edited…changed my mind

I don't know of any researchers who are on this Forum. Maybe you can contact the nearest medical research facility to you? Vanderbilt or Emory?

edited...

good idea…at the schools…

Do you write in a journal, or a blog? Or do you have a way to record your thoughts, like a tape recorder or however people do that these days? That might be useful if you aren't already doing it. Lynn

Lynn,

I am no longer capable of organizing things…for any length of time…

I work in spurts…good quality in spurts…not in duration…no endurance left…not even in thought….add in losing the train of thought….and the frustration of having that 'cure for cancer' moment pop into my head…realizing that I have had an 'eureka' moment….and poop….it gone and I know it….or its three days later and I instantly vividly remember that I was supposed to remember something about something from three days ago….

so…my journal is here…there…everywhere….someone else will have to pick up the pieces….so not to lose anything….I write it down, record it on the iphone, jot it down….everywhere….or its lost to eternity…I won't let that happen…it is all I have left….(where are you….author?)

I don't have one list….I have lists of lists of lists….very frustrating

sometimes…by the time I lift my finger to click on something on a computer screen….with finger in mid-air…I forget why or where that finger was headed….thoughts are the same way...

BC, what is your care plan from Dr. Boeve? Have you discussed that yet? Do you know what drugs he has in mind to try for you?

I do not wish to give you false hope. LBD is a degenerative disease. It will get worse. But treatment can help the early stage considerably. I say that our experience with LBD has been 7 years of early stage, and 1 year of advanced stage -- but the advance stage came first!

The drugs have to be tried one at a time. It takes a long time to deal with each symptom. But very good results are possible. (Not guaranteed, but possible.)

Not a cure. But improvement.

I wish you the best.

Jeanne,
I am in my second week of aricept…upped the dose yesterday…so I have increased problems and a body adjusting to new stuff….

Dr. Boeve was headed out of town right after he met with me the first time….and he is either on his way or in Hawaii right now for a conference….the price for working with knowledgable people….the price of working with ignorant people is great also…

I am supposed to get to that point in May or June…I will be making a trip up to MN then, will start in the Research stuff at that time too…

I did meet with him at the caregiver semianr last week and we talked about that…its the NIH regular study that they have on going…I will also start that when I come up there…

I am hoping my wife will be able to come up with me…she just started working…when I was up at the seminar...and we need that also….I don't need care right now…just understanding….

I am coming to the understanding about the outcome…its frustrating about watching my financial house being destroyed around me needlessly while the wheels turn so slow…and to have to wait for possible relief from finding the right meds…its frustrating too…but, I understand….patience….

patience….its coming harder…when you realize that your clock is ticking…the inconvience is temporary for those dealing with you…just another bump….but it is permanent for me….and it is all that counts….staying within the realm of still caring about how that affects others….

I was thinking that if you are ok typing, perhaps typing your thoughts in Word and keeping a document on your own hard drive, the text will be more easily accessible. If you want to use your thoughts for some future purpose, wouldn't it be easier to just write your thoughts in a Word document? Lynn

Lynn,

Blogging sounds like good idea.