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

1. Label: Eduktr
2. Previous/current occupation(s?): Previous – School principal & teacher
3. Nation, & state if desired: Canada, Saskatchewan
4. Age at tentative diagnosis: 40
5. Year of diagnosis: 2013
6. How long for definitive diagnosis: about 14 months…I did seek a diagnosis when the problems began. The doctors made a diagnosis of dementia in 2009 but I did not pursue the testing as requested.
7. Type of dementia, if known: Lewy Body (probably)
8. Since diagnosis, what one or more action, success, or accomplishment do you take pride in?  I take pride in maintaining a positive attitude and being able to laugh about some of the challenges. I am alone and still live in my home although I am preparing to relocate to a retirement condo. I do not see this as loss but rather a gain…I will be able to benefit from services such as housekeeping and meals so that I can live fully for longer. I try very hard for people to understand the importance of their health and encourage friends to be responsible for their well-being.
9. What do you wish your primary Physician knew about dementia? … about you?  She is not well-versed in LBD but has had previous patients with dementia. She is a good listener and that counts for a lot. Because LBD patients are often sensitive to medications (I am), it would have helped if she knew more about that.
10. What do you wish your specialist Physician knew about dementia? … about you?  My neurologist is not a specialist in dementia and I knew that when I chose to work with her. I attempted to work with our dementia specialist but he did not have any people manners and did not listen. He seemed very old school in his thoughts and incapable of thinking outside what is presented as the “norm” of dementia. I chose to go back to my original neurologist and accept that she is less experienced.
11. What do you wish your family knew about dementia? … about you?  My family has never been neither a close nor open family. We do not communicate feelings and my parents are not hands-on parents. Of course, I wish they would be better advocates and better informed to shoulder this with me, to take a stand for things and keep an eye for me. To be able to take leadership and offer suggestions or help.

Member of Dementia Mentors

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