a testimony to the value that those with this disease continue to possess in spite of the obstacles you have to deal with everyday. So glad you have such a supportive group around you.
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Love your attitude. If you were supposed to speak at the Emerald Coast Alzheimer’s Walk – like you did so eloquently last year, I’ll be happy to read what you write. (if your voice is not back by then).
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Thanks for giving me such a vivid insight into your journey. Your posts help me to be a thoughtful Care Partner for my wife.
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Your post gives me peace. May peace and blessings continue your way!!!
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