1. < Caregivers: Dementia

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

Posted by Jen @jen26, Jul 10, 2021

Hello,
I have just joined the group. My husband was diagnosed with lbd 9 months ago at 51. I was wondering if anyone else has a loved one who was diagnosed at younger age than the norm. There seem to be unique issues, and I’ve been told it is usually faster progressing. Is anyone dealing with this?

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

nskinner5 | @nskinner5 | Aug 24, 2021
In reply to @larryh123 "Wow - that’s a long time!!! Thank you. So was the diagnosis one of dementia? What..." + (show)
@larryh123

Wow - that’s a long time!!! Thank you.
So was the diagnosis one of dementia? What flavor (I am a Lewy Body flavor)? My deal is the 5-8 year range after showing enough sign for diagnosis.However - the 20 year range is definitel not unheard of. I personally hope it is another form of dementia but all of the stuff we see is what LBD looks like.

Definitely look into other possibilities if you are doubting the original diagnosis. If you end up back with the same thing - no harm done. If something else is found - might lead to different treatment options.
Thanks again for taking care of your loved one for so many years. I cant imagine what that would be like. I can only tell you what it looks like from “in here”.

Peace
Larry H

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What is LBD?

REPLY
1 reply
nskinner5 | @nskinner5 | Aug 24, 2021
In reply to @larryh123 "Wow - that’s a long time!!! Thank you. So was the diagnosis one of dementia? What..." + (show)
@larryh123

Wow - that’s a long time!!! Thank you.
So was the diagnosis one of dementia? What flavor (I am a Lewy Body flavor)? My deal is the 5-8 year range after showing enough sign for diagnosis.However - the 20 year range is definitel not unheard of. I personally hope it is another form of dementia but all of the stuff we see is what LBD looks like.

Definitely look into other possibilities if you are doubting the original diagnosis. If you end up back with the same thing - no harm done. If something else is found - might lead to different treatment options.
Thanks again for taking care of your loved one for so many years. I cant imagine what that would be like. I can only tell you what it looks like from “in here”.

Peace
Larry H

Jump to this post

Thanks, Larry

REPLY
Larry | @larryh123 | Aug 24, 2021
In reply to @nskinner5 "What is LBD?" + (show)
@nskinner5

What is LBD?

Jump to this post

Sorry - it is a Lewy Body Dementia aka LBD or Dementia with Lewy bodies aka DLB.

REPLY
kellywilbanks | @kellywilbanks | Aug 24, 2021
In reply to @hitt "Yes, I participate in 2 support groups, both via zoom, one originates in Cleveland, OH and..." + (show)
@hitt

Yes, I participate in 2 support groups, both via zoom, one originates in Cleveland, OH and the other in the Rochester NY area. What I like about support groups is the odd but good combination of anonymity and kindred spirits. I can ask for advise, confide problems and feel like I'm not alone in the journey all with the benefit of a non-judgmental and safe environment.

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Hi. Would you share the link for the support zoom groups you are in ??

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2 replies
hitt | @hitt | Aug 24, 2021

The group leaders are:
Amanda anobrega@alz.org 1st Tuesday/month @ 6 pm
Grace knorrg@ccf.org 2nd Tuesday/month @ 1:30 pm

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farmer0233 | @farmer0233 | Aug 25, 2021
In reply to @colleenyoung "Hi Hitt, I want to add a belated welcome and appreciate your suggestion about joining a..." + (show)
@colleenyoung

Hi Hitt, I want to add a belated welcome and appreciate your suggestion about joining a support group. Has your support group moved online at this time? What do you find most useful about connecting with others?

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Support and find people in nursing home or have to have caregivers because of prescriptions drugs or over the years drug reaction.
The pharmacy didn't know the Xarelto blood thinner was on recall when I was on it. Now I won't be able to use any blood thinner, if blood clots, they will have to put a filter on my heart. As far as I know, they still having issues with Xarelto with brain blood clots, strokes, can't find where people are bleeding. Prayers

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1 reply
nskinner5 | @nskinner5 | Aug 28, 2021
In reply to @farmer0233 "Support and find people in nursing home or have to have caregivers because of prescriptions drugs..." + (show)
@farmer0233

Support and find people in nursing home or have to have caregivers because of prescriptions drugs or over the years drug reaction.
The pharmacy didn't know the Xarelto blood thinner was on recall when I was on it. Now I won't be able to use any blood thinner, if blood clots, they will have to put a filter on my heart. As far as I know, they still having issues with Xarelto with brain blood clots, strokes, can't find where people are bleeding. Prayers

Jump to this post

Are there other names for Xarelto?

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2 replies
Amanda Burnett | @amandaa | Aug 28, 2021
In reply to @nskinner5 "Are there other names for Xarelto?" + (show)
@nskinner5

Are there other names for Xarelto?

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Hi @nskinner5,
Yes there is. The generic name for Xarelto is Rivaroxaban. Are you taking it?

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1 reply
farmer0233 | @farmer0233 | Aug 28, 2021
In reply to @nskinner5 "Are there other names for Xarelto?" + (show)
@nskinner5

Are there other names for Xarelto?

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I don't think so. It's a very ex blood thinner. 1400.00 a month. My insurance was 150.00 month co payment...
The MD wouldn't take me off of blood thinner even though I had all the side effects. I took myself off. Then the thyroid medication same side effects.

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