Pat,

Yes, you are right to be frustrated with the neurologist and Jane, the wife!

OH = orthostatic hypotension. Blood pressure drops upon standing (from a seated position) or upon sitting up (from a prone position). It occurs in about 40% of LBD cases. Besides OH, one possible LBD symptom is unexplained loss of consciousness. Both of these are known symptoms of LBD and, in my layperson opinion, nothing to go to the ER about.

It seems that the neurologist was sending mixed signals -- hospice is a very different route than going to the ER for a bunch of tests. Jane needs to decide immediately which route she prefers for her husband in the future.

Since this neurologist has no understanding of LBD, once Jane has decided that hospice is the best route, I'd get the hospice referral from the primary care physicians, assuming that MD has a clue.

Robin

Kate,
I am posting this a second time, because I do not see my original post on this thread yet.
Don't worry. I understand that this forum is a private place for sharing. I will not include any private information from here in my upcoming book on Early Stage LBD Caregiving.
I do, however, discuss in the book how to handle difficult situations on forums such as this. For example, what can you do when you realize that you are reading too much too soon in your journey, and it is causing stress for you? Or what can you do if someone responds negatively or aggressively toward you? Early stagers may benefit from knowing that this sometimes happens and how to handle it.
I hope this addresses your concerns.
Pat

Pat,

Please understand that it is a bit unsettling to read that there is an upcoming book written,at least in part, from information gleaned from our forum. Sometime even situational descriptions can become identifiers.

Would it be possible for a few forum members to review your manuscript before you go any further?

Kate

Robin, it just sounds like the neurologist is mixed up, never mind the mixed messages he is sending. Why would you send someone you consider ready for hospice to an ER and order lots of tests? Huh? I guess we are not seeing the whole picture, but based on what's been stated here, I sure would change doctors!

Jeanne, I think the neurologist is not current about LBD and thus has made several mistakes. Wonder how common this is? Too common, I would suspect.

Kate, my book is about me and our family and how we have attempted to enhance and thus extend the best of days of early stage LBD in our home. There is no "information" gleaned from this forum other than those tips and strategies which I have listed on the forum myself.
I have used a list of medicines to avoid with LBD, in part from the lbda website--not the forum, but I used other sources as well.
My book draft is in the hands of folks in leadership at lbda. It is also in the hands of John's neurologist, who is writing the foreword for it and who serves on the lbda Board of Directors. I have also discussed in some detail what it includes with this forum's moderator.
I hope this puts you more at ease, Kate. I will not violate your privacy.

My goal is singular--to help people like myself who are early stage LBD caregivers, who have very few resources. There was no book about the Early Stage for me. I hope to change that for those who come after me.
Pat