Roller-Coaster of Primary Progressive Aphasia

Contributions from other Persons Living with Dementia symptoms:
KimJoy Ovard,
with Primary Progressive Aphasia (PPA)-type of Fronto-Temporal Dementia, along with Lewy Body Dementia.

KimJoy Ovard on 2019 April 9:

Come into my world. …

Today my words didn’t wanna come out right again,
it’s a mumble or noise
as I can’t form them ((words)).

Poor Blake gets yep yep yep...
mind you yep yep yep means things like whole sentences,

… its in here but cant get out.

It passes and I talk good,
kinda good,
bad,
then good again,

like a rollar coaster

or like I got a short like a radio,
just wack me and Ill work again,

if only that easy….

but its daily now,

I also tried to help Blake today,
simple task, tape glass shelves, 4 peices, top bottom..
simple huh, well I was proud of me, thought I did good. …
seems as usual what I thought I did good wasnt…
some not taped, well you get the idea.

but ya know I tried, …

at the time felt I did good…

each day I accept these things as short falls
… new normals
like having so much to say but nothing can come out

…hmmmm good thing I like me
cause I’m gonna be in here with myself soon…

.

2:13pm (Below i transcribed from KimJoy’s video >>– https://www.facebook.com/kim.ovard/videos/pcb.10156761807025546/10156761787675546/?type=3&theater)

“Hello, I  …”
… “No talk 2 times today …
Blake go to store … I sit here …
I … no can talk right …
— no !”

.

((… and Transcribed from minutes later, at this video >> https://www.facebook.com/kim.ovard/videos/pcb.10156761807025546/10156761796070546/?type=3&theater ))

“Within minutes this is how it changes.
I could no make words come out, but right now you can hear me.

This morning it was like this,
then I talk just fine,
then it just went to where it was just …

Now it’s coming down to right like this.
And I probably will be okay again,
but that’s two times today,
and that’s more than it’s been doing.

I no can make the words.
It cant come out.
It no work.

The mouth; nothing makes the words
… it’s like the brain makes where the muscles no work too,
and I cannot form them.  But …

Up here,
in my inside,
I’m talking normal.

This is how crazy this disease of Primary Progressive Aphasia is.

And it’s so horrid for you-all to understand,
because during the okay times I look just normal and fine.

These other times come and go constantly,
like a roller-coaster.
… Everything in here.

I know what I want to say
… nothing works to SAY it.

This is very bad disease,
but I keep going.”  …

.

Other text comments throughout the day:

made video just bit ago mostly to show myself I not crazy.
. I can’t get words out…then can

…hmmmmm we need a cure..

if bad day, get up anyway
and try.
Be happy right where you be..

.

8:49pm (Below was transcribed by me – Tru, from video when KimJoy had no trouble speaking) >> https://www.facebook.com/kim.ovard/videos/10156762530940546/
.

“I made some videos earlier today, and I wanted to make this one now,
because I get to be ME right now. …

I’m hoping these videos help care-givers understand
that the dementia person is still in there.

We can’t help the fluctuation roller-coaster. …

I believe God has given me this life. …

… you don’t know what someone’s struggling with,
and you don’t know,
from minute-to-minute,
how fast it can go away.  …

… It’ll build up again because the brain functions EVERYTHING;
from my walkin’, my talkin’, everything I do.
Dementia is just a bad disease.

My mouth, nothing forms the words.
… there’s nothing I can do to control and get it ((the words)) out.

It’s very frustrating because inside I’m here; I’m just like I am now.

Get in a support group;
talk to the people with it ((dementia))
so you understand that your person, that has it, ((dementia))
is IN there.

… at any moment I am going to go mute just like those videos.
… I want to be thankful for my life … my store …kids …

Be good to people, people.
You don’t know what they’re going thru. …

My prayer is I’ll help somebody. …
Don’t take for granted ANYTHING in your life,
because it can change in a minute,
like my day.

Think about what YOU can do
… do SOMETHING …

___ * ___ * ___

.  Sourced (with KimJoy’s approval) from:

First posting of day >> https://www.facebook.com/photo.php?fbid=10156760635740546&set=a.167198295545&type=3

Two Videos >> https://www.facebook.com/kim.ovard/posts/10156761807025546

Video when Able to speak without difficulty >> >> https://www.facebook.com/kim.ovard/videos/10156762530940546/

Go-Fund-Me >> https://www.gofundme.com/final-terminal-mother-amp-son-trip-home

.
Full context on KimJoy’s FaceBook page >>>> https://www.facebook.com/kim.ovard

YouTube Link for vid >> https://youtu.be/ZjO0bZSv_6s

.

KimJoy’s index page is here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/kimjoy-ovard/

.

Explanatory page for varieties of FTD (including PPA) at >> https://www.nia.nih.gov/health/types-frontotemporal-disorders

Explanatory page for Fronto-Temporal Dementia is here >> http://www.theaftd.org/life-with-ftd/newly-diagnosed

Explanatory page for Lewy Body Dementia is here >> https://www.lbda.org/learn_about_lbd

.

You can follow KimJoy Ovard on Instagram >> https://www.instagram.com/kimovard/

You can follow KimJoy Ovard onFaceBook >> https://www.facebook.com/kim.ovard

Contributions from other PLwD are indexed here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/

.

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. Above items are Copyright exclusively by KimJoy Ovard © 09Apr2019, but if there are font changes i probably added them to make it easier to find later. I may have also added paragraph and line breaks, to make reading easier for those with dementia. KimJoy Ovard’s final approval on this finished page was 25Apr2019 via … PM. Tags are: dementia, KimJoy Ovard, PLwD, PPA, primary progressive aphasia, speech, symptom.

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UPDATE: ((Previously, i had a notice here at base of each entry with announcement and Logo for HealthLine 2019 Best Alz Blogs. To my surprise, after HealthLine contacted me in January with fact that i was included in 2019 Best Alz Blogs, then announcing it publically on March 18, ten days later they decided against including writers with Mild Cognitive Impairment, and removed this blog from their listing, leaving only one first-person perspective. Now i am deleting each of those announcements of my inclusion on HealthLine Best Alz Blogs for 2019. i hope they soon decide to include at least one other first-person perspective in their “Best Alzheimers Blogs”.)) >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

 

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