LIVE LIFE TO THE FULLEST
LIKE NEVER BEFORE
Visual hallucinations are one of the most difficult things that I encounter in living with Lewy body dementia (LBD). The flood of emotions that occur are overwhelming at best. I even have one friend who has visual hallucinations almost 24/7 and many days in a row.
Approximately, one week ago, I experienced my first visual hallucination in over two years. Previously, I had seen small children, small animals, gold spots on my legs and wavy trim around the door. These are the type things that Dr. Dennis Dixon of the Mayo Clinic has documented in a one minute video. On all but one of those times, my wife could calm me by telling me, they were not there. On the other one, I challenged her; and, she had to get a flashlight and show me, they were not there.
My personality has changed recently. I have always been a very serious person. I knew how to laugh and enjoy living; but, I did it in a serious manner. Suddenly, I started a giggly laughing when she and I would be talking in the mornings. She had told me that she wished, she could video me so that she would have it latter. After this recent hallucination, she said, “I wished I had “taken a video of this”. I told her that it was so real to me and was etched in my mind so deeply that I could reenact it. It is still etched in my brain today, ten days latter. I cannot look at the video and not start crying. I can feel my blood pressure rising and my heart rate racing. The hallucination occurred just before, she was about to put eye drops in my eyes.
We did this within one hour of the hallucination. After my wife viewed the video, she said, “that is almost exactly like what happened”. The one thing that she noticed was, “you did not laugh as much in the video as you did when the hallucination was occurring”. I noticed one other difference. In the video, I did not challenge her when she said that the gold spots were not on the ceiling. When the hallucination occurred, I challenged her the first time. When she told me the second time that she still did not see them, I was able to accept what she was saying.
At the time of my diagnosis in June 2012, I told my family that I would be totally transparent with them and others because I wanted people to have a better understanding about LBD and other dementia. I have shared a link below to the video with the hope that it will help persons living with dementia. I want them to have a better understanding of what they might experience is real. Also, I would hope that it would beneficial to persons that are helping the person with dementia have a better understanding of what it is like when this occurs. I share this with the FULL approval of my entire immediate family. I have shown it to two of my friends, a nurse friend of many years who is the lead nurse at a Hospice, a friend who is living with Alzheimer’s, a care partner and the administrator and marketing director at the Memory Care Community that I visited on Monday.
WARNING: WATCHING THIS VIDEO MIGHT BE DISTURBING.
Video of Robert Bowles – Visual Hallucination – February 15, 2015
©2015 Robert Bowles
Flo Fournier on 02/25/2015 4:16pm
Bless you and yor wife. I had never heard of LBD until my husband was diagnosed with Parkenson’s, it took six months before his LBD diagnosis. He died in March. I pray for you daily.
Robert Bowles on 02/25/2015 8:36pm
Thank your for your comments. I will be praying for you.
Susan Maroulis on 02/25/2015 4:25pm
i hate to see your anguish. But I’m glad you shared your experience. The laughing part was interesting- that does not happen to me. I don’t know how other people experience their hallucinations- I think you have hit on a idea- that we should share & look for commonalities.
Robert Bowles on 02/25/2015 8:38pm
Susan, I told my family on the day that I was diagnosed in June 2012 that I would be totally transparent and tell the good, the bad and the ugly. I told them that as pharmacist, I would die trying to educate patients, care partners and doctors about medication sensitivity in LBD. Thanks for your love and support. Love you girl.
Sharon on 02/25/2015 5:21pm
I am still downloading the video but wanted to thank you in advance for helping and teaching those of us who are learning and working with people with this disease. God bless you and your wife.
Robert Bowles on 02/25/2015 8:41pm
Sharon, thank you for your kind comments
Mike Good on 02/25/2015 6:55pm
Thanks Robert for having the courage to share. I can’t begin to imagine what it must feel like to not be able to trust your sight or smell.
Robert Bowles on 02/25/2015 8:40pm
Mike, thanks for your comments. I have great respect for the work that you are doing. I visited a Senior Living and Memory Care place this week. I wrote on my blog about the visit. It was incredible. Please check it out on this blog.
Darren Lewis on 02/26/2015 2:06pm
Hi Robert my mum has been seeing things now for 12weeks she got taken to hospital today under the section 2 act i didn’t know what was going on with her now seeing this video of you it looks like she has got LBD
Robert Bowles on 02/26/2015 6:42pm
Darren, If she does, please private message me on Facebook. I would like to talk with you about some of my insights on medication issues. My neurologist is wanting to write an article about all the ones I have experienced.
Teepa Snow at http://teepasnow.com/ on 02/28/2015 2:15pm
Robert – Gold Spots are hard enough… you are so smart – you know they aren’t there – the ‘bad’ stuff must be just horrible to tolerate! That ‘giggling’ is probably your emergency autonomic reaction – amygdala – activity – anxiety and distress – your thinking brain KNOWS it can;t be seeing what your visual cortex is saying is there… Many thanks for sharing what you have gone thru…
Robert Bowles on 02/28/2015 6:07pm
Teep, thanks for your insights
Janette on 02/28/2015 7:22pm
Thank you for being so brave and sharing this video. Education people not familiar with Lewy Body dementia is key to better understanding and treatment. God bless you and your wife.
Robert Bowles on 03/01/2015 4:08pm
Thank you for your kind comments
Dawn Risner LPN. CDP. on 03/01/2015 7:01am
Thank you for sharing It’s brave souls like you that help healthcare workers like myself. Better understand this disease.
Robert Bowles on 03/01/2015 4:09pm
Thank you for your encouragement
Marija Popovic on 08/02/2015 10:40am
When my father was diagnosed with LBD in 2013 I had never heard of it and my experience tells me most medical people don’t have much knowledge either. My father had many of what you describe and I can’t even express his distress and my feelings of anguish. I too wish you and your family many good days.
((Originally posted 2015 February 25 at lbdlivingbeyonddiagnosis))
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