I have changed the title of my BLOG to "Sharing my life with Lewy Body Dementia" because that seems to be the correct diagnosis, at least for the present. Since diagnosing any memory effecting neurological disease seems to be like shooting fish in a barrel in the dark, I will go with this diagnosis for the present. I LIKE to be accurate. I guess it's the "Monk" in me. So, I hope it does not cause any of you too much trouble.
Linda and I have enrolled in an American Alzheimer's Association study. We are now part of the EASE program, "Early Alzheimer's Support and Education" program. It is exactly what I need and wanted, contact with others that are dealing with the same issues that I am. It is a group of patients and care givers. Now, I know what you are thinking; He does not have Alzheimer's. True, almost. It seems that the medical field and the Alzheimer's Association are grouping all "Dementia's" under the Alzheimer's banner. I guess this makes sense since the symptoms are similar and the medications are all the same. And, remember what my GP said; "The only way we will know for sure, what you have is to wait until you die, and cut the top of your head open." Sounds drastic, but it is true. I really appreciate his honesty and candor. I have never wanted to be molly coddled. The truth always works for me, even if it is uncomfortable.
In any case, this group is very good for me and I enjoyed our first meeting. There is a safe feeling with the group and an openness that I appreciate. Unlike work groups, there is none of the "territory marking" that goes on in the corporate world. Just honesty, openness, and an honest desire to help each other while asking for help.
I will keep you informed, while keeping the group's privacy in mind, as the program develops. I remember when Linda's Dad had Alzheimer's. There was no Alzheimer's Association, no drugs to extend the quality of life, and no professionals with an advanced degree in Gerontology to help us. Now, Linda and I have a support group made up of family, church, friends, medical professionals, and other with the disease. This is the best way to handle a difficult situation.
Another issue has arisen, I participate in a wonderful international Bible study called "Bible Study Fellowship" (BSF) I am a Group Leader in the program, and as such, I lead 15 men through a specific Bible study each week. Last week, during the "Leaders Meeting", I was leading the leaders through the study questions and I lost my place. I did not know what question was next. I was completely lost and I told them so and asked them which question we were on. They graciously directed me back on track and we picked up where we left off. After that exercise, I told my fellow leaders about my condition. It surprised some of them, our Teaching Leader already knew since I told him before he asked me to be part of the leadership. Their caring attitude, acceptance, and love, was overwhelming. I was concerned, no, afraid is a better description, that my condition would show up and cause me issues. Now I know that, even if it does, it's not a show stopper. That is important to me. I need acceptance, not denial, from those around me. I learned that last Monday night, from the men of my BSF group.