We often believe that medical specialists have all the answers about health and wellness. That just is not so. All truth is not yet known. Especially with strange diseases like the Parkinson Plus diseases that may look initially like typical Parkinson Disease and turn out to be cruel, weird, fast moving, life threatening diseases. Lewy Body Dementia often called Parkinson Disease with Dementia, or Dementia with Lewy Bodies is one of those diseases. It is not well known by all doctors, and not always well managed by the best of physicians.
I have worked with wives who could not get answers or help from their attending neurologist. They did not get good resolution to some complicated symptoms until they elected to take their loved one to a different doctor. Someday, this disease will be well understood and better managed. Until that time, do not feel guilty seeking answers from major health centers like Mayo Clinic, Cleveland Clinic, neurology centers in big cities, or through on-line medical sources like Web MD or Lewy Body Dementia Association.
After all, you as the caregiver are ultimately responsible for sifting through the gobbledy-gook and the helpful, accurate information to determine what is best for your loved one. You have a right to demand excellence in your medical care. The quality of your loved one's life depends on it.
Have a great day and keep smiling. Judy
I frequently speak to various caregiver groups, and would love to see as many people as possible. Come share your stories with me and the rest of the group.
Thank you so much for sharing it with LBDA!... -- Angela Taylor - Director of Programs