Dementia Success Stories:
“How we made a difference for self and those around us AFTER diagnosis”
A dementia brain-storming project by participants of PWD Perspective newsletter
Compiled and edited by Truthful L. Kindness (yes it is legal name)
- Sincerely Cecil
- Previous/current occupation(s?): …Military Police Law Enforcement Supervisor USAF Ret. Special Education Teacher/ High School and Night Hospice Nurse 17 years each
- Nation, & state if desired: …Washington State USA
- Age at tentative diagnosis: …57
- Year of diagnosis: …2012
- How long for definitive diagnosis: …4years
- Type of dementia: …. Posterior Cortical Atrophy
- Since diagnosis, what one or more action, success, or accomplishment do you take pride in? Adjusting to Impred vision, Re-teaching personal skills to include personal care, household tasks, quilting, crochet and calligraphy.
- What do you wish your primary Physician knew about dementia? … about you? …” I have dementia but dementia doesn’t have me. ” Quote from my friend Jan W. who is also a PCA sufferer. I have found that I can still do things, but I have to do them differently and finding new ways can take a while!
- What do you wish your specialist Physician knew about dementia? … about you? … I have my reasoning, I have my judgment it’s just up, down, right left, inside, outside and hot and cold that are all messed up.
- What do you wish your family knew about dementia? … about you?… I’m still me, and I remember everything – even though I lose my speech, my vision and my ability follow quantities and numbers or do things safely, it doesn’t mean I’m not here anymore. The thing is they don’t know how much time I’ve got left but their best guess is about a few more years. I’d just as soon not waste them.
- Date (2015 March 8)
Cecil: “We all have become medicine for each other …
I … like to help people grasping at straws
’cause I got a wide collection of the best ones that work really good”
per Cecil.
…
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Truthful Loving Kindness 
Thank you, I feel that an active sense of community serves this group the best. We all have become medicine for each other. We provide a living sense of progress and excitement for the future. Our future. One that is different than the rest. We don’t have to fear it, but we do have to negotiate it. Gail Shehey’s famous “Passages” was followed-up with “Pathfinders” the Title evaded me as I read it. I “get it”, now. Doctors can only treat the physical so far then something else has to take over. It can be this, that or the other thing. I think we are providing that other thing Sincerely Cecil
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Wonderful comments, Cecil. Thank you for adding them! ❤ — Tru
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What I do, every day, in order to keep my objectivity, take care of myself and help others through this nightmare of a disease is:
1) I wake up early, take my pills, feed the livestock, plug in and drink coffee
2) Routines keep me on track and functional
3) Depression is battled with 3 WMDD’s (weapons of mass depression disruptors) FIRST is Meds to include B complex and drinking water, SECOND is to Journal my upsets and frustrations to track and take responsibility for what is bothering me. THIRD is to never go to bed angry.
4) I Blog on a Posterior Cortical Atrophy Awareness site to help others understand what it is, and to get help from others who are farther down the road than I am. I did stop for a short while, but like a thousand people stripped gears. I do my chores and check in every so often. Chores come first.
5) I run my house with military precision. Everything, within reason, is in it’s place and contrasted against opposite colors to help me find it. My dogs have learned to keep their toys out from under my feet as I am Blind and will fall if I step on them. I stay on my schedule and do not deviate.
6) I make lists of things to do, and things to buy, even of fun stuff to do !
7) I take a nap after lunch and listen to a Digital Book on the machine. when I wake up I sit in the sun for an hour.
8) I use reading machines and ask for help when I cannot do things.
9) I remember that I am only 59 years old and have a lot of experiences to share. My judgment is sound, ( I got a paper that says so) ~ Hey, you know they still don’t do mandatory drug testing for Teachers ? ~
10) Finally, at the end of the day, I know I helped some – buddy adjust to horrific circumstances beyond anybody’s control. Not a bad day’s work 🙂
Sincerely Cecil
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COMMENT: Cecil Ristow The prospect of these
new drugs are hopeful, I find that slipping into stage
6 is not what I thought it would be. As my thought
processes are beginning to be quite out of sorts, by
that, i mean i’m getting things wrong in their
syntaxes. I’m just “not getting” a lot of things. Math
Teachers comming up with drugs is just one of them.
I have been gettting a lot of mileage out of
simplifying my life. Trying to stay “connected” is
getting harder. Yesterday, it took me the whole day
to ‘get with the program’ on a trip to the Beach. Oh,
sure ~ LeAnna and I were able to talk about it and
have fun later that evening while puttering with her
sewing stuff. (I like the colors) I can help with ironing
and fetching and conversation. Funny, what triggers
conversation , now. 5 year old level, maybe, but I’m
not 5 ! My interests seem to be flying around and not
settling unless I;m engaged crocheting and working
with colors. That’s just me. Hey, 15 more years of
“lucidity” would be more of a 12 year plus for me.
Right now, I’m all about filling up my “Happy Box”
There it is ! How did I do?
COMMENT:
Prompted by the ludicrous idea that any
Alzheimers Meds research shold be headed up by a
Math Professor from Scotland or anywhere else. I
may be “out of it” but I’m not THAT out of it !
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Meds and meds in general. I think I’ve finally gotten used to mine! No more upsets, cramping and stuff. I’ve been on them for almost 3 years now. Oh, everything is still messed up and progressing as it will, but I can tell they help me cope and although it’s cope on a slope. Coping is good, Sincerely Cecil
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