Thursday, March 30, 2017


People with LBD normally deal with Hallucinations.  It is a normal symptom of this disease.  I have had Hallucinations, off and on, since the beginning.   I have seen horses in my back yard, men crossing the freeway in heavy traffic, cars ready to hit us, all sorts of animals around me, and recently a man poking in our patio window.  I have also experienced vocal Hallucinations where I hear voices that I recognize and do not recognize, calling my name or asking me questions.  Additionally, I still experience touch Hallucinations where I feel someone or something walking on me in the bed or someone touching y shoulder to back when I am alone in the bed.

Some of these have been frightening and some not.  I have recently been startled by men I see, approaching me, when I am walking the dog in the day or the evening.   That is probably because of the progression of the disease.

I know other LBD patients that have similar Hallucinations.  Again, some frightening and some just things they see.   The truth is, LBD is a disease that has Ups and Downs and Hallucinations are part of that.  It is not abnormal for a person's Hallucinations to stop for a while and then return with a vengeance!   These occurrences are normal!  So, try to deal with them like the other issues of our disease.  I understand it is difficult, especially if your Hallucinations are unnerving or frightening.

I actually have had a Hallucination that scared me so much, I made a special appointment with my Psychologist to discuss it.   I have recommended before having a complete "Team" for your care including a Psychologist.  This is a disease that requires a complete team approach.  Trying to understand your experiences with LBD with only a GP or Neurologist is handicapping yourself, in my opinion.  Yes, I understand there are financial limitations, but if you can, build a team.

Hang in there.  Try to find a support group in your area. Look into the local Alzheimer's Association, a local hospital, or even a local College or University, for a support group.  The more support you have, the better your journey and the easier your family will be able to deal with the disease also.

Again, this is my advice based on my journey, so far.   I am not a medical professional of any type.  


  1. Thank you my friend. Like you I have had them from the beginning but they came one a night.. now two three a night. I see my doctor at Mass General last week of April. I will let you know how I make out

  2. I am amazed that our LBD paths are so similar. I'm the caregiver, married 55 years to my PD-LBD spouse. Just tonight I was feeling bad for the extra Clonazepam the doc/psychiatrist has prescribed. Yet, I'm so grateful for it--because Joe can sleep--and so can I. Thank you for your blog. God bless you. Maggie