I am a 64-year-old male retired psychiatric physician with subspecialties in addiction psychiatry and forensic psychiatry. I was diagnosed with Lewy Body Disease (LBD) in October 2007. Much of the information on LBD and dementia is provided by the caregivers and the difficulties encountered in caring for us. I would like to promote further education and research for this disease as well as to share my experiences, thoughts, issues, reactions and feelings with caregivers and to those who also suffer from LBD and other dementias. I hope that this blog will provide another point of view — first-hand information from a victim of LBD.

I dedicate this blog to my lovely wife, Pamela. Her continuing daily love and support keep me going and she has helped bring me to this positive turning point in my life. I could not do it without her. Thank you Sweetheart!

I can do all things through Him who strengthens me“. Philippians 4:13

DT, M.D.


Since 2007, my clinical symptoms of LBD have slowly and consistently improved. I began to do a variety of brain exercises including logic puzzles, math puzzles, word finding puzzles, watching TV and movies, and reading. My neurologist encouraged me to take a foreign language (Spanish). I enrolled in a local university, which provides free tuition to senior citizens who receive social security benefits. In addition to Spanish, I registered for other classes, which piqued my interest. Initially, I felt apprehensive and unsure of myself. However, I gave it my all. As of this post, I continue to take classes.

In 2012, the neurologist repeated the SPECT scan of my brain. The scan showed normal areas that once were consistent with dementia. Some abnormal areas remain. I have completed two neuropsychological test batteries, which show all ranges of functioning ranging between normal and superior. Additionally, the neurologist now tells me that I no longer have clinical dementia. He wanted to discontinue the Aricept and Namenda as of December 2012. However, I opted to continue taking them for my own peace of mind. At the end of my last office visit, he stated, “You can now work and do anything you want to do.”

What great news! The Dr. is baffled and has trouble trying to explain why there has been a dramatic change for the better. He removed my diagnosis of LBD from my medical record. Nonetheless, I am still at a very high risk of relapsing into dementia based upon the severity of my prior symptoms and clinical picture.

I am now enjoying retirement. Life has changed for the better. I now have hopes and am setting new goals for the rest of my life with Pam and Chad. Life now seems fair. I will remain optimistic and plan to live my life normally.




36 Responses

  1. So glad to see your blog. Just got your message about the blog posted to our site. You will be getting some email, I am sure.

    Give Pam a big hug for me. She is going to be able to use a few as time goes on.

    I hope to be around again and keep track.


    Donna R

  2. Dr. David,
    Thank you so much for being willing to share with us about LBD and Alzheimer’s from your standpoint. This is greatly needed and appreciated. I know how hard it will sometimes be for Pamela….her willingness to share you with us in this way is a wonderful gift. She must truly be an amazing woman.

    My beautiful mother began having problems about the time she was 56 or 57. She was fiercely independent and protective of her family so she kept much of this to herself until she could no longer hide it. It was 5-6 years before we were given the diagnosis of LBD. Mom passed away last year at the age of 65.

    I have a background in health care and had never heard of it so I began to research, talk and write about it.

    As a writer I often blog on my website at http://www.rockymountainwriter.com about Lewy and what our family went through. I know that what I write is emotionally hard for my family at times and that is why I admire Pamela for supporting you in your endeavor.

    You and Pamela are in my thoughts and prayers as you travel this path.

  3. I’m very happy to have found your website.
    I, too, in my small way are determined to help caregivers. I have started
    Adopt A Caregiver and am writing about it at my website.
    word of mouth is potent, and my words are spreading, slowly but surely.
    I have added your website to my favorite list.
    Keep love and kisses in your life. Helene

  4. Dear David,
    Happy Birthday. Enjoy every day. Each day will have something special. Make magical moments. That’s what I tried to do ..back in the 90’s ..
    And to Pam, my thoughts are with you. I would like to suggest you write in a journal. Savor your own memories, and get out you revolving emotions.
    Sometimes I wonder why these things happen to good people, guess it’s not up to us.
    Keep love and kisses in your life. Helene
    read my blog

  5. Thanks for this blog and putting a face on this problem. Thank you so much.

  6. David Thomas,

    Thank you for your encouraging comment on my blog. i’m so glad to’ve have found you and look forward to reading your blog. What a terrific and inspiring place you’ve got here!

  7. Hi David,

    You are doing a wonderful service with your blog.
    It is doubly appreciated by those of us who have Loved
    Ones with LBD.

    Trying to formulate words is difficult in most LBD patients, and to have taken up this writing service to help others is quite remarkable.

    Also, your wife Pamela is “something else.” She has her hands full, but I can sense that she is a positive thinker, and is putting that quality to good use by encouraging you with your writing. Behind a good man is a fine woman. (Well, something like that 🙂 )

    Love a lot, it makes the heart happy,
    P.S I “ain’t” no writer, Although I have written a 360 page book about, and for, my family, otherwise I am big old dumb happy me. 🙂

  8. Thank you for messaging on my blog. Sounds like we are following similar routes. Keep in touch.

  9. My husband of 59 years has Alzheimer’s and was diagnosed five years ago. It has now progressed to severe memory loss, but I am so grateful that we are able to manage his illness at home. Grateful also for his ability to care for his own personal needs. He has three personalities: himself, Mr. Hyde who is married but not to me, and Buddy about 12 years of age who is in total charge of HIS house which he claims was given to him by his father, and believes it’s the house where he was born. It’s a daily ride on the rollercoaster. Ann Romick @ http://www.aromick.wordpress.com — Living With Alzheimers.

  10. P. S. I do so admire your courage and sharing with the world. And as a caregiver, Pam has my deep admiration. No one understands a caregiver like another caregiver. A joyful New Year to all. Ann

  11. Thanks for the comment on my Lewy Blog, otherwise I may not have found you and yours!
    Every chance I get I am going to read through your entries.
    Please know that you are not only doing yourself and your family a great service by entering your daily trials, but you could be profoundly affecting others and their path with Lewy Body. You are courageous. Stay strong, and use humor every chance you get. Sometimes it’s all we have in fighting Lewy.

  12. Glad to find your blog. My mother died of LBD in 1999 after 10 years. I’ve written about her on my blog (http://dovenestedtowers.blogspot.com) as well as information on an LBD benefit event I’m currently in the very early stages of planning with the soprano Ilana Davidson and the LBDA. Best of luck, and thanks for maintaining this resource.

  13. David, it is an honor to hear from you on my blog, http://www.kathycollardmiller.blogspot.com. My husband, Larry, has read your own blog and your posts on the Lewy Body forum and told me about you. What help you can give to many because of your disease but I’m also sad that you are suffering from this horrible disease. So thank you for your “work” and thank you for writing your words of encouragement on my blog.

  14. I cdnuolt blveiee taht I cluod aulaclty uesdnatnrd waht I was rdanieg. The phaonmneal pweor of the hmuan mind. Aoccd rnig to rscheearch at Cmabrigde Uinervtisy, it deosn’t mttaer in waht oredr the ltteers in a wrod are, the olny iprmoatnt tihng is taht the frist and lsat ltteer be in the rghit pclae. The rset can be a taotl mses and you can sitll raed it wouthit a porbelm. Tihs is bcuseae the huamn mnid deos not raed ervey lteter by istlef, but the wrod as a wlohe. Amzanig huh?

  15. My husband of 51 years, John, was diagnosed in Aug.,2006 w/ LBD with Parkinson’s symptons. He also has CRVO (Central Retinal Vein Occlusions) in both eyes. We are told, by the medical professionals, that the two/three physical/mental issues are not related. That is hard to believe. His behaviors are getting harder to deal w/ daily. I find myself recacting instead of responding and that only adds to his anxiety.

    Any words of wisdom are welcomed.

    • Jackie……..I had a retinal tear after I was diagnosed with LBD but they didn’t think they were related. I’ve not read anything to the contrary. But could it be a possibility? Have they really studied that many eyes of LBD patients??


    • Jackie I understand completely about you react instead of respond. I did the same thing and still do from time to time…but so much better.My doctors say I am grieving. I get up each day praying I am patient and loving and kind. My husband deserves that from me. I have had to slow myself to meet his slowness….this has helped. I live today like its his last and that surely helps me respond to him and not react. He cannot help he is like he is. Doctor feels he got it from the rotenone plant pesticide that he started using in 2004. It was taken off the market by EPA 3/2007…causes parkinson and lewy body. We were buying it and using it still up thru 2010. Govt did not post report for immediate release of its dangers until 2/11…and still we didnt know about the rotenone until 10/13 when a doctor said he had parkinson disease and I saw all the links of rotenone. It was recommended by our county extension office as being safe and organic. Shame on the EPA for allowing it on the market for 13 yrs after they new this info. We are trying to accept the new us and trying to not be so angry on how it probably happened and accept that it did happen. I love him…and am more patient. Felt I was in shock for 3 yrs. He needs me to be strong…loving…patient…kind…reassuring…and sometimes I think most of all…..I love him just the way he is….as he knows me nor him can put him back the way he used to be. Sharp…happy….independent. we have finally accepted the new us and are finding a different happiness. 🙂

  16. Hello Dr. Thomas,
    My mother Ruth was diagnosed with LBD in 2005. She and my dad retired to Lenox, MA in 2004 so it has not been the retirement they would have hoped for but there is still much love to go around. My mother also had Caritaconus for most of her life which 3 eye operations helped remedy to a point. My father has wondered if there is a connection. Their neurologist has neither confirmed nor refuted the possibility. Would you be open to being interviewed for a documentary I am doing on LBD?
    Take care,
    Phil Gardiner

  17. Hi David,

    Can you please tell me if you are still having trouble with chocking on your own saliva. (I just read a past post of yours.) My Mom, who is unable to tell me what is bothering her, started something new a few weeks ago. She starts coughing and choking a little when she awakens from sleep. It usually happens in the evening and at night. Thanks very much. I hope you are feeling well. Best, Norma

  18. My husband and I are writing a book of stories submitted by people who have or are caring for loved ones with Alzheimer’s or dementia. Can you review this “request for stories” and publish same on your site. Many thanks, and any contributor whose story we use will receive a free copy of the book. We are looking for 200 stories– so thanks in advance for your consideration.

    After taking care of my mother, my husband and I are compiling stories for a book that we are writing for family, friends and caregivers of people with Alzheimer’s and dementia.

    While it’s a very sad disease, and life is tough watching someone you love decline, there are so many funny moments and things that come out of my mom’s mouth. And other folks we’ve talked with say the same thing.

    So to bring some comic relief to our daily grinds with our dementia-stricken parents, family and friends, we’re looking for funny stories and anecdotes for our book. If we choose one or more of your stories, we’ll send you a free copy of the book upon publication.

    Feel free to send as many humorous stories as you like, to Nadine Rudner: alzbook@aol.com

    Please include your full name and return email address so that we can contact you. Also, feel free to pass this notice to anyone you know who works with or cares for people with dementia and Alzheimer’s. Thankyou!

  19. Good work

  20. Don R has just entered an Assisted Living, The Atrium in Danvers, MA. He has Parkinson’s and Lewy Body. Our neighbors have been angels, even passers bye have helped. Expressing their concern with concrete help, we couldn’t ask for a more responsive community than ours. To care for him at home was no longer possible. Perhaps I can read to him some of the comments folks make here. All the best to comment makers.

  21. Dear Dr. Thomas,

    Have you tried the coconut oil Dr. Mary Newport has described as a miracle treatment for her husband? Do you take fish oil (three or more caps per day)? Do you take testosterone replacement (skin gel)? Do you take selegiline or rasagiline? What if any vitamins and other supplements do you take? It is not completely clear to me how you were diagnosed. Was it based on an MRI coupled with some behavioral and subjective changes?
    My father died in his eighties of combined LBD and Alzheimer’s disease and I am trying not to follow his example.


    Laura Fisher

  22. Hi Dr Thomas,

    Thanks for finding my blog. I too am a psychiatrist, who was also a caregiver. I am still trying to understand the progression of increased awareness of Alzheimer’s, compared to LBD. My mother was diangosed in 1979, then in 1980 millions were poured into research, (ALzheimer’s Assoc also incorporated) but still no one really heard of it. (Depsite being dicovered in 1908) Then came Alzheimer’s awarness week in 1982 per President Reagan, by 1990 more awarness came when the meds came and it became a household word. What amazes me it that awareness of LBD is where things were 25 years ago for AD, it is growing painstakingly slow. I graduated in 1988 and finished residency in 1992, I heard very little to nothing about LBD. In fact when I took psych boards in 1993 I am not sure if there were even any questions on it. Unfortunatly looking into the specialties it seems as if neurology is the only and most established knowlegable specialty. as would be expected. Take a look as Kaplan and Saddock’s Synopsis of Psychiatry and tell me how much there is not in there regarding LBD.There is a long way to go, but you are on the right track. Thanks for finding me. You are an honorable doc and a good human being.
    Joe Sivak MD

  23. Hi,
    I am glad to find your blog. I have frontotemporal dementia which was diagnosed last year. I went to see another FTD research doctor when we had moved back to our home state to be near family. I have some Lewy Body Dementia symptoms: hallucinations and nightmares in which I sometimes talk or get up at the end of the dream. I also have very vivid stressful dreams. They are so vivid that often I feel like I have been working a stressful job all night and have to recover from it during the day. I would really like to communicate with you further. Please contact me. I am also a member of the Lewy Body Demenita support group.

  24. I heard mind quizzes, brain teasers and other consuming intellectual activities improve your mind skills and reduce the risks of brain diseases. Here is a website I use to play multiplayer online free brain games – http://www.braindava.com; it has different types of multiplayer mind games like trivia, scrabble, arithmetic and quote quizzes, etc. It enhances memory, speed of thinking, imagination, speed of reaction, vocabulary, etc.

  25. Hi Dave,
    I am so sorry to hear about your condition. My prayers are with you and your wonderful wife. Were you in Pittsburgh about 2 months ago? Some of our classmates thought it was you being interviewed on the evening news and you had said that you were from Erie. Mary Sue has been looking for you, too. We are having our 45th class reunion. I know it is a year away, but hopefully you can try to make it. I need an address if you don’t mind giving it to me, so we can keep our records up to date. Email me! Would love to hear from you. Again, my thought and prayers are with you.
    Gloria “Barney” Barnhart Cottom

  26. Dr. Thomas,

    Just wanted to say hi. I am glad to see you are keeping up this blog, truly admirable. Please know that my thoughts and prayers are with you. I would like to express my appreciation again for showing me the ropes when I was a brand-new psychiatrist at NSHospital some five years ago. Do e-mail me so we can catch up.


  27. Hi Dave,
    It looks like the blog ended about a year ago and I am wondering what has happened in the interim. I’m taking care of my Mom with Lewy Body and working full time. We are going through a tough sleep depravation phase, and I’ve hired a college student to stay with Mom during the day so I can work. Thanks for putting together so much information, it’ll take me some time to get through it! Take care, Arlene

  28. im so happy to have found this blog…my mother has parkinsons and lewy body she is 65 years old. i am 26 years old and the baby of the family. i am my mothers care giver…it is not an easy task to complete on a daily basis. this disease is so heart breaking and is rapid. my mother just gets worse and worse as each day passes. im going through my angry stage on why is this happening and why my mom why my family?…to lose your mind and have to deal with the tremors and anxiety of parkinsons and lewy body is a horrible disease to live with. my mom has many haluciantions also the confusion is the worst part. this is by far the most hear breaking saddest thing i have seen happen to my mother and my family. my mother was a spit fire she would be up so early cook clean laundry she never stopped. i want those days back i cant even have a normal conversation with my mother. she is somewhere else. i was looking into a therapist or someone who can explain to me how to not get frustrated with my mother and how to cope with this. to all the families and care givers and to the persons suffering with this illness my heart and prayers go out to you. all we can do is stay positive and try to make the best out of the time we have with our loved ones…thanks for listening to my venting …–Amanda

  29. Hi David! I am glad to know you were doing so much better last year. How are you doing now? We were always so thankful for you insights on this destructive and annoying illness. Would you write to us on the LBD caregivers group and let us know how are things going for you and Pam nowadays? We would love to hear from you, especially the people who are still struggling to be good caregivers. Love and hugs,

  30. Hi,
    My name is Jackie. Below is a link of a press release about ActivCare Living a dementia and Alzheimer’s care company has opened another location in Southern California. Thought since you blog about this stuff, that it may interest you. If so, we’d love for you to share it. If you do share it, let us know, so we can share the share!



    ActivCare Living

  31. Dear David, If you remember your time in Hawthorne many years
    ago, I’d like to hear from you.

  32. Dear David, It’s good to hear from you. How are you doing? I remember we exchanged a couple of messages in Spanish when you mentioned you would like to learn a little more. What are you doing these days? Are you still knitting? Would love to hear from you again!
    Raquel Asay Young

  33. Oh David – I just popped in from a link from my site, SandwichINK, from way back when, hoping for an update on you and your family. HOORAY – what AWESOME GOOD NEWS. Praying your good health continues and that you and your family are doing great! Take care, Kaye 🙂

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