Lewy Body Dementia at age 51: Anyone else with early onset LBD?

Thank you for your insight. I am hearing impaired (worn hearing aids since 4) and I understand being ashamed/embarrassed. With LBD, it is so different, with symptom severity constantly changing. It's clear cut to diagnose hearing loss while LBD and related things are very difficult to diagnose and treat.

Most people who ask me "what's wrong?" I think want to help. Its just hard because I want to protect my husband's dignity but at the same time, I am trying to figure out how to be a LBD caregiver and I could very much use help from friends and family.

I was mercilessly bullied in school for my deafness and my husband and I don't care what strangers say about either of us. We have helped countless friends and family who dealt with cancer, AD, ALS, suicide, cerebral palsy and many other conditions. When doing so, it was certainly helpful to understand the situation so we could help in the most meaningful ways and to know what to expect down the road.

LBD is really tough to explain. I was just wanting to know how others might have explained to caring friends and family who want to help but don't understand what LBD is.

My daughter, 15, suggested saying "he has a neurological condition. Thank you for your concern." - for close friends and family, not strangers or casual acquaintances.

It is a tough subject, it is very helpful joining this group because your experience and comments help in navigating this journey with grace.

Every day I pray a cure is found.

Carrie, that's a great question to a very common situation. When my husband was diagnosed, I was accepting of his disease and wanted him to be accepting as well. I have had epilepsy since I was very little and have always answered the question, "What's wrong with you?" No problem. So, one day, my husband wanted to go into a store by himself to ask a question. I encouraged him to start the conversation with "Excuse me, I have a question. But first, I should let you know I have the dementia, so I may ask you to repeat yourself." He came out of the store happy and excited. His question was answered, he found a new friend, and he realized he was accepted as he was. He still lets people know he has dementia although now he is losing his speech along with other skills. Test telling people who you know. This is a way of educating our society. You will be surprised at how many people know someone who has the exact same disease. There are lots of compassionate people in this world too. It's a GREAT conversation starter. 🙂

I like what your daughter suggested to say. The only thing I would add is "he has a neurological condition called Lewy Body Disease..." That will add to the education. I have had people ask more about the disease at that point. If they do, I tell them that proteins have gathered around the neurons in his brain consequently interrupting different actions. For my husband, the disease will end in Parkinson's disease. I direct those with LOTS more questions to the LBD Association website or hand out some of pamphlets that I have purchased through LBDA. Good luck to you and your family.

Just thinking of everyone in their Lewy journey. Looking at things a lot differently in life. Every little bit of understanding will work toward a solution.

Does anyone have any insight on how to cope with grief as a family? My kids and I go to family therapy but I want to know what has worked for others. I've started organizing a lot of ephemeral items like childhood, high school, and military mementos/photos so when our loved one isn't mobile, so we can do something enjoyable that doesn't require mobility and might help keep the mood positive and reflective.

We also got the Gold Star Veterans pass for federal lands and plan in using my sister's RV to visit bucket list places we planned to for retirement - now we just get to visit sooner and with our kids.

Anyone want to share experiences and expectations for the last stages of Lewy? What works, what doesn't, things that will make the best of it while we can?

My husband also had early onset alzheimers at 51. And oh my what a hard road. He passed away at 57. It does come on fast and it is mean. My husband was a Sunday School teacher, a deacon and sang specials in the choir. He was a master electrician. There was anything he could'nt do. He always was happy and had a smile that would light up a room and oh what laugh. I believe he serve the Lord thru his laughter. He also was a heck of softball player. I wish I could say something postive about the long good-bye but I can't. Alton was kick out of so many nursing homes. He became mean, a man I never had seen before. We reach a point where nursing home was no longer a option for us. He spent his last days in the State Mental hospital. What I can assure you is if you know Jesus he will walk that road even when you don't see it, know it, or feel it. I wish you the best. If I can help in any way I'm here.

Welcome, @donnathompson. Your experience will be most appreciate by fellow members here. It must've been so hard to see your kind, caring, and happy husband transform into a mean man that you no longer recognized as your husband's disposition. How did you cope with this and preserve your sense of self and the relationship you once had?

There are tests now that can diagnose what type of dementia you are dealing with. LBD has a brain scan and a skin puncture that, together, can accurately diagnose if it is LBD or not. Talk to a neurologist with a specialty in dementia.
Blessings to you. My husband has LBD (diagnosed a year ago) and my mom also has dementia. We all live together and each do our best every day. It can be really rough some days.

My husband had a 2 hour test for Dementia at a Dementia Clinic his doctor recommended, and the great result was there was no Alzheimer’s found.