Every day is a great day for Harry Lewis. “He’s so plugged into life that he wakes up singing 'You Are My Sunshine,'” says his wife Sue. “He tells me ‘there’s nothing wrong with me – I feel great!’” she says.
It wasn’t always this way. When he was diagnosed with Alzheimer’s several years ago, Harry was anxious and depressed. When his doctors prescribed an antipsychotic medicine to control his hallucinations, he started having seizures. There weren't any great days in the Lewis household back then.
Once Harry’s diagnosis was changed to dementia with Lewy bodies (DLB), Sue says, she was able to educate herself and work with his doctors to improve their quality of life. Although there’s no treatment to stop progression of DLB, the medicines Harry takes have reduced his symptoms considerably.
Angela Taylor
“Getting the right diagnosis and treating the many LBD symptoms correctly can make a significant difference in the quality of life of both the patient and his primary caregiver,” says Angela Taylor, board member and chair of the Science Committee for the Lewy Body Dementia Association. Along with Sue Lewis and Joseph Friedman, M.D., she talks about why an accurate diagnosis is so important in Part 3 of the Tangled Neuron series on Lewy body dementia.
In addition to the right diagnosis and treatments, Sue thinks a good attitude is the key to living with the disease. She focuses on the positive, and tries not to give in to what she sees as a common and deep-seated fear of dementia.
“As I’ve grown as a caregiver and thrived through dementia, we’ve lost that mask - that bored look Harry used to have on his face,” she says. “I’ve refused to let him be ‘unplugged.’ When he was mobile, I took him to concerts and potluck suppers, and everyone helped entertain him. He told everyone dementia made him a better dancer - he lost his inhibition! Even now that he’s in a wheelchair, we’ve stayed social. And I bought two guitars - it’s not pretty, but we play the blues.”
Despite her positive attitude, Sue finds the fluctuations in Harry’s symptoms maddening, and she worries about how they would handle any change in the environment and routines she's created for her husband. “I live with the fear that everything can crumble every day,” she says. “What if our house burns down? I can’t go live in a motel with Harry. What if we need a new roof or a new furnace? Harry couldn’t deal with that right now.”
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Posted by: David Thomas | December 05, 2008 at 11:58 AM
My husband was diagnosed at 58 with AD. Just a few months ago his new dr. told me that it is more likely that he has Lewy Body Dementia. I asked what the difference was and she told me to look it up on the internet. Since I did so much research on AD, quite frankly I'm pretty worn out. He has been bed bound for about 4 months now. He can no longer walk and hasn't talked in several years. I will keep on looking, but can anyone give me any information on the differences?? Jerry was also treated with various drugs for agitation during the last few years which did not seem to help, quite the reverse. He is on virtually no meds right now. Thanks.
Posted by: kay Bogart | January 13, 2009 at 07:07 AM
Kay,
I'm sorry you and your husband are going through this. I wrote a bit about the symptoms of and treatment for Lewy body dementia in the reports linked to in this post. You might also contact the Lewy Body Dementia Association (www.lbda.org)for detailed information and to find out if there are support groups in your area.
Posted by: Mona Johnson | January 13, 2009 at 07:14 AM
My husband was diagnosed with Lewy Body Disease two years ago. He has stopped driving the past year and has started not remembering where he is in the home. I still work a couple days a week but need a caregiver. Would he be better at a senior care facility during the day or have a caregiver in the home.
thanks.
Posted by: Carolyn L. Cooper-Brown | January 14, 2009 at 01:56 PM
Hi Carolyn,
I would think the decision of facility-based care vs. home-based is very individual. Does your doctor have an opinion on this? You might try talking with the Lewy Body Dementia Association (www.lbda.org) to see if they can offer advice. They have online support groups where other caregivers might be able to tell you about their experiences with different types of care. They may also have a local support group in your area.
I hope this is helpful, and that the option you choose works out well for you.
Mona
Posted by: Mona Johnson | January 17, 2009 at 07:32 AM
My husband was officially diagnosed with LBD a year ago. He also has congestive heart disease, diabetes, and is on 24/7 oxygen. I also work two days a week. He attends Day care twice a week and I find that those two days give him the social activity that he needs. At home he generally just sleeps in his chair no matter what activity I try to do with him.
Muriel
Posted by: Muriel Arms | February 03, 2009 at 04:25 PM
My mom has had demetia for severalyears. My wife and I suspected early it was not classic alzheimers. She had some memory issues but her main symptom was wild and detailed delusions. So convincing we had to verify things to make sure they were not real. Soon they got extremely bizzar and most were paranoid in context. We started to suspect DLB and were eventualy sure. She eventualy was hospitalized for phycotic delusions. The facility does not seem to be able to explain to me why she does not have LBD. They do not seem interested in my opinion which seems odd for I have been monitoring her for 5 years. How does one find the right Dr.?
Posted by: Steve Davis | March 25, 2009 at 09:52 PM
Steve,
I'm sorry to hear about your mom. I suggest you contact the Lewy Body Dementia Association for assistance and a referral (www.lbda.org).
Take care,
Mona
Posted by: Mona Johnson | March 30, 2009 at 08:37 AM