Life with an Early Lewy Body Dementia Diagnosis: One Wife’s Story

Armed with information and support, one couple is successfully navigating life with Lewy body dementia.

7:00 AM

Author | Annette Kaufman

Picture of Lewy Body Dementia patient Barry and his wife Annette

Sometimes I tell my husband, "We have three people living with us now: you, me and Lewy."

You see, in the fall of 2008 at age 68, my husband began exhibiting signs of confusion while driving.

Luckily in January of 2009, my daughter, a neuropsychologist, was able to get an appointment for him with neurologist, Dr. Judith L. Heidebrink. The first telling thing Dr. Heidebrink noticed was stiffness in his gait. While she did not speak the words to us at that time, we later learned that she already suspected Lewy Body Dementia (LBD). After some testing, she did indicate that he had Parkinsonism, a condition marked by the movement abnormalities seen in Parkinson's disease (PD), such as tremor, slow movement, impaired speech or muscle stiffness.

After a couple more appointments we heard the words "probable Lewy Body Dementia." We learned that a definite diagnosis can only be made post mortem.  I began reading everything I could find about the disease. 

I learned LBD is a brain disease that impairs thinking and often mobility. A person with LBD may experience cognitive difficulties, visual hallucinations, day-to-day fluctuations in abilities, stiffness and slowness of movement, tremors, poor balance and falls, fainting or other periods of unresponsiveness and acting out dreams.

Every patient is different, and most patients do not have all of the symptoms.

Although some might find the LBD diagnosis devastating, my daughter and I found it comforting to have the doctor validate the changes we were seeing in him and to have a name for what was happening.

Searching for answers

Few people have heard of LBD, but it is now the third most common form of dementia. It is often misdiagnosed, and I have heard many stories from people whose loved ones had LBD that went undiagnosed for years. We were fortunate to receive a referral to Dr. Heidebrink who recognized what was happening right away.

Fortunately, Barry's condition is progressing very slowly. But life with LBD — for both Barry and me — has definitely been a learning experience. With this in mind, there are some tips we've learned along the way I can share.

Advice for LBD caregivers

  • Join a support group. I have attended the Ann Arbor Area LBD Support Group (a Rinne LBD Initiative group) for years, and it has been wonderful. No one understands what LBD is like — except for the people who have it and their loved ones. There is a separate group meeting at the same time for those who have an early diagnosis of LBD; we think this is the only group of this type in the country, and Barry always attends.

  • Read the Lewy Body Dementia Association (LBDA) website, and use it as a resource for yourself and others. LBDA has a wealth of information about the disease, including a medication glossary that lists medication sensitivities and terms. Even Benadryl can cause problems in a person with LBD. And Haldol (haloperidol), a frequently prescribed antipsychotic, can be potentially fatal.

  • Expect to have to educate not only your friends and family but also physicians. I can't tell you the number of times doctors have told me that they've never heard of LBD and don't know what it is. During these times, I'm always glad I've brought extra LBDA brochures so that they can read about it from an authority and not have to take my word for it.

  • For ER trips and new doctor's appointments, make up a packet of helpful medical information. On one sheet, I list all medications and Barry's medical history.

  • If your loved one is having surgery, encourage the surgeon to work closely with the anesthesiologist to avoid drug interactions.

  • Aim for simplicity. Barry fell on the steps in our home, and I knew it was not a matter of if he would fall again but when, so we moved to a ranch house with a floor plan similar to our old house. I even had the walls of the new condo painted the same colors as our old house so it would look familiar. We love it.

  • Maintain friendships and stay active. When we looked for a new home, I told the realtor that we had to be within five miles of our Jewish Community Center and synagogue. We're even closer. Barry goes to the center's gym three times a week and attends their discussion groups. He even facilitates one of the groups. He has a great group of friends, and they enjoy being with one another.

  • Remember, you don't always have to be the bad guy. Dr. Heidebrink suggested a driving test; the Department of Motor Vehicles ended up cutting up Barry's driver's license. While this initially angered him, he now says it was a wise decision.

  • Encourage your loved ones to make decisions, too. When we had to get rid of our 14-year-old car, I asked Barry to choose the color of the new one and a vanity plate. It will be easy to find that car in any parking lot.

  • Don't sweat the small stuff. If it's not a safety issue, just let it go.

  • Encourage enjoyable pastimes. We now live in an area with tons of wildlife right outside our windows, and Barry really enjoys watching nature. Our daughter gave him a bird feeder for his birthday, and he finds it delightful.

  • Choose a doctor who will work with you. We have a great rapport with Dr. Heidebrink and are thankful to have her and her expertise.

  • Meet with an attorney who understands your situation to update powers of attorney, advance directives and any other papers affected by your new reality.

Our journey forward

The fluctuations of cognition present problems for both of us and are sometimes cause for tense moments between us. But for the most part, we strive to make the most of each day. A sense of humor is helping us maintain our life as a team. It also helps to get support from friends and family.

Barry and I joke that we fight Mr. Lewy every day, but because we realize that our marriage, family and friendships are of the utmost importance, so far we're winning.

More Articles About: Health Management Neurodegenerative Disorder Alzheimer's Disease Neurological (Brain) Conditions
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