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Joined: Wed Aug 06, 2008 6:38 pm
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Hi. This is my first post but I have been reading the forums for awhile. My computer took a nose dive and so I didn't get back to post.

My brother-in-law was diagnosed with Lewy Body Dementia on July 17, 2008. He passed away from aspiration pneumonia on August 5, 2008 at the age of 54. We had never heard of Lewy Body Dementia until he was diagnosed. He had been having severe behavioral problems for several years that we attributed to a brain aneurysm. His behavor got more and more bizarre. The doctors thought the aneurysm was leaking. He had coil embulization done in February of 2008. His memory was shot. He would be very alert in the early part of the day and by evening wouldn't know who we were.

His death was unexpected and tramatic. However we feel that it was a blessing compared to other people's stories. We are left with so many questions.

He and my sister have two children. A son almost 21 and a daughter almost 18. They are concerned that Lewy Body could be hereditary. We are puzzled at the early onset of the disease as we had read that it normally strikes people in the 55-85 age range. We believe he had the disease for years. He was in an accident caused by a blackout believed to be from his brain aneurysm and that's when he began having hallucinations. That was back in the early 90's.

Has anyone else experience early onset of this disease? Is there a forum or support group for young people? My niece is taking her father's death especially hard and is having trouble in school and other emotional issues as well.

I am sure I will have more questions but it's late and I'm tired and wanted to get this posted tonight.

I am glad to meet others who know and understand but I am sorry for the circumstances that bring us together.

Sincerely,

Lisa Myers


Mon Oct 06, 2008 3:56 am
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Lisa,
First let me welcome you to the LBDA forums, and let me extend my deepest comdolences to the family on the loss of your Brother in law. When I first started on our LBD path I thought mostly older people but as time marched on I am hearing more and more younger people, some in the 40's. I really don't know if there is a support group just for young people, the 2 groups I know are mixed ages. My son was 13 yrs old when his Dad passed and I do understand how hard it is. It has been a tough road for him, he is almost 17 yrs old now and doing extremly well, I know he misses his Dad everyday and I am sure he feels short changed in some ways.

The cause of Lewy body dementia is unknown and no specific risk factors have been identified. Cases have appeared among families but there is not a proven strong tendency for inheriting the disease. Studies suggest that adopting a healthy lifestyle (exercise, mental stimulation, nutrition) might delay age-associated dementias.


Mon Oct 06, 2008 7:05 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Lisa,

My condolences on the loss of your brother-in-law.

I'm always a little afraid to ask this question because typically the answer given is "we didn't know about this".... Did your BIL donate his brain upon death such that the LBD diagnosis could be confirmed? That's the *only* way to know if he had LBD. A more common dementia with "severe behavioral problems" in the middle-aged is FTD (frontotemporal dementia). LBD is often misdiagnosed.

I think if your BIL has siblings or parents with dementing illnesses, then there's reason for concern for his children. But if there's no other sign of dementia in the family, then there's less concern for something inherited.

In PD and AD, if the illness is early-onset, there's much higher likelihood of the patient having inherited the disorder. I'm not aware of any studies in LBD that would say whether this is true in LBD.

In our local support group, we have two people in their 50s with a clinical DX of LBD.

Your young relatives are welcome to join us here. I'm sure there's also an online grief group (though not specific to LBD) that they could join. I'd encourage the family to consider counseling for the children.

Finally, you might dig around the Well Spouse site's Kids Forum to see if anything there is appropriate for your young relatives:
www.wellspouse.org/kidsforums/

Good luck,
Robin


Mon Oct 06, 2008 2:50 pm
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Joined: Mon Sep 15, 2008 5:37 pm
Posts: 8
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My condolences as well. LBD is one of many forms of dementia and I discoverd that it is not well recognized by loved ones and professionals alike. The symptoms, 'stages', age determinants, genetics, etc. and especially treatment is completely different for each and every individual. It is extremely hard to diagnose because of the complexities and uncertainties and incongruities. This forum is a good place to understand and accept and find solace. Blessings to you and your family from here.


Tue Oct 07, 2008 8:52 pm
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