About
I am a 60-year-old male physician specializing in 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. Hopefully, 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
D. E. Thomas, M.D.
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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.
Hugs,
Donna R
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.
Tamara
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.
http://www.helenemoore.com
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
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
http://www.helenemoore.com
read my blog
Thanks for this blog and putting a face on this problem. Thank you so much.
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!
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,
Imogene
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.
Thank you for messaging on my blog. Sounds like we are following similar routes. Keep in touch.
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.
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
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.
Laine………….could you post your blog’s website for others? Thanks………..David
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.
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.
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?
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??
David
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
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
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!
Good work
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.
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.
Sincerely,
Laura Fisher
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
http://alzheimmers.blogspot.com