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Joined: 12/15/2011
Posts: 18692
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I wish there were some entity that was interested in following my progress as a person. Not as a participant in a drug trial, but to see how I change over time.
I personally find all the changes I have traversed to be thought-provoking.
Perhaps there is something about my life that could be of use to other patients with cogntive impairment.
Iris L.
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Joined: 1/9/2013
Posts: 69
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Do you keep a journal? You are very articulate in your thoughts and comments.
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Joined: 12/15/2011
Posts: 18692
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I journal but I can't put it together. That's why I want someone else to observe me and write. Someone who understands cognitive impairment and possible progression to early dementia. Or not.
Iris L.
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Joined: 11/29/2011
Posts: 7027
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Iris, what do you mean by "put it together."
There seem to be a group of us on these boards and also folks that I met years ago while serving on the Early Stage Advisory Group who have been staying alert for years, even with our diagnosis.
The neuro-psychologist who tested me three times would love to have someone do a case study on me. I know we preach the Best Practices and the benefits of early diagnosis. We know that we are also very proactive in our own treatment. Is that it?
I would like a case study done on all of us. Is there more than that? People vary in the rate of deterioration. Is it merely that? Or, is something else going on?
I'd like to have a Pittsburg compound brain image done on each of us. Is there anything different about our image than a group diagnosed as the same time as we were?
In my area several years ago when I was attempting to form an Early Stage group, there were three of us. One has died; one is in late stage; and then there is me. Why? The easy answer is that I was misdiagnosed. My neuro-psych says he has gone over and over the first test results. He still agrees with his then diagnosis of
AD.
Iris has been battling her problems far longer than I have. I have no doubt that she experienced what she experienced. I just feel that there is so much we have yet to learn about dementia. I strongly feel that it's way overdue to do a case study, or an in-depth review of those of us who are staying in Early Stage much longer than average.
Thoughts?
.
I'dlovetohave thatPittsburg compound brain study done? Part of this long stay maybe attrit
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Joined: 11/29/2011
Posts: 7027
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Iris, what do you mean by "put it together."
There seem to be a group of us on these boards and also folks that I met years ago while serving on the Early Stage Advisory Group who have been staying alert for years, even with our diagnosis.
The neuro-psychologist who tested me three times would love to have someone do a case study on me. I know we preach the Best Practices and the benefits of early diagnosis. We know that we are also very proactive in our own treatment. Is that it?
I would like a case study done on all of us. Is there more than that? People vary in the rate of deterioration. Is it merely that? Or, is something else going on?
I'd like to have a Pittsburg compound brain image done on each of us. Is there anything different about our image than a group diagnosed as the same time as we were?
In my area several years ago when I was attempting to form an Early Stage group, there were three of us. One has died; one is in late stage; and then there is me. Why? The easy answer is that I was misdiagnosed. My neuro-psych says he has gone over and over the first test results. He still agrees with his then diagnosis of
AD.
Iris has been battling her problems far longer than I have. I have no doubt that she experienced what she experienced. I just feel that there is so much we have yet to learn about dementia. I strongly feel that it's way overdue to do a case study, or an in-depth review of those of us who are staying in Early Stage much longer than average.
Thoughts?
.
I'dlovetohave thatPittsburg compound brain study
done? Part of this long stay maybe attrit
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Joined: 12/15/2011
Posts: 18692
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Mimi S. wrote:Iris, what do you mean by "put it together."
. I just feel that there is so much we have yet to learn about dementia. I strongly feel that it's way overdue to do a case study, or an in-depth review of those of us who are staying in Early Stage much longer than average.
Yes, Mim, this is what I was trying to say.
I believe stress and overstimulation are huge proponents of progression.
Avoiding stress and overstimulation from other people are major tactics in my personal treatment against progression. Can this tactic work for others?
I wish a knowledgeable professional could observe me and you and others and give organized input on this.
Too many patients are diagnosed too late for our treatments to make a difference. Most studies are focused on drugs, not on lifestyles, what we call Best Practices.
Iris L.
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Joined: 11/29/2011
Posts: 7027
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We agree but nobody listens to us. I bang my head and say: something is going on. Please check it out.
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